Publications by year
2022
de Boer D, van den Berg M, Ballester M, Bloemeke J, Boerma W, de Bienassis K, Groenewegen P, Groene O, Kendir C, Klazinga N, et al (2022). Assessing the outcomes and experiences of care from the perspective of people living with chronic conditions, to support countries in developing people-centred policies and practices: study protocol of the International Survey of People Living with Chronic Conditions (PaRIS survey).
BMJ Open,
12(9).
Abstract:
Assessing the outcomes and experiences of care from the perspective of people living with chronic conditions, to support countries in developing people-centred policies and practices: study protocol of the International Survey of People Living with Chronic Conditions (PaRIS survey).
INTRODUCTION: in view of growing populations with chronic conditions, many countries are redesigning their health systems. However, little information is available about how health systems perform from the perspective of people living with chronic conditions. The Organisation for Economic Co-operation and Development (OECD) Member States therefore mandated the OECD to initiate the International Survey of People Living with Chronic Conditions (PaRIS survey), which aims to provide insight in outcomes and experiences of care as reported by people living with chronic conditions. The PaRIS-SUR consortium has been tasked by the OECD to support the development and implementation of the survey. METHODS AND ANALYSIS: As primary care services play a pivotal role in the management of chronic conditions, the PaRIS survey will be implemented in the primary care setting. Data will be collected with a survey among users of primary care services aged 45 years or older, of whom many have chronic conditions. An additional survey is conducted among their primary care providers. The nested study design will allow analysis of the patient-reported data in relation to characteristics of and care provided by primary care providers within and across countries. In 2022, the survey will be tested in a Field Trial in participating countries. Data for cross-country comparison will be collected by the Main Survey in 2023. ETHICS AND DISSEMINATION: Informed consent will be obtained from primary care providers and service users. National Project Managers search ethical approval of the survey in their country, if required. Reporting by the OECD will focus on questions for international comparison. A secured information technology platform will be developed for participants and stakeholders in countries to receive feedback and answer their own questions. Findings will also be disseminated through an international OECD flagship report, conferences, scientific papers and policy briefs, to inform strategies to improve care for people living with chronic conditions throughout the world.
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2021
Davey AF, Coombes J, Porter I, Green C, Mewse AJ, Valderas JM (2021). Development of a conceptual model for research on cyclical variation of patient reported outcome measurements (PROMs) in patients with chronic conditions: a scoping review.
J Patient Rep Outcomes,
5(1).
Abstract:
Development of a conceptual model for research on cyclical variation of patient reported outcome measurements (PROMs) in patients with chronic conditions: a scoping review.
BACKGROUND: Although circadian, seasonal, and other cycles have been observed for a number of chronic conditions, their impact on patient reported outcomes measurements (PROMs) has not been systematically explored, rendering our understanding of the effect of time of measurement on PROM scores very limited. The aim was to conduct a scoping review to determine what is known about how intra-individual cyclical variation might affect the way individuals with chronic conditions respond to patient-reported outcome measures. METHODS: a protocol of a systematic scoping review was registered on PROSPERO (CRD42017058365). We developed a search strategy based on previous relevant reviews and implemented it in: MEDLINE, Embase, PsycINFO, and CINAHL. No restrictions were placed on article types and backward and forward citation searches were conducted. Screening and data extraction were independently completed by up to four reviewers. An adapted version of CASP criteria was used to appraise the quality of included articles. Concepts that were important in understanding the impact of cyclical variation on PROM scores were elicited from the papers and iteratively refined through discussion amongst the authors. RESULTS: 2420 references resulted from the searches, with 33 articles meeting the inclusion criteria. Most study designs included observational research (particularly ecological momentary assessment), 2 were RCTs and 2 were systematic reviews. Studies mainly focused on specific health conditions: mental health, respiratory and musculoskeletal. There was a lack of qualitative research and theoretical framework to explore these concepts more fully. Five overarching concepts emerged: variation in outcomes, variation of scores, psychological status, individual factors, and environmental/situational factors. A conceptual model was developed outlining the relationships between these concepts. CONCLUSIONS: There is empirical evidence that supports cyclical variation in PROM scores across different chronic conditions, with potential very significant implications for administration and interpretation of PROMs. The proposed conceptual model can support further research in this area.
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Porter I, Davey A, Gangannagaripalli J, Evans J, Bramwell C, Evans P, Gibbons C, Valderas JM (2021). Integrating Patient Reported Outcome Measures (PROMs) into routine nurse-led primary care for patients with multimorbidity: a feasibility and acceptability study.
Health and Quality of Life Outcomes,
19(1).
Abstract:
Integrating Patient Reported Outcome Measures (PROMs) into routine nurse-led primary care for patients with multimorbidity: a feasibility and acceptability study
Background: the use of Patient Reported Outcome Measures (PROMS) in clinical practice has the potential to promote patient-centred care and improve patients’ quality of life. Individualized PROMs may be particularly helpful in identifying, prioritizing and monitoring health problems of patients with multimorbidity. We aimed to develop an intervention centred around PROMs feedback as part of Primary Care annual reviews for patients with multimorbidity and evaluate its feasibility and acceptability. Methods: We developed a nurse-oriented intervention including (a) training of nurses on PROMs; (b) administration to patients with multimorbidity of individualized and standardized PROMS; and (c) feedback to both patients and nurses of PROMs scores and interpretation guidance. We then tailored the intervention to patients with two or more highly prevalent conditions (asthma, COPD, diabetes, heart failure, depression, and hip/knee osteoarthritis) and designed a non-controlled feasibility and acceptability evaluation in a convenience sample of primary care practices (5). PROMs were administered and scores fed back immediately ahead of scheduled annual reviews with nurses. Patients and nurses rated the acceptability of the intervention using with a brief survey including optional free comments. Thematic analysis of qualitative interviews with a sample of participating patients (10) and nurses (4) and of survey free comments was conducted for further in-depth evaluation of acceptability. Feasibility was estimated based on rates of participation and completion. Results: Out of 68 recruited patients (mean age 70; 47% female), 68 completed the PROMs (100%), received feedback (100%) and confirmed nurse awareness of their scores (100%). Most patients (83%) “agreed”/”strongly agreed” that the PROMs feedback had been useful, a view supported by nurses in 89% of reviews. Thematic analysis of rich qualitative data on PROMS administration, feedback and role in annual reviews indicated that both patients and nurses perceived the intervention as acceptable and promising, emphasizing its comprehensiveness and patient-centredness. Conclusions: We have developed and tested an intervention focusing on routine PROM assessment of patients with multimorbidity in Primary Care. Preliminary findings support its feasibility and a high degree of acceptability from both patients and nurses. The next step is to conduct a full-scale trial for evaluating the effectiveness of the proposed intervention.
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Gibbons C, Porter I, Gonçalves-Bradley DC, Stoilov S, Ricci-Cabello I, Tsangaris E, Gangannagaripalli J, Davey A, Gibbons EJ, Kotzeva A, et al (2021). Routine provision of feedback from patient-reported outcome measurements to healthcare providers and patients in clinical practice.
Cochrane Database Syst Rev,
10(10).
Abstract:
Routine provision of feedback from patient-reported outcome measurements to healthcare providers and patients in clinical practice.
BACKGROUND: Patient-reported outcomes measures (PROMs) assess a patient's subjective appraisal of health outcomes from their own perspective. Despite hypothesised benefits that feedback on PROMs can support decision-making in clinical practice and improve outcomes, there is uncertainty surrounding the effectiveness of PROMs feedback. OBJECTIVES: to assess the effects of PROMs feedback to patients, or healthcare workers, or both on patient-reported health outcomes and processes of care. SEARCH METHODS: We searched MEDLINE, Embase, CENTRAL, two other databases and two clinical trial registries on 5 October 2020. We searched grey literature and consulted experts in the field. SELECTION CRITERIA: Two review authors independently screened and selected studies for inclusion. We included randomised trials directly comparing the effects on outcomes and processes of care of PROMs feedback to healthcare professionals and patients, or both with the impact of not providing such information. DATA COLLECTION AND ANALYSIS: Two groups of two authors independently extracted data from the included studies and evaluated study quality. We followed standard methodological procedures expected by Cochrane and EPOC. We used the GRADE approach to assess the certainty of the evidence. We conducted meta-analyses of the results where possible. MAIN RESULTS: We identified 116 randomised trials which assessed the effectiveness of PROMs feedback in improving processes or outcomes of care, or both in a broad range of disciplines including psychiatry, primary care, and oncology. Studies were conducted across diverse ambulatory primary and secondary care settings in North America, Europe and Australasia. A total of 49,785 patients were included across all the studies. The certainty of the evidence varied between very low and moderate. Many of the studies included in the review were at risk of performance and detection bias. The evidence suggests moderate certainty that PROMs feedback probably improves quality of life (standardised mean difference (SMD) 0.15, 95% confidence interval (CI) 0.05 to 0.26; 11 studies; 2687 participants), and leads to an increase in patient-physician communication (SMD 0.36, 95% CI 0.21 to 0.52; 5 studies; 658 participants), diagnosis and notation (risk ratio (RR) 1.73, 95% CI 1.44 to 2.08; 21 studies; 7223 participants), and disease control (RR 1.25, 95% CI 1.10 to 1.41; 14 studies; 2806 participants). The intervention probably makes little or no difference for general health perceptions (SMD 0.04, 95% CI -0.17 to 0.24; 2 studies, 552 participants; low-certainty evidence), social functioning (SMD 0.02, 95% CI -0.06 to 0.09; 15 studies; 2632 participants; moderate-certainty evidence), and pain (SMD 0.00, 95% CI -0.09 to 0.08; 9 studies; 2386 participants; moderate-certainty evidence). We are uncertain about the effect of PROMs feedback on physical functioning (14 studies; 2788 participants) and mental functioning (34 studies; 7782 participants), as well as fatigue (4 studies; 741 participants), as the certainty of the evidence was very low. We did not find studies reporting on adverse effects defined as distress following or related to PROM completion. AUTHORS' CONCLUSIONS: PROM feedback probably produces moderate improvements in communication between healthcare professionals and patients as well as in diagnosis and notation, and disease control, and small improvements to quality of life. Our confidence in the effects is limited by the risk of bias, heterogeneity and small number of trials conducted to assess outcomes of interest. It is unclear whether many of these improvements are clinically meaningful or sustainable in the long term. There is a need for more high-quality studies in this area, particularly studies which employ cluster designs and utilise techniques to maintain allocation concealment.
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Porter I, Rijken M, Sunol R, Williams R, Delgado JM, Ballester M, Thomas L, van den Berg M, De Bienassis K, Kendir C, et al (2021). The International Survey of People Living with Chronic Conditions (PaRIS survey): development of the conceptual framework.
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Porter I, Rijken M, Groene O, Sunol R, Williams R, van den Berg M, Delgado JM, Evans JP, Ballester M, Bloemeke J, et al (2021). The International Survey of People Living with Chronic Conditions (PaRIS survey): development of the patient questionnaire.
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2019
Evans JP, Porter I, Gangannagaripalli JB, Bramwell C, Davey A, Smith CD, Fine N, Goodwin VA, Valderas JM (2019). Assessing Patient-Centred Outcomes in Lateral Elbow Tendinopathy: a Systematic Review and Standardised Comparison of English Language Clinical Rating Systems.
Sports Medicine - Open,
5Abstract:
Assessing Patient-Centred Outcomes in Lateral Elbow Tendinopathy: a Systematic Review and Standardised Comparison of English Language Clinical Rating Systems
© 2019, the Author(s). Background: Lateral elbow tendinopathy (LET) is a common condition affecting adults. Although a lack of treatment consensus continues to prompt numerous effectiveness studies, there is a paucity of clear guidance on the choice of outcome measure. Our aim was to undertake a standardised evaluation of the available clinical rating systems that report patient-centred outcomes in LET. Methods: a systematic review of studies reporting the development, assessment of metric properties and/or use of instruments aiming to quantify LET-specific patient-centred outcome measures was conducted in MEDLINE, Embase and CINAHL (inception-2017) adhering to PRISMA guidance. The evidence for each instrument was independently assessed by two reviewers using the standardised evaluating measures of patient-reported outcomes (EMPRO) method evaluating overall and attribute-specific instrument performance (metric properties and usability). EMPRO scores > 50/100 were considered indicative of high performance. Results: Out of 7261 references, we identified 105 articles reporting on 15 instruments for EMPRO analysis. Median performance score was 41.6 (range 21.6–72.5), with four instruments meeting high-performance criteria: quick Disabilities of the Arm Shoulder and Hand score (qDASH) (72.5), DASH (66.9), Oxford Elbow Score (OES) (66.6) and Patient-Rated Tennis Elbow Evaluation (PRTEE) (57.0). One hundred seventy-nine articles reported instrument use internationally with DASH as the most frequent (29.7% articles) followed by PRTEE (25.6%), MEPS (15.1%) and qDASH (8.1%). The correlation between frequency of use and performance was r = 0.35 (95%CI − 0.11; 0.83). Conclusions: This is the first study to provide standardised guidance on the choice of measures for LET. A large number of clinical rating systems are both available and being used for patients with LETs. Robust evidence is available for four measures, the DASH, QDASH, PRTEE and OES. The use of instruments in the literature is only in part explained by instrument performance.
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Sidey-Gibbons C, Porter I, Tsangaris E, Valderas J, Grp CPROMR (2019). Routine provision of information on patient-reported outcomes measures to healthcare providers and patients in clinical practice: a Cochrane systematic review.
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Davey A, Porter I, Coombes J, Green C, Valderas J (2019). Time-dependent variation of patient reported outcome (PRO) measurement in patients with chronic conditions: a scoping review.
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2018
Evans JP, Smith CD, Fine NF, Porter I, Gangannagaripalli J, Goodwin VA, Valderas JM (2018). Clinical rating systems in elbow research—a systematic review exploring trends and distributions of use.
Journal of Shoulder and Elbow Surgery,
27, e98-e106.
Abstract:
Clinical rating systems in elbow research—a systematic review exploring trends and distributions of use
© 2018 Journal of Shoulder and Elbow Surgery Board of Trustees Background: Clinical rating systems are used as outcome measures in clinical trials and attempt to gauge the patient’s view of his or her own health. The choice of clinical rating system should be supported by its performance against established quality standards. Methods: a search strategy was developed to identify all studies that reported the use of clinical rating systems in the elbow literature. The strategy was run from inception in Medline Embase and CINHAL. Data extraction identified the date of publication, country of data collection, pathology assessed, and the outcome measure used. Results: We identified 980 studies that reported clinical rating system use. Seventy-two separate rating systems were identified. Forty-one percent of studies used ≥2 separate measures. Overall, 54% of studies used the Mayo Elbow Performance Score (MEPS). For arthroplasty, 82% used MEPS, 17% used Disabilities of Arm, Shoulder and Hand (DASH), and 7% used QuickDASH. For trauma, 66.7% used MEPS, 32% used DASH, and 23% used the Morrey Score. For tendinopathy, 31% used DASH, 23% used Patient-Rated Tennis Elbow Evaluation (PRTEE), and 13% used MEPS. Over time, there was an increased proportional use of the MEPS, DASH, QuickDASH, PRTEE, and the Oxford Elbow Score. Conclusions: This study identified a wide choice and usage of clinical rating systems in the elbow literature. Numerous studies reported measures without a history of either a specific pathology or cross-cultural validation. Interpretability and comparison of outcomes is dependent on the unification of outcome measure choice. This was not demonstrated currently.
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Davey A, Porter I, Green C, Valderas JM (2018). EXPLORING TIME-DEPENDENT VARIATION OF PATIENT-REPORTED OUTCOME SCORES ACROSS DIFFERENT TIME-POINTS FOR PATIENTS WITH MULTIPLE CONDITIONS: a MIXED METHODS LONGITUDINAL STUDY.
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Quinn C, Denman K, Smithson P, Owens C, Sheaff R, Campbell J, Porter I, Annison J, Byng R (2018). General practitioner contributions to achieving sustained healthcare for offenders: a qualitative study.
BMC Fam Pract,
19(1).
Abstract:
General practitioner contributions to achieving sustained healthcare for offenders: a qualitative study.
BACKGROUND: Offenders frequently have substantial healthcare needs and, like many other socially marginalised groups, often receive healthcare in inverse proportion to their needs. Improved continuity of healthcare over time could contribute to addressing these needs. General Practitioners need to be able to support people with complex social and medical problems, even in systems that are not specifically designed to manage individuals with such degrees of complexity. We aimed to examine offenders' perspectives on factors that contributed to, or worked against, creating and sustaining their access to healthcare. METHODS: from a sample of 200 participants serving community or prison sentences in South West (SW) and South East (SE) England, who were interviewed about their health care experiences as part of the Care for Offenders: Continuity of Access (COCOA) study, we purposively sampled 22 participants for this sub-study, based on service use. These interviews were transcribed verbatim. A thematic analytic approach initially applied 5 a priori codes based on access and different components of continuity. Data were then examined for factors that contributed to achieving and disrupting access and continuity. RESULTS: Participants described how their own life situations and behaviours contributed to their problems in accessing healthcare and also identified barriers created by existing access arrangements. They also highlighted how some General Practitioners used their initiative and skills to 'workaround' the system, and build positive relationships with them; feeling listened to and building trust were particularly valued, as was clear communication. Limitations faced by General Practitioners included a lack of appropriate services to refer people to, where the offender patients would meet the access criteria, and disagreements regarding medication prescriptions. CONCLUSIONS: General Practitioners can make a positive contribution to supporting access to healthcare for an under-served population by facilitating more flexible and less formal access arrangements, by using their relationship skills, and by problem-solving. General Practitioners should recognise their potential to transform people's experience of healthcare whilst working in imperfect systems, particularly with vulnerable and marginalised groups who have complex medical and social needs.
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Goodwin V, Evans J, Smith C, Gangannagaripalli J, Porter I, Valderas J (2018). Patient-Centred Outcomes in Lateral Elbow Tendinopathy: a systematic review of available evidence in UK populations. Shoulder and Elbow
Sweet D, Byng R, Webber M, Enki DG, Porter I, Larsen J, Huxley P, Pinfold V (2018). Personal well-being networks, social capital and severe mental illness: exploratory study.
Br J Psychiatry,
212(5), 308-317.
Abstract:
Personal well-being networks, social capital and severe mental illness: exploratory study.
BACKGROUND: Connectedness is a central dimension of personal recovery from severe mental illness (SMI). Research reports that people with SMI have lower social capital and poorer-quality social networks compared to the general population.AimsTo identify personal well-being network (PWN) types and explore additional insights from mapping connections to places and activities alongside social ties. METHOD: We carried out 150 interviews with individuals with SMI and mapped social ties, places and activities and their impact on well-being. PWN types were developed using social network analysis and hierarchical k-means clustering of this data. RESULTS: Three PWN types were identified: formal and sparse; family and stable; and diverse and active. Well-being and social capital varied within and among types. Place and activity data indicated important contextual differences within social connections that were not found by mapping social networks alone. CONCLUSIONS: Place locations and meaningful activities are important aspects of people's social worlds. Mapped alongside social networks, PWNs have important implications for person-centred recovery approaches through providing a broader understanding of individual's lives and resources.Declaration of interestNone.
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Mounce LTA, Campbell JL, Henley WE, Tejerina Arreal MC, Porter I, Valderas JM (2018). Predicting Incident Multimorbidity.
Ann Fam Med,
16(4), 322-329.
Abstract:
Predicting Incident Multimorbidity.
PURPOSE: Multimorbidity is associated with adverse outcomes, yet research on the determinants of its incidence is lacking. We investigated which sociodemographic, health, and individual lifestyle (eg, physical activity, smoking behavior, body mass index) characteristics predict new cases of multimorbidity. METHODS: We used data from 4,564 participants aged 50 years and older in the English Longitudinal Study of Aging that included a 10-year follow-up period. Discrete time-to-event (complementary log-log) models were constructed for exploring the associations of baseline characteristics with outcomes between 2002-2003 and 2012-2013 separately for participants with no initial conditions (n = 1,377) developing multimorbidity, any increase in conditions within 10 years regardless of initial conditions, and the impact of individual conditions on incident multimorbidity. RESULTS: the risks of developing multimorbidity were positively associated with age, and they were greater for the least wealthy, for participants who were obese, and for those who reported the lowest levels of physical activity or an external locus of control (believing that life events are outside of one's control) for all groups regardless of baseline conditions (all linear trends
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Davey A, Green C, Porter I, Valderas JM (2018). TIME-DEPENDENT VARIATION OF PRO SCORES IN CHRONIC CONDITIONS: a SCOPING REVIEW.
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2017
Evans JP, Smith CM, Porter I, Gangannagaripalli J, Bramwell C, Davey AF, Goodwin V, Valderas JM (2017). Assessing condition-specific health-related quality of life in lateral epicondylar tendinopathy: a systematic and standardised comparison of available instruments.
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Gangannagaripalli J, Porter I, Bradley DG, Ricci-Cabello I, Valderas JM (2017). Individualised patient-reported outcome measures: a systematic review.
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Velikova G, Valderas JM, Potter C, Batchelder L, A’Court C, Baker M, Bostock J, Coulter A, Fitzpatrick R, Forder J, et al (2017). Proceedings of Patient Reported Outcome Measure’s (PROMs) Conference Oxford 2017: Advances in Patient Reported Outcomes Research. Health and Quality of Life Outcomes, 15(Suppl 1).
Davey AF, Porter I, Green C, Coombes J, Gibbons C, Valderas JM (2017). Time-dependent variation of PRO measurements in patients with chronic health conditions: a systematic scoping review.
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2016
Gangannagaripalli J, Porter I, Bramwell C, Evans J, Lopez JRG, Valderas JM (2016). Estimating minimum important difference (MID) for chronic disease-specific patient reported outcome measures (PROMs): a systematic review.
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Porter I, Gonçalves-Bradley D, Ricci-Cabello I, Gibbons C, Gangannagaripalli J, Fitzpatrick R, Black N, Greenhalgh J, Valderas JM (2016). Framework and guidance for implementing patient-reported outcomes in clinical practice: evidence, challenges and opportunities.
J Comp Eff Res,
5(5), 507-519.
Abstract:
Framework and guidance for implementing patient-reported outcomes in clinical practice: evidence, challenges and opportunities.
Patient-reported outcomes (PROs) are reports of the status of a patient's health condition that come directly from the patient. While PRO measures are a well-developed technology with robust standards in research, their use for informing healthcare decisions is still poorly understood. We review relevant examples of their application in the provision of healthcare and examine the challenges associated with implementing PROs in clinical settings. We evaluate evidence for their use and examine barriers to their uptake, and present an evidence-based framework for the successful implementation of PROs in clinical practice. We discuss current and future developments for the use of PROs in clinical practice, such as individualized measurement and computer-adaptive testing.
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Porter I, Valderas JM (2016). Patient reported outcomes (PROMs) based recommendation in clinical guidance for the management of chronic conditions in the United Kingdom.
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Quinn C, Porter I, Pinfold V, Byng R (2016). Retaining Cross-Case Generalisability and Within-Case Specificity: a Methodological Exploration.
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Porter I, Evans P, Valderas JM (2016). Routine individualized PRO feedback for the management of patients with multimorbidity in primary care: a pilot study in General Practice in England.
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2015
Porter I, Valderas JM (2015). Development of a feedback form for routine clinical use of PROs in primary care for patients with multimorbidity.
QUALITY OF LIFE RESEARCH,
24, 181-182.
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Pinfold V, Sweet D, Porter I, Quinn C, Byng R, Griffiths C, Billsborough J, Enki DG, Chandler R, Webber M, et al (2015). Improving community health networks for people with severe mental illness: a case study investigation. Health Services and Delivery Research, 3(5), 1-234.
Gonçalves Bradley DC, Gibbons C, Ricci-Cabello I, Bobrovitz NJ, Gibbons EJ, Kotzeva A, Alonso J, Fitzpatrick R, Bower P, van der Wees PJ, et al (2015). Routine provision of information on patient-reported outcome measures to healthcare providers and patients in clinical practice.
Cochrane Database of Systematic Reviews,
2015(4).
Abstract:
Routine provision of information on patient-reported outcome measures to healthcare providers and patients in clinical practice
This is the protocol for a review and there is no abstract. The objectives are as follows: to assess the impact of the routine use of patient-reported outcomes (PROs) in clinical practice on the process of care (including patient-physician communication, professionals awareness of patients' quality of life, diagnosis and recognition rates, treatment rates, health services and resource use, as well as patient behaviour); patients' and professionals' experiences of care; and health outcomes (both generic and disease-specific, using both routinely-used clinical measures and PROs).
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Porter I, Valderas JM (2015). Use of PROs in clinical guidance for the management of chronic conditions in primary care in the United Kingdom.
QUALITY OF LIFE RESEARCH,
24, 75-76.
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