Publications by category
Books
Newman T, Moseley A, Tierney S, Ellis A (2005). Evidence Based Social Work: a guide for the perplexed. Lyme Regis, Russell House.
Journal articles
Hawton AJ (In Press). Evaluation of a home-based standing frame programme in people with progressive Multiple Sclerosis (SUMS): a pragmatic, multi-centre, randomised, controlled trial and cost-effectiveness analysis. Lancet Neurology
Hawton A, Goodwin E, Boddy K, Freeman J, Thomas S, Chataway J, Green C (In Press). Measuring the cost-effectiveness of treatments for people with Multiple Sclerosis: beyond quality-adjusted life-years. Multiple Sclerosis Journal
Goodwin EA, Hawton A, Green C (In Press). Using the Fatigue Severity Scale to inform healthcare decision-making in multiple sclerosis: mapping to three quality-adjusted life-year measures (EQ-5D-3L, SF-6D, MSIS-8D).
Health and Quality of Life Outcomes,
17(136).
Abstract:
Using the Fatigue Severity Scale to inform healthcare decision-making in multiple sclerosis: mapping to three quality-adjusted life-year measures (EQ-5D-3L, SF-6D, MSIS-8D)
Background: Fatigue has a major influence on the quality of life of people with multiple sclerosis. The Fatigue Severity Scale is a frequently used patient-reported measure of fatigue impact, but does not generate the health state utility values required to inform cost-effectiveness analysis, limiting its applicability within decision-making contexts. The objective of this study was to use statistical mapping methods to convert Fatigue Severity Scale scores to health state utility values from three preference-based measures: the EQ-5D-3L, SF-6D and Multiple Sclerosis Impact Scale-8D.
Methods: the relationships between the measures were estimated through regression analysis using cohort data from 1056 people with multiple sclerosis in South West England. Estimation errors were assessed and predictive performance of the best models were tested in a separate sample (n=352).
Results: for the EQ-5D and the Multiple Sclerosis Impact Scale-8D, the best performing models used a censored least absolute deviation specification, with Fatigue Severity Scale total score, age and gender as predictors. For the SF-6D, the best performing model used an ordinary least squares specification, with Fatigue Severity Scale total score as the only predictor.
Conclusions: Here we present algorithms to convert Fatigue Severity Scales scores into health state utility values based on three preference-based measures. These values may be used to estimate quality adjusted life-years for use in cost-effectiveness analyses and to consider the health-related quality of life of people with multiple sclerosis, thereby informing health policy decisions.
Abstract.
Goodwin E, Davey A, Green C, Hawton A (In Press). What drives differences in preferences for health states between patients and the public? a qualitative investigation of respondents' thought processes. Social Science and Medicine
Hawton AJ, Kandiyali R, Cabral C, Mytton J, Shilling V, Morris C, Ingram J (In Press). Working with patients and members of the public: informing health economics in child health research. Pharmacoeconomics Open
Creanor E, Hawton A (In Press). “I’m in a very good frame of mind”: a qualitative exploration of the experience of standing frame use in people with progressive multiple sclerosis. BMJ Open
Halliday BJ, Chatfield S, Cameron L, Hosking J, Shawe J, Hawton A, Hayward C, Carter K, Freeman JA (2022). Evaluating the Management of chronic Pelvic girdle Pain following pregnancy (EMaPP): study protocol for a randomised controlled feasibility trial to compare a customised pelvic orthosis with standard care. BMJ Open, 12(8).
Dhanda AD, Allende H, Allgar V, Andrade J, Bailey MP, Callaghan L, Cocking L, Goodwin E, Hawton A, Hayward C, et al (2022). Mental Imagery to Reduce Alcohol-related harm in patients with alcohol dependence and alcohol-related liver damaGE: the MIRAGE pilot trial protocol.
BMJ Open,
12(5).
Abstract:
Mental Imagery to Reduce Alcohol-related harm in patients with alcohol dependence and alcohol-related liver damaGE: the MIRAGE pilot trial protocol.
INTRODUCTION: in the UK, alcohol use is the main driver of chronic liver disease and each year results in over 1 million unplanned hospital admissions and over 25 000 deaths from alcohol-related liver disease (ArLD). The only effective treatment to prevent progression of liver damage is reducing or ceasing alcohol consumption. Psychological and pharmacological therapies for alcohol misuse are ineffective in patients with ArLD. Functional imagery training (FIT) is a novel psychological therapy that builds on motivational interviewing techniques with multisensory imagery. This pilot trial aims to test the feasibility of training alcohol liaison nurses to deliver FIT therapy and of recruiting and retaining patients with ArLD and alcohol dependence to a randomised trial of FIT and treatment as usual (TAU) versus TAU alone. METHODS AND ANALYSIS: This is a randomised pilot trial of FIT and TAU versus TAU alone in 90 patients with ArLD and alcohol dependence admitted to one of four UK centres. The primary objectives are to estimate rates of screening, recruitment, randomisation, retention, adherence to FIT/TAU and a preliminary assessment of the FIT intervention in the ArLD population. Data from the pilot study will be used to finalise the design of a definitive randomised controlled trial to assess the effectiveness and cost-effectiveness of FIT. The proposed primary outcome measure for the definitive trial is self-reported alcohol use assessed using timeline follow-back. ETHICS AND DISSEMINATION: Research ethics approval was given by the Yorkshire and Humber-Bradford Leeds Research Ethics Committee (reference: 21/YH/0044). Eligible patients will be approached and written informed consent obtained prior to participation. Results will be disseminated through peer-reviewed open access journals, international conferences and a lay summary published on the Trials Unit website and made available to patient groups. TRIAL REGISTRATION NUMBER: ISRCTN41353774.
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Frost AC, Golijani-Moghaddam N, Burge R, Dawson DL, Evangelou N, Roche B, Turton J, Hawton A, Law G, Rowan E, et al (2022). Usability and acceptability of a cognitive training intervention (SMART) for people with multiple sclerosis (MS): a prefeasibility formative evaluation. NIHR Open Research, 2
Goodwin E, Hawton A, Whitty JA, Green C (2021). Exploring the Factors that Influence Workforce Participation for People with Multiple Sclerosis: a Discrete Choice Experiment.
Journal of Occupational RehabilitationAbstract:
Exploring the Factors that Influence Workforce Participation for People with Multiple Sclerosis: a Discrete Choice Experiment
AbstractPurpose Research indicates that employment is beneficial for people with multiple sclerosis (MS). However, people with MS typically face reduced workforce participation compared to the general population. Using a discrete choice experiment (DCE) we explored which factors are most important in influencing employment choices of people with MS, and whether the relative importance of factors differs between subgroups. Methods Attributes and levels for the DCE were developed using a systematic literature review and public involvement techniques with people with MS. In an online survey, respondents were asked to choose between two hypothetical job scenarios described using six attributes. We used a large, national register (the UK MS Register), to recruit participants aged 18–64 years with a diagnosis of MS. Choice data were analysed using multinomial logit and latent class models. Results Analyses were based on responses from 2350 people with MS. The preferred model specification was a latent class model, with three classes of respondent. The relative importance of attributes varied between classes, with one giving the greatest weight to the impact of work on other aspects of their lives, the second to having supportive bosses and colleagues, and the third to job flexibility. The classes differed significantly in terms of age and gender, type of MS, and socio-economic status. Conclusions Significant heterogeneity was apparent among people with MS regarding the factors that influence their employment decisions. Attributes concerning the impact of work, attitudes in the workplace and job flexibility appear more influential than those concerning physical workplace adaptations.
Abstract.
Bjornstad G, Cuffe-Fuller B, Ukoumunne OC, Fredlund M, McDonald A, Wilkinson K, Lloyd J, Hawton A, Berry V, Tarrant M, et al (2021). Healthy Parent Carers: feasibility randomised controlled trial of a peer-led group-based health promotion intervention for parent carers of disabled children. Pilot and Feasibility Studies, 7
Hawton A, Boddy K, Kandiyali R, Tatnell L, Gibson A, Goodwin E (2021). Involving Patients in Health Economics Research: "The PACTS Principles".
Patient,
14(4), 429-434.
Abstract:
Involving Patients in Health Economics Research: "The PACTS Principles".
Discussion of public and patient involvement (PPI) in health economics (HE) research is growing. There is much literature on PPI principles and standards, but little specifically regarding involving patients in HE research. Here, we outline "PACTS", a set of principles, developed with a PPI group, for considering patient involvement in HE research. Planning: Involvement is best built in to research plans from the outset. This includes setting specific goals for involvement activities, and clearly communicating the background and purpose of involvement. Approach selection: We describe two main approaches to involvement-discussion-based and task-based. Discussion-based approaches are useful for generating broad insights and revealing "unknown unknowns". Task-based approaches offer a more focused means of shedding light on "known unknowns". Continuous involvement: Involving patients throughout the research process and across a range of projects helps build expertise for patients and insight for HE researchers. Team building: Meaningful involvement creates a shared sense of ownership of the research and, over time, helps to develop a team ethos, enhancing the positive impacts of involvement. Sensitivity: HE research can be perceived as technical and impersonal. Addressing this requires sensitivity, clarity, and an honest and open approach. There is increased recognition that patient contributors are experts at providing a "lived experience" perspective, in the way that clinicians are experts at providing an overview of conditions and HEs are experts in the methodology of their discipline. We hope these "PACTS Principles" complement existing PPI approaches and provide a useful foundation for health economists considering patient involvement.
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Marsden J, Pavlou M, Dennett R, Gibbon A, Knight-Lozano R, Jeu L, Flavell C, Freeman J, Bamiou DE, Harris C, et al (2020). Vestibular rehabilitation in multiple sclerosis: study protocol for a randomised controlled trial and cost-effectiveness analysis comparing customised with booklet based vestibular rehabilitation for vestibulopathy and a 12 month observational cohort study of the symptom reduction and recurrence rate following treatment for benign paroxysmal positional vertigo.
BMC Neurology,
20(1).
Abstract:
Vestibular rehabilitation in multiple sclerosis: study protocol for a randomised controlled trial and cost-effectiveness analysis comparing customised with booklet based vestibular rehabilitation for vestibulopathy and a 12 month observational cohort study of the symptom reduction and recurrence rate following treatment for benign paroxysmal positional vertigo
Abstract
. Background
. Symptoms arising from vestibular system dysfunction are observed in 49–59% of people with Multiple Sclerosis (MS). Symptoms may include vertigo, dizziness and/or imbalance. These impact on functional ability, contribute to falls and significant health and social care costs. In people with MS, vestibular dysfunction can be due to peripheral pathology that may include Benign Paroxysmal Positional Vertigo (BPPV), as well as central or combined pathology. Vestibular symptoms may be treated with vestibular rehabilitation (VR), and with repositioning manoeuvres in the case of BPPV. However, there is a paucity of evidence about the rate and degree of symptom recovery with VR for people with MS and vestibulopathy. In addition, given the multiplicity of symptoms and underpinning vestibular pathologies often seen in people with MS, a customised VR approach may be more clinically appropriate and cost effective than generic booklet-based approaches. Likewise, BPPV should be identified and treated appropriately.
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. Methods/ design
. People with MS and symptoms of vertigo, dizziness and/or imbalance will be screened for central and/or peripheral vestibulopathy and/or BPPV. Following consent, people with BPPV will be treated with re-positioning manoeuvres over 1–3 sessions and followed up at 6 and 12 months to assess for any re-occurrence of BPPV. People with central and/or peripheral vestibulopathy will be entered into a randomised controlled trial (RCT). Trial participants will be randomly allocated (1:1) to either a 12-week generic booklet-based home programme with telephone support or a 12-week VR programme consisting of customised treatment including 12 face-to-face sessions and a home exercise programme. Customised or booklet-based interventions will start 2 weeks after randomisation and all trial participants will be followed up 14 and 26 weeks from randomisation. The primary clinical outcome is the Dizziness Handicap Inventory at 26 weeks and the primary economic endpoint is quality-adjusted life-years. A range of secondary outcomes associated with vestibular function will be used.
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. Discussion
. If customised VR is demonstrated to be clinically and cost-effective compared to generic booklet-based VR this will inform practice guidelines and the development of training packages for therapists in the diagnosis and treatment of vestibulopathy in people with MS.
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. Trial registration
. ISRCTN Number: 27374299
. Date of Registration 24/09/2018
. Protocol Version 15 25/09/2019
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Abstract.
Freeman J, Hendrie W, Jarrett L, Hawton A, Barton A, Dennett R, Jones B, Zajicek J, Creanor S (2019). Assessment of a home-based standing frame programme in people with progressive multiple sclerosis (SUMS): a pragmatic, multi-centre, randomised, controlled trial and cost-effectiveness analysis.
The Lancet Neurology,
18(8), 736-747.
Abstract:
Assessment of a home-based standing frame programme in people with progressive multiple sclerosis (SUMS): a pragmatic, multi-centre, randomised, controlled trial and cost-effectiveness analysis
Background: People severely impaired with progressive multiple sclerosis spend much of their day sitting, with very few options to improve motor function. As a result, secondary physical and psychosocial complications can occur. Effective and feasible self-management strategies are needed to reduce sedentary behaviour and enhance motor function. In this study, we aimed to assess the clinical and cost effectiveness of a home-based, self-managed, standing frame programme. Methods: SUMS was a pragmatic, multicentre, randomised controlled superiority trial of people with progressive multiple sclerosis and severe mobility impairment, undertaken in eight centres from two regions in the UK. The study had assessor-blinded outcome assessments with use of clinician-rated and patient-rated measures at baseline, 20 weeks, and 36 weeks. After baseline assessment, participants were randomised (1:1) by computer-generated assignment to either a standing frame programme plus usual care or usual care alone. The intervention consisted of two home-based physiotherapy sessions (60 min each) to set up the standing frame programme, supported by six follow-up telephone calls (15 min per call). Participants were asked to stand for 30 min, three times per week over 20 weeks, and encouraged to continue in the longer term, although no further physiotherapy support was provided. The primary clinical outcome was motor function measured by the Amended Motor Club Assessment (AMCA) score at week 36, analysed in the modified intention-to-treat population (excluding only patients who were deemed ineligible after randomisation, those who withdrew from the trial and were unwilling for their previously collected data to be used, or those who did not provide baseline and week 36 measurements). A 9-point AMCA score change was considered clinically meaningful a priori. Adverse events were collected through a daily preformatted patient diary throughout the 36 weeks and analysed in the modified intention-to-treat population. An economic assessment established the resources required to provide the standing frame programme, estimated intervention costs, and estimate cost effectiveness. This trial is registered with the International Standard Randomised Controlled Trials, number ISRCTN69614598. Findings: Between Sept 16, 2015, and April 28, 2017, 285 people with progressive multiple sclerosis were screened for eligibility, and 140 were randomly assigned to either the standing frame group (n=71) or the usual care group (n=69). of these, 122 completed the primary outcome assessment (61 participants in both groups) for the modified intention-to-treat analysis. The use of the standing frame resulted in a significant increase in AMCA score compared with that for usual care alone, with a fully adjusted between-group difference in AMCA score at 36 weeks of 4·7 points (95% CI 1·9–7·5; p=0·0014). For adverse events collected through patient diaries, we observed a disparity between the two groups in the frequency of short-term musculoskeletal pain (486 [41%] of 1188 adverse events in the standing frame group vs 160 [22%] of 736 adverse events in the usual care group), which was potentially related to the intervention. The musculoskeletal pain lasted longer than 7 days in five participants (two in the standing frame group and three in the usual care group). No serious adverse events related to the study occurred. The standing frame group had a mean 0·018 (95% CI −0·014 to 0·051) additional quality-adjusted life-years (QALYs) compared with those of the usual care group, and the estimated incremental cost-per-QALY was approximately £14 700. Interpretation: the standing frame programme significantly increased motor function in people with severe progressive multiple sclerosis, although not to the degree that was considered a priori as clinically meaningful. The standing frame is one of the first physiotherapy interventions to be effective in this population. We suggest that the programme is feasible as a home-based, self-managed intervention that could be routinely implemented in clinical practice in the UK. Funding: UK National Institute of Health Research.
Abstract.
Limond J, Wade SL, Vickery PJ, Jeffery A, Warren FC, Hawton A, Smithson J, Ford T, Haworth S, Adlam A-LR, et al (2019). Clinical and cost-effectiveness of teen online problem-solving for adolescents who have survived an acquired brain injury in the UK: protocol for a randomised, controlled feasibility study (TOPS-UK).
BMJ Open,
9(8).
Abstract:
Clinical and cost-effectiveness of teen online problem-solving for adolescents who have survived an acquired brain injury in the UK: protocol for a randomised, controlled feasibility study (TOPS-UK).
INTRODUCTION: Paediatric acquired brain injury is a leading cause of mortality in children in the UK. Improved treatment during the acute phase has led to increased survival rates, although with life-long morbidity in terms of social and emotional functioning. This is the protocol for a feasibility randomised controlled trial with an embedded qualitative study and feasibility economic evaluation. If feasible, a later definitive trial will test the effectiveness and cost-effectiveness of an online intervention to enhance problem solving ability versus treatment as usual. METHODS AND ANALYSIS: Twenty-five adolescents and their families identified by primary or secondary care clinicians at participating UK National Health Service Trusts will be recruited and individually randomised in a 1:1 ratio to receive the online intervention or treatment as usual. Participants will be followed up by online questionnaires 17 weeks after randomisation to capture acceptability of the study and intervention and resource use data. Qualitative interviews will capture participants' and clinicians' experiences of the study. ETHICS AND DISSEMINATION: This study has been granted ethical approval by the South West-Exeter Research Ethics Committee (ref 17/SW/0083). Results will be disseminated via peer-reviewed publications and will inform the design of a larger trial. TRIAL REGISTRATION NUMBER: ISRCTN10906069.
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Hawton A, Green C, Goodwin E, Harrower T (2019). Health state utility values (QALY weights) for Huntington's disease: an analysis of data from the European Huntington's Disease Network (EHDN).
Eur J Health Econ,
20(9), 1335-1347.
Abstract:
Health state utility values (QALY weights) for Huntington's disease: an analysis of data from the European Huntington's Disease Network (EHDN).
BACKGROUND: Huntington's Disease (HD) is a hereditary neurodegenerative disorder which affects individuals' ability to walk, talk, think, and reason. Onset is usually in the forties, there are no therapies currently available that alter disease course, and life expectancy is 10-20 years from diagnosis. The gene causing HD is fully penetrant, with a 50% probability of passing the disease to offspring. Although the impacts of HD are substantial, there has been little report of the quality of life of people with the condition in a manner that can be used in economic evaluations of treatments for HD. Health state utility values (HSUVs), used to calculate quality-adjusted life-years (QALYs), are the metric commonly used to inform such healthcare policy decision-making. OBJECTIVES: the aim was to report HSUVs for HD, with specific objectives to use European data to: (i) describe HSUVs by demographic and clinical characteristics; (ii) compare HSUVs of people with HD in the UK with population norms; (iii) identify the relative strength of demographic and clinical characteristics in predicting HSUVs. METHODS: European Huntington's Disease Network REGISTRY study data were used for analysis. This is a multi-centre, multi-national, observational, longitudinal study, which collects six-monthly demographic, clinical, and patient-reported outcome measures, including the SF-36. SF-36 scores were converted to SF-6D HSUVs and described by demographic and clinical characteristics. HSUVs from people with HD in the UK were compared with population norms. Regression analysis was used to estimate the relative strength of age, gender, time since diagnosis, and disease severity (according to the Total Function Capacity (TFC) score, and the UHDRS's Motor score, Behavioural score, and Cognition score) in predicting HSUVs. RESULTS: 11,328 questionnaires were completed by 5560 respondents with HD in 12 European countries. Women generally had lower HSUVs than men, and HSUVs were consistently lower than population norms for those with HD in the UK, and dropped with increasing disease severity. The regression model significantly accounted for the variance in SF-6D scores (n = 1939; F [7,1931] = 120.05; p
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Author URL.
Bjornstad G, Wilkinson K, Cuffe-Fuller B, Fitzpatrick K, Borek A, Ukoumunne OC, Hawton A, Tarrant M, Berry V, Lloyd J, et al (2019). Healthy Parent Carers peer-led group-based health promotion intervention for parent carers of disabled children: protocol for a feasibility study using a parallel group randomised controlled trial design.
Pilot and Feasibility Studies,
5(1).
Abstract:
Healthy Parent Carers peer-led group-based health promotion intervention for parent carers of disabled children: protocol for a feasibility study using a parallel group randomised controlled trial design
Abstract
. Background
. Parent carers of disabled children are at increased risk of mental and physical health problems. They often experience challenges to maintaining good health which have implications for their well-being and their ability to care for their children. In response to these needs, researchers and parent carers developed the Healthy Parent Carers (HPC) programme. It is a peer-led, group-based intervention that promotes behaviours associated with health and well-being. The aims of this trial are to assess the acceptability of the HPC programme and the feasibility of its delivery in the community and to assess the feasibility and acceptability of the design of the definitive trial to evaluate the programme’s effectiveness and cost-effectiveness.
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. Methods
. We will establish six research sites and train facilitators to deliver the manualised intervention. Parent carers of children with special educational needs and disabilities will be individually randomised, stratified by group delivery site, to either take part in a group programme and online resources (intervention) or to receive access to the online resources only (control). Measures of mental health; well-being; health-related quality of life; health behaviours; patient activation; protective factors such as resilience, social connections, and practical support; and use of health care, social care, and wider societal resources will be collected before randomisation (baseline), immediately post-intervention, and 6 months later. Recruitment of participants, adherence to the programme, and the dose received will be assessed. Group sessions will be audio-recorded to evaluate the fidelity of delivery and participant engagement. Participants’ and facilitators’ feedback on the programme content and delivery, their experience, and the acceptability of the outcome measures and trial design will be collected through feedback forms, interviews, and focus groups.
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. Discussion
. This trial will assess whether the programme delivery and evaluative trial design are feasible, to inform whether to progress to a definitive randomised controlled trial to test the effectiveness and cost-effectiveness of the Healthy Parent Carers programme.
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. Trial registration
. ISRCTN, ISRCTN151144652, registered on 25 October 2018; ClinicalTrials.gov, NCT03705221, registered on 15 October 2018.
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Abstract.
Callaghan L, Thompson TP, Creanor SC, Quinn C, Senior J, Green C, Hawton AJ, Byng R, Wallace G, Sinclair J, et al (2019). Individual health trainers to support health and well-being for people under community supervision in the criminal justice system: the STRENGTHEN pilot RCT. Public Health Research, 7(20).
Freeman J, Hendrie W, Jarrett L, Hawton A-M, Barton A, Dennett R, Jones B, Marsden J, Zajicek J, Creanor S, et al (2019). Standing up in people with progressive multiple sclerosis (SUMS): a multi-centre randomised controlled trial evaluating a home-based standing frame programme. Physiotherapy, 105, e24-e25.
Goodwin E, Green C, Hawton A (2018). Health State Values Derived from People with Multiple Sclerosis for a Condition-Specific Preference-Based Measure: Multiple Sclerosis Impact Scale–Eight Dimensions–Patient Version (MSIS-8D-P).
Value in Health,
21(11), 1338-1345.
Abstract:
Health State Values Derived from People with Multiple Sclerosis for a Condition-Specific Preference-Based Measure: Multiple Sclerosis Impact Scale–Eight Dimensions–Patient Version (MSIS-8D-P)
Objective: in economic evaluation, health outcomes are commonly quantified using quality-adjusted life-years (QALYs) derived from the preferences of a sample of the general population. It can be argued that this approach ignores the preferences of people with experience of the condition, and that patient preferences have a place in the valuation of health outcomes. Here we report the estimation of a preference-based index for an existing condition-specific preference-based measure for multiple sclerosis (MS), the MSIS-8D, based on the preferences of people with MS. Study design: Internet time trade-off (TTO) survey, eliciting preferences from people with MS. Methods: We elicited preferences from a sample of people with MS (N = 1635) across 169 MSIS-8D health states, using the TTO technique. We fitted ordinary least squares and random effects models to the survey data to estimate values for all health states described by the MSIS-8D. Results: the new patient-derived index (the MSIS-8D-P) provides values ranging from 0.893 for the best possible health state to 0.138 for the worst state. The MSIS-8D-P exhibits good discriminative validity, identifying expected significant differences between groups based on presence/absence of MS, type of MS, and duration since diagnosis. Conclusions: the MSIS-8D-P index of values for MS-specific health states provides an opportunity to estimate QALYs based on patient preferences, for use in economic evaluations of treatments for MS. More broadly, it adds to the methods and data available to consider the health-related quality of life of people with MS to inform resource allocation and individual-level decisions regarding treatments for MS.
Abstract.
Thompson TP, Callaghan L, Hazeldine E, Quinn C, Walker S, Byng R, Wallace G, Creanor S, Green C, Hawton A, et al (2018). Health trainer-led motivational intervention plus usual care for people under community supervision compared with usual care alone: a study protocol for a parallel-group pilot randomised controlled trial (STRENGTHEN).
BMJ Open,
8(6).
Abstract:
Health trainer-led motivational intervention plus usual care for people under community supervision compared with usual care alone: a study protocol for a parallel-group pilot randomised controlled trial (STRENGTHEN).
INTRODUCTION: People with experience of the criminal justice system typically have worse physical and mental health, lower levels of mental well-being and have less healthy lifestyles than the general population. Health trainers have worked with offenders in the community to provide support for lifestyle change, enhance mental well-being and signpost to appropriate services. There has been no rigorous evaluation of the effectiveness and cost-effectiveness of providing such community support. This study aims to determine the feasibility and acceptability of conducting a randomised trial and delivering a health trainer intervention to people receiving community supervision in the UK. METHODS AND ANALYSIS: a multicentre, parallel, two-group randomised controlled trial recruiting 120 participants with 1:1 individual allocation to receive support from a health trainer and usual care or usual care alone, with mixed methods process evaluation. Participants receive community supervision from an offender manager in either a Community Rehabilitation Company or the National Probation Service. If they have served a custodial sentence, then they have to have been released for at least 2 months. The supervision period must have at least 7 months left at recruitment. Participants are interested in receiving support to change diet, physical activity, alcohol use and smoking and/or improve mental well-being. The primary outcome is mental well-being with secondary outcomes related to smoking, physical activity, alcohol consumption and diet. The primary outcome will inform sample size calculations for a definitive trial. ETHICS AND DISSEMINATION: the study has been approved by the Health and Care Research Wales Ethics Committee (REC reference 16/WA/0171). Dissemination will include publication of the intervention development process and findings for the stated outcomes, parallel process evaluation and economic evaluation in peer-reviewed journals. Results will also be disseminated to stakeholders and trial participants. TRIAL REGISTRATION NUMBERS: ISRCTN80475744; Pre-results.
Abstract.
Author URL.
Green C, Goodwin E, Hawton A (2017). "naming and Framing": the Impact of Labeling on Health State Values for Multiple Sclerosis.
Medical Decision Making,
37(6), 703-714.
Abstract:
"naming and Framing": the Impact of Labeling on Health State Values for Multiple Sclerosis
Introduction. Health state valuation is a key input in many economic evaluations that inform resource allocation across competing healthcare interventions. Empirical evidence has shown that, in preference elicitation surveys, respondents may value a health state differently if they are aware of the condition causing it ('labeling effects'). This study investigates the impact of including a multiple sclerosis (MS) label for valuation of MS health states. Methods. Health state values for MS were elicited using two internet-based surveys in representative samples of the UK population (n = 1702; n = 1788). In one survey respondents were not informed that health states were caused by MS. The second survey included a condition label for MS. Surveys were identical in all other ways. Health states were described using a MS-specific eight-dimensional classification system (MSIS-8D), and the time trade-off valuation technique was used. Differences between values for labeled and unlabeled states were assessed using descriptive statistics and multivariate regression methods. Results. Adding a MS condition label had a statistically significant effect on mean health state values, resulting in lower values for labeled MS states v. unlabeled states. The data suggest that the MS label had a more significant effect on values for less severe states, and no significant effect on values for the most severe states. The inclusion of the MS label had a differential impact across the dimensions of the MSIS-8D. Across the MSIS-8D, predicted values ranged from 0.079 to 0.883 for unlabeled states, and 0.066 to 0.861 for labeled states. Conclusion. Differences reported in health state values, using labeled and unlabeled states, demonstrate that condition labels affect the results of valuation studies, and can have important implications in decision-analytic modelling and in economic evaluations.
Abstract.
Hawton AJ, Goodwin E, Boddy K, Tatnell L (2017). Involving members of the public in health economics research: Insights from selecting health states for valuation to estimate quality-adjusted life-year (QALY) weights. Applied Health Economics and Health Policy
Hawton AJ, Round J (2017). Statistical alchemy: conceptual validity and mapping to generate health state utility values. PharmacoEconomics - Open, DOI 10.1007/s41669-017-0027-2
Hawton A, Green C (2016). Health Utilities for Multiple Sclerosis. Value in Health, 19(4), 460-468.
Goodwin V, Paudyal P, Perry M, Day N, Hawton A, Gericke C, Ukoumunne O, Byng R (2016). Implementing a patient-initiated review system for people with rheumatoid arthritis: a prospective, comparative service evaluation.
Journal of Evaluation in Clinical PracticeAbstract:
Implementing a patient-initiated review system for people with rheumatoid arthritis: a prospective, comparative service evaluation
Background
The management of rheumatoid arthritis (RA) usually entails regular hospital reviews with a specialist often when the patient is well rather than during a period of exacerbation. An alternative approach where patients initiate appointments when they need them can improve patient satisfaction and resource use whilst being safe. This service evaluation reports a system wide implementation of a patient-initiated review appointment system called Direct Access (DA) for people with RA. The aim was to establish the impact on patient satisfaction of the new system versus usual care as well as evaluate the implementation processes.
Method
As all patients could not start on the new system at once, in order to manage the implementation, patients were randomly allocated to DA or to usual care. Instead of regular follow-up appointments, DA comprised an education session and access to a nurse-led telephone advice line where appointments could be accessed within two weeks. Usual care comprised routine follow-ups with the specialist. Data were collected on patient satisfaction, service use and outcomes of any contact to the advice line.
Results
Three hundred and eleven patients with RA were assessed as being suitable for DA. In terms of patient satisfaction, between-group differences were found in favour of DA for accessibility and convenience, ease of contacting the nurse and overall satisfaction with the service. Self-reported visits to the GP were also significantly lower. DA resulted in a greater number of telephone contacts (incidence rate ratio = 1.69; 95% CI 1.07 to 2.68). Hospital costs of the two different service models were similar. Mean waiting time for an appointment was 10.8 days
Conclusion
This service evaluation found that DA could be implemented and demonstrated patient benefit in a real world setting. Further research establishing the broader cost-consequences across the whole patient pathway would add to our findings.
Abstract.
Hawton AJ, Green C (2016). Multiple sclerosis: relapses, resource use, and costs.
Eur J Health Econ,
17(7), 875-884.
Abstract:
Multiple sclerosis: relapses, resource use, and costs.
BACKGROUND: Relapses can have a major impact on the lives of people with multiple sclerosis (MS), and yet relapse-related healthcare costs have received little attention. This has limited cost-effectiveness analyses of treatments for MS and hampered decision-making regarding the funding of MS healthcare services. OBJECTIVE: to describe health/social care resource use and costs according to the frequency, severity, and endurance of MS relapses. METHODS: Data from the prospective, longitudinal UK South West Impact of Multiple Sclerosis cohort were used. A total of 11,800 questionnaires from 1441 people with MS were available, including data on relapses, contacts with health/social care professionals, and other MS-related resource use. RESULTS: the mean (SD) 6-monthly MS-related health/social care cost for individuals who reported a relapse was £519 (£949), compared to £229 (£366) for those who had not did report a relapse. Care costs varied widely dependent on the characteristics of the relapse. The mean (SD) cost when a relapse was not treated with steroids was £381 (£780), whilst the equivalent cost was £3579 (£1727) when a relapse resulted in hospitalization. CONCLUSIONS: the impact of relapses on health and social care resources and costs differs according to their frequency, length, and severity. The data provided here can be used in cost-effectiveness analyses and to inform decision-making regarding healthcare provision for people with this condition.
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Author URL.
Hawton A, Goodwin E (2014). Patients and health economists: working together to build a better research base for making decisions about the funding of treatments for MS.
QUALITY OF LIFE RESEARCH,
23, 15-15.
Author URL.
Hawton A, Shearer J, Goodwin E, Green C (2013). Squinting through layers of fog: assessing the cost effectiveness of treatments for multiple sclerosis.
Appl Health Econ Health Policy,
11(4), 331-341.
Abstract:
Squinting through layers of fog: assessing the cost effectiveness of treatments for multiple sclerosis.
BACKGROUND: Multiple sclerosis (MS) is a chronic neurological disorder, which can lead to a wide range of disabling symptoms. The condition has a significant negative impact on health-related quality of life, and the economic cost of the disease is substantial. Decision-making regarding treatments for MS, and particularly disease-modifying interventions, has been hampered by limitations in the data and evaluative framework for assessing their cost effectiveness. Whilst attention has been drawn to these weaknesses, the scope and extent of the challenges in this area have not been fully set out to date. AIMS: the aims of this review were to identify all published economic evaluations of MS treatments in order to provide a statement on the scope and characteristics of the cost-effectiveness literature in the area of MS and to provide a basis on which to suggest practical recommendations for future research to aid decision-making. METHOD: a systematic search was undertaken to identify economic evaluations of treatments for people with MS published in English up to December 2011. Included studies were reviewed to provide a comprehensive description of the characteristics of the currently applied framework for cost effectiveness in MS, with the following key methodological components considered: methods for estimating disease progression, the impact of treatment and health outcomes and costs associated with MS. RESULTS: Thirty-seven papers were identified. Most studies (n = 32) were model-based evaluations of disease-modifying drugs. All models used disability stages defined by the Expanded Disability Status Scale (EDSS) to characterise disease progression, and the impact of treatment was based on data from clinical trials and epidemiological cohorts. Outcomes were primarily based on quality-adjusted life-years (n = 22) and/or related to relapse (n = 14). Estimates for health state utility values (HSUVs), costs and the impact of treatment on the course of MS varied considerably between studies, depending on the data sources used and the methods used to incorporate data into models. The scope of the studies was narrow, with a sparsity of economic evaluations of symptomatic and/or non-pharmacological interventions; exclusion of direct non-medical, indirect and informal care costs from analyses; and a narrow view of the potential impact of treatment, concentrating on disability, according to the EDSS, and relapses. In addition, there were issues concerning how to capture losses in HSUVs due to relapses in a way that reflects their salience to people with MS, the wide variation in costs and outcomes from different sources and from potentially unrepresentative samples and modelling disease progression from natural history data from over 30 years ago. CONCLUSION: There are many complexities for those designing and reporting cost-effectiveness studies of treatments for MS. Analysts, and ultimately decision makers, face multiple data and methodological challenges. Policy makers, technology developers, clinicians, patients and researchers need to acknowledge and address these challenges and to consider recommendations that will improve the current scenario. There is a need for further research that can constructively inform decision-making regarding the funding of treatments for MS.
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Hawton A, Green C, Telford CJ, Wright DE, Zajicek JP (2012). The use of multiple sclerosis condition-specific measures to inform health policy decision-making: mapping from the MSWS-12 to the EQ-5D.
Mult Scler,
18(6), 853-861.
Abstract:
The use of multiple sclerosis condition-specific measures to inform health policy decision-making: mapping from the MSWS-12 to the EQ-5D.
BACKGROUND: Walking impairment has a major influence on the quality of life of people with multiple sclerosis (MS). The Multiple Sclerosis Walking Scale (MSWS-12) assesses the impact of MS on walking ability from the patient's perspective, but in its current form, is not amenable for use in many policy decision-making settings. OBJECTIVES: Statistical 'mapping' methods were used to convert MSWS-12 scores to EQ-5D health state values. METHODS: the relationship between the measures was estimated using cohort data from people with MS in South West England. Regression analyses were conducted, estimation errors assessed, and predictive performance of the best models tested using longitudinal data. RESULTS: Model performance was in line with that of other mapping studies, with the best-performing models being an ordinary least squares (OLS) model using MSWS-12 item scores, and an OLS model using the total MSWS-12 score and its squared term. CONCLUSIONS: a process has been described whereby data from a patient-reported outcome measure (MSWS-12) can be converted to (EQ-5D) health state values. These values may be used to consider the health-related quality of life of people with MS, to estimate quality adjusted life-years for use in effectiveness and cost-effectiveness analyses, and to inform health policy decisions.
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Trappes-Lomax T, Hawton A (2012). The user voice: Older people's experiences of reablement and rehabilitation.
Journal of Integrated Care,
20(3), 181-194.
Abstract:
The user voice: Older people's experiences of reablement and rehabilitation
Purpose - This paper aims to report verbatim the voices of older people describing their experiences of rehabilitation services in community hospitals and local authority short-term residential units followed by "usual care" services at home. It aims to contribute directly to the implementation of the DH Section 256 "reablement guidance". Design/methodology/approach - the paper is a qualitative study, based on semi-structured face-to-face interviews in 2002/3, with 42 participants (mean age 81.4 years) using interpretative phenomenological analysis (IPA). Findings - Four main themes emerged from users' comments: the complexity of rehabilitative need, the influence of the setting, the role of the staff and the availability of reablement support back at home. Research limitations/implications - Qualitative studies have limited generalisability, but these findings are consistent both with other studies of user experience and with earlier related evidence about assessment, institutionalisation and psychological factors. Practical implications - the findings clearly demonstrate changing rehabilitative needs along the care pathway, with implications for commissioners and providers of reablement services. The findings bring a user perspective to current debates about the integration of services and the use of pooled budgets. Originality/value - Effective reablement is critically dependent on service users' co-operation and motivation. It therefore needs to be highly responsive to their needs and views. This study offers specific user views about their experiences in different settings and at different stages of reablement, together with their ideas for how it might work better. The data are analysed within a single framework, offering an example of the type of local evaluation currently sought by the Department of Health. © Emerald Group Publishing Limited.
Abstract.
Hawton A, Green C, Telford C, Zajicek J, Wright D (2012). Using the Multiple Sclerosis Impact Scale to estimate health state utility values: mapping from the MSIS-29, version 2, to the EQ-5D and the SF-6D.
Value Health,
15(8), 1084-1091.
Abstract:
Using the Multiple Sclerosis Impact Scale to estimate health state utility values: mapping from the MSIS-29, version 2, to the EQ-5D and the SF-6D.
OBJECTIVES: the 29-item Multiple Sclerosis Impact Scale (MSIS-29) is a psychometrically validated patient-reported outcome measure increasingly used in trials of treatments for multiple sclerosis. However, it is non-preference-based and not amenable for use across policy decision-making contexts. Our objective was to statistically map from the MSIS-29, version 2, to the EuroQol five-dimension (EQ-5D) and the six-dimension health state short form (derived from short form 36 health survey) (SF-6D) to estimate algorithms for use in cost-effectiveness analyses. METHODS: the relationships between MSIS-29, version 2, and EQ-5D and SF-6D scores were estimated by using data from a cohort of people with multiple sclerosis in South West England (n=672). Six ordinary least squares (OLS), Tobit, and censored least adjusted deviation (CLAD) regression analyses were conducted on estimation samples, including the use of subscale and item scores, squared and interaction terms, and demographics. Algorithms from models with the smallest estimation errors (mean absolute error [MAE], root mean square error [RMSE], normalized RMSE) were then assessed by using separate validation samples. RESULTS: Tobit and CLAD. For the EQ-5D, the OLS models including subscale squared terms, and item scores and demographics performed comparably (MAE 0.147, RMSE 0.202 and MAE 0.147, RMSE 0.203, respectively), and estimated scores well up to 3 years post-baseline. Estimation errors for the SF-6D were smaller (OLS model including squared terms: MAE 0.058, RMSE 0.073; OLS model using item scores and demographics: MAE 0.059, RMSE 0.08), and the errors for poorer health states found with the EQ-5D were less pronounced. CONCLUSIONS: We have provided algorithms for the estimation of health state utility values, both the EQ-5D and SF-6D, from scores on the MSIS-29, version 2. Further research is now needed to determine how these algorithms perform in practical decision-making contexts, when compared with observed EQ-5D and SF-6D values.
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Dickens AP, Richards SH, Hawton A, Taylor RS, Greaves CJ, Green C, Edwards R, Campbell JL (2011). An evaluation of the effectiveness of a community mentoring service for socially isolated older people: a controlled trial.
BMC Public Health,
11Abstract:
An evaluation of the effectiveness of a community mentoring service for socially isolated older people: a controlled trial.
BACKGROUND: Social isolation affects a significant proportion of older people and is associated with poor health outcomes. The current evidence base regarding the effectiveness of interventions targeting social isolation is poor, and the potential utility of mentoring for this purpose has not previously been rigorously evaluated. The purpose of this study was to examine the effectiveness of a community-based mentoring service for improving mental health, social engagement and physical health for socially isolated older people. METHODS: This prospective controlled trial compared a sample of mentoring service clients (intervention group) with a matched control group recruited through general practice. One hundred and ninety five participants from each group were matched on mental wellbeing and social activity scores. Assessments were conducted at baseline and at six month follow-up. The primary outcome was the Short Form Health Survey v2 (SF-12) mental health component score (MCS). Secondary outcomes included the SF-12 physical health component score (PCS), EuroQol EQ-5D, Geriatric Depression Score (GDS-10), social activity, social support and morbidities. RESULTS: We found no evidence that mentoring was beneficial across a wide range of participant outcomes measuring health status, social activity and depression. No statistically significant between-group differences were observed at follow-up in the primary outcome (p = 0.48) and in most secondary outcomes. Identifying suitable matched pairs of intervention and control group participants proved challenging. CONCLUSIONS: the results of this trial provide no substantial evidence supporting the use of community mentoring as an effective means of alleviating social isolation in older people. Further evidence is needed on the effectiveness of community-based interventions targeting social isolation. When using non-randomised designs, there are considerable challenges in the recruitment of suitable matches from a community sample. TRIAL REGISTRATION: SCIE Research Register for Social Care 105923.
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Hawton A, Green C, Dickens AP, Richards SH, Taylor RS, Edwards R, Greaves CJ, Campbell JL (2011). The impact of social isolation on the health status and health-related quality of life of older people.
Qual Life Res,
20(1), 57-67.
Abstract:
The impact of social isolation on the health status and health-related quality of life of older people.
PURPOSE: to investigate for socially isolated older people, and older people at risk of social isolation: (1) health status and health-related quality of life (HRQL); (2) the relationship between social isolation and health status/HRQL; (3) the relationship between two alternative measures of health status/HRQL. METHODS: Older people at risk of social isolation (n = 393) completed the EQ-5D and the SF-12. Multiple regression analyses were performed to examine the relationship between levels of social isolation and health status/HRQL, controlling for demographic/clinical characteristics. The agreement between EQ-5D and SF-6D (SF-12) scores was explored using descriptive psychometric techniques. RESULTS: Health status and health state values were much lower than UK general population age-matched norms. After controlling for depression, physical co-morbidities, age, gender, living alone status, employment and accommodation, social isolation was significantly associated, to a degree that was clinically relevant, with EQ-5D DSI, SF-6D (SF-12) and SF-12 MCS scores. The potential for ceiling effects on the EQ-5D with this population was identified. CONCLUSION: This work highlights the burden that social isolation may have on the health and well-being of older people. The potential HRQL gains from addressing social isolation may be considerable, with those at risk of social isolation also a key target group.
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Mbugua Gitau G, Liversedge H, Goffey D, Hawton A, Liversedge N, Taylor M (2009). The influence of maternal age on the outcomes of pregnancies complicated by bleeding at less than 12 weeks.
Acta Obstet Gynecol Scand,
88(1), 116-118.
Abstract:
The influence of maternal age on the outcomes of pregnancies complicated by bleeding at less than 12 weeks.
The effect of maternal age on the outcome of threatened miscarriage after ultrasound has confirmed fetal heart (FH) pulsation was assessed. At a university teaching hospital, 138 women presenting with bleeding before 12 weeks' gestation were followed up until delivery or pregnancy loss. Those with multiple or ectopic pregnancy, social termination of pregnancy, assisted conception and temporary residence were excluded. Outcome measures were pregnancy loss, fetal abnormalities, preterm delivery, low birthweight and cesarean delivery. Age over 35 years was significantly associated with reduced live-birth and increased miscarriage rates. Women over 35 years of age had higher cesarean section and pregnancy loss rates than the younger women. The combination of bleeding in early pregnancy and advanced age increases risk of pregnancy loss even after ultrasound has confirmed FH pulsation.
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Wyatt K, Carter M, Mahtani V, Barnard A, Hawton A, Britten N (2008). The impact of consumer involvement in research: an evaluation of consumer involvement in the London Primary Care Studies Programme.
Fam Pract,
25(3), 154-161.
Abstract:
The impact of consumer involvement in research: an evaluation of consumer involvement in the London Primary Care Studies Programme.
BACKGROUND: the value of consumer involvement in health services research is widely recognized. While there is a growing body of evidence about the principles of good consumer involvement, there is little research about the effect that involvement can have on the research. This evaluation assessed the level and impact of consumer involvement in the London Primary Care Studies Programme (LPCSP), all of whose individual projects had to demonstrate substantial involvement as a condition of funding. OBJECTIVE: to evaluate consumer involvement in the LPSCP and understand what impact consumers had on the research process and outcomes. METHODS: a multi-method case study approach was undertaken, using survey techniques, interviews, focus groups, observation and scrutiny of written documents. The overall data set comprised 61 questionnaires, 44 semi-structured interviews, 2 focus groups and 15 hours of observation of meetings. Eleven primary care-based research projects which together made up the LPCSP. RESULTS: an in-depth description of consumer involvement in the Programme was produced. Nine projects had consumers as co-applicants, four projects had been completed before the evaluation began and one was still ongoing at the time of the evaluation. of the eight projects which have produced final reports, all met their aims and objectives. Consumers had had an additional impact in the research, in the initial design of the study, in recruitment of the research subjects, in developing data collection tools, in collecting the data, in analysis and disseminating the findings. CONCLUSIONS: Consumer involvement in National Health Service research is a relatively recent policy development and while there is an increasing amount of literature about how and why consumers should be involved in research, there is less evidence about the impact of such involvement. This evaluation provides evidence about the impact that consumers have not only on the research process but also on the outcomes of the research.
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Barber C, Powell R, Ellis A, Hewett J (2007). Comparing pain control and ability to eat and drink with standard therapy vs Gelclair: a preliminary, double centre, randomised controlled trial on patients with radiotherapy-induced oral mucositis.
Support Care Cancer,
15(4), 427-440.
Abstract:
Comparing pain control and ability to eat and drink with standard therapy vs Gelclair: a preliminary, double centre, randomised controlled trial on patients with radiotherapy-induced oral mucositis.
UNLABELLED: GOAL OF THE WORK: Oral mucositis (OM) is a functionally destructive complication of aggressive head and neck cancer therapy, often resulting in intense pain, an inability to eat and drink and secondary malnutrition and dehydration. The barrier-forming properties of Gelclair have shown promise in relieving such symptoms. The aim of this randomised-controlled trial was to evaluate the efficacy of Gelclair, as compared to standard therapy, as a means of short-term symptom control for patients suffering from radiotherapy-induced OM. MATERIALS AND METHODS: Twenty patients, with radiotherapy-induced OM seen in two oncology centres in Devon, were randomised to either standard therapy (Sucralfate and Mucaine) or Gelclair and assessed over 24 h. Both treatments were taken four times during the 24-h period, 30 min before meals. MAIN RESULTS: No significant difference was found between the Gelclair and standard therapy arms in terms of general pain (F = 1.512, df = 1, 17, ns). There did appear to be a trend towards pain improvement initially after the use of Gelclair, but this did not last for the full 24-h assessment period. There was no significant reduction in pain on speaking (F = 0.261, df = 1, 17, ns) nor an improvement in capacity to eat and drink, although the effects of standard therapy did appear to last longer than the Gelclair. CONCLUSION: This study indicates that Gelclair is no more effective than current standard practice in relieving the pain associated with radiotherapy-induced OM. Nevertheless, observations from this preliminary study warrant further investigation, with a view to shaping the way forward for head and neck cancer practice on a national level.
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Trappes-Lomax T, Ellis A, Fox M, Taylor R, Power M, Stead J, Bainbridge I (2006). Buying Time I: a prospective, controlled trial of a joint health/social care residential rehabilitation unit for older people on discharge from hospital.
Health Soc Care Community,
14(1), 49-62.
Abstract:
Buying Time I: a prospective, controlled trial of a joint health/social care residential rehabilitation unit for older people on discharge from hospital.
The study's objective was to determine the effectiveness of a joint NHS/Social Services rehabilitation unit (a form of intermediate care) for older people on discharge from community hospital, compared with 'usual' community services. This was a controlled clinical trial in a practice setting. The intervention was 6 weeks in a rehabilitation unit where individuals worked with care/rehabilitation assistants and occupational therapists to regain independence. Controls went home with the health/social care services they would ordinarily receive. Participants were from two matched geographical areas in Devon: one with a rehabilitation unit, one without. Recruitment was from January 1999 to October 2001 in 10 community hospitals. Study eligibility was assessed using the unit's inclusion/exclusion criteria: 55 years or older and 'likely to benefit from a short-term rehabilitation programme' ('potential to improve', 'realistic and achievable goals' and 'motivation to participate'). Ninety-four people were recruited to the intervention and 112 to the control. The mean (standard deviation) age was 81.8 (8.0) years. The main outcome measure was prevention of institutionalisation assessed by the number of days from baseline interview to admission to residential/nursing care or death ('survival-at-home time'). Secondary outcome measures were time to hospital re-admission over 12 months, quality of life and coping ability. There were no significant differences between the groups on any outcome measure. Adjusted hazard ratio (95% CI) for 'survival-at-home time' was 1.13 (0.70-1.84), and 0.84 (0.53-1.33) for 'time to hospital re-admission'. However, attending the unit was associated with earlier hospital discharge. Median (interquartile range) days in hospital for the intervention graph was 27 (20, 40), and for the control graph was 35 (22, 47) (U = 4234, P = 0.029). These findings suggest a stay in a rehabilitation unit is no more effective than 'usual' care at diverting older people from hospital/long-term care. Alternative service configurations may be as effective, having implications for tailoring services more specifically to individual need and/or user preferences. However, the unit did appear to facilitate earlier discharges from community hospital.
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Ellis A, Trappes-Lomax T, Fox M, Taylor R, Power M, Stead J, Bainbridge I (2006). Buying time II: an economic evaluation of a joint NHS/Social Services residential rehabilitation unit for older people on discharge from hospital.
Health Soc Care Community,
14(2), 95-106.
Abstract:
Buying time II: an economic evaluation of a joint NHS/Social Services residential rehabilitation unit for older people on discharge from hospital.
The study's aim was to investigate the cost-effectiveness of an NHS/Social Services short-term residential rehabilitation unit (a form of intermediate care) for older people on discharge from community hospital compared with 'usual' community services. An economic evaluation was conducted alongside a prospective controlled trial, which explored the effectiveness of a rehabilitation unit in a practice setting. The aim of the unit was to help individuals regain independence. A matched control group went home from hospital with the health/social care services they would ordinarily receive. The research was conducted in two matched geographical areas in Devon: one with a rehabilitation unit, one without. Participants were recruited from January 1999 to October 2000 in 10 community hospitals and their eligibility determined using the unit's strict inclusion/exclusion criteria, including 55 years or older and likely to benefit from a short-term rehabilitation programme: potential to improve, realistic, achievable goals, motivation to participate. Ninety-four people were recruited to the intervention and 112 to the control group. Details were collated of the NHS and Social Services resources participants used over a 12-month follow-up. The cost of the resource use was compared between those who went to the unit and those who went straight home. Overall, costs were very similar between the two groups. Aggregated mean NHS/Social Services costs for the 12 months of follow-up were pound 8542.28 for the intervention group and pound 8510.68 for the control. However, there was a clear 'seesaw' effect between the NHS and Social Services: the cost of the unit option fell more heavily on Social Services (pound 5011.56, whereas pound 3530.72 to the NHS), the community option more so on the NHS (pound 5146.74, whereas pound 3363.94 to Social Services). This suggests that residential rehabilitation for older people is no more cost-effective over a year after discharge from community hospital than usual community services. The variability in cost burden between the NHS and Social Services has implications for 'who pays' and being sure that agencies share both pain and gain.
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Sweeney G, Ellis A (2003). Making an impact: exploring delegates' perceptions of the clinical governance development programme. Clinical Governance: an International Journal, 8(3), 262-270.
Trappes-Lomax T, Ellis A (2003). Real life research: Bridging the gap between research and practice. Journal of Integrated Care, 11(4), 17-27.
Trappes-Lomax T, Ellis A, Fox M (2002). Real life research: Building an evidence base for intermediate care. Managing Community Care, 10(6), 15-21.
Trappes-Lomax T, Ellis A (2001). Real life research: Designing and implementing a study on the health/social care interface. Managing Community Care, 9(3), 22-30.
Trappes-Lomax T, Ellis A, Fox M (2001). Real life research: the ups and sowns of an intermediate care study. Managing Community Care, 9(5), 18-24.
Burgoyne CB, Routh DA, Ellis A (1999). The transition to the Euro: Some perspectives from Economic Psychology. Journal of Consumer Policy, 22, 91-116.
Blacklay A, Eiser C, Ellis A (1998). Development and evaluation of an information booklet for adult survivors of cancer in childhood.
Archives of Disease in Childhood,
78(4), 340-344.
Abstract:
Development and evaluation of an information booklet for adult survivors of cancer in childhood
Aims - to determine the need for information among survivors of childhood cancer, to assess the acceptability of an information booklet, and to investigate the effectiveness of the booklet in increasing knowledge and influencing health related behaviours. Subjects - Fifty survivors of childhood cancer (age range 14-32 years) who were consecutive attendees at a long term follow up clinic. Methods - the booklet was developed for young people aged 14 years and above by the United Kingdom Children's Cancer Study Group Late Effects Group. Included is information about treatment of cancer, general advice about a healthy lifestyle, the rationale for long term follow up, and information about employment and life insurance problems. Survivors were interviewed at the follow up clinic, offered the booklet, and contacted approximately one week later for a telephone interview. The clinic interview assessed survivors' understanding of their illness and treatment and its impact on their lives, and their preferences for further information. The telephone interview determined survivors' general reaction to the booklet, whether it increased knowledge and influenced health related behaviours. Results - all those interviewed accepted the written information and agreed to a follow up interview. Survivors were enthusiastic about being given more information. Over three quarters learned new information from the booklet. There were no indications that the information was associated with anxiety for any demographic or clinical subgroups. After reading the booklet there was an increased awareness of the risk from sunbathing (p < 0.05), and greater appreciation of the importance of follow up (p < 0.05). Conclusions - These results suggest that written information is likely to be an acceptable and effective supplement to discussions with medical professionals and may readily be incorporated into long term follow up clinics.
Abstract.
Ellis A, Stores G, Mayou R (1998). Psychological concequences of road traffic accidents in children. European Child & Adolescent Psychiatry, 7, 61-68.
Stores G, Ellis AJ, Wiggs L (1998). Sleep and psychological disturbance in nocturnal asthma. Archives of Disease in Childhood, 78(5), 413-419.
Eiser C, Cool P, Grimer RJ, Carter SR, Cotter IM, Ellis AJ, Kopel S (1997). Quality of life in children following treatment for a malignant primary bone tumour around the knee.
Sarcoma,
1(1), 39-45.
Abstract:
Quality of life in children following treatment for a malignant primary bone tumour around the knee.
Purpose. We report on the quality of life following treatment for a malignant primary bone tumour around the knee in skeletally immature children.Patients. Patients (n = 41; mean age = 18 years; range 8-28) had all experienced chemotherapy in a neo-adjuvant setting, surgical excision of the tumour and endoprosthetic replacement.Methods. Interviews were conducted separately with the child and mother and focused on mobility, body image and the impact of treatment on schooling, employment and plans for the future.Results. Mobility in the group was variable. Only 12% reported that they could run with any confidence. The proportion who were able to swim (49%) or ride a bike (46%) was higher. All had experienced major disruption in schooling (mean absence following diagnosis = 12 months). Eight had repeated a school year and 41% patients reported that their schoolwork was affected. As a result of their experience, eight (six females and two males) chose health-related employment. Concerns for the future were highest among males and those with manual jobs. Three patients were receiving psychiatric support, in relation to extreme concern about the risk of recurrence. All expressed satisfaction with treatment, and older patients believed that the prosthesis gave a better quality of life than amputation.Discussion. Our data suggest that outcome following limb-salvage surgery is variable. Education is disrupted. Even so, only two left school with no qualifications. Employment is most restricted among males with few qualifications who may benefit from sensitive vocational counselling.
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Eiser C, Cool P, Grimer R, Carter S, Ellis A, Kopel S, Eiser JR (1997). The role of monitoring in determining quality of life following treatment for a bone tumor.
Int J Behav Med,
4(4), 397-414.
Abstract:
The role of monitoring in determining quality of life following treatment for a bone tumor.
Interviews were conducted with 34 young people who had previously been treated for a malignant bone tumor around the knee. These interviews focused on the impact of treatment on activities and perceptions of the risk of recurrence and need for future surgery a coding schema based on a "monitoring-blunting" framework was adopted (Miller, 1995). Quality of life was assessed using a generic and disease-specific measure. Based on interview data, respondents were categorized as negativistic monitors, adaptive monitors, and nonmonitors. There were no differences between groups in terms medical indicators (number of operations). Negativistic monitors reported poorer quality of life compared with the other two groups. There was no increase in nonmonitoring with time since diagnosis as reported in previous work. It is suggested that patients' self-ratings of quality of life are related to the way in which they monitor information and this may be independent of clinical function. Clinical implications, especially in terms of how potentially threatening information about late-effects of treatment are given to patients, are discussed.
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Chapters
Sheldon B, Chilvers R, Ellis A, Moseley A, Tierney S (2004). A pre-post empirical study of obstacles to, and opportunities for, evidence-based practice in social care. In Bilson A (Ed) Evidence-Based Practice and Social Work, London: Whiting & Birch.
Conferences
Goodwin E, Green C, Boddy K, Freeman J, Thomas S, Chataway J, Hawton A (2020). Exploring the relevance and validity of wellbeing measures that can be used in cost-effectiveness analysis in the context of multiple sclerosis.
Author URL.
Freeman J, Marsden J, Pavlou M, Dennett R, Gibbon A, Bamiou D, Harris C, Hawton A, Jones B, Creanor S, et al (2020). Vestibular Rehabilitation in People with Multiple Sclerosis.
Author URL.
Hendrie W, Dennett R, Jarrett L, Creanor S, Barton A, Hawton A, Marsden J, Freeman J (2019). “I’m in a very good frame of mind”: the experience of standing frame use in people with progressive multiple sclerosis.
Jarrett L, Hendrie W, Dennett R, Creanor S, Barton A, Hawton AM, Marsden J, Freeman J (2018). "I'm in a very good frame of mind": the experience of standing frame use in people with progressive multiple sclerosis.
Author URL.
Wynford-Thomas R, Harding K, Hawton A, Hirst C, Tallantyre E, Green C, Robertson N (2018). EQ-5D IN THE ASSESSMENT OF RELAPSE RECOVERY IN MS.
Author URL.
Goodwin EA, Hawton A, Green C (2018). Mapping Fatigue Severity Scale scores to utility values from three preference-based measures (EQ-5D, SF-6D and MSIS-8D). European Health Economics Association (EuHEA) Conference. 12th - 14th Jul 2018.
Green C, Goodwin E, Hawton A (2018). QUALITY-ADJUSTED LIFE-YEARS (QALYS) AND HUNTINGTON'S DISEASE.
Author URL.
Freeman J, Hendrie W, Jarrett L, Hawton A, Barton A, Dennett R, Jones B, Marsden J, Zajicek J, Creanor S, et al (2018). Standing up in multiple sclerosis (SUMS): a multi-centre randomised controlled trial evaluating the clinical and cost effectiveness of a home-based self-management standing frame programme in people with progressive multiple sclerosis.
Author URL.
Goodwin EA, Hawton A, Davey A, Green C (2018). What were they thinking? Investigating what influences respondents’ preferences when answering time trade-off questions. European Health Economics Association (EuHEA) Conference. 12th - 14th Jul 2018.
Goodwin EA, Green C, Hawton A (2017). Quality-adjusted life-years from the perspective of people with multiple sclerosis. MS Frontiers. 29th - 30th Jun 2017.
Freeman JA, Hendrie W, Creanor S, Jarrett L, Barton A, Hawton A, Morby D, Hooley S, Marsden J, Zajicek J, et al (2017). Standing up in Multiple Sclerosis (SUMS): Protocol for a multi-centre randomised controlled trial evaluating the clinical and cost effectiveness of a home-based self-management standing frame programme in people with progressive multiple sclerosis.
Author URL.
Goodwin EA, Green C, Hawton A (2017). What difference does it make? a comparison of preferences elicited from the general population and from people with multiple sclerosis. World Congress of the International Health Economics Association (IHEA). 5th - 8th Jul 2017.
Hawton A, Green C (2014). Generic preference-based measures for use with people with multiple sclerosis: are they appropriate?.
Author URL.
Hawton A, Goodwin E (2014). Patients and health economists: working together to build a better research base for making decisions about the funding of treatments for MS. International Society for Quality of Life Research (ISOQOL). 15th - 18th Oct 2014.
Green C, Hawton A, Zajicek J (2013). HEALTH STATE (QALY) VALUES FOR MULTIPLE SCLEROSIS: a REPORT USING DATA FROM THE UNITED KINGDOM SOUTH WEST IMPACT OF MULTIPLE SCLEROSIS (SWIMS) STUDY.
Author URL.
Green C, Hawton A, Zajicek J (2013). Health state (QALY) values for multiple sclerosis: a report using data from the UK South West Impact of Multiple Sclerosis (SWIMS) Study.
Author URL.
Hawton AJ, Green C, Zajicek J, Wright D (2013). Health state (QALY) values for multiple sclerosis: Improving the quality of information used in cost-effectiveness analyses of treatments for MS.
Author URL.
Reports
Shilling V, Morris C, Hawton A, Bailey S, Logan S (2015).
What are the benefits and costs of providing peer support to parents of disabled children?., Final Report: PenCLAHRC, University of Exeter Medical School.
Abstract:
What are the benefits and costs of providing peer support to parents of disabled children?
Abstract.
Author URL.
Frost S, Moseley A, Tierney S, Hutton A, Ellis A, Duffy M, Newman T (2006). The Evidence Guide: Using Research and Evaluation in Social Care and Allied Professions. Barnardo's / Centre for Evidence-Based Social Services.
Publications by year
In Press
Hawton AJ (In Press). Evaluation of a home-based standing frame programme in people with progressive Multiple Sclerosis (SUMS): a pragmatic, multi-centre, randomised, controlled trial and cost-effectiveness analysis. Lancet Neurology
Hawton A, Goodwin E, Boddy K, Freeman J, Thomas S, Chataway J, Green C (In Press). Measuring the cost-effectiveness of treatments for people with Multiple Sclerosis: beyond quality-adjusted life-years. Multiple Sclerosis Journal
Moghaddam N, Dawson DL, Evangelou N, Turton J, Hawton A, Law G, Roche B, Rowan E, Burge R, Frost AC, et al (In Press). Strengthening Mental Abilities with Relational Training (SMART) in Multiple Sclerosis (MS): Study Protocol for a Feasibility Randomised Controlled Trial.
Abstract:
Strengthening Mental Abilities with Relational Training (SMART) in Multiple Sclerosis (MS): Study Protocol for a Feasibility Randomised Controlled Trial
Abstract
. Background
Multiple Sclerosis (MS) is a chronic condition of the central nervous system, affecting around 1 in every 600 people in the UK, with 130 new diagnoses every week. Cognitive difficulties are common amongst people with MS, with up to 70% experiencing deficits in higher-level brain functions – such as planning and problem-solving, attention, and memory. Cognitive deficits make it difficult for people with MS to complete everyday tasks and limit their abilities to work, socialise, and live independently. There is a clear need – and recognised research priority – for treatments that can improve cognitive functioning in people with MS. The absence of effective cognitive interventions exacerbates burdens on the services accessed by people with MS – requiring these services to manage sequelae of untreated cognitive deficits, including reduced quality of life, greater disability and dependence, and poorer adherence to disease-modifying treatments. Our planned research will fill the evidence gap through developing – and examining the feasibility of trialling – a novel online cognitive rehabilitation programme for people with MS (SMART).
Methods
The primary objective of this study aims to conduct a feasibility study to inform development of a definitive trial of SMART for improving cognitive functioning in people with MS. Secondary objectives include accessing the acceptability to participants of the intervention, delivery format, inclusion/exclusion criteria, baselines and outcome measures, randomisation protocol, and the study procedures. It will further assess the framework for a cost-effectiveness analysis alongside a definitive trial; participant recruitment and retention rates, sample-size needed for a fully powered trial, and signal of efficacy.
Discussion
As a feasibility trial, outcomes are unlikely to immediately effect changes to NHS practice. However, this is a necessary step towards developing a definitive trial – and will give us a signal of efficacy, a prerequisite for progression to a definitive trial. If found to be clinically- and cost-effective, the latter trial could create a step-change in MS cognitive rehabilitation – improving service-delivery and optimising support with limited additional resources.
Trial Registration:
Registration ID: ClnicalTrials.gov: NCT04975685 – registered on July 23rd, 2021
Protocol version:
2.0, 25 November 2021
Abstract.
Goodwin EA, Hawton A, Green C (In Press). Using the Fatigue Severity Scale to inform healthcare decision-making in multiple sclerosis: mapping to three quality-adjusted life-year measures (EQ-5D-3L, SF-6D, MSIS-8D).
Health and Quality of Life Outcomes,
17(136).
Abstract:
Using the Fatigue Severity Scale to inform healthcare decision-making in multiple sclerosis: mapping to three quality-adjusted life-year measures (EQ-5D-3L, SF-6D, MSIS-8D)
Background: Fatigue has a major influence on the quality of life of people with multiple sclerosis. The Fatigue Severity Scale is a frequently used patient-reported measure of fatigue impact, but does not generate the health state utility values required to inform cost-effectiveness analysis, limiting its applicability within decision-making contexts. The objective of this study was to use statistical mapping methods to convert Fatigue Severity Scale scores to health state utility values from three preference-based measures: the EQ-5D-3L, SF-6D and Multiple Sclerosis Impact Scale-8D.
Methods: the relationships between the measures were estimated through regression analysis using cohort data from 1056 people with multiple sclerosis in South West England. Estimation errors were assessed and predictive performance of the best models were tested in a separate sample (n=352).
Results: for the EQ-5D and the Multiple Sclerosis Impact Scale-8D, the best performing models used a censored least absolute deviation specification, with Fatigue Severity Scale total score, age and gender as predictors. For the SF-6D, the best performing model used an ordinary least squares specification, with Fatigue Severity Scale total score as the only predictor.
Conclusions: Here we present algorithms to convert Fatigue Severity Scales scores into health state utility values based on three preference-based measures. These values may be used to estimate quality adjusted life-years for use in cost-effectiveness analyses and to consider the health-related quality of life of people with multiple sclerosis, thereby informing health policy decisions.
Abstract.
Goodwin E, Davey A, Green C, Hawton A (In Press). What drives differences in preferences for health states between patients and the public? a qualitative investigation of respondents' thought processes. Social Science and Medicine
Hawton AJ, Kandiyali R, Cabral C, Mytton J, Shilling V, Morris C, Ingram J (In Press). Working with patients and members of the public: informing health economics in child health research. Pharmacoeconomics Open
Creanor E, Hawton A (In Press). “I’m in a very good frame of mind”: a qualitative exploration of the experience of standing frame use in people with progressive multiple sclerosis. BMJ Open
2022
Halliday BJ, Chatfield S, Cameron L, Hosking J, Shawe J, Hawton A, Hayward C, Carter K, Freeman JA (2022). Evaluating the Management of chronic Pelvic girdle Pain following pregnancy (EMaPP): study protocol for a randomised controlled feasibility trial to compare a customised pelvic orthosis with standard care. BMJ Open, 12(8).
Dhanda AD, Allende H, Allgar V, Andrade J, Bailey MP, Callaghan L, Cocking L, Goodwin E, Hawton A, Hayward C, et al (2022). Mental Imagery to Reduce Alcohol-related harm in patients with alcohol dependence and alcohol-related liver damaGE: the MIRAGE pilot trial protocol.
BMJ Open,
12(5).
Abstract:
Mental Imagery to Reduce Alcohol-related harm in patients with alcohol dependence and alcohol-related liver damaGE: the MIRAGE pilot trial protocol.
INTRODUCTION: in the UK, alcohol use is the main driver of chronic liver disease and each year results in over 1 million unplanned hospital admissions and over 25 000 deaths from alcohol-related liver disease (ArLD). The only effective treatment to prevent progression of liver damage is reducing or ceasing alcohol consumption. Psychological and pharmacological therapies for alcohol misuse are ineffective in patients with ArLD. Functional imagery training (FIT) is a novel psychological therapy that builds on motivational interviewing techniques with multisensory imagery. This pilot trial aims to test the feasibility of training alcohol liaison nurses to deliver FIT therapy and of recruiting and retaining patients with ArLD and alcohol dependence to a randomised trial of FIT and treatment as usual (TAU) versus TAU alone. METHODS AND ANALYSIS: This is a randomised pilot trial of FIT and TAU versus TAU alone in 90 patients with ArLD and alcohol dependence admitted to one of four UK centres. The primary objectives are to estimate rates of screening, recruitment, randomisation, retention, adherence to FIT/TAU and a preliminary assessment of the FIT intervention in the ArLD population. Data from the pilot study will be used to finalise the design of a definitive randomised controlled trial to assess the effectiveness and cost-effectiveness of FIT. The proposed primary outcome measure for the definitive trial is self-reported alcohol use assessed using timeline follow-back. ETHICS AND DISSEMINATION: Research ethics approval was given by the Yorkshire and Humber-Bradford Leeds Research Ethics Committee (reference: 21/YH/0044). Eligible patients will be approached and written informed consent obtained prior to participation. Results will be disseminated through peer-reviewed open access journals, international conferences and a lay summary published on the Trials Unit website and made available to patient groups. TRIAL REGISTRATION NUMBER: ISRCTN41353774.
Abstract.
Author URL.
Frost AC, Golijani-Moghaddam N, Burge R, Dawson DL, Evangelou N, Roche B, Turton J, Hawton A, Law G, Rowan E, et al (2022). Usability and acceptability of a cognitive training intervention (SMART) for people with multiple sclerosis (MS): a prefeasibility formative evaluation. NIHR Open Research, 2
2021
Goodwin E, Hawton A, Whitty JA, Green C (2021). Exploring the Factors that Influence Workforce Participation for People with Multiple Sclerosis: a Discrete Choice Experiment.
Journal of Occupational RehabilitationAbstract:
Exploring the Factors that Influence Workforce Participation for People with Multiple Sclerosis: a Discrete Choice Experiment
AbstractPurpose Research indicates that employment is beneficial for people with multiple sclerosis (MS). However, people with MS typically face reduced workforce participation compared to the general population. Using a discrete choice experiment (DCE) we explored which factors are most important in influencing employment choices of people with MS, and whether the relative importance of factors differs between subgroups. Methods Attributes and levels for the DCE were developed using a systematic literature review and public involvement techniques with people with MS. In an online survey, respondents were asked to choose between two hypothetical job scenarios described using six attributes. We used a large, national register (the UK MS Register), to recruit participants aged 18–64 years with a diagnosis of MS. Choice data were analysed using multinomial logit and latent class models. Results Analyses were based on responses from 2350 people with MS. The preferred model specification was a latent class model, with three classes of respondent. The relative importance of attributes varied between classes, with one giving the greatest weight to the impact of work on other aspects of their lives, the second to having supportive bosses and colleagues, and the third to job flexibility. The classes differed significantly in terms of age and gender, type of MS, and socio-economic status. Conclusions Significant heterogeneity was apparent among people with MS regarding the factors that influence their employment decisions. Attributes concerning the impact of work, attitudes in the workplace and job flexibility appear more influential than those concerning physical workplace adaptations.
Abstract.
Bjornstad G, Cuffe-Fuller B, Ukoumunne OC, Fredlund M, McDonald A, Wilkinson K, Lloyd J, Hawton A, Berry V, Tarrant M, et al (2021). Healthy Parent Carers: feasibility randomised controlled trial of a peer-led group-based health promotion intervention for parent carers of disabled children. Pilot and Feasibility Studies, 7
Bjornstad G, Cuffe-Fuller B, Ukoumunne OC, Fredlund M, McDonald A, Wilkinson K, Lloyd J, Hawton A, Berry V, Tarrant M, et al (2021). Healthy Parent Carers: feasibility randomised controlled trial of a peer-led group-based health promotion intervention for parent carers of disabled children (dataset).
Hawton A, Boddy K, Kandiyali R, Tatnell L, Gibson A, Goodwin E (2021). Involving Patients in Health Economics Research: "The PACTS Principles".
Patient,
14(4), 429-434.
Abstract:
Involving Patients in Health Economics Research: "The PACTS Principles".
Discussion of public and patient involvement (PPI) in health economics (HE) research is growing. There is much literature on PPI principles and standards, but little specifically regarding involving patients in HE research. Here, we outline "PACTS", a set of principles, developed with a PPI group, for considering patient involvement in HE research. Planning: Involvement is best built in to research plans from the outset. This includes setting specific goals for involvement activities, and clearly communicating the background and purpose of involvement. Approach selection: We describe two main approaches to involvement-discussion-based and task-based. Discussion-based approaches are useful for generating broad insights and revealing "unknown unknowns". Task-based approaches offer a more focused means of shedding light on "known unknowns". Continuous involvement: Involving patients throughout the research process and across a range of projects helps build expertise for patients and insight for HE researchers. Team building: Meaningful involvement creates a shared sense of ownership of the research and, over time, helps to develop a team ethos, enhancing the positive impacts of involvement. Sensitivity: HE research can be perceived as technical and impersonal. Addressing this requires sensitivity, clarity, and an honest and open approach. There is increased recognition that patient contributors are experts at providing a "lived experience" perspective, in the way that clinicians are experts at providing an overview of conditions and HEs are experts in the methodology of their discipline. We hope these "PACTS Principles" complement existing PPI approaches and provide a useful foundation for health economists considering patient involvement.
Abstract.
Author URL.
2020
Goodwin E, Green C, Boddy K, Freeman J, Thomas S, Chataway J, Hawton A (2020). Exploring the relevance and validity of wellbeing measures that can be used in cost-effectiveness analysis in the context of multiple sclerosis.
Author URL.
Freeman J, Marsden J, Pavlou M, Dennett R, Gibbon A, Bamiou D, Harris C, Hawton A, Jones B, Creanor S, et al (2020). Vestibular Rehabilitation in People with Multiple Sclerosis.
Author URL.
Marsden J, Pavlou M, Dennett R, Gibbon A, Knight-Lozano R, Jeu L, Flavell C, Freeman J, Bamiou DE, Harris C, et al (2020). Vestibular rehabilitation in multiple sclerosis: study protocol for a randomised controlled trial and cost-effectiveness analysis comparing customised with booklet based vestibular rehabilitation for vestibulopathy and a 12 month observational cohort study of the symptom reduction and recurrence rate following treatment for benign paroxysmal positional vertigo.
BMC Neurology,
20(1).
Abstract:
Vestibular rehabilitation in multiple sclerosis: study protocol for a randomised controlled trial and cost-effectiveness analysis comparing customised with booklet based vestibular rehabilitation for vestibulopathy and a 12 month observational cohort study of the symptom reduction and recurrence rate following treatment for benign paroxysmal positional vertigo
Abstract
. Background
. Symptoms arising from vestibular system dysfunction are observed in 49–59% of people with Multiple Sclerosis (MS). Symptoms may include vertigo, dizziness and/or imbalance. These impact on functional ability, contribute to falls and significant health and social care costs. In people with MS, vestibular dysfunction can be due to peripheral pathology that may include Benign Paroxysmal Positional Vertigo (BPPV), as well as central or combined pathology. Vestibular symptoms may be treated with vestibular rehabilitation (VR), and with repositioning manoeuvres in the case of BPPV. However, there is a paucity of evidence about the rate and degree of symptom recovery with VR for people with MS and vestibulopathy. In addition, given the multiplicity of symptoms and underpinning vestibular pathologies often seen in people with MS, a customised VR approach may be more clinically appropriate and cost effective than generic booklet-based approaches. Likewise, BPPV should be identified and treated appropriately.
.
. Methods/ design
. People with MS and symptoms of vertigo, dizziness and/or imbalance will be screened for central and/or peripheral vestibulopathy and/or BPPV. Following consent, people with BPPV will be treated with re-positioning manoeuvres over 1–3 sessions and followed up at 6 and 12 months to assess for any re-occurrence of BPPV. People with central and/or peripheral vestibulopathy will be entered into a randomised controlled trial (RCT). Trial participants will be randomly allocated (1:1) to either a 12-week generic booklet-based home programme with telephone support or a 12-week VR programme consisting of customised treatment including 12 face-to-face sessions and a home exercise programme. Customised or booklet-based interventions will start 2 weeks after randomisation and all trial participants will be followed up 14 and 26 weeks from randomisation. The primary clinical outcome is the Dizziness Handicap Inventory at 26 weeks and the primary economic endpoint is quality-adjusted life-years. A range of secondary outcomes associated with vestibular function will be used.
.
. Discussion
. If customised VR is demonstrated to be clinically and cost-effective compared to generic booklet-based VR this will inform practice guidelines and the development of training packages for therapists in the diagnosis and treatment of vestibulopathy in people with MS.
.
. Trial registration
. ISRCTN Number: 27374299
. Date of Registration 24/09/2018
. Protocol Version 15 25/09/2019
.
Abstract.
2019
Freeman J, Hendrie W, Jarrett L, Hawton A, Barton A, Dennett R, Jones B, Zajicek J, Creanor S (2019). Assessment of a home-based standing frame programme in people with progressive multiple sclerosis (SUMS): a pragmatic, multi-centre, randomised, controlled trial and cost-effectiveness analysis.
The Lancet Neurology,
18(8), 736-747.
Abstract:
Assessment of a home-based standing frame programme in people with progressive multiple sclerosis (SUMS): a pragmatic, multi-centre, randomised, controlled trial and cost-effectiveness analysis
Background: People severely impaired with progressive multiple sclerosis spend much of their day sitting, with very few options to improve motor function. As a result, secondary physical and psychosocial complications can occur. Effective and feasible self-management strategies are needed to reduce sedentary behaviour and enhance motor function. In this study, we aimed to assess the clinical and cost effectiveness of a home-based, self-managed, standing frame programme. Methods: SUMS was a pragmatic, multicentre, randomised controlled superiority trial of people with progressive multiple sclerosis and severe mobility impairment, undertaken in eight centres from two regions in the UK. The study had assessor-blinded outcome assessments with use of clinician-rated and patient-rated measures at baseline, 20 weeks, and 36 weeks. After baseline assessment, participants were randomised (1:1) by computer-generated assignment to either a standing frame programme plus usual care or usual care alone. The intervention consisted of two home-based physiotherapy sessions (60 min each) to set up the standing frame programme, supported by six follow-up telephone calls (15 min per call). Participants were asked to stand for 30 min, three times per week over 20 weeks, and encouraged to continue in the longer term, although no further physiotherapy support was provided. The primary clinical outcome was motor function measured by the Amended Motor Club Assessment (AMCA) score at week 36, analysed in the modified intention-to-treat population (excluding only patients who were deemed ineligible after randomisation, those who withdrew from the trial and were unwilling for their previously collected data to be used, or those who did not provide baseline and week 36 measurements). A 9-point AMCA score change was considered clinically meaningful a priori. Adverse events were collected through a daily preformatted patient diary throughout the 36 weeks and analysed in the modified intention-to-treat population. An economic assessment established the resources required to provide the standing frame programme, estimated intervention costs, and estimate cost effectiveness. This trial is registered with the International Standard Randomised Controlled Trials, number ISRCTN69614598. Findings: Between Sept 16, 2015, and April 28, 2017, 285 people with progressive multiple sclerosis were screened for eligibility, and 140 were randomly assigned to either the standing frame group (n=71) or the usual care group (n=69). of these, 122 completed the primary outcome assessment (61 participants in both groups) for the modified intention-to-treat analysis. The use of the standing frame resulted in a significant increase in AMCA score compared with that for usual care alone, with a fully adjusted between-group difference in AMCA score at 36 weeks of 4·7 points (95% CI 1·9–7·5; p=0·0014). For adverse events collected through patient diaries, we observed a disparity between the two groups in the frequency of short-term musculoskeletal pain (486 [41%] of 1188 adverse events in the standing frame group vs 160 [22%] of 736 adverse events in the usual care group), which was potentially related to the intervention. The musculoskeletal pain lasted longer than 7 days in five participants (two in the standing frame group and three in the usual care group). No serious adverse events related to the study occurred. The standing frame group had a mean 0·018 (95% CI −0·014 to 0·051) additional quality-adjusted life-years (QALYs) compared with those of the usual care group, and the estimated incremental cost-per-QALY was approximately £14 700. Interpretation: the standing frame programme significantly increased motor function in people with severe progressive multiple sclerosis, although not to the degree that was considered a priori as clinically meaningful. The standing frame is one of the first physiotherapy interventions to be effective in this population. We suggest that the programme is feasible as a home-based, self-managed intervention that could be routinely implemented in clinical practice in the UK. Funding: UK National Institute of Health Research.
Abstract.
Limond J, Wade SL, Vickery PJ, Jeffery A, Warren FC, Hawton A, Smithson J, Ford T, Haworth S, Adlam A-LR, et al (2019). Clinical and cost-effectiveness of teen online problem-solving for adolescents who have survived an acquired brain injury in the UK: protocol for a randomised, controlled feasibility study (TOPS-UK).
BMJ Open,
9(8).
Abstract:
Clinical and cost-effectiveness of teen online problem-solving for adolescents who have survived an acquired brain injury in the UK: protocol for a randomised, controlled feasibility study (TOPS-UK).
INTRODUCTION: Paediatric acquired brain injury is a leading cause of mortality in children in the UK. Improved treatment during the acute phase has led to increased survival rates, although with life-long morbidity in terms of social and emotional functioning. This is the protocol for a feasibility randomised controlled trial with an embedded qualitative study and feasibility economic evaluation. If feasible, a later definitive trial will test the effectiveness and cost-effectiveness of an online intervention to enhance problem solving ability versus treatment as usual. METHODS AND ANALYSIS: Twenty-five adolescents and their families identified by primary or secondary care clinicians at participating UK National Health Service Trusts will be recruited and individually randomised in a 1:1 ratio to receive the online intervention or treatment as usual. Participants will be followed up by online questionnaires 17 weeks after randomisation to capture acceptability of the study and intervention and resource use data. Qualitative interviews will capture participants' and clinicians' experiences of the study. ETHICS AND DISSEMINATION: This study has been granted ethical approval by the South West-Exeter Research Ethics Committee (ref 17/SW/0083). Results will be disseminated via peer-reviewed publications and will inform the design of a larger trial. TRIAL REGISTRATION NUMBER: ISRCTN10906069.
Abstract.
Author URL.
Hawton A, Green C, Goodwin E, Harrower T (2019). Health state utility values (QALY weights) for Huntington's disease: an analysis of data from the European Huntington's Disease Network (EHDN).
Eur J Health Econ,
20(9), 1335-1347.
Abstract:
Health state utility values (QALY weights) for Huntington's disease: an analysis of data from the European Huntington's Disease Network (EHDN).
BACKGROUND: Huntington's Disease (HD) is a hereditary neurodegenerative disorder which affects individuals' ability to walk, talk, think, and reason. Onset is usually in the forties, there are no therapies currently available that alter disease course, and life expectancy is 10-20 years from diagnosis. The gene causing HD is fully penetrant, with a 50% probability of passing the disease to offspring. Although the impacts of HD are substantial, there has been little report of the quality of life of people with the condition in a manner that can be used in economic evaluations of treatments for HD. Health state utility values (HSUVs), used to calculate quality-adjusted life-years (QALYs), are the metric commonly used to inform such healthcare policy decision-making. OBJECTIVES: the aim was to report HSUVs for HD, with specific objectives to use European data to: (i) describe HSUVs by demographic and clinical characteristics; (ii) compare HSUVs of people with HD in the UK with population norms; (iii) identify the relative strength of demographic and clinical characteristics in predicting HSUVs. METHODS: European Huntington's Disease Network REGISTRY study data were used for analysis. This is a multi-centre, multi-national, observational, longitudinal study, which collects six-monthly demographic, clinical, and patient-reported outcome measures, including the SF-36. SF-36 scores were converted to SF-6D HSUVs and described by demographic and clinical characteristics. HSUVs from people with HD in the UK were compared with population norms. Regression analysis was used to estimate the relative strength of age, gender, time since diagnosis, and disease severity (according to the Total Function Capacity (TFC) score, and the UHDRS's Motor score, Behavioural score, and Cognition score) in predicting HSUVs. RESULTS: 11,328 questionnaires were completed by 5560 respondents with HD in 12 European countries. Women generally had lower HSUVs than men, and HSUVs were consistently lower than population norms for those with HD in the UK, and dropped with increasing disease severity. The regression model significantly accounted for the variance in SF-6D scores (n = 1939; F [7,1931] = 120.05; p
Abstract.
Author URL.
Bjornstad G, Wilkinson K, Cuffe-Fuller B, Fitzpatrick K, Borek A, Ukoumunne OC, Hawton A, Tarrant M, Berry V, Lloyd J, et al (2019). Healthy Parent Carers peer-led group-based health promotion intervention for parent carers of disabled children: protocol for a feasibility study using a parallel group randomised controlled trial design.
Pilot and Feasibility Studies,
5(1).
Abstract:
Healthy Parent Carers peer-led group-based health promotion intervention for parent carers of disabled children: protocol for a feasibility study using a parallel group randomised controlled trial design
Abstract
. Background
. Parent carers of disabled children are at increased risk of mental and physical health problems. They often experience challenges to maintaining good health which have implications for their well-being and their ability to care for their children. In response to these needs, researchers and parent carers developed the Healthy Parent Carers (HPC) programme. It is a peer-led, group-based intervention that promotes behaviours associated with health and well-being. The aims of this trial are to assess the acceptability of the HPC programme and the feasibility of its delivery in the community and to assess the feasibility and acceptability of the design of the definitive trial to evaluate the programme’s effectiveness and cost-effectiveness.
.
. Methods
. We will establish six research sites and train facilitators to deliver the manualised intervention. Parent carers of children with special educational needs and disabilities will be individually randomised, stratified by group delivery site, to either take part in a group programme and online resources (intervention) or to receive access to the online resources only (control). Measures of mental health; well-being; health-related quality of life; health behaviours; patient activation; protective factors such as resilience, social connections, and practical support; and use of health care, social care, and wider societal resources will be collected before randomisation (baseline), immediately post-intervention, and 6 months later. Recruitment of participants, adherence to the programme, and the dose received will be assessed. Group sessions will be audio-recorded to evaluate the fidelity of delivery and participant engagement. Participants’ and facilitators’ feedback on the programme content and delivery, their experience, and the acceptability of the outcome measures and trial design will be collected through feedback forms, interviews, and focus groups.
.
. Discussion
. This trial will assess whether the programme delivery and evaluative trial design are feasible, to inform whether to progress to a definitive randomised controlled trial to test the effectiveness and cost-effectiveness of the Healthy Parent Carers programme.
.
. Trial registration
. ISRCTN, ISRCTN151144652, registered on 25 October 2018; ClinicalTrials.gov, NCT03705221, registered on 15 October 2018.
.
Abstract.
Callaghan L, Thompson TP, Creanor SC, Quinn C, Senior J, Green C, Hawton AJ, Byng R, Wallace G, Sinclair J, et al (2019). Individual health trainers to support health and well-being for people under community supervision in the criminal justice system: the STRENGTHEN pilot RCT. Public Health Research, 7(20).
Freeman J, Hendrie W, Jarrett L, Hawton A-M, Barton A, Dennett R, Jones B, Marsden J, Zajicek J, Creanor S, et al (2019). Standing up in people with progressive multiple sclerosis (SUMS): a multi-centre randomised controlled trial evaluating a home-based standing frame programme. Physiotherapy, 105, e24-e25.
Hendrie W, Dennett R, Jarrett L, Creanor S, Barton A, Hawton A, Marsden J, Freeman J (2019). “I’m in a very good frame of mind”: the experience of standing frame use in people with progressive multiple sclerosis.
2018
Jarrett L, Hendrie W, Dennett R, Creanor S, Barton A, Hawton AM, Marsden J, Freeman J (2018). "I'm in a very good frame of mind": the experience of standing frame use in people with progressive multiple sclerosis.
Author URL.
Wynford-Thomas R, Harding K, Hawton A, Hirst C, Tallantyre E, Green C, Robertson N (2018). EQ-5D IN THE ASSESSMENT OF RELAPSE RECOVERY IN MS.
Author URL.
Goodwin E, Green C, Hawton A (2018). Health State Values Derived from People with Multiple Sclerosis for a Condition-Specific Preference-Based Measure: Multiple Sclerosis Impact Scale–Eight Dimensions–Patient Version (MSIS-8D-P).
Value in Health,
21(11), 1338-1345.
Abstract:
Health State Values Derived from People with Multiple Sclerosis for a Condition-Specific Preference-Based Measure: Multiple Sclerosis Impact Scale–Eight Dimensions–Patient Version (MSIS-8D-P)
Objective: in economic evaluation, health outcomes are commonly quantified using quality-adjusted life-years (QALYs) derived from the preferences of a sample of the general population. It can be argued that this approach ignores the preferences of people with experience of the condition, and that patient preferences have a place in the valuation of health outcomes. Here we report the estimation of a preference-based index for an existing condition-specific preference-based measure for multiple sclerosis (MS), the MSIS-8D, based on the preferences of people with MS. Study design: Internet time trade-off (TTO) survey, eliciting preferences from people with MS. Methods: We elicited preferences from a sample of people with MS (N = 1635) across 169 MSIS-8D health states, using the TTO technique. We fitted ordinary least squares and random effects models to the survey data to estimate values for all health states described by the MSIS-8D. Results: the new patient-derived index (the MSIS-8D-P) provides values ranging from 0.893 for the best possible health state to 0.138 for the worst state. The MSIS-8D-P exhibits good discriminative validity, identifying expected significant differences between groups based on presence/absence of MS, type of MS, and duration since diagnosis. Conclusions: the MSIS-8D-P index of values for MS-specific health states provides an opportunity to estimate QALYs based on patient preferences, for use in economic evaluations of treatments for MS. More broadly, it adds to the methods and data available to consider the health-related quality of life of people with MS to inform resource allocation and individual-level decisions regarding treatments for MS.
Abstract.
Thompson TP, Callaghan L, Hazeldine E, Quinn C, Walker S, Byng R, Wallace G, Creanor S, Green C, Hawton A, et al (2018). Health trainer-led motivational intervention plus usual care for people under community supervision compared with usual care alone: a study protocol for a parallel-group pilot randomised controlled trial (STRENGTHEN).
BMJ Open,
8(6).
Abstract:
Health trainer-led motivational intervention plus usual care for people under community supervision compared with usual care alone: a study protocol for a parallel-group pilot randomised controlled trial (STRENGTHEN).
INTRODUCTION: People with experience of the criminal justice system typically have worse physical and mental health, lower levels of mental well-being and have less healthy lifestyles than the general population. Health trainers have worked with offenders in the community to provide support for lifestyle change, enhance mental well-being and signpost to appropriate services. There has been no rigorous evaluation of the effectiveness and cost-effectiveness of providing such community support. This study aims to determine the feasibility and acceptability of conducting a randomised trial and delivering a health trainer intervention to people receiving community supervision in the UK. METHODS AND ANALYSIS: a multicentre, parallel, two-group randomised controlled trial recruiting 120 participants with 1:1 individual allocation to receive support from a health trainer and usual care or usual care alone, with mixed methods process evaluation. Participants receive community supervision from an offender manager in either a Community Rehabilitation Company or the National Probation Service. If they have served a custodial sentence, then they have to have been released for at least 2 months. The supervision period must have at least 7 months left at recruitment. Participants are interested in receiving support to change diet, physical activity, alcohol use and smoking and/or improve mental well-being. The primary outcome is mental well-being with secondary outcomes related to smoking, physical activity, alcohol consumption and diet. The primary outcome will inform sample size calculations for a definitive trial. ETHICS AND DISSEMINATION: the study has been approved by the Health and Care Research Wales Ethics Committee (REC reference 16/WA/0171). Dissemination will include publication of the intervention development process and findings for the stated outcomes, parallel process evaluation and economic evaluation in peer-reviewed journals. Results will also be disseminated to stakeholders and trial participants. TRIAL REGISTRATION NUMBERS: ISRCTN80475744; Pre-results.
Abstract.
Author URL.
Goodwin EA, Hawton A, Green C (2018). Mapping Fatigue Severity Scale scores to utility values from three preference-based measures (EQ-5D, SF-6D and MSIS-8D). European Health Economics Association (EuHEA) Conference. 12th - 14th Jul 2018.
Green C, Goodwin E, Hawton A (2018). QUALITY-ADJUSTED LIFE-YEARS (QALYS) AND HUNTINGTON'S DISEASE.
Author URL.
Freeman J, Hendrie W, Jarrett L, Hawton A, Barton A, Dennett R, Jones B, Marsden J, Zajicek J, Creanor S, et al (2018). Standing up in multiple sclerosis (SUMS): a multi-centre randomised controlled trial evaluating the clinical and cost effectiveness of a home-based self-management standing frame programme in people with progressive multiple sclerosis.
Author URL.
Goodwin EA, Hawton A, Davey A, Green C (2018). What were they thinking? Investigating what influences respondents’ preferences when answering time trade-off questions. European Health Economics Association (EuHEA) Conference. 12th - 14th Jul 2018.
2017
Green C, Goodwin E, Hawton A (2017). "naming and Framing": the Impact of Labeling on Health State Values for Multiple Sclerosis.
Medical Decision Making,
37(6), 703-714.
Abstract:
"naming and Framing": the Impact of Labeling on Health State Values for Multiple Sclerosis
Introduction. Health state valuation is a key input in many economic evaluations that inform resource allocation across competing healthcare interventions. Empirical evidence has shown that, in preference elicitation surveys, respondents may value a health state differently if they are aware of the condition causing it ('labeling effects'). This study investigates the impact of including a multiple sclerosis (MS) label for valuation of MS health states. Methods. Health state values for MS were elicited using two internet-based surveys in representative samples of the UK population (n = 1702; n = 1788). In one survey respondents were not informed that health states were caused by MS. The second survey included a condition label for MS. Surveys were identical in all other ways. Health states were described using a MS-specific eight-dimensional classification system (MSIS-8D), and the time trade-off valuation technique was used. Differences between values for labeled and unlabeled states were assessed using descriptive statistics and multivariate regression methods. Results. Adding a MS condition label had a statistically significant effect on mean health state values, resulting in lower values for labeled MS states v. unlabeled states. The data suggest that the MS label had a more significant effect on values for less severe states, and no significant effect on values for the most severe states. The inclusion of the MS label had a differential impact across the dimensions of the MSIS-8D. Across the MSIS-8D, predicted values ranged from 0.079 to 0.883 for unlabeled states, and 0.066 to 0.861 for labeled states. Conclusion. Differences reported in health state values, using labeled and unlabeled states, demonstrate that condition labels affect the results of valuation studies, and can have important implications in decision-analytic modelling and in economic evaluations.
Abstract.
Hawton AJ, Goodwin E, Boddy K, Tatnell L (2017). Involving members of the public in health economics research: Insights from selecting health states for valuation to estimate quality-adjusted life-year (QALY) weights. Applied Health Economics and Health Policy
Goodwin EA, Green C, Hawton A (2017). Quality-adjusted life-years from the perspective of people with multiple sclerosis. MS Frontiers. 29th - 30th Jun 2017.
Freeman JA, Hendrie W, Creanor S, Jarrett L, Barton A, Hawton A, Morby D, Hooley S, Marsden J, Zajicek J, et al (2017). Standing up in Multiple Sclerosis (SUMS): Protocol for a multi-centre randomised controlled trial evaluating the clinical and cost effectiveness of a home-based self-management standing frame programme in people with progressive multiple sclerosis.
Author URL.
Hawton AJ, Round J (2017). Statistical alchemy: conceptual validity and mapping to generate health state utility values. PharmacoEconomics - Open, DOI 10.1007/s41669-017-0027-2
Goodwin EA, Green C, Hawton A (2017). What difference does it make? a comparison of preferences elicited from the general population and from people with multiple sclerosis. World Congress of the International Health Economics Association (IHEA). 5th - 8th Jul 2017.
2016
Hawton A, Green C (2016). Health Utilities for Multiple Sclerosis. Value in Health, 19(4), 460-468.
Goodwin V, Paudyal P, Perry M, Day N, Hawton A, Gericke C, Ukoumunne O, Byng R (2016). Implementing a patient-initiated review system for people with rheumatoid arthritis: a prospective, comparative service evaluation.
Journal of Evaluation in Clinical PracticeAbstract:
Implementing a patient-initiated review system for people with rheumatoid arthritis: a prospective, comparative service evaluation
Background
The management of rheumatoid arthritis (RA) usually entails regular hospital reviews with a specialist often when the patient is well rather than during a period of exacerbation. An alternative approach where patients initiate appointments when they need them can improve patient satisfaction and resource use whilst being safe. This service evaluation reports a system wide implementation of a patient-initiated review appointment system called Direct Access (DA) for people with RA. The aim was to establish the impact on patient satisfaction of the new system versus usual care as well as evaluate the implementation processes.
Method
As all patients could not start on the new system at once, in order to manage the implementation, patients were randomly allocated to DA or to usual care. Instead of regular follow-up appointments, DA comprised an education session and access to a nurse-led telephone advice line where appointments could be accessed within two weeks. Usual care comprised routine follow-ups with the specialist. Data were collected on patient satisfaction, service use and outcomes of any contact to the advice line.
Results
Three hundred and eleven patients with RA were assessed as being suitable for DA. In terms of patient satisfaction, between-group differences were found in favour of DA for accessibility and convenience, ease of contacting the nurse and overall satisfaction with the service. Self-reported visits to the GP were also significantly lower. DA resulted in a greater number of telephone contacts (incidence rate ratio = 1.69; 95% CI 1.07 to 2.68). Hospital costs of the two different service models were similar. Mean waiting time for an appointment was 10.8 days
Conclusion
This service evaluation found that DA could be implemented and demonstrated patient benefit in a real world setting. Further research establishing the broader cost-consequences across the whole patient pathway would add to our findings.
Abstract.
Hawton AJ, Green C (2016). Multiple sclerosis: relapses, resource use, and costs.
Eur J Health Econ,
17(7), 875-884.
Abstract:
Multiple sclerosis: relapses, resource use, and costs.
BACKGROUND: Relapses can have a major impact on the lives of people with multiple sclerosis (MS), and yet relapse-related healthcare costs have received little attention. This has limited cost-effectiveness analyses of treatments for MS and hampered decision-making regarding the funding of MS healthcare services. OBJECTIVE: to describe health/social care resource use and costs according to the frequency, severity, and endurance of MS relapses. METHODS: Data from the prospective, longitudinal UK South West Impact of Multiple Sclerosis cohort were used. A total of 11,800 questionnaires from 1441 people with MS were available, including data on relapses, contacts with health/social care professionals, and other MS-related resource use. RESULTS: the mean (SD) 6-monthly MS-related health/social care cost for individuals who reported a relapse was £519 (£949), compared to £229 (£366) for those who had not did report a relapse. Care costs varied widely dependent on the characteristics of the relapse. The mean (SD) cost when a relapse was not treated with steroids was £381 (£780), whilst the equivalent cost was £3579 (£1727) when a relapse resulted in hospitalization. CONCLUSIONS: the impact of relapses on health and social care resources and costs differs according to their frequency, length, and severity. The data provided here can be used in cost-effectiveness analyses and to inform decision-making regarding healthcare provision for people with this condition.
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2015
Shilling V, Morris C, Hawton A, Bailey S, Logan S (2015).
What are the benefits and costs of providing peer support to parents of disabled children?., Final Report: PenCLAHRC, University of Exeter Medical School.
Abstract:
What are the benefits and costs of providing peer support to parents of disabled children?
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2014
Hawton A, Green C (2014). Generic preference-based measures for use with people with multiple sclerosis: are they appropriate?.
Author URL.
Hawton A, Goodwin E (2014). Patients and health economists: working together to build a better research base for making decisions about the funding of treatments for MS. International Society for Quality of Life Research (ISOQOL). 15th - 18th Oct 2014.
Hawton A, Goodwin E (2014). Patients and health economists: working together to build a better research base for making decisions about the funding of treatments for MS.
QUALITY OF LIFE RESEARCH,
23, 15-15.
Author URL.
2013
Green C, Hawton A, Zajicek J (2013). HEALTH STATE (QALY) VALUES FOR MULTIPLE SCLEROSIS: a REPORT USING DATA FROM THE UNITED KINGDOM SOUTH WEST IMPACT OF MULTIPLE SCLEROSIS (SWIMS) STUDY.
Author URL.
Green C, Hawton A, Zajicek J (2013). Health state (QALY) values for multiple sclerosis: a report using data from the UK South West Impact of Multiple Sclerosis (SWIMS) Study.
Author URL.
Hawton AJ, Green C, Zajicek J, Wright D (2013). Health state (QALY) values for multiple sclerosis: Improving the quality of information used in cost-effectiveness analyses of treatments for MS.
Author URL.
Hawton A, Shearer J, Goodwin E, Green C (2013). Squinting through layers of fog: assessing the cost effectiveness of treatments for multiple sclerosis.
Appl Health Econ Health Policy,
11(4), 331-341.
Abstract:
Squinting through layers of fog: assessing the cost effectiveness of treatments for multiple sclerosis.
BACKGROUND: Multiple sclerosis (MS) is a chronic neurological disorder, which can lead to a wide range of disabling symptoms. The condition has a significant negative impact on health-related quality of life, and the economic cost of the disease is substantial. Decision-making regarding treatments for MS, and particularly disease-modifying interventions, has been hampered by limitations in the data and evaluative framework for assessing their cost effectiveness. Whilst attention has been drawn to these weaknesses, the scope and extent of the challenges in this area have not been fully set out to date. AIMS: the aims of this review were to identify all published economic evaluations of MS treatments in order to provide a statement on the scope and characteristics of the cost-effectiveness literature in the area of MS and to provide a basis on which to suggest practical recommendations for future research to aid decision-making. METHOD: a systematic search was undertaken to identify economic evaluations of treatments for people with MS published in English up to December 2011. Included studies were reviewed to provide a comprehensive description of the characteristics of the currently applied framework for cost effectiveness in MS, with the following key methodological components considered: methods for estimating disease progression, the impact of treatment and health outcomes and costs associated with MS. RESULTS: Thirty-seven papers were identified. Most studies (n = 32) were model-based evaluations of disease-modifying drugs. All models used disability stages defined by the Expanded Disability Status Scale (EDSS) to characterise disease progression, and the impact of treatment was based on data from clinical trials and epidemiological cohorts. Outcomes were primarily based on quality-adjusted life-years (n = 22) and/or related to relapse (n = 14). Estimates for health state utility values (HSUVs), costs and the impact of treatment on the course of MS varied considerably between studies, depending on the data sources used and the methods used to incorporate data into models. The scope of the studies was narrow, with a sparsity of economic evaluations of symptomatic and/or non-pharmacological interventions; exclusion of direct non-medical, indirect and informal care costs from analyses; and a narrow view of the potential impact of treatment, concentrating on disability, according to the EDSS, and relapses. In addition, there were issues concerning how to capture losses in HSUVs due to relapses in a way that reflects their salience to people with MS, the wide variation in costs and outcomes from different sources and from potentially unrepresentative samples and modelling disease progression from natural history data from over 30 years ago. CONCLUSION: There are many complexities for those designing and reporting cost-effectiveness studies of treatments for MS. Analysts, and ultimately decision makers, face multiple data and methodological challenges. Policy makers, technology developers, clinicians, patients and researchers need to acknowledge and address these challenges and to consider recommendations that will improve the current scenario. There is a need for further research that can constructively inform decision-making regarding the funding of treatments for MS.
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2012
Hawton A, Green C, Telford CJ, Wright DE, Zajicek JP (2012). The use of multiple sclerosis condition-specific measures to inform health policy decision-making: mapping from the MSWS-12 to the EQ-5D.
Mult Scler,
18(6), 853-861.
Abstract:
The use of multiple sclerosis condition-specific measures to inform health policy decision-making: mapping from the MSWS-12 to the EQ-5D.
BACKGROUND: Walking impairment has a major influence on the quality of life of people with multiple sclerosis (MS). The Multiple Sclerosis Walking Scale (MSWS-12) assesses the impact of MS on walking ability from the patient's perspective, but in its current form, is not amenable for use in many policy decision-making settings. OBJECTIVES: Statistical 'mapping' methods were used to convert MSWS-12 scores to EQ-5D health state values. METHODS: the relationship between the measures was estimated using cohort data from people with MS in South West England. Regression analyses were conducted, estimation errors assessed, and predictive performance of the best models tested using longitudinal data. RESULTS: Model performance was in line with that of other mapping studies, with the best-performing models being an ordinary least squares (OLS) model using MSWS-12 item scores, and an OLS model using the total MSWS-12 score and its squared term. CONCLUSIONS: a process has been described whereby data from a patient-reported outcome measure (MSWS-12) can be converted to (EQ-5D) health state values. These values may be used to consider the health-related quality of life of people with MS, to estimate quality adjusted life-years for use in effectiveness and cost-effectiveness analyses, and to inform health policy decisions.
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Trappes-Lomax T, Hawton A (2012). The user voice: Older people's experiences of reablement and rehabilitation.
Journal of Integrated Care,
20(3), 181-194.
Abstract:
The user voice: Older people's experiences of reablement and rehabilitation
Purpose - This paper aims to report verbatim the voices of older people describing their experiences of rehabilitation services in community hospitals and local authority short-term residential units followed by "usual care" services at home. It aims to contribute directly to the implementation of the DH Section 256 "reablement guidance". Design/methodology/approach - the paper is a qualitative study, based on semi-structured face-to-face interviews in 2002/3, with 42 participants (mean age 81.4 years) using interpretative phenomenological analysis (IPA). Findings - Four main themes emerged from users' comments: the complexity of rehabilitative need, the influence of the setting, the role of the staff and the availability of reablement support back at home. Research limitations/implications - Qualitative studies have limited generalisability, but these findings are consistent both with other studies of user experience and with earlier related evidence about assessment, institutionalisation and psychological factors. Practical implications - the findings clearly demonstrate changing rehabilitative needs along the care pathway, with implications for commissioners and providers of reablement services. The findings bring a user perspective to current debates about the integration of services and the use of pooled budgets. Originality/value - Effective reablement is critically dependent on service users' co-operation and motivation. It therefore needs to be highly responsive to their needs and views. This study offers specific user views about their experiences in different settings and at different stages of reablement, together with their ideas for how it might work better. The data are analysed within a single framework, offering an example of the type of local evaluation currently sought by the Department of Health. © Emerald Group Publishing Limited.
Abstract.
Hawton A, Green C, Telford C, Zajicek J, Wright D (2012). Using the Multiple Sclerosis Impact Scale to estimate health state utility values: mapping from the MSIS-29, version 2, to the EQ-5D and the SF-6D.
Value Health,
15(8), 1084-1091.
Abstract:
Using the Multiple Sclerosis Impact Scale to estimate health state utility values: mapping from the MSIS-29, version 2, to the EQ-5D and the SF-6D.
OBJECTIVES: the 29-item Multiple Sclerosis Impact Scale (MSIS-29) is a psychometrically validated patient-reported outcome measure increasingly used in trials of treatments for multiple sclerosis. However, it is non-preference-based and not amenable for use across policy decision-making contexts. Our objective was to statistically map from the MSIS-29, version 2, to the EuroQol five-dimension (EQ-5D) and the six-dimension health state short form (derived from short form 36 health survey) (SF-6D) to estimate algorithms for use in cost-effectiveness analyses. METHODS: the relationships between MSIS-29, version 2, and EQ-5D and SF-6D scores were estimated by using data from a cohort of people with multiple sclerosis in South West England (n=672). Six ordinary least squares (OLS), Tobit, and censored least adjusted deviation (CLAD) regression analyses were conducted on estimation samples, including the use of subscale and item scores, squared and interaction terms, and demographics. Algorithms from models with the smallest estimation errors (mean absolute error [MAE], root mean square error [RMSE], normalized RMSE) were then assessed by using separate validation samples. RESULTS: Tobit and CLAD. For the EQ-5D, the OLS models including subscale squared terms, and item scores and demographics performed comparably (MAE 0.147, RMSE 0.202 and MAE 0.147, RMSE 0.203, respectively), and estimated scores well up to 3 years post-baseline. Estimation errors for the SF-6D were smaller (OLS model including squared terms: MAE 0.058, RMSE 0.073; OLS model using item scores and demographics: MAE 0.059, RMSE 0.08), and the errors for poorer health states found with the EQ-5D were less pronounced. CONCLUSIONS: We have provided algorithms for the estimation of health state utility values, both the EQ-5D and SF-6D, from scores on the MSIS-29, version 2. Further research is now needed to determine how these algorithms perform in practical decision-making contexts, when compared with observed EQ-5D and SF-6D values.
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2011
Dickens AP, Richards SH, Hawton A, Taylor RS, Greaves CJ, Green C, Edwards R, Campbell JL (2011). An evaluation of the effectiveness of a community mentoring service for socially isolated older people: a controlled trial.
BMC Public Health,
11Abstract:
An evaluation of the effectiveness of a community mentoring service for socially isolated older people: a controlled trial.
BACKGROUND: Social isolation affects a significant proportion of older people and is associated with poor health outcomes. The current evidence base regarding the effectiveness of interventions targeting social isolation is poor, and the potential utility of mentoring for this purpose has not previously been rigorously evaluated. The purpose of this study was to examine the effectiveness of a community-based mentoring service for improving mental health, social engagement and physical health for socially isolated older people. METHODS: This prospective controlled trial compared a sample of mentoring service clients (intervention group) with a matched control group recruited through general practice. One hundred and ninety five participants from each group were matched on mental wellbeing and social activity scores. Assessments were conducted at baseline and at six month follow-up. The primary outcome was the Short Form Health Survey v2 (SF-12) mental health component score (MCS). Secondary outcomes included the SF-12 physical health component score (PCS), EuroQol EQ-5D, Geriatric Depression Score (GDS-10), social activity, social support and morbidities. RESULTS: We found no evidence that mentoring was beneficial across a wide range of participant outcomes measuring health status, social activity and depression. No statistically significant between-group differences were observed at follow-up in the primary outcome (p = 0.48) and in most secondary outcomes. Identifying suitable matched pairs of intervention and control group participants proved challenging. CONCLUSIONS: the results of this trial provide no substantial evidence supporting the use of community mentoring as an effective means of alleviating social isolation in older people. Further evidence is needed on the effectiveness of community-based interventions targeting social isolation. When using non-randomised designs, there are considerable challenges in the recruitment of suitable matches from a community sample. TRIAL REGISTRATION: SCIE Research Register for Social Care 105923.
Abstract.
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Hawton A, Green C, Dickens AP, Richards SH, Taylor RS, Edwards R, Greaves CJ, Campbell JL (2011). The impact of social isolation on the health status and health-related quality of life of older people.
Qual Life Res,
20(1), 57-67.
Abstract:
The impact of social isolation on the health status and health-related quality of life of older people.
PURPOSE: to investigate for socially isolated older people, and older people at risk of social isolation: (1) health status and health-related quality of life (HRQL); (2) the relationship between social isolation and health status/HRQL; (3) the relationship between two alternative measures of health status/HRQL. METHODS: Older people at risk of social isolation (n = 393) completed the EQ-5D and the SF-12. Multiple regression analyses were performed to examine the relationship between levels of social isolation and health status/HRQL, controlling for demographic/clinical characteristics. The agreement between EQ-5D and SF-6D (SF-12) scores was explored using descriptive psychometric techniques. RESULTS: Health status and health state values were much lower than UK general population age-matched norms. After controlling for depression, physical co-morbidities, age, gender, living alone status, employment and accommodation, social isolation was significantly associated, to a degree that was clinically relevant, with EQ-5D DSI, SF-6D (SF-12) and SF-12 MCS scores. The potential for ceiling effects on the EQ-5D with this population was identified. CONCLUSION: This work highlights the burden that social isolation may have on the health and well-being of older people. The potential HRQL gains from addressing social isolation may be considerable, with those at risk of social isolation also a key target group.
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2009
Mbugua Gitau G, Liversedge H, Goffey D, Hawton A, Liversedge N, Taylor M (2009). The influence of maternal age on the outcomes of pregnancies complicated by bleeding at less than 12 weeks.
Acta Obstet Gynecol Scand,
88(1), 116-118.
Abstract:
The influence of maternal age on the outcomes of pregnancies complicated by bleeding at less than 12 weeks.
The effect of maternal age on the outcome of threatened miscarriage after ultrasound has confirmed fetal heart (FH) pulsation was assessed. At a university teaching hospital, 138 women presenting with bleeding before 12 weeks' gestation were followed up until delivery or pregnancy loss. Those with multiple or ectopic pregnancy, social termination of pregnancy, assisted conception and temporary residence were excluded. Outcome measures were pregnancy loss, fetal abnormalities, preterm delivery, low birthweight and cesarean delivery. Age over 35 years was significantly associated with reduced live-birth and increased miscarriage rates. Women over 35 years of age had higher cesarean section and pregnancy loss rates than the younger women. The combination of bleeding in early pregnancy and advanced age increases risk of pregnancy loss even after ultrasound has confirmed FH pulsation.
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2008
Wyatt K, Carter M, Mahtani V, Barnard A, Hawton A, Britten N (2008). The impact of consumer involvement in research: an evaluation of consumer involvement in the London Primary Care Studies Programme.
Fam Pract,
25(3), 154-161.
Abstract:
The impact of consumer involvement in research: an evaluation of consumer involvement in the London Primary Care Studies Programme.
BACKGROUND: the value of consumer involvement in health services research is widely recognized. While there is a growing body of evidence about the principles of good consumer involvement, there is little research about the effect that involvement can have on the research. This evaluation assessed the level and impact of consumer involvement in the London Primary Care Studies Programme (LPCSP), all of whose individual projects had to demonstrate substantial involvement as a condition of funding. OBJECTIVE: to evaluate consumer involvement in the LPSCP and understand what impact consumers had on the research process and outcomes. METHODS: a multi-method case study approach was undertaken, using survey techniques, interviews, focus groups, observation and scrutiny of written documents. The overall data set comprised 61 questionnaires, 44 semi-structured interviews, 2 focus groups and 15 hours of observation of meetings. Eleven primary care-based research projects which together made up the LPCSP. RESULTS: an in-depth description of consumer involvement in the Programme was produced. Nine projects had consumers as co-applicants, four projects had been completed before the evaluation began and one was still ongoing at the time of the evaluation. of the eight projects which have produced final reports, all met their aims and objectives. Consumers had had an additional impact in the research, in the initial design of the study, in recruitment of the research subjects, in developing data collection tools, in collecting the data, in analysis and disseminating the findings. CONCLUSIONS: Consumer involvement in National Health Service research is a relatively recent policy development and while there is an increasing amount of literature about how and why consumers should be involved in research, there is less evidence about the impact of such involvement. This evaluation provides evidence about the impact that consumers have not only on the research process but also on the outcomes of the research.
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2007
Barber C, Powell R, Ellis A, Hewett J (2007). Comparing pain control and ability to eat and drink with standard therapy vs Gelclair: a preliminary, double centre, randomised controlled trial on patients with radiotherapy-induced oral mucositis.
Support Care Cancer,
15(4), 427-440.
Abstract:
Comparing pain control and ability to eat and drink with standard therapy vs Gelclair: a preliminary, double centre, randomised controlled trial on patients with radiotherapy-induced oral mucositis.
UNLABELLED: GOAL OF THE WORK: Oral mucositis (OM) is a functionally destructive complication of aggressive head and neck cancer therapy, often resulting in intense pain, an inability to eat and drink and secondary malnutrition and dehydration. The barrier-forming properties of Gelclair have shown promise in relieving such symptoms. The aim of this randomised-controlled trial was to evaluate the efficacy of Gelclair, as compared to standard therapy, as a means of short-term symptom control for patients suffering from radiotherapy-induced OM. MATERIALS AND METHODS: Twenty patients, with radiotherapy-induced OM seen in two oncology centres in Devon, were randomised to either standard therapy (Sucralfate and Mucaine) or Gelclair and assessed over 24 h. Both treatments were taken four times during the 24-h period, 30 min before meals. MAIN RESULTS: No significant difference was found between the Gelclair and standard therapy arms in terms of general pain (F = 1.512, df = 1, 17, ns). There did appear to be a trend towards pain improvement initially after the use of Gelclair, but this did not last for the full 24-h assessment period. There was no significant reduction in pain on speaking (F = 0.261, df = 1, 17, ns) nor an improvement in capacity to eat and drink, although the effects of standard therapy did appear to last longer than the Gelclair. CONCLUSION: This study indicates that Gelclair is no more effective than current standard practice in relieving the pain associated with radiotherapy-induced OM. Nevertheless, observations from this preliminary study warrant further investigation, with a view to shaping the way forward for head and neck cancer practice on a national level.
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2006
Trappes-Lomax T, Ellis A, Fox M, Taylor R, Power M, Stead J, Bainbridge I (2006). Buying Time I: a prospective, controlled trial of a joint health/social care residential rehabilitation unit for older people on discharge from hospital.
Health Soc Care Community,
14(1), 49-62.
Abstract:
Buying Time I: a prospective, controlled trial of a joint health/social care residential rehabilitation unit for older people on discharge from hospital.
The study's objective was to determine the effectiveness of a joint NHS/Social Services rehabilitation unit (a form of intermediate care) for older people on discharge from community hospital, compared with 'usual' community services. This was a controlled clinical trial in a practice setting. The intervention was 6 weeks in a rehabilitation unit where individuals worked with care/rehabilitation assistants and occupational therapists to regain independence. Controls went home with the health/social care services they would ordinarily receive. Participants were from two matched geographical areas in Devon: one with a rehabilitation unit, one without. Recruitment was from January 1999 to October 2001 in 10 community hospitals. Study eligibility was assessed using the unit's inclusion/exclusion criteria: 55 years or older and 'likely to benefit from a short-term rehabilitation programme' ('potential to improve', 'realistic and achievable goals' and 'motivation to participate'). Ninety-four people were recruited to the intervention and 112 to the control. The mean (standard deviation) age was 81.8 (8.0) years. The main outcome measure was prevention of institutionalisation assessed by the number of days from baseline interview to admission to residential/nursing care or death ('survival-at-home time'). Secondary outcome measures were time to hospital re-admission over 12 months, quality of life and coping ability. There were no significant differences between the groups on any outcome measure. Adjusted hazard ratio (95% CI) for 'survival-at-home time' was 1.13 (0.70-1.84), and 0.84 (0.53-1.33) for 'time to hospital re-admission'. However, attending the unit was associated with earlier hospital discharge. Median (interquartile range) days in hospital for the intervention graph was 27 (20, 40), and for the control graph was 35 (22, 47) (U = 4234, P = 0.029). These findings suggest a stay in a rehabilitation unit is no more effective than 'usual' care at diverting older people from hospital/long-term care. Alternative service configurations may be as effective, having implications for tailoring services more specifically to individual need and/or user preferences. However, the unit did appear to facilitate earlier discharges from community hospital.
Abstract.
Author URL.
Ellis A, Trappes-Lomax T, Fox M, Taylor R, Power M, Stead J, Bainbridge I (2006). Buying time II: an economic evaluation of a joint NHS/Social Services residential rehabilitation unit for older people on discharge from hospital.
Health Soc Care Community,
14(2), 95-106.
Abstract:
Buying time II: an economic evaluation of a joint NHS/Social Services residential rehabilitation unit for older people on discharge from hospital.
The study's aim was to investigate the cost-effectiveness of an NHS/Social Services short-term residential rehabilitation unit (a form of intermediate care) for older people on discharge from community hospital compared with 'usual' community services. An economic evaluation was conducted alongside a prospective controlled trial, which explored the effectiveness of a rehabilitation unit in a practice setting. The aim of the unit was to help individuals regain independence. A matched control group went home from hospital with the health/social care services they would ordinarily receive. The research was conducted in two matched geographical areas in Devon: one with a rehabilitation unit, one without. Participants were recruited from January 1999 to October 2000 in 10 community hospitals and their eligibility determined using the unit's strict inclusion/exclusion criteria, including 55 years or older and likely to benefit from a short-term rehabilitation programme: potential to improve, realistic, achievable goals, motivation to participate. Ninety-four people were recruited to the intervention and 112 to the control group. Details were collated of the NHS and Social Services resources participants used over a 12-month follow-up. The cost of the resource use was compared between those who went to the unit and those who went straight home. Overall, costs were very similar between the two groups. Aggregated mean NHS/Social Services costs for the 12 months of follow-up were pound 8542.28 for the intervention group and pound 8510.68 for the control. However, there was a clear 'seesaw' effect between the NHS and Social Services: the cost of the unit option fell more heavily on Social Services (pound 5011.56, whereas pound 3530.72 to the NHS), the community option more so on the NHS (pound 5146.74, whereas pound 3363.94 to Social Services). This suggests that residential rehabilitation for older people is no more cost-effective over a year after discharge from community hospital than usual community services. The variability in cost burden between the NHS and Social Services has implications for 'who pays' and being sure that agencies share both pain and gain.
Abstract.
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Frost S, Moseley A, Tierney S, Hutton A, Ellis A, Duffy M, Newman T (2006). The Evidence Guide: Using Research and Evaluation in Social Care and Allied Professions. Barnardo's / Centre for Evidence-Based Social Services.
2005
Newman T, Moseley A, Tierney S, Ellis A (2005). Evidence Based Social Work: a guide for the perplexed. Lyme Regis, Russell House.
2004
Sheldon B, Chilvers R, Ellis A, Moseley A, Tierney S (2004). A pre-post empirical study of obstacles to, and opportunities for, evidence-based practice in social care. In Bilson A (Ed) Evidence-Based Practice and Social Work, London: Whiting & Birch.
2003
Sweeney G, Ellis A (2003). Making an impact: exploring delegates' perceptions of the clinical governance development programme. Clinical Governance: an International Journal, 8(3), 262-270.
Trappes-Lomax T, Ellis A (2003). Real life research: Bridging the gap between research and practice. Journal of Integrated Care, 11(4), 17-27.
2002
Trappes-Lomax T, Ellis A, Fox M (2002). Real life research: Building an evidence base for intermediate care. Managing Community Care, 10(6), 15-21.
2001
Trappes-Lomax T, Ellis A (2001). Real life research: Designing and implementing a study on the health/social care interface. Managing Community Care, 9(3), 22-30.
Trappes-Lomax T, Ellis A, Fox M (2001). Real life research: the ups and sowns of an intermediate care study. Managing Community Care, 9(5), 18-24.
1999
Burgoyne CB, Routh DA, Ellis A (1999). The transition to the Euro: Some perspectives from Economic Psychology. Journal of Consumer Policy, 22, 91-116.
1998
Blacklay A, Eiser C, Ellis A (1998). Development and evaluation of an information booklet for adult survivors of cancer in childhood.
Archives of Disease in Childhood,
78(4), 340-344.
Abstract:
Development and evaluation of an information booklet for adult survivors of cancer in childhood
Aims - to determine the need for information among survivors of childhood cancer, to assess the acceptability of an information booklet, and to investigate the effectiveness of the booklet in increasing knowledge and influencing health related behaviours. Subjects - Fifty survivors of childhood cancer (age range 14-32 years) who were consecutive attendees at a long term follow up clinic. Methods - the booklet was developed for young people aged 14 years and above by the United Kingdom Children's Cancer Study Group Late Effects Group. Included is information about treatment of cancer, general advice about a healthy lifestyle, the rationale for long term follow up, and information about employment and life insurance problems. Survivors were interviewed at the follow up clinic, offered the booklet, and contacted approximately one week later for a telephone interview. The clinic interview assessed survivors' understanding of their illness and treatment and its impact on their lives, and their preferences for further information. The telephone interview determined survivors' general reaction to the booklet, whether it increased knowledge and influenced health related behaviours. Results - all those interviewed accepted the written information and agreed to a follow up interview. Survivors were enthusiastic about being given more information. Over three quarters learned new information from the booklet. There were no indications that the information was associated with anxiety for any demographic or clinical subgroups. After reading the booklet there was an increased awareness of the risk from sunbathing (p < 0.05), and greater appreciation of the importance of follow up (p < 0.05). Conclusions - These results suggest that written information is likely to be an acceptable and effective supplement to discussions with medical professionals and may readily be incorporated into long term follow up clinics.
Abstract.
Ellis A, Stores G, Mayou R (1998). Psychological concequences of road traffic accidents in children. European Child & Adolescent Psychiatry, 7, 61-68.
Stores G, Ellis AJ, Wiggs L (1998). Sleep and psychological disturbance in nocturnal asthma. Archives of Disease in Childhood, 78(5), 413-419.
1997
Eiser C, Cool P, Grimer RJ, Carter SR, Cotter IM, Ellis AJ, Kopel S (1997). Quality of life in children following treatment for a malignant primary bone tumour around the knee.
Sarcoma,
1(1), 39-45.
Abstract:
Quality of life in children following treatment for a malignant primary bone tumour around the knee.
Purpose. We report on the quality of life following treatment for a malignant primary bone tumour around the knee in skeletally immature children.Patients. Patients (n = 41; mean age = 18 years; range 8-28) had all experienced chemotherapy in a neo-adjuvant setting, surgical excision of the tumour and endoprosthetic replacement.Methods. Interviews were conducted separately with the child and mother and focused on mobility, body image and the impact of treatment on schooling, employment and plans for the future.Results. Mobility in the group was variable. Only 12% reported that they could run with any confidence. The proportion who were able to swim (49%) or ride a bike (46%) was higher. All had experienced major disruption in schooling (mean absence following diagnosis = 12 months). Eight had repeated a school year and 41% patients reported that their schoolwork was affected. As a result of their experience, eight (six females and two males) chose health-related employment. Concerns for the future were highest among males and those with manual jobs. Three patients were receiving psychiatric support, in relation to extreme concern about the risk of recurrence. All expressed satisfaction with treatment, and older patients believed that the prosthesis gave a better quality of life than amputation.Discussion. Our data suggest that outcome following limb-salvage surgery is variable. Education is disrupted. Even so, only two left school with no qualifications. Employment is most restricted among males with few qualifications who may benefit from sensitive vocational counselling.
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Eiser C, Cool P, Grimer R, Carter S, Ellis A, Kopel S, Eiser JR (1997). The role of monitoring in determining quality of life following treatment for a bone tumor.
Int J Behav Med,
4(4), 397-414.
Abstract:
The role of monitoring in determining quality of life following treatment for a bone tumor.
Interviews were conducted with 34 young people who had previously been treated for a malignant bone tumor around the knee. These interviews focused on the impact of treatment on activities and perceptions of the risk of recurrence and need for future surgery a coding schema based on a "monitoring-blunting" framework was adopted (Miller, 1995). Quality of life was assessed using a generic and disease-specific measure. Based on interview data, respondents were categorized as negativistic monitors, adaptive monitors, and nonmonitors. There were no differences between groups in terms medical indicators (number of operations). Negativistic monitors reported poorer quality of life compared with the other two groups. There was no increase in nonmonitoring with time since diagnosis as reported in previous work. It is suggested that patients' self-ratings of quality of life are related to the way in which they monitor information and this may be independent of clinical function. Clinical implications, especially in terms of how potentially threatening information about late-effects of treatment are given to patients, are discussed.
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