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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: 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]

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]

Background: The purpose of this study was to determine the extent to which summary index scores from the short form Parkinson's Disease Questionnaire (PDQ-8) replicate those from the parent form (PDQ-39) in a longitudinal study.Methods: Longitudinal data gained from the PD-MED trial were examined (n = 1867), to determine the extent the PDQ-8 replicates results from the PDQ-39 at baseline and follow up. The sensitivity to change of the PDQ-8 was also compared with that of the PDQ-39. Finally, results on the two measures were compared with those from the Hoehn and Yahr (HY) clinical staging scale.Results: Results of the Single Index summary score gained from the PDQ-8 were found to closely replicate those gained from the PDQ-39 at each of the three time points. Furthermore at each time point the intraclass correlation coefficient between the two measures was very high (ICC range 0.93-0.96). Similarly, the two measures gave very similar accounts of change (e.g. from baseline to follow up at one year effect sizes were 0.18 for the single index calculated using the PDQ-39, and 0.09 when calculated using the PDQ-8). Similar levels of correlation were found between the two indices when correlated with the HY scale.Conclusions: The PDQ-8 closely replicates results gained from the PDQ-39 when calculating single indices. In instances where a single summary score of the impact of PD on self-reported quality of life is needed, it is likely the PDQ-8 will provide reliable and accurate information. [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]

Background: the Parkinson's Disease Questionnaire (PDQ-39) is the most widely used Parkinson's specific measure of health status. It is increasingly used in treatment trials, sometimes as a primary end-point, where any missing data can potentially cause difficulties in analyses. Objectives: the purpose of this article is to evaluate the Expectation Maximisation (EM) algorithm for the imputation of missing dimension scores on the 39-item PDQ-39. Methods: a postal survey of patients diagnosed with Parkinson's disease (PD). A total of 1,372 patients were surveyed and 839 (61.15%) questionnaires returned completed or partially completed. Of these, complete PDQ data were available in 715 (85.22%) cases. Data were deleted from this complete dataset and a sub-set of 200 respondents from this dataset and then imputed using the EM algorithm; results were then compared to the dataset before data deletion. Results: results gained from imputation of data closely mirrored that of the complete dataset in each case. Descriptive statistics, mean scores and spread of scores were almost identical between original and imputed datasets. Furthermore, original and imputed datasets were highly correlated [intra-class correlation coefficient (ICC) = 0.93 or greater], and mean differences were small (+1.00). Conclusions: the results suggest that the use of EM for the PDQ-39 provides data that closely mirrors the original when this has been deliberately removed. Consequently, EM is likely to be appropriate for trials using the PDQ that contains missing data points. [ABSTRACT FROM AUTHOR]

Background: The SF-36 has been used in a number of previous studies that have investigated the health status of childhood cancer survivors, but it never has been evaluated regarding data quality, scaling assumptions, and reliability in this population. As health status among childhood cancer survivors is being increasingly investigated, it is important that the measurement instruments are reliable, validated and appropriate for use in this population. The aim of this paper was to determine whether the SF-36 questionnaire is a valid and reliable instrument in assessing self-perceived health status of adult survivors of childhood cancer. Methods: We examined the SF-36 to see how it performed with respect to (1) data completeness, (2) distribution of the scale scores, (3) item-internal consistency, (4) item-discriminant validity, (5) internal consistency, and (6) scaling assumptions. For this investigation we used SF-36 data from a population-based study of 10,189 adult survivors of childhood cancer. Results: Overall, missing values ranged per item from 0.5 to 2.9 percent. Ceiling effects were found to be highest in the role limitation-physical (76.7%) and role limitation-emotional (76.5%) scales. All correlations between items and their hypothesised scales exceeded the suggested standard of 0.40 for satisfactory item-consistency. Across all scales, the Cronbach's alpha coefficient of reliability was found to be higher than the suggested value of 0.70. Consistent across all cancer groups, the physical health related scale scores correlated strongly with the Physical Component Summary (PCS) scale scores and weakly with the Mental Component Summary (MCS) scale scores. Also, the mental health and role limitation-emotional scales correlated strongly with the MCS scale score and weakly with the PCS scale score. Moderate to strong correlations with both summary scores were found for the general health perception, energy/vitality, and social functioning scales. Conclusion: The findings presented in this paper provide support for the validity and reliability of the SF-36 when used in long-term survivors of childhood cancer. These findings should encourage other researchers and health care practitioners to use the SF-36 when assessing health status in this population, although it should be recognised that ceiling effects can occur. [ABSTRACT FROM AUTHOR]

This paper uses the standard error of measurement (SEM) and the standard error of the difference (S(diff)) in relation to data on individuals with amyotrophic lateral sclerosis (ALS) to calculate the minimum change scores required by statistical criteria for each dimension of the Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40). Data collected from a longitudinal study was used to evaluate the usefulness of SEM and S(diff) criteria and to compare these criteria with an anchor-based approach in determining meaningful change. Questionnaires were completed on two occasions, 3 months apart. 764 questionnaires were returned. Questionnaires included the ALSAQ-40 and dimension specific transition items. The ALSAQ-40 is a disease specific health-related quality of life instrument for use in studies of patients with ALS or other motor neuron diseases. For all dimensions of the ALSAQ-40 the patterns of SEMs were similar over time. The results suggest that, for example, six points change on a 0-100 transformed scoring of the physical mobility dimension may be considered on distributional grounds a minimum meaningful change. The demonstrated consistency of SEMs for the dimensions of the ALSAQ-40 is empirical evidence of the theoretically claimed advantage of this measure of sample independence, and supports use of this distributional approach to calculate meaningful change. [ABSTRACT FROM AUTHOR]

Background The purpose of this study was to compare the performance of the 15‐item Picker Patient Experience questionnaire (PPE‐15) when embedded in a short form instrument as compared with a longer form measure. [ABSTRACT FROM PUBLISHER]

Background: Quality of life is the subject of growing interest and investigation.Aims: To develop and validate a short, self-report quality of life questionnaire (the Schizophrenia Quality of Life Scale, SQLS).Method: People with schizophrenia in Liverpool were recruited via the NHS. Items, generated from in-depth interviews, were developed into an 80-item self-report questionnaire. Data were factor analysed, and a shorter form measure was tested for reliability and validity. This measure was administered together with other self-report measures--SF-36, GHQ-12 and HADS--to assess validity.Results: Data were analysed to produce a final 30-item questionnaire, comprising three scales ('psychosocial', 'motivation and energy', and 'symptoms and side-effects') addressing different SQLS dimensions. Internal consistency reliability of the scale was found to be satisfactory. There was a high level of association with relevant SF-36, GHQ-12 and HADS scores.Conclusions: The SQLS was completed within 5-10 minutes. It possesses internal reliability and construct validity, and promises to be a useful tool for the evaluation of new treatment regimes for people with schizophrenia. [ABSTRACT FROM AUTHOR]

OBJECTIVES: The purpose of the study was to assess the validity and reliability of a new disease specific measure of health-related quality of life for ALS/MND: the 40-item ALS Assessment Questionnaire (ALSAQ-40). DESIGN: We carried out a longitudinal postal survey. The two administrations of the questionnaire were separated by 3 months SAMPLE: Subjects were patients diagnosed with ALS/MND and registered with the UK MND Association. RESULTS: Dimensions of the ALSAQ-40 were shown to have high levels of internal reliability. The ALSAQ-40 was found to be sensitive to changes in self reported overall health state. CONCLUSION: We concluded that the ALSAQ-40 has high levels of reliability and validity and can be used as an outcome measure in studies evaluating new treatment regimes and therapies. (Amyot Lat Scler 1999; 1:33–40). [ABSTRACT FROM AUTHOR]

Background Population norms for the attributes included in measurement scales are required to provide a standard with which scores from other study populations can be compared. This study aimed to obtain population norms for the Short Form 36 (SF-36) Health Survey Questionnaire, derived from a random sample of the population in Britain who were interviewed at home, and to make comparisons with other commonly used norms. [ABSTRACT FROM PUBLISHER]

This paper is a report of the results gained from the administration of a health status questionnaire, the Nottingham Health Profile (NHP), on a sample of migraine sufferers. It is argued that chronic migraine suffering is an illness that has implications for perceived health status, and that the NHP is sufficiently sensitive to detect this. The results suggest that scores on the domains of Energy, Sleep and Social Relationships are associated with respondents' mood state as measured on an established psychiatric screening device, the General Health Questionnaire (GHQ-30). It is argued that the NHP has important uses as a survey measure of perceived ill-health in populations, and as an indicator of psychiatric morbidity. [ABSTRACT FROM AUTHOR]

Background: Comparisons between neurological conditions have the potential to inform service providers by identifying particular areas of difficulty experienced by affected individuals. This study aimed to identify predictors of activity and participation in people with motor neurone disease (MND), people with multiple sclerosis (MS) and people with Parkinson's Disease (PD).Methods: The Oxford Participation and Activities Questionnaire (Ox-PAQ) and Medical Outcomes Study 36-Item Short Form Survey (MOS SF-36) were administered by postal survey to 386 people with a confirmed diagnosis of MND, MS or PD. Data analyses focused on stepwise regression analyses in order to identify predictors of activity and participation in the three conditions assessed.Results: Three hundred and thirty four participants completed the survey, a response rate of 86.5%. Regression analyses identified multiple predictors of activity and participation dependent on Ox-PAQ domain and disease group, the most prominent being social and physical functioning as measured by the MOS SF-36.Conclusions: Results indicate that the physical and social consequences of neurological illness are of greatest relevance to people experiencing the conditions assessed. Whilst the largely inevitable physical implications of disease take hold, emphasis should be placed on the avoidance of social withdrawal and isolation, and the maintenance of social engagement should become a significant priority. [ABSTRACT FROM AUTHOR]

Two letters to the editor are presented in response to the article "Validity, Reliability and Responsiveness of a Self-Reported Foot and Ankle Score" by M. Cöster et al.

A letter to the editor and a reply are presented in response to the article "Properties of the Picker Patient Experience questionnaire in a randomized controlled trial of long versus short form survey instruments" by Crispin Jenkinson and colleagues in the 2003 issue is presented.

Objective: Health-related websites have developed to be much more than information sites: they are used to exchange experiences and find support as well as information and advice. This paper documents the development of a tool to compare the potential consequences and experiences a person may encounter when using health-related websites.Methods: Questionnaire items were developed following a review of relevant literature and qualitative secondary analysis of interviews relating to experiences of health. Item reduction steps were performed on pilot survey data (n=167). Tests of validity and reliability were subsequently performed (n=170) to determine the psychometric properties of the questionnaire.Results: Two independent item pools entered psychometric testing: (1) Items relating to general views of using the internet in relation to health and, (2) Items relating to the consequences of using a specific health-related website. Identified sub-scales were found to have high construct validity, internal consistency and test-retest reliability.Conclusion: Analyses confirmed good psychometric properties in the eHIQ-Part 1 (11 items) and the eHIQ-Part 2 (26 items).Practice Implications: This tool will facilitate the measurement of the potential consequences of using websites containing different types of material (scientific facts and figures, blogs, experiences, images) across a range of health conditions. [ABSTRACT FROM AUTHOR]

Abstract: The psychometric properties of the Dutch version of the Parkinson''s disease questionnaire 39 (PDQ39-DV) were tested in 177 patients with Parkinson''s disease (PD). Internal consistency of 7 of the 8 scales was adequate (⩾0.70), but was insufficient for ‘bodily discomfort’ (0.59). Correlation between the PDQ39 and other instruments in this study, the SCOPA-psychosocial questionnaire, Euroqol-5D, hospital anxiety and depression scale, and a visual analogue scale for quality of life, were 0.82, 0.74, 0.63 and −0.54, respectively. The factor analysis yielded 8 factors, which accounted for 65% of the variance and revealed only small differences with the original UK version. We conclude that the PDQ39-DV displays satisfactory psychometric properties and is an appropriate instrument to assess quality of life in Dutch patients with PD. [Copyright &y& Elsevier]

Objective: To generate and validate symptom-based models to predict endometriosis among symptomatic women prior to undergoing their first laparoscopy. Design: Prospective, observational, two-phase study, in which women completed a 25-item questionnaire prior to surgery. Setting: Nineteen hospitals in 13 countries. Patient(s): Symptomatic women (n = 1,396) scheduled for laparoscopy without a previous surgical diagnosis of endometriosis. Intervention(s): None. Main Outcome Measure(s): Sensitivity and specificity of endometriosis diagnosis predicted by symptoms and patient characteristics from optimal models developed using multiple logistic regression analyses in one data set (phase I), and independently validated in a second data set (phase II) by receiver operating characteristic (ROC) curve analysis. Result(s): Three hundred sixty (46.7%) women in phase I and 364 (58.2%) in phase II were diagnosed with endometriosis at laparoscopy. Menstrual dyschezia (pain on opening bowels) and a history of benign ovarian cysts most strongly predicted both any and stage III and IV endometriosis in both phases. Prediction of any-stage endometriosis, although improved by ultrasound scan evidence of cyst/nodules, was relatively poor (area under the curve [AUC] = 68.3). Stage III and IV disease was predicted with good accuracy (AUC = 84.9, sensitivity of 82.3% and specificity 75.8% at an optimal cut-off of 0.24). Conclusion(s): Our symptom-based models predict any-stage endometriosis relatively poorly and stage III and IV disease with good accuracy. Predictive tools based on such models could help to prioritize women for surgical investigation in clinical practice and thus contribute to reducing time to diagnosis. We invite other researchers to validate the key models in additional populations. [Copyright &y& Elsevier]