Search

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]

BACKGROUND The Endometriosis Health Profiles (EHPs), the EHP-30 and EHP-5, are patient-reported outcome measures that were developed to measure the health-related quality of life (HRQoL) of women living with endometriosis. Prior to their development, a systematic review was undertaken which identified that the HRQoL of women living with endometriosis was poorly understood, with only three medical and one surgical study identified. OBJECTIVE AND RATIONALE The 20-year anniversary of the EHP-30 provided a timely opportunity to assess how the tools have been used and explore what the findings tell us about the impact of endometriosis and its associated treatments upon women's QoL. Applying robust systematic review methodology, following PRISMA guidelines, we sought to answer: How many studies have used the EHP and for what purpose?; What are the demographic characteristics and international context of the studies?; What is the methodological nature and quality of the studies?; Which interventions have been assessed and what are the reported EHP outcomes?; and Can the EHP outcomes of these interventions be analysed using a meta-analysis and, if so, what do the results show? SEARCH METHODS The electronic databases MEDLINE, CINAHL, PsycINFO, PubMed, and Google Scholar were searched from the year the EHP was first published, in 2001 to 26 February 2020 using the search terms 'EHP30', 'EHP5', 'EHP-30', 'EHP-5', 'endometriosis health profile 30', and 'endometriosis health profile 5'. We updated the searches on 9 April 2021. All included studies were quality assessed using the Mixed Methods Appraisal Tool (MMAT). OUTCOMES The review included 139 papers. In clinical intervention studies, the EHPs were deployed most frequently to measure the outcomes of medical (n = 35) and surgical (n = 21) treatment. The EHPs were also used in 13 other intervention studies, 29 non-interventional studies, 32 psychometric/cross cultural validation studies; six diagnostic studies, and in three other studies to measure outcomes in related conditions. They were mainly deployed in studies undertaken in Europe and North America. Overall, regardless of the nature of the intervention, most women reported improvements in HRQoL after treatment. Surgical interventions generally resulted in significant improvements for the longest amount of time. There was also evidence that when participants stopped taking medication their EHP scores worsened, perhaps reinforcing the temporary impact of medical treatment. Younger patients reported more negative impact upon their HRQoL. Further evidence using classical test theory to support the EHPs' robust psychometric properties, including acceptability, dimensionality, reliability, validity (including cross-cultural), and responsiveness, was demonstrated, particularly for the EHP-30. Strikingly, using anchor-based methods, EHP-30 responsiveness studies demonstrate the largest mean changes in the 'control and powerlessness' domain post-intervention, followed by 'pain'. MMAT outcomes indicated the quality of the papers was good, with the exception of five studies. A meta-analysis was not undertaken owing to the heterogeneity of the interventions and papers included in this review. WIDER IMPLICATIONS Women with endometriosis face a lifetime of surgical and/or medical interventions to keep the condition under control. Less invasive treatments that can lead to improved longer term physical and psycho-social outcomes are needed. The EHPs are reliable, valid, acceptable, and responsive tools, but more assessment of EHP outcomes using modern psychometric methods and in the context of women from ethnically diverse backgrounds and in routine clinical care would be beneficial. Given the brevity of the EHP-5, it may be the most appropriate version to use in routine clinical practice, whereas the longer EHP-30, which provides more granularity, is more appropriate for research. [ABSTRACT FROM AUTHOR]

Introduction: Informal carers support persons with dementia to live at home, even with deteriorating physical, social and cognitive issues. This study aims to examine the experiences and impact of Assistive Technology (AT) on carers, providing care for a person with dementia.Methods: This is an explanatory sequential mixed methods study. The quantitative phase was an online and postal survey using the Carers Assistive Technology Experience Questionnaire and Short Form-12 (SF-12) questionnaire, with carers of persons with dementia in the UK, who used AT. The qualitative phase involved in-depth telephone interviews with a purposive sample of survey respondents and was analysed using hermeneutic phenomenology to develop, compare and explain the findings of the survey.Results: The survey included data from 201 carers. Smartphones (45.5%) and tablet computers (45.0%) were the most frequently used AT. Multiple AT were used in the care of persons with dementia predominantly for safety (78.5%), communication (66.0%), and reminders (62.5%). The SF-12 indicated that carers in the 46-65 age group and carers who were not extremely satisfied with AT had lower mental component scores whilst carers who lived with the person with dementia and older carers had lower physical component scores. Twenty-three carers participated in the interviews, and 5 themes with 14 sub-themes were identified. The interviews helped confirm data from the survey on the impact of AT on the physical, mental and social wellbeing of the carers. It helped describe reasons for satisfaction with AT; how AT was used in daily life and strengthened caring relationships and how wider support systems enhanced the care of a person with dementia using AT.Conclusions: This study describes the use of AT in the real-world context. AT supplements the care provided to people with dementia in the community. Appropriate use, access to AT and abilities of the carer can enhance the support provided through AT to both carers and the person with dementia. [ABSTRACT FROM AUTHOR]

Background informal carers provide the majority of the support for persons with dementia living at home. Restrictions imposed due to COVID-19 have had a profound impact on the daily life of the entire population. This study provides insight into the impact of these restrictions on carers of people with dementia living at home. Design qualitative semi-structured interviews. Participants purposive sample of carers who provide at least 10 hours of care a week for the person with dementia living at home. Setting UK. Results twenty-three carers were interviewed, and thematic analysis identified three main themes—Changes to daily life, impact on carer health and wellbeing and reduced support from health and social support networks. The results highlight the impact of restrictions imposed on daily life and routines due to the pandemic, wellbeing of carers, reduced social support, lack of access to health and care professionals and respite for carers. The restrictions have had negative consequences on carers' wellbeing, and they have experienced difficulties in accessing formal care services and respite care. Conclusion carers attempt to continue to provide physical, emotional and practical support for persons with dementia in the community throughout the COVID-19 restrictions. To prevent a future carer crisis, carers need better support systems including formal carer services, telecare solutions that work for them and additional support for respite, as the restrictions from this pandemic continue. [ABSTRACT FROM AUTHOR]

Background: Exercise is now a significant and key component in the management of Parkinson's disease. However, no self‐report, Parkinson's‐specific measure of exercise currently exists. Objective: To develop a patient‐reported outcome measure (PROM) for use in studies and clinical trials that aim to assess the efficacy of exercise therapy for people with Parkinson's (PwP). Methods: Participants were recruited via Parkinson's UK. To generate meaningful items, PwP participated in exploratory cognitive interviews. To pretest the items generated, PwP took part in two rounds of cognitive debrief interviews. Items were subsequently tested through an online survey that also included the eight‐item Parkinson's Disease Questionnaire (PDQ‐8) and Oxford Participation and Activities Questionnaire (Ox‐PAQ). Results: Twenty PwP were interviewed for item generation. Analyses identified issues related to adopting and maintaining exercise, resulting in the generation of 10 items. Fourteen PwP took part in subsequent cognitive debrief interviews. Following the first 10 interviews, one item was removed, and minor adjustments were made to the wording of two items. Four final interviews verified that no further adjustments were required. Consequently, nine items were included in the validation survey, which was fully completed by 398 PwP. Inspection of floor and ceiling effects resulted in the removal of two further items. A principal component analysis identified a single seven‐item factor explaining 61.6% of variance. Further analyses indicated that the measure demonstrates sound reliability and validity. Conclusions: Results indicate that the PDQ‐Exercise is an acceptable, reliable, and valid PROM. Further assessment of its psychometric properties is in progress. © 2021 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society [ABSTRACT FROM AUTHOR]

Background: The PD MED study reported small but persistent benefits in patient‐rated mobility scores and quality of life from initiating therapy with levodopa compared with levodopa‐sparing therapies in early Parkinson's disease (PD). Objectives: The objective was to estimate the cost‐effectiveness of levodopa‐sparing therapy (dopamine agonists or monoamine oxidase type B inhibitors compared with levodopa alone. Methods: PD MED is a pragmatic, open‐label randomized, controlled trial in which patients newly diagnosed with PD were randomly assigned between levodopa‐sparing therapy (dopamine agonists or monoamine oxidase type B inhibitors) and levodopa alone. Mean quality‐adjusted life‐years and costs were calculated for each participant. Differences in mean quality‐adjusted life‐years and costs between levodopa and levodopa‐sparing therapies and between dopamine agonists and monoamine oxidase type B inhibitors were estimated using linear regression. Results: Over a mean observation period of 4 years, levodopa was associated with significantly higher quality‐adjusted life‐years (difference, 0.18; 95% CI, 0.05–0.30; P < 0.01) and lower mean costs (£3390; £2671–£4109; P < 0.01) than levodopa‐sparing therapies, the difference in costs driven by the higher costs of levodopa‐sparing therapies. There were no significant differences in the costs of inpatient, social care, and institutional care between arms. There was no significant difference in quality‐adjusted life‐years between those allocated dopamine agonists and monoamine oxidase type B inhibitors (0.02; −0.17 to 0.13 in favor of dopamine agonists; P = 0.81); however costs were significantly lower for those allocated monoamine oxidase type B inhibitors (£2321; £1628–£3015; P < 0.01) because of the higher costs of dopamine agonists. There were no significant differences between arms for other costs. Conclusions: Initial treatment with levodopa is highly cost‐effective compared with levodopa‐sparing therapies. Monoamine oxidase type B inhibitors, as initial levodopa‐sparing therapy was more cost‐effective, with similar quality‐adjusted life‐years but lower costs than dopamine agonists. © 2021 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society [ABSTRACT FROM AUTHOR]

Background: Assistive Technology (AT) supports persons with dementia and their carers (family, friends and neighbours), yet little is known about experiences and the impact of AT on carers. We report on an exploratory survey that examined the types, uses, costs and impact of AT on carers as well as their quality of life.Methods: A cross-sectional survey using the Carers Assistive Technology Experience Questionnaire collected data from carers in the UK, who used at least one AT in the previous year and provided more than 10 h of care for a person with dementia, living at home. Carers completed the questionnaire online or on paper and information on AT, socio-demographic details, and Short-Form Health Survey (SF-12) data were collected. Descriptive and inferential statistics were used to report results and draw conclusions.Results: Data from 201 carers was analysed. Smartphones and tablet computers were the most frequently used AT. AT were used predominantly for safety, communication, and reminders. Carers usually make decisions on buying and continued use of AT. Multiple AT devices were used in the care of persons with dementia and number of AT used was associated with perceived satisfaction. Satisfaction with AT was not related to age, living arrangements and relationship of carers. From the SF-12, Mean Physical Component Score was 49.19 (95%CI- 47.75 to 50.63) and Mental Component Score was 45.37 (95%CI- 43.93 to 46.80). Women, carers in the 46-65 age group and carers who were not extremely satisfied with AT had lower MCS scores. Carers who lived with the person with dementia and older carers had lower PCS scores.Conclusions: Carers report that AT has a beneficial impact. Carers use multiple ATs, perceive AT to be satisfactory and recommend AT use to others. To support carers, we recommend establishment of centrally funded information sources and a loan store for AT. Further research on incremental addition of AT and changes to formal/paid care because of using AT should be undertaken. Practitioners, academics, manufactures and policy makers should consider the experiences of carers in research, development and use of AT to facilitate improved community living of people with dementia. [ABSTRACT FROM AUTHOR]

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]

Introduction Musculoskeletal deformities and gait deviations are common features in ambulatory cerebral palsy (CP). Deformity correction through lower limb orthopaedic surgery is the standard form of care aimed at improving or preserving motor function. Current research on CP care does not always take into account individual patients’ expectations and needs. There is a wide range of outcome domains and outcome measures used to assess outcome from treatment. This can lead to reporting bias and make it difficult to compare and contrast studies. A core outcome set (COS) would enhance the efficiency, relevance and overall quality of CP orthopaedic surgery research. The aim of this study is to establish a standardised COS for use in evaluating lower limb orthopaedic surgery for ambulatory children and young people with CP. Methods/analysis A set of outcomes domains and outcome measures will be developed as follows: (1) a qualitative evidence synthesis to identify relevant outcomes from children and young people and family perspective; (2) a scoping review to identify relevant outcomes and outcome measures; (3) qualitative research to explore the experience of key stakeholders; (4) prioritisation of outcome domains will be achieved through a two-round Delphi process with key stakeholders; (5) a final COS will be developed at a consensus meeting with representation from key stakeholder groups. Ethics and dissemination Ethical approval for this study was granted in the UK by the Oxfordshire Research Ethics Committee B (REC reference 19/SC/0357). Informed consent will be obtained from participants taking part in the qualitative research and Delphi process. Study findings will be published in an open access journal and presented at relevant national and international conferences. Charities and associations will be engaged to promote awareness of the project COS results. [ABSTRACT FROM AUTHOR]

Objective: Assistive technology (AT) can help carers (family, friends and neighbours) and people with dementia to stay well and safely at home. There are important gaps in what we know about experience of using AT from the perspective of carers of persons with dementia. This study investigates carers’ experience of using AT in supporting and caring for persons with dementia who live at home. Design: Qualitative phenomenological study with semi-structured interviews to achieve data saturation and thematic analysis to identify key themes. Setting: Community-based within the UK. Participants: Twenty-three (14 women, 9 men) adult carers of persons with dementia who have used at least one AT device.Results: All participants reported benefiting to varying degrees from using AT. There were 5 themes and 18 subthemes that highlighted reasons for using AT and use of AT over time. Providing care for a person with dementia, motivation for using AT, changes to roles and routines, carer knowledge and skills for using AT and social, environmental and ethical considerations were the main themes. This study showed that AT can provide reassurance and support for carers of persons with dementia but there are difficulties with acquiring and continued use of AT as dementia progresses. Conclusions: Carers consider AT as an adjunct to care they provided in caring for a person with dementia. Use of AT should be considered in the personal, social and environmental context of persons with dementia and their carers. Further research and policy interventions are needed to address best use of resources and guidance on data sharing and data protection while using AT. [ABSTRACT FROM AUTHOR]

Background: Dementia is a health and care priority globally. Caring for persons with dementia is a challenge and can lead to negative psychological, physiological and financial consequences for informal carers. Advances in technology have the potential to assist persons with dementia and their carers, through assistive technology devices such as electronic medication dispensers, robotic devices trackers and motion detectors. However, little is known about carers' experience and the impact of these technologies on them. This review aims to investigate the outcomes and experience of carers of persons with dementia, who live at home and use assistive technology.Methods: A systematic search in seven databases and manual searches were carried out using pre-defined inclusion and exclusion criteria to identify studies on carers of persons with dementia involving the use of assistive technology. The search identified 56 publications with quantitative, qualitative and mixed-method designs.Results: The studies reported positive and negative findings and focused on a wide variety of assistive technology devices. There were large differences in the uses of assistive technology, outcome measures used and the quality of studies. Knowledge and acceptance, competence to use and ethical issues when using assistive technology were themes that emerged from the studies. Carers generally appreciated using assistive technology and their experience of use varied.Conclusions: The intention of this systematic review is to list and classify the various types of assistive technology used by carers of persons with dementia and explores the positive and negative aspects, knowledge, acceptance and ethical issues in the use of assistive technology by carers of persons with dementia. We recommend the use of a standard and person-centred system of classifying and naming assistive technology devices and systems and for future research efforts in assistive technology to incorporate a family/carer centred model.Systematic Review Registration: PROSPERO - CRD42017082268 . [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]

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]

Aims and objectives: To explore the patients' perspective of surgery and early recovery when undergoing lower limb (hip or knee) arthroplasty. Background: Lower limb arthroplasty is a commonly performed procedure for symptomatic arthritis, which has not responded to conservative medical treatment. Each patient's perspective of the surgical process and early recovery period impacts on their quality of life. Design: Open, semistructured qualitative interviews were used to allow for a deeper understanding of the patient perspective when undergoing a hip or knee arthroplasty. Methods: Following ethical approval, 30 patients were interviewed between August and November 2016 during the perioperative period while undergoing an elective hip or knee arthroplasty (n = 30). The interviews were performed between the day of surgery and a nine‐week postoperative clinic appointment. Data were analysed using an in‐depth narrative thematic analysis method. NVivo qualitative data analysis software was used. Results: Seven main themes evolved from the interviews: “improving function and mobility”, “pain”, “experiences of health care”, “support from others”, “involvement and understanding of care decisions”, “behaviour and coping” and “fatigue and sleeping”. Conclusions: The early postoperative recovery period is of vital importance to all surgical patients. This is no different for the orthopaedic patient. However, identifying key self‐reported areas of importance from patients can guide clinical focus for healthcare professionals. Relevance to clinical practice: To have specific patient‐reported information regarding key areas of importance during the perioperative phase is invaluable when caring for the orthopaedic surgical patient. It gives insight and understanding in to this increasing population group. This study has also served as a starting point in the development of a questionnaire which could be used to assess interventions in the lower limb arthroplasty population. These results will influence both items and content of the questionnaire. [ABSTRACT FROM AUTHOR]

Purpose: Spousal violence against women is a global public health problem. In India, approximately 40% of women report spousal violence. Like physical and sexual violence, emotional violence may be a determinant of women's health. This study explores the association between exposure to spousal emotional abuse and poor reproductive outcomes in Indian women.Methods: Data on 60,350 women, collected in the Third Indian National Family Health Survey were analysed to assess the impact of spousal emotional abuse on seven reproductive outcomes: age at first birth, number of children, terminated pregnancies, unwanted pregnancies, access to prenatal and skilled delivery care, and breastfeeding. Spousal emotional abuse was assessed using two overlapping constructs: emotional violence and controlling behaviour. Multivariable logistic regression was used for analysis.Results: Spousal emotional violence and controlling behaviour was reported by 16 and 38% of the women, respectively. In unadjusted analyses, spousal emotional violence was associated with all adverse reproductive outcomes, except breastfeeding. Controlling for socio-demographic risk factors attenuated the association, and further adjustment for other forms of violence removed all significant associations. Spousal controlling behaviour was significantly associated with all outcomes, except breastfeeding. The effects remained statistically significant in multivariable regression.Conclusions: Women's experience of violence may be under-reported. When other forms of violence were adjusted for, emotional violence was not associated with adverse reproductive outcomes, whereas controlling behaviour remained associated with all but one adverse reproductive outcome. Therefore, spousal controlling behaviour requires further investigation as a determinant of reproductive health. [ABSTRACT FROM AUTHOR]

Adjuvant radiotherapy in patients with high-risk cutaneous Squamous Cell Carcinoma After surgery (SCC-AFTER): patient and carer views regarding a proposed clinical trial It's certainly worth doing (Patient)If you ... said it [radiotherapy] only benefits thirty percent of patients then there is a school of thought which would say, "Well a hundred percent of patients will want it", and hope that they are in the thirty percent. Dear Editor, Cutaneous squamous cell carcinoma (cSCC) represents the second most common cancer in the UK.1 High-risk cSCC represents a subgroup of this disease with higher risk of metastasis and death,2 and management remains unclear due to a shortage of randomized controlled trials (RCTs).3 We undertook Patient and Public Involvement (PPI) consultations with 13 patients and 3 carers with experience of cSCC, to explore their views about a trial that will investigate effectiveness of treating high-risk cSCC using surgical excision alone compared with surgery plus adjuvant radiotherapy. [Extracted from the article]

Background: Patient reported outcome measures (PROMs) are widely used in mental healthcare research for quality of life assessment but most fail to capture the breadth of health and non-health domains that can be impacted. We report the psychometric validation of a novel, multi-dimensional instrument based on Amartya Sen's capability approach intended for use as an outcome measure in mental health research.Methods: The Oxford Capabilities Questionnaire for Mental Health (OxCAP-MH) is a 16-item self-complete capability measure that covers multiple domains of functioning and welfare. Data for validation of the instrument were collected through a national randomised controlled trial of community treatment orders for patients with psychosis. Complete OxCAP-MH data were available for 172 participants. Internal consistency was established with Cronbach's alpha; an interclass correlation coefficient was used to assess test-retest reliability in a sub-sample (N = 50) tested one week apart. Construct validity was established by comparing OxCAP-MH total scores with established instruments of illness severity and functioning: EuroQol (EQ-5D), Brief Psychiatric Rating Scale (BPRS), Global Assessment of Functioning (GAF) and Objective Social Outcomes Index (SIX). Sensitivity was established by calculating standard error of measurement using distributional methods.Results: The OxCAP-MH showed good internal consistency (Cronbach's alpha 0.79) and test-retest reliability (ICC = 0.86). Convergent validity was evidenced by strong correlations with the EQ-5D (VAS 0.52, p < .001) (Utility 0.45, p < .001), and divergent validity through more modest associations with the BPRS (-0.41, p < .001), GAF (0.24, p < .001) and SIX (0.12, p = ns). A change of 9.2 points on a 0-100 scale was found to be meaningful on statistical grounds.Conclusions: The OxCAP-MH has demonstrable reliability and construct validity and represents a promising multi-dimensional alternative to existing patient-reported outcome measures for quality of life used in mental health research. [ABSTRACT FROM AUTHOR]

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. [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]

Background: Parkinson's caregivers are frequently affected by a range of physical and psychological factors affecting to the quality of life (QoL) of patients and caregivers. However, while there are well-validated QoL instruments for patients, few specific measures has been developed for caregivers of patients with PD. This study examined the psychometric properties of the Spanish version of the Parkinson Disease Questionnaire-Carer (PDQCarer) for use in PD caregivers. Methods: The PDQ-Carer and the Short Form-36 Health Survey (SF-36) were completed by sample of 73 caregivers of patients with PD in Spain (71.8% females; 63.6 ± 12.3 years old). Results: Psychometric analysis confirmed the reliability and validity of the Spanish version of the PDQ-Carer. The internal consistency was found to be satisfactory for the four PDQ-Carer domains: Personal and Social Activities, Depression and Anxiety, Self-care and Stress with Cronbach's alpha values ranging 0.80 to 0.95. The PDQ-Carer was significantly correlated with the eight SF-36 domains (r = -0.31 to -0.59, p < 0.001) supporting the concurrent validity of the instrument. Conclusions: Overall, these results provide preliminary evidence of the utility of the Spanish version of the PDQ-Carer in non-professionals caregivers. [ABSTRACT FROM AUTHOR]

Introduction: Williams and colleagues reported that DBS surgery for patients with advanced PD improves motor function and quality of life compared to best medical therapy alone at 1 year, but with surgery-related side effects in a minority. This article reports on the economic evaluation alongside this trial.Methods: Detailed resource use and quality of life over 12 months after randomization was obtained from the trial reported by Williams and colleagues. Outcomes were measured using the EQ-5D and quality-adjusted life years calculated.Results: Year 1 costs for surgery were significantly higher than in best medical therapy, at £19,069 compared to £9,813, a difference of £9,256 (95% confidence interval [CI]: £7,625, £10,887). There was a small, significant gain in utility at 1 year but a statistically insignificant gain of 0.02 quality-adjusted life years (95% CI: -0.015, 0.05) in the surgical arm. The incremental cost per quality-adjusted life year of surgery at 1 year was £468,528. Extrapolation reveals that after 5 years, this ratio is likely to reduce to £45,180, but subsequently rise to £70,537 at 10 years owing to the increased probability of battery replacements (and re-replacements) beyond 5 years.Conclusion: In this patient group, DBS is not cost-effective at 1 year. Extrapolation, however, reveals an increasing likelihood of cost-effectiveness up to 5 years and reducing cost-effectiveness between 5 and 10 years. These models are sensitive to assumptions about future costs and quality-adjusted life years gained. © 2016 International Parkinson and Movement Disorder Society. [ABSTRACT FROM AUTHOR]

Purpose: Patient-reported outcome measures (PROMs) are designed to assess patients' perceived health states or health-related quality of life. However, PROMs are susceptible to missing data, which can affect the validity of conclusions from randomised controlled trials (RCTs). This review aims to assess current practice in the handling, analysis and reporting of missing PROMs outcome data in RCTs compared to contemporary methodology and guidance. Methods: This structured review of the literature includes RCTs with a minimum of 50 participants per arm. Studies using the EQ-5D-3L, EORTC QLQ-C30, SF-12 and SF-36 were included if published in 2013; those using the less commonly implemented HUI, OHS, OKS and PDQ were included if published between 2009 and 2013. Results: The review included 237 records (4-76 per relevant PROM). Complete case analysis and single imputation were commonly used in 33 and 15 % of publications, respectively. Multiple imputation was reported for 9 % of the PROMs reviewed. The majority of publications (93 %) failed to describe the assumed missing data mechanism, while low numbers of papers reported methods to minimise missing data (23 %), performed sensitivity analyses (22 %) or discussed the potential influence of missing data on results (16 %). Conclusions: Considerable discrepancy exists between approved methodology and current practice in handling, analysis and reporting of missing PROMs outcome data in RCTs. Greater awareness is needed for the potential biases introduced by inappropriate handling of missing data, as well as the importance of sensitivity analysis and clear reporting to enable appropriate assessments of treatment effects and conclusions from RCTs. [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]

Objective. To compare a range of statistical models to enable the estimation of EQ-5D-3L utilities from responses to the Parkinson’s Disease Questionnaire 39 (PDQ-39). Methods. Linear regression, beta regression, mixtures of linear regressions and beta regressions, and multinomial logistic regression were compared in terms of their ability to accurately predict EQ-5D-3L utilities from responses to the PDQ-39 using mean error (ME), mean absolute error (MAE), and mean square error (MSE), overall and by Hoehn and Yahr stage. Models were estimated using data from the PD MED trial (n = 9123) and assessed on both the estimation data as well as external data from the PD SURG trial (n = 917). Results. Overall, the differences in the metrics of fit between models were small in both data sets, with performance poorer for all models in PD SURG. The performance across Hoehn and Yahr stages 1 to 3 were also similar, but multinomial logistic regression was found to exhibit less bias and better individual-level predictive accuracy in PD MED for those in Hoehn and Yahr stages 4 or 5. Overall, the multinomial logistic regression reported an ME of 0.038 out of sample and MAEs of 0.128 and 0.164 and MSEs of 0.030 and 0.044 in the estimation and external data sets, respectively. Poorer levels of the mobility domain score of the PDQ-39 were associated with increased odds of reporting problems for all EQ-5D domains except anxiety/depression. Conclusions. Finite mixture models with only few components can approximate the distribution of EQ-5D-3L utilities well but did not demonstrate improvements in predictive accuracy compared with multinomial logistic regression in the present data set. [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]

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. [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]

Background The 39-item Parkinson's Disease Questionnaire (PDQ-39) is the most thoroughly validated and extensively used self-report measure for the assessment of health-related quality of life in people with Parkinson's (PwP). Given the extent of its use and increasing emphasis on electronic data capture, an e-based version of the PDQ-39, the ePDQ, has recently been developed. The aim of this short report is to present some key reliability and validity data that confirm the psychometric quality of the ePDQ. Findings Participants were emailed a unique link to an online survey incorporating the ePDQ and demographic questions. A total of 118 PwP fully completed the survey. Floor and ceiling effects were calculated to ensure responses were not biased to extreme values. Consequently, score reliability was assessed by item-total correlations with a range from 0.34 to 0.90. Cronbach's alpha was calculated at between 0.64 and 0.95 for the eight domains of the ePDQ. Construct validity was assessed by comparing domain scores in relation to disease duration and gender, with hypothesised differences being largely confirmed. Construct validity was further assessed following a higher order factor analysis which confirmed the appropriateness of calculating a summary index score. Subsequently, significant, but moderate correlations were calculated between the ePDQ summary index score and disease duration and age at diagnosis. Conclusions Results indicate that the ePDQ largely mirrors the properties of its parent instrument, the PDQ-39, in terms of reliability and validity. Potential users can therefore incorporate the ePDQ into computer-based data capture systems with confidence. [ABSTRACT FROM AUTHOR]

Background: The PDQ-39 is the most thoroughly validated and widely used self-report instrument for the assessment of health-related quality of life in people with Parkinson's (PwP). Given the breadth of its use and increasing emphasis on electronic data capture, there may be significant benefit in validating an electronic version of the PDQ-39. Objective: Firstly, to migrate the paper-based version of the PDQ-39 to a computer based platform and assess its usability and acceptability to respondents. Secondly, to investigate the impact of implementing non-response options on response rates and data completeness. Methods: Six PwP participated in cognitive interviews in order to assess the usability and acceptability of the electronic version of the PDQ-39, the ePDQ. This was followed by an online survey of 129 PwP, randomly assigned to one of two groups; one required to provide a response to every item and one with the option to skip any item they did not wish to answer. Results: Cognitive interviews indicated that the ePDQ is acceptable to PwP, with positive feedback regarding layout, features and functionality. 125 PwP fully completed the ePDQ. Following randomization 60 participants completed the forced response ePDQ and 65 completed the non-forced version. Response rates of 98.4% were achieved for the forced response ePDQ and 95.6% for the non-forced. Missing value analyses calculated levels of missing data at below 5% in the non-forced sample. Conclusions: The ePDQ is user-friendly and acceptable to respondents. Additionally, there appears little difference when implementing non-response options on response rates and data completeness. [ABSTRACT FROM AUTHOR]

Background Enhancing quality of life for people with long-term conditions by monitoring patient-reported outcome measure scores is a key domain of health care policy. This study investigated the responsiveness of patient-reported outcome measures for long-term conditions. Methods A cohort survey was conducted in 33 primary care practices and 4485 patients (1334 asthma, 567 chronic obstructive pulmonary disease, 1121 diabetes, 525 epilepsy, 520 heart failure and 418 stroke) were sent a baseline survey containing a generic (EQ-5D) and a disease-specific measure. Baseline respondents were sent a follow-up after 1 year. Differences in scores for each long-term condition were assessed by paired t-tests. The relationship between scores and self-reported 'change in health' was assessed by analysis of variance. Results The baseline achieved a 38.4% response rate and the follow-up 71.5%. The only significant difference for the EQ-5D was found for the Visual Analogue Scale in heart failure between baseline and follow-up, and for change in health. Significant differences between baseline and follow-up scores were found on the disease-specific measures for 1 asthma dimension and 1 stroke dimension. No significant differences were found for other conditions. Significant differences between self-reported change in health and the disease-specific measures were found for 4 asthma dimensions and 2 stroke dimensions. Conclusions Few significant differences were found between the baseline and follow up or between 'change in health' and PROMs scores. This could be explained by the time frame of one year being too short for change to occur or by the PROMs not being responsive enough to change in a primary care sample. The latter is unlikely as the PROMs were in part chosen for their responsiveness to change. The baseline response rates may mean that the sample is not representative, and stable patients may have been more likely to participate. If PROMs are to be used routinely to monitor outcomes in LTCs, further research is needed to maximize response rates, to ensure that the PROMs used are reliable, valid and sensitive enough to detect change and that the time frame for data collection is appropriate. [ABSTRACT FROM AUTHOR]

Background: The aim of this study was to investigate the experiences of people with mild cognitive impairment (MCI; PWMCI) and their "advocates," particularly within healthcare services.Methods: Semi-structured interviews were conducted with 23 PWMCI diagnosed ≤6 months ago and 20 advocates recruited via patients. The resulting data were content-analyzed.Results: PWMCI interviewed rarely reported negative impressions of their general practitioner (GP). Reports regarding memory services were more mixed: positive impressions related to finding the service to be "well run" and the staff "pleasant," negative ones to the assessment process or a perceived lack of feedback. Aside from improved information provision, most PWMCI had no suggestions for improvements to their healthcare. However, these results should be interpreted with caution as many of the PWMCI interviewed displayed evidence of impaired recall and/or insight relating to their condition and healthcare. Advocates generally reported more negative impressions of both contact with the PWMCI's GP (most commonly reporting a "dismissive" attitude) and memory services (with common complaints relating to the assessments used in clinics and lengthy waiting times). This group generally had suggestions for improvements to services - particularly regarding information provision, changes in the assessment process, and improvements in communication by services.Conclusions: To our knowledge, this is the first in-depth study of the difficulties experienced by PWMCI and their advocates which includes the context of healthcare provision. The specific needs of these groups, as described here, as well as those of people with dementia, should be considered when designing memory clinics and other related services. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM PUBLISHER]

Background:The aim of this study was to investigate the experiences of people with mild cognitive impairment (MCI; PWMCI) and their “advocates,” particularly within healthcare services.Methods:Semi-structured interviews were conducted with 23 PWMCI diagnosed ≤6 months ago and 20 advocates recruited via patients. The resulting data were content-analyzed.Results:PWMCI interviewed rarely reported negative impressions of their general practitioner (GP). Reports regarding memory services were more mixed: positive impressions related to finding the service to be “well run” and the staff “pleasant,” negative ones to the assessment process or a perceived lack of feedback. Aside from improved information provision, most PWMCI had no suggestions for improvements to their healthcare. However, these results should be interpreted with caution as many of the PWMCI interviewed displayed evidence of impaired recall and/or insight relating to their condition and healthcare. Advocates generally reported more negative impressions of both contact with the PWMCI's GP (most commonly reporting a “dismissive” attitude) and memory services (with common complaints relating to the assessments used in clinics and lengthy waiting times). This group generally had suggestions for improvements to services – particularly regarding information provision, changes in the assessment process, and improvements in communication by services.Conclusions:To our knowledge, this is the first in-depth study of the difficulties experienced by PWMCI and their advocates which includes the context of healthcare provision. The specific needs of these groups, as described here, as well as those of people with dementia, should be considered when designing memory clinics and other related services. [ABSTRACT FROM PUBLISHER]

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. [ABSTRACT FROM AUTHOR]

Patient reports or ratings are essential for measuring the quality of patient care. Measures designed for this purpose tend to focus on the processes and structures of care rather than the outcomes of it. The latter is arguably the most valid indicator of the quality of care patients receive. Typically this information is gathered by probing patient satisfaction with treatment as part of an investigation of satisfaction with hospital care. More recently patient ratings of the outcome of treatment have been obtained to measure treatment efficacy in clinical trials. However, a more direct approach is to ask patients to assess the benefit of treatment on their current health status. We performed a structured literature review on patient reported satisfaction with outcomes of treatment and direct patient assessments of the same. The purpose of this was to identify suitable candidate questions for a short instrument to tap patient evaluations of in-patient hospital interventions. Articles were included if they dealt with patient satisfaction or patient assessment of outcomes of treatment. Articles were excluded if they dealt more generally with patient satisfaction with care. We identified 169 papers, 79 were included in the review. The findings of this review suggest that there are a number of benefits of directly asking patients to assess the outcome of hospital treatment. Importantly this approach reflects outcomes relevant to the patient and is also more likely to reflect patient report in routine clinical practice. There is also evidence that such approaches have face validity and construct validity. The problems associated with this approach (i.e. response bias), are those common to patient reported outcome surveys, but employing appropriate strategies can minimize them. Furthermore, employing a simple set of questions that asks patients to assess outcomes of treatment they receive can be time and resource efficient in comparison to administering lengthy measures. This approach could be tested for potential generic use as an evaluative measure for patients in hospital settings. [ABSTRACT FROM AUTHOR]

Background Long-term conditions have a significant impact on individuals, their families, and the health service. As people with these conditions represent a high proportion of hospital admissions, investigating their experiences of inpatient care has become an important area of investigation. We conducted a secondary analysis of the NHS adult inpatient survey for England to compare the hospital experiences of three groups of patients: those without long-term conditions, those with a single long-term condition, and those with multiple long-term conditions. We were particularly interested in the extent to which these patients received self-management support from hospital staff, so we developed a brief summary tool drawn from salient questions in the survey to aid the comparison. Methods Analysis of data from the 2011 national adult inpatient survey (n = 65,134) to compare the experiences of three groups of patients: those with no limiting long-term conditions (No- LLTC), those with one limiting long-term condition (S-LLTC), and those with two or more limiting long-term conditions (M-LLTC). The main outcome measure was patients' self-reports of their experience of inpatient care, including staff-patient interactions, information provision, involvement in decisions and support for self-care and overall ratings of care. A short form scale, the Oxford Patient Involvement and Experience scale (OxPIE) was developed from the adult inpatient survey and used to compare the groups using logistic regression. Results There were significant differences between the No-LLTC group in comparison to both the SLLTC and M-LLTC groups. Patients with limiting long-term conditions reported significantly worse hospital experiences than those without, as measured by OxPIE: S-LLTC odds ratio = 1.23, 95% CI 1.03-1.48; M-LLTC odds ratio = 1.64, 95% CI 1.19 - 2.26. Responses to a single global rating question were more positive but not strongly correlated with OxPIE. Conclusions Patients with LLTCs were more critical of their inpatient care than those with no LLTCs. Those with more than one long-term condition reported worse experiences than those with a single limiting condition. Simple rating questions may not be sufficiently sensitive to reflect important aspects of patients' experience. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper was to examine if pain and functioning can be distinguished in the Oxford Knee Score (OKS) in a meaningful way. This was done by (1) conducting exploratory factor analysis to explore the factorial structure of the OKS and (2) conducting confirmatory factor analysis to examine whether a two-factor solution is superior to a one-factor solution. Methods: Secondary data analysis of four independent datasets containing OKS scores on 161,973 patients was performed. Four independent datasets contained data on: (1) 156, 788 patients from the NHS HES/PROMS dataset, (2) 2,405 consecutive patients from the South West London Elective Operating Centre, (3) 2,353 patients enrolled in the Knee Arthroplasty Trial and (4) 427 consecutive patients listed for knee replacement surgery at the Nuffield Orthopaedic Centre in Oxford. Results: Factor extraction methods suggested that, depending on the method employed, both one- and two-factor solutions are meaningful. Overall and in each data set some cross-loading occurred and item loadings were consistent across two factors. On confirmatory factor analysis, both one- and two-factor models had acceptable fit indices. This allowed the creation of the ‘OKS pain component’ and the ‘OKS functional component’ subscales. Conclusions: Factor analysis confirmed the original conceptual basis of the OKS but offered an option to perform additional analyses using pain and functional subscales. Further research should focus on providing further evidence on construct validity and responsiveness of the newly derived subscales. [ABSTRACT FROM AUTHOR]

Background: Neurological conditions have a substantial impact on carers, with carer well-being having been shown to be influenced by a number of demographic, patient and caregiving factors. Support given to carers can lead to better coping. This study investigated the relationship between carer well-being and experiences with health and social services. Methods: A cross-sectional survey was conducted of 1910 (37.4%) of carers of 5109 people with motor neuron disease (MND) (n=434, 54.9%), multiple sclerosis (MS) (n=721, 30.7%) and Parkinson's disease (PD) (n=755, 38.2%). Carers completed a generic health status measure (SF-12), a carer strain measure (Carer Strain Index- CSI) and a newly developed questionnaire on health and social care experiences. Data were analysed by analysis of variance with p set at <0.05. Results: Carer well-being was found to be compromised and differed significantly between the three conditions. Furthermore, a considerable number of carers experienced problems with aspects of health and social care, although there was no clear pattern according to the condition that was cared for. The total number of problems reported did not differ significantly between conditions but was significantly (all p<0.001) associated with carer quality of life (both physical and mental health) and strain, even when other influencing factors (demographic and caregiving variables) were corrected for. The association was particularly strong for carer strain, and less strong (but still significant) for quality of life. Conclusions: The results show that carer well-being is compromised, in line with previous studies. Furthermore, the link of carer well-being to the number of problems reported suggests that minimizing problems experienced could improve carer well-being. This stresses the importance of health and social services appropriately supporting carers. [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]

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 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]

Widely accepted quality indicators for headache care would provide a basis not only for assessment of care but also, and more importantly, for its improvement. The objective of the study was to identify and summarize existing information on such indicators: specifically, did indicators exist, how had they been developed, what aspects of headache care did they relate to and how and with what utility were they being used? A systematic review of the medical literature was performed. A total of 32 articles met criteria for inclusion. We identified 55 existing headache quality indicators of which 37 evaluated processes of headache care. Most were relevant only to specific populations of patients and to care delivered in high-resource settings. Indicators had been used to describe overall quality of headache care at a national level, but not systematically applied to the evaluation and improvement of headache services in other settings. Some studies had evaluated the use of existing disability and quality of life instruments, but their findings had not been incorporated into quality indicators. Existing headache care quality indicators are incomplete and inadequate for purpose. They emphasize processes of care rather than structure or outcomes, and are not widely applicable to different levels and locations of headache care. Furthermore, they do not fully incorporate accepted evidence regarding optimal methods of care. There is a clear need for consensus-based indicators that fully reflect patients' and public-health priorities. Ideally, these will be valid across cultures and health-care settings. [ABSTRACT FROM AUTHOR]

Background Anderson-Fabry disease (AFD) is a disorder of glycosphingolipid metabolism resulting from deficiency of a-galactosidase A and accumulation of globotriaosylceramide. Presentation is heterogeneous and, despite guidelines for initiation of therapy, there is no basis for defining subgroups that will progress more rapidly, whether treated or not. The authors of this study used clinical and pathological data recorded on 1483 patients in the Fabry Outcome Survey, a large international registry, to develop a prognostic severity score. Methods Parameters relevant to disease progression or outcome were initially selected, using variables that are readily available in clinical practice. Individual end points for renal, cardiac, neurological disease, and death were selected, and a composite end point developed. Potential prognostic variables were correlated with each end point, before multivariate analysis. Variables retaining significance were then used to construct organ specific and composite prognostic scores. KaplaneMeier (KM) analysis, according to score, was performed for each end point. Results Analysis demonstrated that it is possible to differentiate groups of patients with different outcome probabilities. Cardiac, renal and neurological end points could each be categorised into three separate groups. The 80% event-free survival for these groups differed by approximately 10 years. The overall composite score, the Fabry International Prognostic Index (FIPI), distinguished two distinct groups where the 50% event-free survival differed by 10 years. Conclusions A prognostic scoring system for AFD has been developed and retrospective validation performed. The FIPI should prove to be a valuable tool in the counselling and management of AFD patients, and in comparative analyses of outcome using different therapies. [ABSTRACT FROM AUTHOR]