Background: Patient reported outcome measures (PROMs) are regularly used in research, and increasingly in clinical practice for individuals with chronic conditions, to gather patients’ perspective on their experience of health. Whereas research applications have focused on the use of aggregate PROMs information, biological rhythms and other intraindividual cycles have potential implications for how patients report on their health using PROMs, and ultimately the scores that are produced, with potentially important implications for the use of PROMs at the individual level. Research on this issue is, however, sparse and results in a lack of understanding of the key concepts, methods and associated phenomena associated with individual cyclical variation in PROMs scores.
Aim: the aim of this thesis is to explore the cyclical variation in patient reported outcome measurements (PROMs) in patients with chronic conditions. Specific objectives included: a) the development of a conceptual model for researching cyclical variation of PROMs, b) the elicitation of patient perspectives on cyclical variation in PROMs, and c) the mapping, selection and use of best methods for the statistical modelling of cyclical variation.
Method:. This thesis comprised of three sequential studies which informed each other to address the aims and objectives of the thesis. A mixed methods scoping review, considering both quantitative and qualitative research, was conducted to map out the knowledge on cyclical variation of patient reported outcome measurements in patients with chronic conditions. Findings from this scoping review informed the development of a conceptual model building up on established outcomes models. A longitudinal mixed methods study was conducted to understand the factors that were important in the cyclical variation of PROMs from the patients’ perspective, to test the concepts within the conceptual model and to refine it. Sixteen individuals recruited with varying combinations of asthma, depression and osteoarthritis and conducted a total of 3 interviews with each participant over a 9-month period, in order to account for seasonal changes. Finally, variation in outcome scores for a range of symptoms (aural fullness, tinnitus, dizziness, and hearing loss) in Meniere’s disease was modelled by applying Fourier transformation using quantitative longitudinal data on Meniere’s symptoms captured across time.
Results: the scoping review identified 33 articles which provided empirical evidence for cyclical variation in PROMs, in respiratory, musculoskeletal, mental health and neurological conditions. The hypotheses and findings in the documents were used to develop a conceptual model of cyclical variation of PROMs in chronic conditions which included the following concepts: determinants (biorhythms, timing and type of healthcare interventions), variation in outcomes (health conditions, outcomes, and time-period), a mediator (psychological health status), moderators (individual and environmental factors), and variation in scores (cognition, integration, measurement, recall and interpretation). Patient interviews confirmed both cyclical variations in outcomes as experienced by patients themselves as well as the relevance of the concepts included in the conceptual model and supported the inclusion of additional ones (sleep, partners interpretation of outcomes and salience of recent episodes and/or flare ups). Fourier analysis of the Meniere’s disease data showed that the severity of symptoms was reported differently across a 24-hour period. Individuals reported the morning to be the worst time of the day for hearing loss and dizziness, tinnitus, and aural fullness peaking around 1/2pm. However, all four symptoms presented a decline in symptom severity by the evening.
Conclusion: This thesis has laid the theoretical and methodological foundation for future research on the cyclical variation of PROMs in patients with chronic health conditions. It has confirmed its existence for selected conditions based on literature synthesis and a mixed methods study. The new conceptual model developed as part of this work, which identifies key sources of variation and hypothesises pathways that may explain intraindividual variation of PROMs, will facilitate further research. Findings from the, to my best knowledge, first longitudinal mixed methods study eliciting narratives of cyclical variation may benefit from replication in other patients and for other conditions. Finally, Fourier analyses, emerges as the analytical approach of choice to model cyclical variation of PROMs. Potential application of PROMs to monitor the impact of chronic conditions on patient’s health needs to take into account cyclical variation in the selection, administration and interpretation of PROMs scores.

© 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.

BACKGROUND: Around 17% of people attending UK cardiac rehabilitation programmes have depression. Optimising psychological wellbeing is a rehabilitation goal, but provision of psychological care is limited. We developed and piloted an Enhanced Psychological Care (EPC) intervention embedded within cardiac rehabilitation, aiming to test key areas of uncertainty to inform the design of a definitive randomised controlled trial (RCT) and economic evaluation. METHODS: an external pilot randomised controlled trial (RCT) randomised eight cardiac rehabilitation teams (clusters) to either usual care of cardiac rehabilitation provision (UC), or EPC in addition to UC. EPC comprised mental health care coordination and patient-led behavioural activation with nurse support. Adults eligible for cardiac rehabilitation following an acute coronary syndrome and identified with new-onset depressive symptoms during an initial nurse assessment were eligible. Measures were performed at baseline and 5- and 8-month follow-ups and compared between EPC and UC. Team and participant recruitment and retention rates, and participant outcomes (clinical events, depression, anxiety, health-related quality of life, patient experiences, and resource use) were assessed. RESULTS: Eight out of twenty teams were recruited and randomised. of 614 patients screened, 55 were eligible and 29 took part (5%, 95% CI 3 to 7% of those screened), with 15 patient participants cluster randomised to EPC and 14 to UC. Nurse records revealed that 8/15 participants received the maximum number of EPC sessions offered; and 4/15 received no sessions. Seven out of fifteen EPC participants were referred to another NHS psychological service compared to none in UC. We followed up 27/29 participants at 5 months and 17/21 at 8 months. The mean difference (EPC minus UC) in depressive symptoms (Beck Depression Inventory) at follow-up (adjusting for baseline score) was 1.7 (95% CI - 3.8 to 7.3; N = 26) at 5 months and 4.4 (95% CI - 1.4 to 10.2; N = 17) at 8 months. DISCUSSION: While valued by patients and nurses, organisational and workload constraints are significant barriers to EPC implementation. There remains a need to develop and test new models of psychological care within cardiac rehabilitation. Our study offers important data to inform the design of future trials of similar interventions. TRIAL REGISTRATION: ISRCTN34701576. Registered on 29 May 2014. Funding details: UK NIHR HTA Programme (project 12/189/09).

BACKGROUND: Around 19% of people screened by UK cardiac rehabilitation programmes report having moderate or severe symptoms of depression. These individuals are at an increased risk of cardiac mortality and morbidity, reduced quality of life and increased use of health resources compared with their non-depressed counterparts. Maximising psychological health is a goal of cardiac rehabilitation, but psychological care is patchy. OBJECTIVE(S): to examine the feasibility and acceptability of embedding enhanced psychological care (EPC) within cardiac rehabilitation, we tested the feasibility of developing/implementing EPC and documented the key uncertainties associated with undertaking a definitive evaluation. DESIGN: a two-stage multimethods study; a feasibility study and a qualitative evaluation, followed by an external pilot cluster randomised controlled trial (RCT) with a nested qualitative study. SETTING: UK comprehensive cardiac rehabilitation teams. PARTICIPANTS: Adults eligible for cardiac rehabilitation following an acute coronary syndrome with new-onset depressive symptoms on initial nurse assessment. Patients who had received treatment for depression in the preceding 6 months were excluded. INTERVENTIONS: the EPC intervention comprised nurse-led mental health-care co-ordination and behavioural activation within cardiac rehabilitation. The comparator was usual cardiac rehabilitation care. MAIN OUTCOME MEASURES: Measures at baseline, and at the 5- (feasibility and pilot) and 8-month follow-ups (pilot only). Process measures related to cardiac team and patient recruitment, and participant retention. Outcomes included depressive symptoms, cardiac mortality and morbidity, anxiety, health-related quality of life and service resource use. Interviews explored participant and nurses' views and experiences. RESULTS: Between September 2014 and May 2015, five nurses from four teams recruited participants into the feasibility study. of the 203 patients screened, 30 were eligible and nine took part (the target was 20 participants). At interview, participants and nurses gave valuable insights into the EPC intervention design and delivery. Although acceptable, the EPC delivery was challenging for nurses (e.g. the ability to allocate sufficient time within existing workloads) and the intervention was modified accordingly. Between December 2014 and February 2015, 8 out of 20 teams approached agreed to participate in the pilot RCT [five were randomised to the EPC arm and three were randomised to the usual-care (UC) arm]. of the 614 patients screened, 55 were eligible and 29 took part (the target was 43 participants). At baseline, the trial arms were well matched for sex and ethnicity, although the EPC arm participants were younger, from more deprived areas and had higher depression scores than the UC participants. A total of 27 out of 29 participants were followed up at 5 months. Interviews with 18 participants (12 in the EPC arm and six in the UC arm) and seven nurses who delivered EPC identified that both groups acknowledged the importance of receiving psychological support embedded within routine cardiac rehabilitation. For those experiencing/delivering EPC, the intervention was broadly acceptable, albeit challenging to deliver within existing care. LIMITATIONS: Both the feasibility and the pilot studies encountered significant challenges in recruiting patients, which limited the power of the pilot study analyses. CONCLUSIONS: Cardiac rehabilitation nurses can be trained to deliver EPC. Although valued by both patients and nurses, organisational and workload constraints were significant barriers to implementation in participating teams, suggesting that future research may require a modified approach to intervention delivery within current service arrangements. We obtained important data informing definitive research regarding participant recruitment and retention, and optimal methods of data collection. FUTURE RESEARCH: Consideration should be given to the delivery of EPC by dedicated mental health practitioners, working closely with cardiac rehabilitation services. TRIAL REGISTRATION: Current Controlled Trials ISRCTN34701576. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 22, No. 30. See the NIHR Journals Library website for further project information.

Patient evaluations of physician communication are widely used, but we know little about how these relate to professionally agreed norms of communication quality. We report an investigation into the association between patient assessments of communication quality and an observer-rated measure of communication competence. Consent was obtained to video record consultations with Family Practitioners in England, following which patients rated the physician's communication skills. A sample of consultation videos was subsequently evaluated by trained clinical raters using an instrument derived from the Calgary-Cambridge guide to the medical interview. Consultations scored highly for communication by clinical raters were also scored highly by patients. However, when clinical raters judged communication to be of lower quality, patient scores ranged from "poor" to "very good." Some patients may be inhibited from rating poor communication negatively. Patient evaluations can be useful for measuring relative performance of physicians' communication skills, but absolute scores should be interpreted with caution.

PURPOSE: to examine how family physicians', patients', and trained clinical raters' assessments of physician-patient communication compare by analysis of individual appointments. METHODS: Analysis of survey data from patients attending face-to-face appointments with 45 family physicians at 13 practices in England. Immediately post-appointment, patients and physicians independently completed a questionnaire including 7 items assessing communication quality. A sample of videotaped appointments was assessed by trained clinical raters, using the same 7 communication items. Patient, physician, and rater communication scores were compared using correlation coefficients. RESULTS: Included were 503 physician-patient pairs; of those, 55 appointments were also evaluated by trained clinical raters. Physicians scored themselves, on average, lower than patients (mean physician score 74.5; mean patient score 94.4); 63.4% (319) of patient-reported scores were the maximum of 100. The mean of rater scores from 55 appointments was 57.3. There was a near-zero correlation coefficient between physician-reported and patient-reported communication scores (0.009, P =. 854), and between physician-reported and trained rater-reported communication scores (-0.006, P =. 69). There was a moderate and statistically significant association, however, between patient and trained-rater scores (0.35, P =. 042). CONCLUSIONS: the lack of correlation between physician scores and those of others indicates that physicians' perceptions of good communication during their appointments may differ from those of external peer raters and patients. Physicians may not be aware of how patients experience their communication practices; peer assessment of communication skills is an important approach in identifying areas for improvement.

Objective: to examine concordance between responses to patient experience survey items evaluating doctors' interpersonal skills, and subsequent patient interview accounts of their experiences of care. Design: Mixed methods study integrating data from patient questionnaires completed immediately after a video-recorded face-to-face consultation with a general practitioner (GP) and subsequent interviews with the same patients which included playback of the recording. Setting: 12 general practices in rural, urban and inner city locations in six areas in England. Participants: 50 patients (66% female, aged 19-96 years) consulting face-to-face with 32 participating GPs. Main outcome measures: Positive responses to interpersonal skills items in a postconsultation questionnaire ('good' and 'very good') were compared with experiences reported during subsequent video elicitation interview (categorised as positive, negative or neutral by independent clinical raters) when reviewing that aspect of care. Results: We extracted 230 textual statements from 50 interview transcripts which related to the evaluation of GPs' interpersonal skills. Raters classified 70.9% (n=163) of these statements as positive, 19.6% (n=45) neutral and 9.6% (n=22) negative. Comments made by individual patients during interviews did not always express the same sentiment as their responses to the questionnaire. Where questionnaire responses indicated that interpersonal skills were 'very good', 84.6% of interview statements concerning that item were classified as positive. However, where patients rated interpersonal skills as 'good', only 41.9% of interview statements were classified as positive, and 18.9% as negative. Conclusions: Positive responses on patient experience questionnaires can mask important negative experiences which patients describe in subsequent interviews. The interpretation of absolute patient experience scores in feedback and public reporting should be done with caution, and clinicians should not be complacent following receipt of 'good' feedback. Relative scores are more easily interpretable when used to compare the performance of providers.

BACKGROUND: There is growing interest in real-time feedback (RTF), which involves collecting and summarizing information about patient experience at the point of care with the aim of informing service improvement. OBJECTIVE: to investigate the feasibility and acceptability of RTF in UK general practice. DESIGN: Exploratory randomized trial. SETTING/PARTICIPANTS: Ten general practices in south-west England and Cambridgeshire. All patients attending surgeries were eligible to provide RTF. INTERVENTION: Touch screens were installed in waiting areas for 12 weeks with practice staff responsible for encouraging patients to provide RTF. All practices received fortnightly feedback summaries. Four teams attended a facilitated reflection session. OUTCOMES: RTF 'response rates' among consulting patients were estimated, and the representativeness of touch screen users were assessed. The frequency of staff-patient interactions about RTF (direct observation) and patient views of RTF (exit survey) were summarized. Associated costs were collated. RESULTS: About 2.5% consulting patients provided RTF (range 0.7-8.0% across practices), representing a mean of 194 responses per practice. Patients aged above 65 were under-represented among touch screen users. Receptionists rarely encouraged RTF but, when this did occur, 60% patients participated. Patients were largely positive about RTF but identified some barriers. Costs per practice for the twelve-week period ranged from £1125 (unfacilitated team-level feedback) to £1887 (facilitated team ± practitioner-level feedback). The main cost was the provision of touch screens. CONCLUSIONS: Response rates for RTF were lower than those of other survey modes, although the numbers of patients providing feedback to each practice were comparable to those achieved in the English national GP patient survey. More patients might engage with RTF if the opportunity were consistently highlighted to them.

BACKGROUND: Around 17% of people eligible for UK cardiac rehabilitation programmes following an acute coronary syndrome report moderate or severe depressive symptoms. While maximising psychological health is a core goal of cardiac rehabilitation, psychological care can be fragmented and patchy. This study tests the feasibility and acceptability of embedding enhanced psychological care, composed of two management strategies of proven effectiveness in other settings (nurse-led mental health care coordination and behavioural activation), within the cardiac rehabilitation care pathway. METHODS/DESIGN: This study tests the uncertainties associated with a large-scale evaluation by conducting an external pilot trial with a nested qualitative study. We aim to recruit and randomise eight comprehensive cardiac rehabilitation teams (clusters) to intervention (embedding enhanced psychological care into routine cardiac rehabilitation programmes) or control (routine cardiac rehabilitation programmes alone) arms. Up to 64 patients (eight per team) identified with depressive symptoms upon initial assessment by the cardiac rehabilitation team will be recruited, and study measures will be administered at baseline (before starting rehabilitation) and at 5 months and 8 months post baseline. Outcomes include depressive symptoms, cardiac mortality and morbidity, anxiety, health-related quality of life and service resource use. Trial data on cardiac team and patient recruitment, and the retention and flow of patients through treatment will be used to assess intervention feasibility and acceptability. Qualitative interviews will be undertaken to explore trial participants' and cardiac rehabilitation nurses' views and experiences of the trial methods and intervention, and to identify reasons why patients declined to take part in the trial. Outcome data will inform a sample size calculation for a definitive trial. DISCUSSION: the pilot trial and qualitative study will inform the design of a fully powered cluster randomised controlled trial to evaluate the effectiveness and cost-effectiveness of the provision of enhanced psychological care within cardiac rehabilitation programmes. TRIAL REGISTRATION: ISRCTN34701576 (Registered 29 May 2014).

BACKGROUND: in recent years, hospitals have made use of new technologies, such as real-time feedback, to collect patient experience information. This approach is currently rarely used in primary care settings, but may provide practices with a useful tool that enables them to take prompt, focused action to improve their services. AIM: to identify the factors inhibiting and enabling the implementation of real-time feedback in general practices. DESIGN AND SETTING: Qualitative study embedded within an exploratory trial (July 2014 to February 2015) of a real-time feedback intervention targeting patient experience in general practices in south-west England and Cambridgeshire. METHOD: Semi-structured interviews (n = 22) and focus groups (n = 4, total of 28 attendees) with practice staff were audiorecorded, transcribed, and analysed thematically, using a framework based on constructs from normalisation process theory. RESULTS: Staff engagement with real-time feedback varied considerably, and staff made sense of real-time feedback by comparing it with more familiar feedback modalities. Effective within-team communication was associated with positive attitudes towards real-time feedback. Timing of requests for feedback was important in relation to patient engagement. Real-time feedback may offer potential as a means of informing practice development, perhaps as a component of a wider programme of capturing and responding to patients' comments. CONCLUSION: Successful implementation of real-time feedback requires effective communication across the practice team to engender thorough engagement. Feedback processes should be carefully introduced to fit with existing patient and practice routines. Future studies should consider making real-time feedback content relevant to specific practice needs, and support participation by all patient groups.

Purpose: the validity and reliability of various items on the GP Patient Survey (GPPS) survey have been reported, however stability of patient responses over time has not been tested. The purpose of this study was to determine the test–retest reliability of the core items from the GPPS. Methods: Patients who had recently consulted participating GPs in five general practices across the South West England were sent a postal questionnaire comprising of 54 items concerning their experience of their consultation and the care they received from the GP practice. Patients returning the questionnaire within 3 weeks of mail-out were sent a second identical (retest) questionnaire. Stability of responses was assessed by raw agreement rates and Cohen’s kappa (for categorical response items) and intraclass correlation coefficients and means (for ordinal response items). Results: 348 of 597 Patients returned a retest questionnaire (58.3 % response rate). In comparison to the test phase, patients responding to the retest phase were older and more likely to have white British ethnicity. Raw agreement rates for the 33 categorical items ranged from 66 to 100 % (mean 88 %) while the kappa coefficients ranged from 0.00 to 1.00 (mean 0.53). Intraclass correlation coefficients for the 21 ordinal items averaged 0.67 (range 0.44–0.77). Conclusions: Formal testing of items from the national GP patient survey examining patient experience in primary care highlighted their acceptable temporal stability several weeks following a GP consultation.

BACKGROUND: Despite widespread adoption of patient feedback surveys in international health-care systems, including the English NHS, evidence of a demonstrable impact of surveys on service improvement is sparse. OBJECTIVE: to explore the views of primary care practice staff regarding the utility of patient experience surveys. DESIGN: Qualitative focus groups. SETTING AND PARTICIPANTS: Staff from 14 English general practices. RESULTS: Whilst participants engaged with feedback from patient experience surveys, they routinely questioned its validity and reliability. Participants identified surveys as having a number of useful functions: for patients, as a potentially therapeutic way of getting their voice heard; for practice staff, as a way of identifying areas of improvement; and for GPs, as a source of evidence for professional development and appraisal. Areas of potential change stimulated by survey feedback included redesigning front-line services, managing patient expectations and managing the performance of GPs. Despite this, practice staff struggled to identify and action changes based on survey feedback alone. DISCUSSION: Whilst surveys may be used to endorse existing high-quality service delivery, their use in informing changes in service delivery is more challenging for practice staff. Drawing on the Utility Index framework, we identified concerns relating to reliability and validity, cost and feasibility acceptability and educational impact, which combine to limit the utility of patient survey feedback. CONCLUSIONS: Feedback from patient experience surveys has great potential. However, without a specific and renewed focus on how to translate feedback into action, this potential will remain incompletely realized.

BACKGROUND: Open-ended questions eliciting free-text comments have been widely adopted in surveys of patient experience. Analysis of free text comments can provide deeper or new insight, identify areas for action, and initiate further investigation. Also, they may be a promising way to progress from documentation of patient experience to achieving quality improvement. The usual methods of analyzing free-text comments are known to be time and resource intensive. To efficiently deal with a large amount of free-text, new methods of rapidly summarizing and characterizing the text are being explored. OBJECTIVE: the aim of this study was to investigate the feasibility of using freely available Web-based text processing tools (text clouds, distinctive word extraction, key words in context) for extracting useful information from large amounts of free-text commentary about patient experience, as an alternative to more resource intensive analytic methods. METHODS: We collected free-text responses to a broad, open-ended question on patients' experience of primary care in a cross-sectional postal survey of patients recently consulting doctors in 25 English general practices. We encoded the responses to text files which were then uploaded to three Web-based textual processing tools. The tools we used were two text cloud creators: TagCrowd for unigrams, and Many Eyes for bigrams; and Voyant Tools, a Web-based reading tool that can extract distinctive words and perform Keyword in Context (KWIC) analysis. The association of patients' experience scores with the occurrence of certain words was tested with logistic regression analysis. KWIC analysis was also performed to gain insight into the use of a significant word. RESULTS: in total, 3426 free-text responses were received from 7721 patients (comment rate: 44.4%). The five most frequent words in the patients' comments were "doctor", "appointment", "surgery", "practice", and "time". The three most frequent two-word combinations were "reception staff", "excellent service", and "two weeks". The regression analysis showed that the occurrence of the word "excellent" in the comments was significantly associated with a better patient experience (OR=1.96, 95%CI=1.63-2.34), while "rude" was significantly associated with a worse experience (OR=0.53, 95%CI=0.46-0.60). The KWIC results revealed that 49 of the 78 (63%) occurrences of the word "rude" in the comments were related to receptionists and 17(22%) were related to doctors. CONCLUSIONS: Web-based text processing tools can extract useful information from free-text comments and the output may serve as a springboard for further investigation. Text clouds, distinctive words extraction and KWIC analysis show promise in quick evaluation of unstructured patient feedback. The results are easily understandable, but may require further probing such as KWIC analysis to establish the context. Future research should explore whether more sophisticated methods of textual analysis (eg, sentiment analysis, natural language processing) could add additional levels of understanding.

OBJECTIVES: to determine the extent to which practice level scores mask variation in individual performance between doctors within a practice. DESIGN: Analysis of postal survey of patients' experience of face-to-face consultations with individual general practitioners in a stratified quota sample of primary care practices. SETTING: Twenty five English general practices, selected to include a range of practice scores on doctor-patient communication items in the English national GP Patient Survey. PARTICIPANTS: 7721 of 15,172 patients (response rate 50.9%) who consulted with 105 general practitioners in 25 practices between October 2011 and June 2013. MAIN OUTCOME MEASURE: Score on doctor-patient communication items from post-consultation surveys of patients for each participating general practitioner. The amount of variance in each of six outcomes that was attributable to the practices, to the doctors, and to the patients and other residual sources of variation was calculated using hierarchical linear models. RESULTS: After control for differences in patients' age, sex, ethnicity, and health status, the proportion of variance in communication scores that was due to differences between doctors (6.4%) was considerably more than that due to practices (1.8%). The findings also suggest that higher performing practices usually contain only higher performing doctors. However, lower performing practices may contain doctors with a wide range of communication scores. CONCLUSIONS: Aggregating patients' ratings of doctors' communication skills at practice level can mask considerable variation in the performance of individual doctors, particularly in lower performing practices. Practice level surveys may be better used to "screen" for concerns about performance that require an individual level survey. Higher scoring practices are unlikely to include lower scoring doctors. However, lower scoring practices require further investigation at the level of the individual doctor to distinguish higher and lower scoring general practitioners.

Background Simulated patient, or so-called 'mystery-shopper', studies are a controversial, but potentially useful, approach to take when conducting health services research. Aim to investigate the construct validity of survey questions relating to access to primary care included in the English GP Patient Survey. Design and setting Observational study in 41 general practices in rural, urban, and inner-city settings in the UK. Method Between May 2010 and March 2011, researchers telephoned practices at monthly intervals, simulating patients requesting routine, but prompt, appointments. Seven measures of access and appointment availability, measured from the mystery-shopper contacts, were related to seven measures of practice performance from the GP Patient Survey. Results Practices with lower access scores in the GP Patient Survey had poorer access and appointment availability for five out of seven items measured directly, when compared with practices that had higher scores. Scores on items from the national survey that related to appointment availability were significantly associated with direct measures of appointment availability. Patient-satisfaction levels and the likelihood that patients would recommend their practice were related to the availability of appointments. Patients' reports of ease of telephone access in the national survey were unrelated to three out of four measures of practice call handling, but were related to the time taken to resolve an appointment request, suggesting responders' possible confusion in answering this question. Conclusion Items relating to the accessibility of care in a the English GP patient survey have construct validity. Patients' satisfaction with their practice is not related to practice call handling, but is related to appointment availability. © British Journal of General Practice.

BACKGROUND: Simulated patient, or so-called 'mystery-shopper', studies are a controversial, but potentially useful, approach to take when conducting health services research.AIM: to investigate the construct validity of survey questions relating to access to primary care included in the English GP Patient Survey.DESIGN AND SETTING: Observational study in 41 general practices in rural, urban, and inner-city settings in the UK.METHOD: Between May 2010 and March 2011, researchers telephoned practices at monthly intervals, simulating patients requesting routine, but prompt, appointments. Seven measures of access and appointment availability, measured from the mystery-shopper contacts, were related to seven measures of practice performance from the GP Patient Survey.RESULTS: Practices with lower access scores in the GP Patient Survey had poorer access and appointment availability for five out of seven items measured directly, when compared with practices that had higher scores. Scores on items from the national survey that related to appointment availability were significantly associated with direct measures of appointment availability. Patient-satisfaction levels and the likelihood that patients would recommend their practice were related to the availability of appointments. Patients' reports of ease of telephone access in the national survey were unrelated to three out of four measures of practice call handling, but were related to the time taken to resolve an appointment request, suggesting responders' possible confusion in answering this question.CONCLUSION: Items relating to the accessibility of care in a the English GP patient survey have construct validity. Patients' satisfaction with their practice is not related to practice call handling, but is related to appointment availability.

Background the UK government has encouraged NHS services to obtain patient feedback to support the further development of patient-centred care. In 2009, the English GP Patient Survey included a sample of 5.5 million, but little is known about its potential utility in informing developments aimed at improving the quality of patients' experiences of primary care. Aim to investigate primary care providers' response to feedback on patient experience from a national survey. Design and setting Qualitative interview study in 10 general practices from four primary care trusts in England. Method Semi-structured interviews were conducted with GPs, practice nurses, and practice managers (n = 37). Transcripts were analysed thematically. Results Although some participants reported making changes to their practice in response to the survey data, many expressed doubts about the credibility of the results. Key issues included: concerns about practical aspects of the survey, such as the response rate and representativeness of the sample; the view that it gave insufficient detail to facilitate change and failed to address some salient issues; and unease about the influence of political influences underpinning its introduction and use. Conclusion Although, in general, primary care professionals have positive attitudes towards patient feedback, this study suggests a mismatch between the conventional demonstration of the objectivity of a questionnaire survey and the attitudes and experiences of those receiving the data. This is likely to prevent doctors from engaging constructively with the survey. These concerns may well militate against the potential of the survey to act as a simple means of capturing, and effectively using, feedback from patients. © British Journal of General Practice.

This literature review focuses on what matters to young adults when they access primary care services in the United Kingdom. Patients' access to and experience of primary care services differs across age groups. Existing research has largely focused on the needs and experiences of children, adolescents, and adults. There is some evidence to suggest the views of young adults (aged 18-25 years) that may differ from the views of other age groups, and research has not previously reported specifically on the views of this group of the population. The literature was reviewed to identify the views and priorities of young UK adults regarding primary healthcare provision, and furthermore, to identify those related topics that would benefit from further research. Relevant academic publications and grey literature published from 2000 onwards was reviewed and synthesised. We identified and reported emerging themes that were of importance to young adults in respect of the UK primary care provision. A total of 19 papers met our inclusion criteria. Young adults access primary care services less frequently than other age groups; this may be because of their experience of primary care throughout childhood and adolescence. Five aspects of primary care provision emerged as being of importance to young adults--the accessibility and availability of services, the confidentiality of health-related information, issues relating to communication with healthcare professionals, continuity of care, and behaviours and attitudes expressed towards young adults by healthcare professionals. There is a lack of focus of current research on the expectations, needs, and primary healthcare experiences of young adults. Young adults may hold views that are distinct from other age groups. Further research is needed to better understand the needs of a young adult population as their needs may impact the future use of services.

BACKGROUND: Young adulthood is an important transitional period during which there is a higher risk of individuals engaging in behaviours which could have a lasting impact on their health. Research has shown that young adults are the lowest responders to surveys about healthcare experiences and are also the least satisfied with the care they receive. However, the factors contributing to this reduced satisfaction are not clear. The focus of our research was to explore the needs and experiences of young adults around healthcare services with an aim of finding out possible reasons for lower satisfaction. METHODS: Twenty young adults were interviewed at GP surgeries and at a local young adult advice agency, exploring their experiences and use of primary care services. Interviews were analysed using thematic analysis. RESULTS: the use of primary care services varied amongst the young adult interviewees. Many interviewees reported positive experiences; those who did not linked their negative experiences to difficulties in negotiating their care with the health care system, and reported issues with trust, and communication difficulties. Most of the interviewees were unaware of the use of patient surveys to inform healthcare planning and delivery and were not inclined to take part, mainly because of the length of surveys and lack of interest in the topic area. CONCLUSIONS: in order to effectively address the health needs of young adults, young adults need to be educated about their rights as patients, and how to most efficiently use primary care services. GPs should be alert to effective means of approaching and handling the healthcare needs of young adults. A flexible, varied approach is needed to gathering high quality data from this group in order to provide services with information on the changes necessary for making primary care services more accessible for young adults.

Background
Young adulthood is an important transitional period during which there is a higher risk of individuals engaging in behaviours which could have a lasting impact on their health. Research has shown that young adults are the lowest responders to surveys about healthcare experiences and are also the least satisfied with the care they receive. However, the factors contributing to this reduced satisfaction are not clear. The focus of our research was to explore the needs and experiences of young adults around healthcare services with an aim of finding out possible reasons for lower satisfaction.

Methods
Twenty young adults were interviewed at GP surgeries and at a local young adult advice agency, exploring their experiences and use of primary care services. Interviews were analysed using thematic analysis.

Results
The use of primary care services varied amongst the young adult interviewees. Many interviewees reported positive experiences; those who did not linked their negative experiences to difficulties in negotiating their care with the health care system, and reported issues with trust, and communication difficulties. Most of the interviewees were unaware of the use of patient surveys to inform healthcare planning and delivery and were not inclined to take part, mainly because of the length of surveys and lack of interest in the topic area.

Conclusions
In order to effectively address the health needs of young adults, young adults need to be educated about their rights as patients, and how to most efficiently use primary care services. GPs should be alert to effective means of approaching and handling the healthcare needs of young adults. A flexible, varied approach is needed to gathering high quality data from this group in order to provide services with information on the changes necessary for making primary care services more accessible for young adults.

Antoinette Davey, Mary Carter and John L. Campbell
Primary Care Research Group, University of Exeter Medical School, St Lukes Campus,
Exeter EX1 2LU, UK
This literature review focuses on what matters to young adults when they access
primary care services in the United Kingdom.
Patients’ access to and experience of primary care services differs across
age groups. Existing research has largely focused on the needs and experiences of
children, adolescents, and adults. There is some evidence to suggest the views
of young adults (aged 18–25 years) that may differ from the views of other age groups,
and research has not previously reported specifically on the views of this group of
the population.
The literature was reviewed to identify the views and priorities of young UK adults
regarding primary healthcare provision, and furthermore, to identify those related topics
that would benefit from further research. Relevant academic publications and grey
literature published from 2000 onwards was reviewed and synthesised. We identified
and reported emerging themes that were of importance to young adults in respect of the
UK primary care provision. A total of 19 papers met our inclusion criteria.
Young adults access primary care services less frequently than other age groups;
this may be because of their experience of primary care throughout childhood and
adolescence. Five aspects of primary care provision emerged as being of importance to
young adults – the accessibility and availability of services, the confidentiality of healthrelated
information, issues relating to communication with healthcare professionals,
continuity of care, and behaviours and attitudes expressed towards young adults by
healthcare professionals.
There is a lack of focus of current research on the expectations, needs, and primary
healthcare experiences of young adults. Young adults may hold views that are distinct
from other age groups. Further research is needed to better understand the needs of a
young adult population as their needs may impact the future use of services.