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Background: Hip and knee replacement are effective procedures for end-stage arthritis that has not responded to medical management. However, until now, there have been no validated, patient-reported tools to measure early recovery in this growing patient population. The process of development and psychometric evaluation of the Oxford Arthroplasty Early Recovery Score (OARS), a 14-item patient-reported outcome measure (PROM) measuring health status, and the Oxford Arthroplasty Early Change Score (OACS) a 14-item measure to assess change during the first 6 weeks following surgery is reported. Patients and methods: A five-phased, best practice, iterative approach was used. From a literature based starting point, qualitative interviews with orthopaedic healthcare professionals, were then performed ascertaining if and how clinicians would use such a PROM and change measure. Analysis of in-depth patient-interviews in phase one identified important patient-reported factors in early recovery which were used to provide questionnaire themes. In Phase two, candidate items from Phase One interviews were generated and pilot questionnaires developed and tested. Exploratory factor analysis with item reduction and final testing of the questionnaires was performed in phase three. Phase Four involved validation testing. Results: Qualitative interviews (n = 22) with orthopaedic healthcare professionals, helped determine views of potential users, and guide structure. In Phase One, factors from patient interviews (n = 30) were used to find questionnaire themes and generate items. Pilot questionnaires were developed and tested in Phase Two. Items were refined in the context of cognitive debrief interviews (n = 34) for potential inclusion in the final tools. Final testing of questionnaire properties with item reduction (n = 168) was carried out in phase three. Validation of the OARS and OACS was performed in phase four. Both measures were administered to consecutive patients (n = 155) in an independent cohort. Validity and reliability were assessed. Psychometric testing showed positive results, in terms of internal consistency and sensitivity to change, content validity and relevance to patients and clinicians. In addition, these measures have been found to be acceptable to patients throughout early recovery with validation across the 6 week period. Conclusions: These brief, easy-to-use tools could be of great use in assessing recovery pathways and interventions in arthroplasty surgery. [ABSTRACT FROM AUTHOR]

Summary: Background: A better understanding of coeliac disease can be achieved by assessing health‐related quality of life alongside clinical factors. Existing patient‐reported outcome measures (PROMs) evaluating quality of life in coeliac disease have not been developed in accordance with the US Food and Drug Administration guidelines. Aim: To develop a PROM in accordance with best practice guidelines, capturing all aspects of quality of life important to adults with coeliac disease. Methods: Candidate items for the Coeliac Disease Assessment Questionnaire (CDAQ) were refined through item appraisal, expert review, cognitive interviews, and a translatability assessment. A cross‐sectional survey determined further item reduction and the CDAQ's structure. The final CDAQ was administered alongside the Short Form Health Survey Version 2 (SF?36v2) in a second survey to assess construct validity and test‐retest reliability. Results: Pre‐testing the 64 candidate items revealed a range of issues which guided their refinement and reduction, resulting in the final CDAQ with 32 items representing 5 subscales: stigma (eight items), dietary burden (eight items), symptoms (five items), social isolation (five items), and worries and concerns (six items). Cronbach's alpha ranged between 0.82 and 0.88 for all domains. Further results showed CDAQ scores were more strongly correlated with the SF‐36v2's mental health dimensions, as expected. Intraclass correlation coefficients ranged from 0.79 to 0.89. Conclusion: The CDAQ is a reliable and valid coeliac‐specific measure that captures all aspects of quality of life important to adults with coeliac disease. Further work is underway to assess the CDAQ's responsiveness to change. [ABSTRACT FROM AUTHOR]

Aim: To identify and appraise the quality of studies that primarily assessed the measurement properties of English language versions of multidimensional patient-reported outcome measures (PROMs) when evaluated with children with neurodisability, and to summarize this evidence.Method: MEDLINE, Embase, PsycINFO, CINAHL, AMED, and the National Health Service Economic Evaluation Database were searched. The methodological quality of the papers was assessed using the COnsensus-based Standards for selection of health Measurement INstruments checklist. Evidence of content validity, construct validity, internal consistency, test-retest reliability, proxy reliability, responsiveness, and precision was extracted and judged against standardized reference criteria.Results: We identified 48 studies of mostly fair to good methodological quality: 37 papers for seven generic PROMs (CHIP, CHQ, CQoL, KIDSCREEN, PedsQL, SLSS, and YQOL), seven papers for two chronic-generic PROMs (DISABKIDS and Neuro-QOL), and four papers for three preference-based measures (HUI, EQ-5D-Y, and CHSCS-PS).Interpretation: On the basis of this appraisal, the DISABKIDS appears to have more supportive evidence in samples of children with neurodisability. The overall lack of evidence for responsiveness and measurement error is a concern when using these instruments to measure change, or to interpret the findings of studies in which these PROMs have been used to assess change. [ABSTRACT FROM AUTHOR]

Background: Health services are increasingly focused on measuring and monitoring outcomes, particularly those that reflect patients' priorities. To be meaningful, outcomes measured should be valued by patients and carers, be consistent with what health professionals seek to achieve, and be robust in terms of measurement properties. The aim of this study was (i) to seek a shared vision between families and clinicians regarding key aspects of health as outcomes, beyond mortality and morbidity, for children with neurodisability, and (ii) to appraise which multidimensional patient reported outcome measures (PROMs) could be used to assess salient health domains. Methods: Relevant outcomes were identified from (i) qualitative research with children and young people with neurodisability and parent carers, (ii) Delphi survey with health professionals, and (iii) systematic review of PROMs. The International Classification of Functioning Disability and Health provided a common language to code aspects of health. A subset of stakeholders participated in a prioritisation meeting incorporating a Q-sorting task to discuss and rank aspects of health. Results: A total of 33 pertinent aspects of health were identified. Fifteen stakeholders from the qualitative and Delphi studies participated in the prioritisation meeting: 3 young people, 5 parent carers, and 7 health professionals. Aspects of health that emerged as more important for families and targets for health professionals were: communication, emotional wellbeing, pain, sleep, mobility, self-care, independence, mental health, community and social life, behaviour, toileting and safety. Whilst available PROMs measure many aspects of health in the ICF, no single PROM captures all the key domains prioritised as for children and young people with neurodisability. The paucity of scales for assessing communication was notable. Conclusions: We propose a core suite of key outcome domains for children with neurodisability that could be used in evaluative research, audit and as health service performance indicators. Future work could appraise domain-specific PROMs for these aspects of health; a single measure assessing the key aspects of health that could be applied across paediatric neurodisability remains to be developed. [ABSTRACT FROM AUTHOR]

Introduction: The socio-economic impact of critical illnesses on patients and their families in Europe has yet to be determined. The aim of this exploratory study was to estimate changes in family circumstances, social and economic stability, care requirements and access to health services for patients during their first 12 months after ICU discharge. Methods: Multi-center questionnaire-based study of survivors of critical illness at 6 and 12 months after ICU discharge. Results: Data for 293 consenting patients who spent greater than 48 hours in one of 22 UK ICUs were obtained at 6 and 12 months post-ICU discharge. There was little evidence of a change in accommodation or relationship status between pre-admission and 12 months following discharge from an ICU. A negative impact on family income was reported by 33% of all patients at 6 months and 28% at 12 months. There was nearly a 50% reduction in the number of patients who reported employment as their sole source of income at 12 months (19% to 11%) compared with pre-admission. One quarter of patients reported themselves in need of care assistance at 6 months and 22% at 12 months. The majority of care was provided by family members (80% and 78%, respectively), for half of whom there was a negative impact on employment. Amongst all patients receiving care, 26% reported requiring greater than 50 hours a week. Following discharge, 79% of patients reported attending their primary care physician and 44% had seen a community nurse. Mobility problems nearly doubled between pre-admission and 6 months (32% to 64%). Furthermore, 73% reported moderate or severe pain at 12 months and 44% remained significantly anxious or depressed. Conclusions: Survivors of critical illness in the UK face a negative impact on employment and commonly have a care requirement after discharge from hospital. This has a corresponding negative impact on family income. The majority of the care required is provided by family members. This effect was apparent by 6 months and had not materially improved by 12 months. This exploratory study has identified the potential for a significant socioeconomic burden following critical illness. [ABSTRACT FROM AUTHOR]

The objective of this study was to define 'quality' of headache care, and develop indicators that are applicable in different settings and cultures and to all types of headache. No definition of quality of headache care has been formulated. Two sets of quality indicators, proposed in the US and UK, are limited to their localities and/or specific to migraine and their development received no input from people with headache. We first undertook a literature review. Then we conducted a series of focus-group consultations with key stakeholders (doctors, nurses and patients) in headache care. From the findings we proposed a large number of putative quality indicators, and refined these and reduced their number in consultations with larger international groups of stakeholder representatives. We formulated a definition of quality from the quality indicators. Five main themes were identified: (1) headache services; (2) health professionals; (3) patients; (4) financial resources; (5) political agenda and legislation. An initial list of 160 putative quality indicators in 14 domains was reduced to 30 indicators in 9 domains. These gave rise to the following multidimensional definition of quality of headache care: 'Good-quality headache care achieves accurate diagnosis and individualized management, has appropriate referral pathways, educates patients about their headaches and their management, is convenient and comfortable, satisfies patients, is efficient and equitable, assesses outcomes and is safe.' Quality in headache care is multidimensional and resides in nine essential domains that are of equal importance. The indicators are currently being tested for feasibility of use in clinical settings. [ABSTRACT FROM AUTHOR]

Our objective was to investigate the relationship between support by health and social care services and caregiver well-being. A survey, including a generic health status measure (SF-12), a disease-specific measure for patients (ALSAQ-40), the Carer Strain Index (CSI) for caregivers and questions on experiences of health and social care services, was sent to patient members of the MND Association (UK) and their caregivers. A single 'problem score' was calculated from the experience questions and the relationship between the problem score with caregiver and patient well-being was analysed. Most caregivers reported at least one problem with support from services. The most common problems were services not valuing caregivers' experiences, and caregivers not feeling sufficiently involved in planning care. The problem score significantly increased with increasing caregiver strain and worsening mental health. The problem score was also increased as patient well-being decreased. The results suggest that caregiver strain was higher and mental health lower as the number of problems reported increased. A higher perceived lack of caregiver support was also related to a decrease in patient well-being, suggesting that caregivers' needs increase as the disease progresses. This emphasizes the importance of MND caregivers being appropriately supported by health and social care services in their caregiving role. [ABSTRACT FROM AUTHOR]

Amyotrophic lateral sclerosis/motor neuron disease and other related disorders are fatal progressive neurodegenerative conditions that have a substantial impact on quality of life (QoL). This systematic review examines the different methods and instruments used to assess QoL in this condition from which recommendations are made of those that evidence suggests are the most appropriate. Databases were used to survey the available literature to cover as many different approaches and papers as possible. Due to the wide variety of approaches to the measurement of QoL data across the papers, no meta-analysis was possible. The available evidence suggests that at the present time the most appropriate measures are the SF-36, a generic widely used QoL measure, and the disease specific ALSAQ-40. However, as many of the validation studies on the ALSAQ-40 were undertaken by the developers of this instrument, further independent research is desirable to confirm these conclusions. [ABSTRACT FROM AUTHOR]

Carers of people with MND may experience changes to their health and lifestyle. Statutory and voluntary organizations are able to support the carer in various ways. This review investigates the personal impact on carers and their experiences of service provision. A systematic search of online and grey literature was made for the period 1994–2004. Thirty‐two key texts were retrieved and a narrative synthesis conducted. The main themes were: 1) Impact on carer: general health, emotional state, life satisfaction, socio‐economic concerns, relationships, and protective factors; 2) Experience of service provision: primary care, health professionals, social care, written information, and voluntary organizations. There is a paucity of written documentation on the experience of assisting someone with MND. Data collected are diverse and sometimes contradictory. Sample sizes are often small and generalization difficult. Main findings show that maintenance of social support, activities, and a positive outlook may lessen the chance of ill health arising from long hours spent caring, and having a named coordinator may assist with access to resources, and provide practical and emotional support during and after the caring role. Carers may become ill themselves unless adequate support is given to them throughout the course of the disease. [ABSTRACT FROM AUTHOR]

Background: Responsiveness to patients is now seen as a key characteristic of effective health systems. This study aimed to learn more about European people's views on the responsiveness of their country's health systems and healthcare providers. Methods: Telephone survey with random samples of the populations in Germany, Italy, Poland, Slovenia, Spain, Sweden, Switzerland and the UK using random digit dialling. Results: Responses were obtained from 8119 people aged 16 and over. Just over half the respondents said that doctors always listened carefully to them, gave them time for questions and provided clear explanations. Respondents from Switzerland and the UK reported consistently high rates of satisfaction with doctors' communication skills, while respondents from Poland were significantly less satisfied. Younger people were more critical than older people. Expectations of patient involvement in treatment decisions were high, particularly among younger people, with 74% indicating a desire to be actively involved. Most respondents felt they should have a choice of primary care doctor, specialist doctor and hospital, but less than half felt they had sufficient information to make an informed choice. There were significant variations between the countries in reported levels of involvement and in satisfaction with opportunities for choice. Conclusions: The results suggest that many European patients want a more autonomous role in health care decision-making. Policy-makers and clinicians should consider how to narrow the gap between public expectations and patients' experience. [ABSTRACT FROM AUTHOR]

: Background and objectivesHealth status measures, used to measure the subjective functioning and well-being of respondents, are increasingly being used in trials of treatments that are undertaken in a variety of countries. To assess comparability of results gained from such cross-cultural studies, it is important for researchers to know the comparability of instruments across cultures. One measure widely used in cross-cultural studies is the Parkinson''s Disease Questionnaire (PDQ-39). We evaluated response rate, data quality, score reliability, and scaling assumptions of the instrument in the United States, Canada, Spain, Italy, and Japan.: MethodsOur data were gained from the Global Parkinson''s Disease Survey, a cross-national survey, in which the PDQ-39 was interviewer administered to respondents.: ResultsOur data suggest that the PDQ-39 is, for the most part, a valid and reliable measure that can be appropriately and meaningfully used in cross-cultural studies. However, one of the dimensions of the measure, Social Support, may not be sufficiently reliable to be used as a primary endpoint in trials.: ConclusionThe PDQ-39 seems to be sufficiently robust to be used in trials and surveys in cross-cultural studies. [Copyright &y& Elsevier]

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. [ABSTRACT FROM AUTHOR]

Measuring the experiences of health care for patients with musculoskeletal disorders (MSD): development of the Picker MSD questionnaire Analysis of data from a survey of patients with musculoskeletal problems (mainly back and neck pain) to develop a core measure of patients' experiences of health care. A secondary purpose was to determine whether a single summary index figure could be generated from the instrument. The data reported here comes from a postal survey of patients attending a spine clinic in Stockholm, Sweden. After attending the clinic patients were mailed a questionnaire. Up to two reminders were sent to nonresponders. Questionnaires were sent to 342 patients. Totally 173 (51%) questionnaires were returned, of which 38.1% respondents were male and 61.2% female. The mean age of patients was 54 years (SD 13.84), ranging from 16 to 88. Sixteen items on the questionnaire were found to constitute a reliable index of patient experience and which seem to be tapping the most important aspects of patient experience. The index score was found to have high construct validity. The instrument provides a core set of issues that should be covered when assessing the quality of care patients attending clinics for musculoskeletal disorders. [ABSTRACT FROM AUTHOR]

Background The aim of the study was to determine the construct validity of the 12‐item Short Form health survey questionnaire (SF‐12) across ethnic groups in a large community sample of the United Kingdom. [ABSTRACT FROM PUBLISHER]

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.

: Background and objectiveTo be useful, results from health-related quality of life (HRQoL) measures must be interpretable. The objective of this article is to examine statistical (distributional) approaches to interpretability. The standard error of measurement (SEM) and the standard error of the difference (Sdiff) are used in data on individuals with Parkinson''s disease to calculate the minimum change scores required to be statistically meaningful for each dimension of an instrument to assess HRQoL in Parkinson''s disease, the PDQ-39.: MethodsData was collected from both a community and a clinic study; in both studies the PDQ-39 was administered at baseline and follow-up.: ResultsThe patterns of SEMs and Sdiffs were similar both across time periods and between samples, for all dimensions except Social Support.: ConclusionsThe results suggest that, for example, six points change on a 0–100 transformed scoring of the Mobility dimension may be considered on distributional grounds a minimum meaningful change. The demonstrated consistency across occasions and types of sample of SEMs and Sdiff for the majority of the dimensions of the PDQ-39, is evidence of the theoretically claimed advantage of this measure of sample independence, and supports use of this distributional approach to minimum meaningful change. [Copyright &y& Elsevier]

Objective: To assess the impact of endometriosis on health-related quality of life (HRQoL) and work productivity. Design: Multicenter cross-sectional study with prospective recruitment. Setting: Sixteen clinical centers in ten countries. Patient(s): A total of 1,418 premenopausal women, aged 18–45 years, without a previous surgical diagnosis of endometriosis, having laparoscopy to investigate symptoms or to be sterilized. Intervention(s): None. Main Outcome Measure(s): Diagnostic delay, HRQoL, and work productivity. Result(s): There was a delay of 6.7 years, principally in primary care, between onset of symptoms and a surgical diagnosis of endometriosis, which was longer in centers where women received predominantly state-funded health care (8.3 vs. 5.5 years). Delay was positively associated with the number of pelvic symptoms (chronic pelvic pain, dysmenorrhoea, dyspareunia, and heavy periods) and a higher body mass index. Physical HRQoL was significantly reduced in affected women compared with those with similar symptoms and no endometriosis. Each affected woman lost on average 10.8 hours (SD 12.2) of work weekly, mainly owing to reduced effectiveness while working. Loss of work productivity translated into significant costs per woman/week, from US$4 in Nigeria to US$456 in Italy. Conclusion(s): Endometriosis impairs HRQoL and work productivity across countries and ethnicities, yet women continue to experience diagnostic delays in primary care. A higher index of suspicion is needed to expedite specialist assessment of symptomatic women. Future research should seek to clarify pain mechanisms in relation to endometriosis severity. [Copyright &y& Elsevier]