Is the screening test of the French version of the dementia quality of life questionnaire indispensable?

The aim of this study was to evaluate the usefulness of the screening questions in the French version of the Dementia Quality of Life (DQoL) questionnaire. To assess the psychometric properties of the French DQoL, 155 patients with mild-to-moderate dementia were recruited. Here, we compared the psychometric properties of the instrument between patients who passed the screening test (n = 109) and the whole study population (n = 155). The French DQoL version showed a good test-retest reliability at a 2-week interval (0.95 ≤ intraclass correlation coefficients ≤ 1.0), and an average internal consistency (0.58 ≤ Cronbach's α ≤ 0.87) for the 2 study groups. Significant differences were observed in the 2 groups for 4 dimensions of the DQoL regarding dementia severity (Cornell scale), and for 3 dimensions evaluating depression (MMSE). Convergent validity with the Duke Health Profile revealed many significant correlations between dimensions not only in the 109 patients, but also in the whole study population. Our study demonstrated that patients who failed the screening procedure nonetheless seemed to be able to answer the DQoL questionnaire, the whole study group showing acceptable psychometric properties.

Health status in patients with Alzheimer's disease: an investigation of inter-rater agreement.

OBJECTIVE: The purpose of the present study was to examine the level of agreement between health status ratings provided by patients with Alzheimer's disease and by their proxies. BACKGROUND: Because proxy-completed responses are often necessary in assessing health outcomes for the elderly, it is necessary to determine the feasibility and potential limitations of using proxies as a patient substitutes. METHODS: To assess the potential utility of proxy responses on health status when subjects present a cognitive impairment, this study compared the responses of 70 subjects with Alzheimer's disease and those of their family and/or care provider proxy using the SF-36. Agreement between proxies and patients was measured by intraclass correlation coefficients (ICCs). RESULTS: The proportion of exact agreement between patients and proxies on the 36 items ranged from 3.3 to 41.7%. Results reveal poor to moderate agreement between patient and proxy reports. Proxy reliability varied according to the relationship of the proxy to the index subject. Agreement decreased significantly with increasing severity of dementia and with increasing severity of Physical status (Katz ADL). Agreement was better for measures of functions that are directly observable and relatively poor for more subjective measures. CONCLUSIONS: Our results confirm the importance of the information source used for patient health status.

Health related quality of life in people with hereditary neuromuscular diseases: an investigation of test-retest agreement with comparison between two generic questionnaires, the Nottingham health profile and the short form-36 items.

The present work attempts to define reproducibility, test-retest and internal consistencies of two standardised tools that measure health related quality of life (HRQoL), specifically as they apply to hereditary neuromuscular disease (HNMD): the Nottingham health profile (NHP) and the medical outcome study 36-item short-form questionnaire (MOS SF-36). A cross sectional survey of 108 hereditary neuromuscular disease patients completed the questionnaires consecutively in the course of multidisciplinary consultations in Reims between April 2002 and February 2005. The results of the study confirm the acceptability of using generic questionnaires such as the Nottingham health profile and the SF-36, and show good reliability for these instruments. For both instruments, reproducibility (test-retest) appears excellent for the physical dimensions explored, and satisfactory for the mental dimensions. There is nonetheless a need for health related quality of life measures validated for neuromuscular disease patients. Health related quality-of-life (HRQoL) measures provide information on how patients assess their health and the care provision they are offered.

[Family caregivers and hereditary muscular disorders: association between burden, quality of life and mental health]. / Les aidants familiaux des personnes myopathes: liaisons entre charge de soins, qualité de vie et santé mentale.

OBJECTIVE: The analysis of caregiver difficulties seems important to define the life of the patient. The aim of the study was to evaluate the burden of perceived care, health-related quality of life, and mental health of family caregivers who care for patients with hereditary neuromuscular disease. MATERIALS AND METHOD: Fifty-nine family caregivers were investigated in the course of multidisciplinary consultations in Reims, France, between April 2002 and February 2005. Burden of perceived care, mental functioning and mental health were measured by answers to an burden interview instrument (Zarit Burden Inventory, ZBI), a health-related quality of life questionnaire (the SF-36 and General Health Questionnaire-12 items [GHQ-12]), and an instrument quantifying anxiety and depression (Hospital Anxiety and Depression scale [HAD]). The domain scores of the SF-36 were compared with those of the general population. Non-parametric correlations between scores were calculated. RESULTS: Thirty-five parents, 20 spouses, a sister, a grandmother and two friends cared for patients with hereditary myopathy. The average age of caregivers was 50+/-11 years; 81% were women. Ten percent of the caregivers had above-normal scores on the HAD scale, One-third perceived a significant reduction in health-related quality of life, and more half expressed a moderate or important burden according to their answers on the ZBI. Depression occurred in a great proportion of the caregivers, and they showed reduced health-related quality of life as compared with the general population. CONCLUSION: Taking into account these results, it appears useful to set up a specific support for family caregivers of patients with hereditary myopathy.

Agreement between dementia patient report and proxy reports using the Nottingham Health Profile.

OBJECTIVE: The aim of the study was to examine the agreement between patient reports and their proxy reports (family and care provider proxies) on Health Status in a sample of patients with dementia. METHOD: Ninety-nine patients with mild to moderate dementia and proxies completed the 38-item Nottingham Health Profile (NHP) questionnaire. RESULTS: Completion rates for the different NHP dimensions ranged from 78 to 90% for the dementia subjects. Inter-rater agreement between different proxies and subject was from moderate to good for physical assessment (ICCs from 0.54 to 0.78 for physical mobility scales). Patient/family proxy concordance was moderate to good for five out of six dimensions (physical mobility, social isolation, pain, energy, sleep) and poor for emotional reaction. Family proxies systematically reported lower functioning than did patients in the four subscales assessing: physical mobility (p <0.0001), energy (p <0.005), social isolation (p <0.01) and sleep (p <0.03). Care provider proxies only estimated physical mobility as lower (p <0.0001). CONCLUSION: Age and physical status of the patient significantly affected agreement in patient-care provider proxy ratings. Thus, caution is appropriate when resorting to proxies to estimate the Health Status of a dementia patient.

Use of the EQ-5D among patients suffering from dementia.

BACKGROUND AND OBJECTIVE: This study was designed to determine the acceptability, feasibility, reliability, and validity of the French version of EQ-5D measuring HRQol in subjects with dementia. METHODS: EQ-5D was administered to 142 subjects. The feasibility and acceptability were determined by the refusal rate, the type of administration, and the percentage and distribution of missing data. Test-retest reliability was studied by kappa coefficients and validity by agreement between subjects' and proxies' assessments. RESULTS: The response rate was satisfactory. The instrument discriminated well among the subjects. Test-retest reliability was average. The validity was poor if we consider the agreement between patients' and caregivers' reports, but other criteria of validity produced better results. Subjects' responses on each dimension were related with their global judgment of health in the expected direction. Significant relations were found between the Katz index of ADL and self-rated difficulties only for expected dimensions. Relations with age and with gender were in line with expectations. CONCLUSION: Results led to consider that patients' responses are not entirely devoid of judgment. It seems that dementia patients are capable of expressing their health-related quality of life through a brief instrument as the EQ-5D.

Implicit memory for words presented in short texts is preserved in Alzheimer's disease.

BACKGROUND: The level of efficiency of implicit memory in Alzheimer's disease remains unclear as previous studies using stem completion tasks have led to contradictory results. METHOD: The present study used target words embedded in significant short texts that subjects were required to read aloud (i.e. to enhance semantic processing). Texts were presented in two perceptual situations: 'simple' (blank spaces delimitating words) and complex' (spaces were filled by '8's). In the completion phase, patients had to write the first word that came to mind in order to complete a three-letter stem. The recognition phase explored explicit memory performance. The performance of 24 Alzheimer patients was compared to a matched sample of healthy controls. RESULTS: Reading times differed between groups and were shorter for healthy controls. Recognition was dramatically lower in patients, thus confirming the alteration of explicit memory in this pathology. However, a significant priming effect (e.g. the tendency to complete the stem with the aid of a previously explored word) was present in both groups and did not differ between patients and healthy controls. CONCLUSIONS: The absence of a correlation between priming and recognition scores suggests that this result cannot be explained by an explicit memory bias. Moreover, as the priming level was identical whatever the perceptual aspect of the text, we suggest that the priming effect is not only mediated by perceptual processes but also by lexical and conceptual processes, which to some extent are preserved during the light and moderate stages of this disease.

Evaluation of the quality of life in dementia with a generic quality of life questionnaire: the Duke Health Profile.

OBJECTIVE: The study was designed to determine the acceptability, feasibility and validity of measuring quality of life in a representative sample of dementia patients with a generic instrument, the Duke Health Profile. METHOD: The French version of the Duke Health Profile was administered to 148 subjects with a mental disorder according to the DSM-III-R diagnostic criteria. The feasibility and acceptability of employing the instrument were determined by the refusal rate, the type of administration, and the percentage and distribution of missing data. Reliability was determined with Cronbach's alpha coefficient. Instrument reproducibility was assessed with the intraclass correlation coefficient for test-retest values. Internal construct validity was determined by factor analysis. Discriminant capacity was determined by comparing the average scores on each measure among patients with and without an additional chronic pathology. The measurements obtained were compared by source of information (patient, family proxy and care provider proxy). RESULTS: The feasibility and acceptability of the instrument was good. Only 2% of the patients refused to complete the questionnaire. Help from the interviewer was necessary in 79% of the cases. The average completion time was 10.6 min. Missing data exist in only 3.5% of the cases on average, except among patients with severe dementia (Mini Mental State Examination <10). For reliability, internal consistency was acceptable (Cronbach's coefficient alpha = 0.5--0.7) when the self-esteem (0.23) and social health (0.26) concepts were eliminated. Reproducibility as measured by test-retest scores was moderate to good (intraclass correlation coefficient r = 0.53--0.80), except for anxiety (0.48) and perceived health (0.45). Severity of dementia mainly affected the feasibility, acceptability and reproducibility of the instrument. The family proxy seemed to agree more with the patient than did the care provider proxy. CONCLUSION: Quality of life can be measured in patients with dementia, but special tools need to be developed for severe dementia.

Agreement between patients' and proxies' reports of quality of life in Alzheimer's disease.

Agreement between self reports and proxy reports of health-related quality of life (H RQoL) was examined in a sample of 76 patients with mild to moderate Alzheimer's disease and their proxies. Patients and proxies completed an '17-item Duke health profile'. The items were rephrased for the proxy. The proportion of exact agreement between patients and proxies on the 17 items ranged from 26.3 to 52.6%. Results reveal poor to moderate agreement (intraclass correlation coefficients (ICCs) from 0.00 to 0.61 for 10 subscales) between patients' and proxies' reports. Agreement was higher for measures of function that are directly observable (physical health, disability) and relatively poor for more subjective measures. Proxy reliability varied according to the relationship of the proxy to the index subject. Spouses and nurses agreed more closely with index subjects than did children or nurses' aides. Agreement decreased with increasing severity of dementia. Statistically significant differences in mean scores were noted for several dimensions, with proxies tending to rate the patients as having a lower quality of life than the patients themselves. This study indicates the importance of considering the information source of a patient's HRQoL. However, assessments by proxies should be used with caution.

Measuring general health status in dementia: practical and methodological issues in using the SF-36.

The objective of this study was to examine the measurement properties of the Medical Outcomes Study (MOS) 36-Item Short-Form health survey (SF-36) in a representative sample of dementia patients. A total of 138 subjects with dementia were evaluated with the SF-36. They were recruited from 16 centers, including 7 university hospital centers. Dementia severity, demographic variables, co-morbidity and functional limitations were also measured. The measurements obtained were compared by source of information (patient, family proxy, and care provider proxy). Thirteen patients refused to complete this questionnaire. Help from the interviewer was necessary in 72.8% of the cases. The average completion time was 18.8 minutes. Missing data exist in only 5.6% of the cases on average, except among patients with severe dementia (Mini Mental State Examination <10). With regard to reliability, internal consistency was acceptable to good; Cronbach's a ranged from a low of 0.59 to a high of 0.92 across subscales (median 0.75). Test-retest intraclass correlation coefficients were moderate to good (range 0.51-0.81) except for Role emotional (0.17), Bodily pain (0.49) and Mental health (0.45). For patients with MMSE > or = 15, test-retest coefficients were better (range 0.53-0.90). Intraclass correlation coefficient suggests that proxies are a poor substitute for obtaining a patient's perspective of his/her health status. In conclusion, the SF-36 is unsuitable for severe dementia, because severity of disease mainly affected the feasibility, acceptability, and reproducibility of the instrument. This study, however, confirms that it is possible to question subjects with mild to moderate dementia on their health status.