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Aim: To develop and explore the validity of a Patient Reported Experience Measure (PREM) for adult inpatient diabetes care. Method: 27 in‐depth interviews were conducted to inform the development of the 42‐item PREM which was cognitively tested with 10 people. A refined 38‐item PREM was piloted with 228 respondents completing a paper (n = 198) or online (n = 30) version. The performance of the PREM was evaluated by exploring (i) uptake/number of responses and (ii) survey validity by investigating whether the PREM data were of adequate quality and delivered useful information. Results: The PREM had low drop‐out or missing data rates suggesting it was appropriately constructed. Analysis of item frequencies and variances, and problem score calculations concluded that questions provided sufficient score differentiation. Conclusions: This new PREM allows for experiences of inpatient diabetes care to be measured, understood and reported on to help identify priority areas for improving care quality. [ABSTRACT FROM AUTHOR]

Aims: Explore the experience of living with fatigue in persons with advanced heart failure. Design: Single-setting, qualitative interview study. Methods: In-depth interviews were conducted from November 2012 – June 2013. Participant responses to open-ended questions were analysed using thematic analysis. Inclusion criteria: 18 years and older, diagnosis of New York Heart Association class III-IV heart failure with reduced ejection fraction and able to participate in interviews in their own language. Exclusion criteria was cognitive deficit Twenty-three participated in the study. Results: Participants (age 72.5 ± 9.5 years, 10/23 female), identified experiencing fatigue daily with 14/23 reporting it as their worst symptom or combined worst symptom with breathlessness. Three key themes were identified: fatigue as a physical barrier, psychological response to fatigue, and living with fatigue as a part of daily life. Conclusion: As heart failure progresses fatigue influences patients' daily life and may negatively affect self-care abilities however patients strive to adapt to these limitations. [ABSTRACT FROM AUTHOR]

Aims and objectives To explore how patients with Chronic Heart Failure describe their experiences of breathlessness, the pattern of their breathlessness, how daily life is affected and how they adjust to and manage these symptoms. Background Chronic Heart Failure is a highly prevalent syndrome often with poor outcomes and in a patient group who are predominately elderly. Breathlessness is the main symptom experienced by patients and often relates to decompensation and hospitalisation, yet subtle changes described by patients are often not discussed with health care professionals. Design A descriptive qualitative design. Methods Twenty-five participants with heart failure with reduced ejection fraction ( HF- rEF) from a tertiary referral centre in England were recruited. Each participant took part in a semi-structured interview exploring the effect of breathlessness had on their lives. Data was analysed through Braun and Clarke's framework for thematic analysis. Results All participants reported experiencing breathlessness daily. Four sub-themes were identified in their accounts: nature of breathlessness, emotional impact of breathlessness, impact of breathlessness on daily life and managing breathlessness. Conclusion Participants were able to give vivid descriptions of breathlessness and the way it affected their lives. Relevance to clinical practice Health care professionals need to take account of each patient's personal assessment of their own breathlessness and how this is having an effect on their life and ability to undertake activities of daily living. Self-care management strategies need to be developed so that subtle changes can be assessed by the patient and reviewed by the healthcare professional to avoid hospitalisation and increased mortality risks. [ABSTRACT FROM AUTHOR]

Objectives: To investigate patients' experiences of health and social care services in long-term neurological conditions in England. Method: Cross-sectional survey of 5209 patient members of the Motor Neurone Disease Association (MND, n 5 890), Multiple Sclerosis Society (MS, n = 2345) or Parkinson's UK (PD, n = 1974). A questionnaire on patient experiences of health and social care was completed by 2563 (49%) (505 MND, 1157 MS and 901 PD). Results: A mixed picture of experiences of health and social care in MND, MS or PD was found with few problems reported for some aspects of services such as obtaining information about medication (n 5 117, 6.1%). In contrast, problems with planning and integration of care were reported frequently, with 78.0% of patients not having a care plan and 61.9% reporting that services do not collaborate well in planning care. Other problems included delays with diagnosis, information about medication side effects, and management of conditions whilst in hospital. Significant differences between the three conditions were found for most aspects of care, with MND patients generally reporting fewer problems. The findings highlight which areas of health and social care need to be improved and monitored. While a larger sample size was obtained than in other studies, possible limitations include the sampling frame and the 49% response rate. Conclusion: Planning and integration of care are key areas that require improvement. [ABSTRACT FROM AUTHOR]

The article discusses the challenge of using patients' views of the humanity and effectiveness of their care to evaluate interventions and assess the quality of services. It outlines some of the developments and initiatives on quality improvement in England. Areas that need to be considered are discussed including methodological challenges, practical considerations and interpretation. According to the article, considering the views of patients in a systematic and thoughtful manner is a first step to engage them into clinical practice.

The author discusses the importance of monitoring and measuring patient experience on the healthcare industry in England as a fundamental factor to analyze healthcare quality. Topics discussed include several studies about methods to measure and assess patient experience, the national policy discourse in the country which promotes patient experience to drive improvements in healthcare quality, and programmes from National Health Service (NHS) that measures patient experience.

Surveys the population norms for the short form (SF 36) health survey questionnaire from a community in England. Consistency of different dimensions of the questionnaire; Significance of SF 36 in medical research; Validity and use of normative data.

Objective: The aim of this study was to validate a new generic patient-reported outcome measure, the Long-Term Conditions Questionnaire (LTCQ), among a diverse sample of health and social care users in England., Design: Cross-sectional validation survey. Data were collected through postal surveys (February 2016-January 2017). The sample included a healthcare cohort of patients recruited through primary care practices, and a social care cohort recruited through local government bodies that provide social care services., Participants: 1211 participants (24% confirmed social care recipients) took part in the study. Healthcare participants were recruited on the basis of having one of 11 specified long-term conditions (LTCs), and social care participants were recruited on the basis of receiving social care support for at least one LTC. The sample exhibited high multimorbidity, with 93% reporting two or more LTCs and 43% reporting a mental health condition., Outcome Measures: The LTCQ's construct validity was tested with reference to the EQ-5D (5-level version), the Self-Efficacy for Managing Chronic Disease scale, an Activities of Daily Living scale and the Bayliss burden of morbidity scale., Results: Low levels of missing data for each item indicate acceptability of the LTCQ across the sample. The LTCQ exhibits high internal consistency (Cronbach's α=0.95) across the scale's 20 items and excellent test-retest reliability (intraclass correlation coefficient=0.94, 95% CI 0.93 to 0.95). Associations between the LTCQ and all reference measures were moderate to strong and in the expected directions, indicating convergent construct validity., Conclusions: This study provides evidence for the reliability and validity of the LTCQ, which has potential for use in both health and social care settings. The LTCQ could meet a need for holistic outcome measurement that goes beyond symptoms and physical function, complementing existing measures to capture fully what it means to live well with LTCs., Competing Interests: Competing interests: Some authors had financial (salary) support from the two funding bodies: CMP, LK and EG from the NIHR via programme funding for CLAHRC Oxford, and LB, LG, DF, KJ and MP from the Department of Health England via programme funding for QORU policy research unit; the authors declare no financial relationships with any other organisations that might have an interest in the submitted work in the previous 3 years; the authors declare no other relationships or activities that could appear to have influenced the submitted work., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Objectives: To explore the views of a range of stakeholders regarding whether patient-reported outcome measures (PROMs) can be developed to measure key attributes of long-term conditions (LTCs) care in England, and the potential value of a single generic measure., Design: Qualitative semistructured interview study, analysed using a framework approach., Participants and Setting: Interviews with 31 stakeholders from primary care, secondary care, social care, policy and patient-focused voluntary organisations in England., Results: There was broad support for a single PROM that could be used to measure outcomes for patients with any LTCs in any health or social care setting. Interviewees identified three desired uses for a PROM: to improve the quality of individual care; to increase people's engagement in their own care; and to monitor the performance of services. Interviewees felt that a PROM for LTCs should incorporate a mixture of traditional and non-traditional domains, such as functioning, empowerment and social participation, and be codesigned with patients and professional end-users. Stakeholders emphasised the need for a PROM to be feasible for practical implementation at the individual clinical level as a first priority. A number of concerns and potential problems were identified in relation to the application and interpretation of an LTC PROM., Conclusions: This study has demonstrated support for a single self-report outcome measure that reflects the priorities of people with LTCs, if such a measure can be shown to be meaningful and useful at the individual level. People with LTCs and professional end-users in health and social care should be involved in the development and evaluation of such a measure., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)

Background: No validated patient-reported outcome measure (PROM) exists specifically to assess quality of life in mild cognitive impairment (MCI); we report a study conducted to develop such a measure., Methods: Semi-structured in-depth interviews were carried out with 23 people with MCI in order to determine items for a draft questionnaire. These interviews were audio-recorded, transcribed, and content analyzed. The draft questionnaire was refined following feedback from a focus group. 280 questionnaires were posted to subjects recruited from memory clinics and research databases, the response rate was 56% i.e. 146 questionnaires were included in the final analysis. The completed questionnaires were analyzed using factor analytic techniques to produce the final measure; construct validity was assessed by correlation with a generic patient-reported outcome measure, the SF-12v2., Results: Factor analysis produced a 13-item measure tapping two domains of patient-reported quality of life ("Emotional Effects" and "Practical Concerns"). Internal consistency reliability was high for both domains (α was 0.91 and 0.85 respectively). Both dimensions were highly and significantly correlated with the Mental Component Summary score of the SF-12v2 ("emotional effects" ρ = -0.43, p < 0.001 and "practical concerns" ρ = -0.56, p < 0.001)., Conclusions: The Mild Cognitive Impairment Questionnaire (MCQ) is a 13-item measure developed specifically to measure patient-reported outcomes in people with MCI. It was created on the basis of patient report and has been shown to have good psychometric properties. It is likely to prove valuable in the evaluation of treatment regimes in this patient group.

Objectives: To evaluate the feasibility of using patient-reported outcome measures (PROMs) for long-term conditions (LTCs) in primary care., Design: A cohort postal survey conducted from September 2010 to April 2012., Setting: Primary care practices (n=33) in London and the North-West of England., Participants: 4484 patients with a diagnosis of asthma, chronic obstructive pulmonary disease, diabetes, epilepsy, heart failure or stroke were sent a survey at baseline., Main Outcome: The main outcome was to evaluate the feasibility of and the recruitment strategies for collecting PROMs data in LTCs by assessing the response rates for the baseline and follow-up surveys. Secondary outcomes were the evaluation of change scores of the EQ-5D index and visual analogue scale (VAS) between baseline and follow-up surveys., Results: The baseline survey achieved a response rate of 38.4% (n=1721/4485) and at follow-up 71.5% (n=1136/1589). Response rates varied by LTC. Little change was found in health-related quality of life for the total sample (-0.001 for the EQ-5D index score and 0.12 for the EQ-5D VAS) between patients responding to both the baseline and follow-up surveys., Conclusions: The response rate to the baseline survey was similar to that of other general practice surveys. Current UK policy aims to assess health service performance in LTCs by means of using PROMs. It thus would be desirable to improve response rates by making the invitation to self-reports of health-related quality of life more engaging for patients. Results on the EQ-5D score raise questions about optimal indicators for LTCs and appropriate timelines for assessment.

Background and Purpose: The Stroke Impact Scale (SIS) covers 8 dimensions and a composite disability score. This study evaluates the SIS in the UK context, and develops a single index and an 8-item short form., Methods: Patients with a diagnosis of stroke were recruited through general practices in London and the North-West of England. Patients completed the SIS and the EQ-5D., Results: Internal consistency of the SIS dimensions and the disability score ranged from α 0.86 to 0.95. Complete data were available on 73 questionnaires (48.34%). Factor analysis suggested the 8 domains could be aggregated into a single index. A short-form SIS (SF-SIS) index was created by summing 1 item per dimension. Selected items were those that most highly correlated with their respective domain score (ρ ranged from 0.77-0.94, P<0.001). The SF-SIS index scores were highly correlated with those gained from the parent form (ρ=0.98; P<0.001). The correlation of the SIS index and SF-SIS index with the EQ-5D was identical (ρ=0.83; P<0.001). The disability score, whether scored from the dimensions of the SIS, or relevant items on the SF-SIS, were highly correlated (ρ=0.97; P<0.001)., Conclusions: The SIS covers aspects of health, which are of importance to stroke patients, and the dimensions were found to have high levels of internal consistency in the UK context. The amount of incomplete data suggests that the length of the questionnaire may present a substantial patient burden. In comparison to the parent form the SF-SIS can accurately provide the disability score and overall index score with considerable brevity.

Objectives: To evaluate the sensitivity to change of the Endometriosis Health Profile-30 (EHP-30) questionnaire., Setting: The Women's Center, John Radcliffe Hospital, Oxford., Design: Postal survey to 66 women undergoing conservative surgery for the treatment of endometriosis-associated pain. The EHP-30 and the Short Form-36 (SF-36) were administered 2 weeks before the operation, and 4 months post-operatively. At T2 a transition question was included to evaluate changes in patients health status. To evaluate responsiveness effect sizes, standardised response means, the index of responsiveness and the minimally and clinically important differences were calculated., Results: Forty (66.6%) patients returned the questionnaires at time 1 and 2. Overall less responsive effect size scores were found for the SF-36 (0.1-0.5) compared to the EHP-30 (-0.1-1.1) for all patients who had undergone treatment. Minimally important differences and the index of responsiveness were overall higher for the EHP-30 (0.4-2.0) compared to the SF-36 (0.1-1.0). Change scores for four of the five scales were significantly correlated with women's responses to the transition question., Conclusions: Results suggest that the EHP-30 is sensitive to change. Its application in clinical trials should prove beneficial in assessing the impact of medical and surgical interventions upon quality of life for women with endometriosis.

Background: The purpose of this study was to compare the performance of the 15-item Picker Patient Experience questionnaire (PPE-15) when embedded in a short form instrument as compared with a longer form measure., Methods: A postal questionnaire survey of patients recently discharged from two hospital trusts was carried out. Patients were randomized to receive the PPE-15 in either a four-page or a 12-page survey instrument., Results: A total of 1445 questionnaires were mailed to patients in either four- or 12-page formats. A total of 949 (65.67 per cent) forms were returned. No difference in response rate was found between the two versions of the questionnaire. Item completion and psychometric properties of the PPE-15 were not found to differ significantly between the two arms of the trial., Conclusion: In this survey the length of questionnaire in which the PPE-15 was embedded had no impact in terms of response rate or data quality. Consequently, the results suggest that length of questionnaire, up to the 108 items included in the 12-page survey, is unlikely to adversely affect results on the PPE-15.

Objectives: All health care providers in England are required to conduct surveys of their patients' experience of health care. Data from such surveys contribute to the 'star rating' performance indicators. However, there are concerns that these subjective measures may be influenced more by characteristics of patients than by true variations in the quality of care. The purpose of this paper is threefold: to determine the relationship between demographic characteristics and an index measure of patients' reported experience; to explore the extent to which patients' experiences may be accounted for by the particular National Health Service (NHS) trust they attended; and to assess how meaningful a summary index is in terms of its ability to discriminate between providers., Methods: Data from patients in the National Survey of National Health Service Patients treated for coronary heart disease in 194 NHS trusts. Patients were sent questionnaires after discharge, with a covering letter and a prepaid stamped addressed envelope. Up to two reminders were sent to non-responders. Multi-level linear regression models were used to estimate the extent to which patients' experiences differed between trusts and the association of demographic variables with the summary index., Results: In total, 116,872 patients were sent questionnaires, but 3399 proved to be ineligible for the survey. Responses were gained from 84,310 (74.3% of eligible respondents). Age and sex were most strongly associated with reported patients' experiences. However, the actual impact of age and sex on patients' experience is small, accounting for less than 3% of the variance. The proportion of the variance that was accounted for by the hospital trust in which patients were treated was only 5%., Conclusions: Demographic characteristics do not appear to account for differences between hospital trusts in patients' experience of health care. However, there is considerable variation in patients' experience within each provider. This would suggest that summary indices of patients' experience should not be used to rank providers, although detailed information from patient surveys have a useful role in determining priorities for quality improvement within individual hospitals and for assessing changes over time.

This paper examines the sensitivity to change over time of the Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40). Individuals' health status change was assessed by means of the Rasch-based Reliable Change Index (RCI) for ALSAQ-40 questionnaires completed on two occasions, three months apart. In addition, at follow-up respondents indicated how much change they had experienced since baseline via dimension-specific self reported transition questions. 764 individuals returned questionnaires at baseline and follow-up. For all dimensions, of respondents defined by the RCI as worse, a majority rated themselves as worse. However, on two dimensions over 60% of the respondents who rated themselves as being worse were defined as unchanged by the RCI. As with effect size smaller RCI cut-off points might be needed for subjects with ALS. This study confirms that the ALSAQ-40 is a valid and responsive disease specific health related quality of life instrument for use in studies of patients with ALS or other motor neuron diseases.

Objective: To compare the distribution of the domains and summary scores of the SF-36 health survey by occupation-related social classes in England and Australia for employed males age 18-65 years., Method: Relative and absolute measures of inequality based on the concentration index were used to examine the distribution of indicators of reported health based on domains and summary scores of the SF-36 across occupation-related social classes in both countries., Results: The degree of inequality is most pronounced in the domains and summary scores of the SF-36 representing aspects of physical health. In regard to comparisons between these countries, there is no significant difference in the distribution of summary scores for physical health. Although there are differences in the summary scores for mental health, there is no evidence of significant inequality in Australia in this aspect of health., Conclusions: There is a similar pattern of occupation-related health inequality in the physical health dimensions of the SF-36 health survey for employed males age 18-65 years., Implications: Given the similarities in the distribution of measures of physical health in the two countries, it would be useful to assess recent English policy initiatives aimed at reducing health inequalities when developing interventions to tackle inequalities in Australia.