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

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]

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]

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]

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 The evidence base for forensic mental health (FMH) services has been developing since the late 1990s. Are outcome measures sound enough for the evaluation tasks? Aims To identify, from published literature, outcome measures used in FMH research and, where feasible, assess their quality. Method A structured review was undertaken of trials and intervention studies published between 1990 and 2006. Details of outcome variables and measures were abstracted. Evidence regarding most frequently occurring outcome measures was assessed. Results Four hundred and fifty different instruments were used to assess outcomes, incorporating 1038 distinct variables. Very little evidence could be found to support the measurement properties of commonly used instruments. Conclusions and implications for practice There is little consistency in the use of outcome measure in FMH research. Effort is required to reach consensus on validated outcome measures in this field in order to better inform practice. Copyright © 2009 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

The purpose of this study was to investigate the effect of childhood cancer and its treatment on self-reported health-status in 10,189 adult survivors of childhood cancer in Britain. Age- and sex-adjusted scores on the SF-36 Mental and Physical Component Summary scales (MCS, PCS, respectively) were compared between survivors and UK norms, and between subgroups of survivors, by multiple regression. Survivors had comparable scores to UK-norms on the MCS scale (difference (D) = −0.1, 99% CI: −0.5, 0.3). The difference in scores between survivors and UK-norms on the PCS scale varied by age (p [ABSTRACT FROM AUTHOR]

To develop a questionnaire to assess patients’ views of clinical trials, and to report the results from the questionnaire in two patient groups: asthma and cancer. A 43 item questionnaire asking patients about their views to clinical trials was developed on the basis of interviews with trialists and focus groups with patients. The questionnaire was mailed to patients with a diagnosis of either asthma or cancer. A set of items was then selected, via statistical analyses, to form the core of the questionnaire. Patients with a diagnosis of cancer in one NHS Hospital Trust, and patients with a diagnosis of asthma in two NHS Hospital Trusts. Completed questionnaires were received from 353 cancer patients and 578 asthma patients. Factor analyses of the data indicated that 22 items contributed to five dimensions: ‘positive beliefs’, ‘safety’, ‘information needs’, ‘negative expectations’ and ‘patient involvement’. Differences between asthma and cancer patients on these dimensions were small. A regression of these dimension scores against a variable asking if patients would be willing to take part in trials found that ‘safety’ and ‘information needs’ did not contribute significantly to the model for either asthma or cancer patients. A questionnaire has been developed for use in assessing patients’ views towards clinical trials. Results from the surveys reported here suggest that patient views about the importance of trials and beliefs about the value of patient involvement are likely to be predictive of whether or not patients will agree to take part in a study. [ABSTRACT FROM AUTHOR]

The aim of this prospective cohort study was to evaluate the impact of gastrostomy tube feeding on the quality of life of carers of children with cerebral palsy (CP). Short-Form 36 version II was used to measure quality of life in carers of 57 Caucasian children with CP (28 females, 29 males; median age 4y 4mo, range 5mo to 17y 3mo) six and 12 months after insertion of a gastrostomy tube. Responses were calibrated against a normative dataset (Oxford Healthy Life Survey III). Six months after gastrostomy feeding was started, a substantial rise in mean domain scores for mental health, role limitations due to emotional problems, physical functioning, social functioning, and energy/vitality were observed. At 12 months after gastrostomy placement, carers reported significant improvements in social functioning, mental health, energy/vitality (mean increase >9.8 points;p<0.03), and in general health perception (mean increase 6.35 points;p=0.045) compared with results at baseline. Moreover, the values obtained for these domains at 12 months were not significantly different from the normal reference standard. Carers reported a significant reduction in feeding times, increased ease of drug administration, and reduced concern about their child's nutritional status. This study has demonstrated a significant, measurable improvement in the quality of life of carers after insertion of a gastrostomy feeding tube. [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]

The article comments on the outcomes of research in the field of laparoscopic live-donor nephrectomy (LLDN). It says that the Short Form-36 (SF-36), which is used in the medical research, has not been formally assessed in laparoscopic urology and has shown 'little sensitivity to change' in previous surgical studies.