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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 (PDQ-Carer) 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.

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.

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 (>or=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.

The Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40) is the most widely validated measure of health status for use with patients diagnosed with motor neuron disease/amyotrophic lateral sclerosis (MND/ALS). The questionnaire was designed to be used in studies evaluating treatment regimes where missing data may cause problems with data analyses. The purpose of this paper is to evaluate an algorithm for the imputation of missing dimension scores on the ALSAQ-40. We used a postal survey of patients diagnosed with MND/ALS. One thousand, nine hundred and seventy-nine patients were surveyed and 1093 (55.2%) questionnaires returned. Of these, complete ALSAQ-40 data was available in 854 (85.8%) cases. Data were deleted from this complete dataset, and in a randomly selected subset of 100 cases, and then imputed using the Expectation Maximization (EM) algorithm: results were then compared to the dataset prior to data deletion. Descriptive statistics, mean scores and spread of scores were almost identical between original and imputed datasets. Furthermore, the two datasets were highly correlated (intra-class correlation coefficient = 0.95 or greater), and mean differences were small (+/-1.00). We concluded that EM imputation for the ALSAQ-40 provides data that closely mirrors the original when this has been deliberately removed. Consequently, EM is likely to be appropriate for studies using the ALSAQ-40 that contain missing data points.

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

Objectives: To determine which factors are predictive of physical and mental health one year after a first measurement of health status in amyotrophic lateral sclerosis (ALS) patients., Methods: The Physical Component Summary (PCS) score and the Mental Component Summary (MCS) score of the SF-36 were used as the main outcome measures in patients enrolled in the European ALS Health Profile Study (ALS-HPS). Correlation and stepwise regression procedures were used to determine the relationship between patients' physical and mental health status at follow-up with baseline measures., Results: A total of 1118 patients were recruited into the ALS-HPS, of which 918 (82.11%) returned fully or partially completed baseline and follow-up surveys. PCS scores declined over time. No significant changes were reported for the MCS scores over time for patients with ALS. Baseline scores were found to be significant predictors of patients' health status over time., Conclusions: Overall, patients' physical health status at the time of recruitment was the major predictor of the physical health status at both first and second follow-up time assessments. The same relationship was found between baseline and follow-up mental health status. The study also confirms the appropriateness of the use of the SF-36 in ALS patients.

There has been considerable debate over the importance of the health selection hypothesis for explaining social gradients in health. Although studies have argued that it may not be an important explanation of social gradients in health, previous analyses have not estimated, simultaneously, the relative effect of health on changes in social position and of social position on changes in health (social causation). Cross-lagged longitudinal analyses using structural equation models enable the estimation of the relative size of these pathways which would be useful in determining the relative importance of the health selection hypothesis over the social causation hypothesis. Data from four phases of the Whitehall II study (initially consisting of 10,308 men and women aged 35-55 in the British civil service) were collected over a 10 year period. There was no evidence for an effect of mental (GHQ-30 and SF36) or physical health (SF-36) on changes in employment grade. When financial deprivation was used as a measure of social position, there was a significant effect of mental health on changes in social position among men although this health selection effect was over two and a half times smaller than the effect of social position on changes in health. The results suggest that the development of social gradients in health in the Whitehall II study may not be primarily explained in terms of a health selection effect.

Background: The aim of this study was to gain population norms for the COOP Charts in a large community sample, and to explore the construct validity, and whether the inclusion of the illustrations influences response rates., Methods: A postal survey was carried out using a questionnaire booklet, containing the COOP Charts and a number of other items concerned with lifestyles and illness, sent to 6007 randomly selected subjects over the age of 18 years. Respondents were randomized to receiving the questionnaire booklet with a copy of the COOP Charts including illustrations, or the same booklet but including the COOP items without illustrations. The sample was drawn from the Family Health Services Authority (FHSA) computerized register for Oxfordshire. Outcome measures were scores for the eight dimensions of the COOP Charts., Results: The survey achieved an adjusted response rate of 56.72 per cent. There was no difference in response rate or scores on the eight dimensions of the COOP Charts when broken down by those who received the illustrated Charts or simply the items from the measure without illustrations. Normative data for the COOP Charts are reported, broken down by age, sex, social class and whether respondent reported chronic illness or not., Conclusion: The illustrations included in the original charts do not appear to influence response rates, or responses given to the questions. The evidence suggests that items of the COOP Charts provide a short and comprehensive survey of health status. The normative data provided in this paper may further facilitate their validation and use.

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

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]

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

Health status instruments, which measure the subjective functioning and well-being of respondents, are increasingly being used in international, multi-centre trials of new treatments. If the results of such trials in different countries are to be pooled, it is vitally important for researchers to know how comparable the instruments are across cultures. In this study, we evaluated the response rate, data quality, score reliability and scaling assumptions of the 30-item Endometriosis Health Profile (EHP-30) in the USA. Data were obtained from a multi-centre study which recruited 225 patients from 43 clinic sites in the United States of America. It was a randomised, evaluator-blinded, Phase III study. In the evaluation of the EHP-30 reported here, the two groups (Depot Medroxyprogesterone Acetate [DMPA] and Leuprolide Acetate [LA]) are combined, and analyses are based on the data gained at baseline. Questionnaires were self-completed by patients when they visited the clinics. Data completeness was very high, with 97.33% of respondents completing all of the items on the EHP-30. Furthermore, there were no more than a maximum of two missing responses for any given item. No floor and ceiling effects were found for any of the dimensions of the questionnaire. Internal consistency reliability was high for all dimensions (alpha ranged from 0.84 to 0.91). The psychometric properties of the instrument, outlined in the development of the UK version, are supported in the American context. The data presented here suggest that the EHP-30 is a valid and reliable measure that can be appropriately and meaningfully used in studies that include respondents from the USA. [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]

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

Background. Subjective accounts of health status are increasingly utilized in social surveys and medical research to assess functioning and well-being. Despite the fact that substantial research evidence suggests that self-rated health is meaningful and provides valid and reliable data, some authors have raised concerns that different social groups may interpret the notion of health in different ways, and hence complete health measures in systematically different ways. This study evaluates the validity of using self-rated health status to measure health status in different ethnic groups. Methods. Logistic regression models were used to examine the association of selfrated health with more objective measures of morbidity in different ethnic groups. Sample. Two sources of data were used-the Health Survey for England (HSE) 1991-96 combined file and the Fourth National Survey of Ethnic Minorities (Ethmins4). Measures of health. Hypertension, presence of cardiovascular disease or diabetes, limiting health and number of visits to a doctor. Self-rated health was measured on 5-point scale ranging from excellent to very poor. Results. Poorer self-rated health was associated with greater morbidity within each ethnic group. Furthermore, there was little evidence that the association of self-rated health with more objective measures of morbidity differed between ethnic groups. Conclusion. The evidence reported here suggests that the use of a single item measure of self-rated health to measure health status in different ethnic groups is valid. Further research might usefully explore the validity of using more comprehensive profile measures of health status in different ethnic groups. [ABSTRACT FROM AUTHOR]

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]

Abstract: Background: The impact of Parkinson''s disease (PD) on the quality of life of both patients and their carers has not been well documented. Objective: This study describes the health status of both PD patients and caregivers as measured on a generic measure of health status (SF-12), and then explores to what extent patient self-reported health, as measured on the disease-specific Parkinson''s Disease Questionnaire (PDQ-39), is associated with carer strain and self-reported quality of life. Methods: A postal survey was carried out of both patients and caregivers through local branches of Parkinson''s UK. Questionnaire packs were sent to those on the database with a diagnosis of PD. The patient was asked to give the carer questionnaire to their main caregiver, if they had one. Results: Results from the SF-12 suggests that PD has substantial adverse effects on both the physical and mental well-being of patients when compared with population norms. While carer physical health was not found to be substantially different from that of the general population, emotional health was lower than that of the general population. Furthermore, results suggest that the self-reported health status of PD patients is associated with higher levels of caregiver strain and poorer emotional health. Conclusion: PD impacts on both the well being of both patients and caregivers; the data provide evidence that the health status of the patient, in particular their physical health, has a significant impact on the well-being of their caregiver. [Copyright &y& Elsevier]

We examined whether there are advantages in terms of outcome assessment of using Rasch methods of scoring the 12-item Oxford Hip Score questionnaire over conventionally summed scores. Data were collected on patients receiving total hip replacement surgery. Three patient groups were created according to surgery type: primary, revision, and re-revision; two groups were created according to satisfaction with surgery: very satisfied and dissatisfied. Analyses were performed to test the relative precision (RP) of Rasch scoring versus conventionally summed scores in discriminating the groups experiencing different types of surgery and level of satisfaction. At the 1-year follow-up, RP ratios favored the Rasch scoring method in both tests of discrimination. Considerable gains in precision were achieved with Rasch scoring methods when groups were compared in a cross-sectional way. Alternative approaches to scoring questionnaires should be investigated to better assess comparisons over time. [Copyright &y& Elsevier]