Caregiver burden and quality of life two years after attendance at a memory clinic.

We aimed to describe 1) the burden and HRQL of informal caregivers of new patients attending a memory assessment service (MAS), 2) changes in these outcomes over two years and 3) satisfaction with services. Informal caregivers of patients attending one of 73 MASs throughout England completed questionnaires at the patient's first appointment, and 6 and 12 months later. Participants from 30 of these MASs were also followed up at 24 months. Questionnaires covered caregivers' sociodemographic characteristics, Zarit Burden Interview, EQ-5D-3L and satisfaction with services. We used multivariable linear regression to assess relationships between burden, HRQL and caregiver and patient characteristics. Of 1020 caregivers at baseline, 569 were followed up at 6 months, 452 at 12 months and 187 at 24 months. There was a small increase in caregiver burden over two years (effect size 0.30 SD). These changes were not associated with most caregiver or patient characteristics, except socioeconomic deprivation which was associated with larger increases in burden at two years. Caregivers' HRQL was weakly associated with burden and showed a small reduction over time (0.2 SD). Most caregivers were satisfied with services but caregivers who were not satisfied with the services they received reported greater increases in burden. Increases in caregiver burden and reductions in HRQL appear to be small over the first two years after attending a MAS. However, the longer-term impact on caregivers and those they care for needs investigating, as do strategies to reduce their burden

DEMQOL and DEMQOL-Proxy: a Rasch analysis among those diagnosed with dementia.

BACKGROUND: In previous work we concluded that DEMQOL and DEMQOL-Proxy can provide robust measurement of HRQL in dementia when scores are derived from analysis using the Rasch model. As the study sample included people with mild cognitive impairment, we undertook a replication study in the subsample with a diagnosis of dementia (PWD). PWD constitute the population for whom DEMQOL and DEMQOL-Proxy were originally developed. METHODS: We conducted a Rasch model analysis using the RUMM2030 software to re-evaluate DEMQOL (441 PWD) and DEMQOL-Proxy (342 family carers). We evaluated scale to sample targeting, ordering of item thresholds, item fit to the model, and differential item functioning (sex, age, severity, relationship), local independence, unidimensionality and reliability. RESULTS: For both DEMQOL and DEMQOL-Proxy, results were highly similar to the results in the original sample. We found the same problems with content and response options. CONCLUSIONS: DEMQOL and DEMQOL-Proxy can provide robust measurement of HRQL in people with a diagnosis of dementia when scores are derived from analysis using the Rasch model. As in the wider sample, the problems identified with content and response options require qualitative investigation in order to improve the scoring of DEMQOL and DEMQOL-Proxy

DEMQOL and DEMQOL-Proxy: a Rasch analysis.

BACKGROUND: DEMQOL and DEMQOL-Proxy are widely used patient reported outcome measures (PROMs) of health related quality of life in people with dementia (PWD). Growing interest in routine use of PROMs in health care calls for more robust instruments that are potentially fit for reliable and valid comparisons at the micro-level (patients) and meso-level (clinics, hospitals, care homes). METHODS: We used modern psychometric methods (based on the Rasch model) to re-evaluate DEMQOL (1428 PWDs) and DEMQOL-Proxy (1022 carers) to ensure they are fit for purpose. We evaluated scale to sample targeting, ordering of item thresholds, item fit to the model, and differential item functioning (sex, age, relationship), local independence, unidimensionality and reliability on the full set of items and a smaller item set. RESULTS: For both DEMQOL and DEMQOL-Proxy the smaller item set performed better than the original item set. We developed revised scores using the items from the smaller set. CONCLUSIONS: We have improved the scoring of DEMQOL and DEMQOL-Proxy using the Rasch measurement model. Future work should focus on the problems identified with content and response options

A novel method of proxy reporting questionnaire based measures of health-related quality of life of people with dementia in residential care: a psychometric evaluation.

BACKGROUND: In research in residential care, health-related quality of life (HRQL) is usually measured using either observational methods or standardized questionnaires. DEMQOL-Proxy is a standardized questionnaire measuring HRQL of people with dementia and is usually reported by a family carer. However, not all residents have a family carer who visits often enough to act as a proxy. OBJECTIVES: We evaluated the psychometric performance of DEMQOL-Proxy when reported on behalf of people with dementia in residential care by a "trained proxy" (DEMQOL-Proxy-TP). PARTICIPANTS: We recruited a sample of 87 people with dementia living in care homes around the UK. METHODS: We used modern psychometric methods (based on the Rasch model) to evaluate DEMQOL-Proxy-TP (on behalf of 85 residents) in a cross-sectional study. We evaluated scale-to-sample targeting, ordering of item thresholds, item fit to the model and differential item functioning (sex, age, type of dementia), local independence, unidimensionality and reliability on the full set of items (31 items) and also a smaller item set (26 items). RESULTS: The smaller item set (DEMQOL-Proxy-TP-26) performed better than the original item set and was found to fit the model (p = 0.68). Nevertheless, 17 items were found to have disordered thresholds, and 24 pairs of items showed local dependency (residual correlations >0.3). There were also some areas where scale-to-sample targeting could be improved. CONCLUSION: After resolving the identified anomalies, DEMQOL-Proxy-TP can provide adequate measurement of HRQL of people with dementia living in residential care, particularly when no family carer is available. This can be interpreted at the group level but is not yet robust enough for use at the individual level. Future work will compare these results with the psychometric performance of DEMQOL-Proxy reported by family carers and DEMQOL self-reported by the residents

Caregiver burden and quality of life two years after attendance at a memory clinic.

OBJECTIVES: We aimed to describe 1) the burden and HRQL of informal caregivers of new patients attending a memory assessment service (MAS), 2) changes in these outcomes over two years and 3) satisfaction with services. METHODS: Informal caregivers of patients attending one of 73 MASs throughout England completed questionnaires at the patient's first appointment, and 6 and 12 months later. Participants from 30 of these MASs were also followed up at 24 months. Questionnaires covered caregivers' sociodemographic characteristics, Zarit Burden Interview, EQ-5D-3L and satisfaction with services. We used multivariable linear regression to assess relationships between burden, HRQL and caregiver and patient characteristics. RESULTS: Of 1020 caregivers at baseline, 569 were followed up at 6 months, 452 at 12 months and 187 at 24 months. There was a small increase in caregiver burden over two years (effect size 0.30 SD). These changes were not associated with most caregiver or patient characteristics, except socioeconomic deprivation which was associated with larger increases in burden at two years. Caregivers' HRQL was weakly associated with burden and showed a small reduction over time (0.2 SD). Most caregivers were satisfied with services but caregivers who were not satisfied with the services they received reported greater increases in burden. CONCLUSIONS: Increases in caregiver burden and reductions in HRQL appear to be small over the first two years after attending a MAS. However, the longer-term impact on caregivers and those they care for needs investigating, as do strategies to reduce their burden

Sociodemographic Characteristics, Cognitive Function, and Health-related Quality of Life of Patients Referred to Memory Assessment Services in England.

National policy in England is to encourage referral of people with suspected dementia to Memory Assessment Services (MAS). However, little is known about the characteristics of new referrals, which limits our capacity to evaluate these services. The objectives were to: describe the characteristics (age, sex, ethnicity, socioeconomic deprivation, and comorbidity) of referred patients, and examine the relationships between these characteristics and cognitive function (tertiles of Mini-Mental State Examination score) and health-related quality of life (HRQL) (DEMQOL, DEMQOL-Proxy). We used multivariable regression methods to analyze data from 1420 patients from 73 MAS, and their lay carers (n=1020). The mean age of patients was 78 years; 42% had cognitive function equivalent to Mini-Mental State Examination <24. Characteristics associated with lower function were: older age, being female, deprivation, and nonwhite ethnicity. Deprivation and nonwhite ethnicity were also associated with lower self-reported HRQL, as was having multiple comorbidities; older age was associated with better self-reported HRQL. Lower proxy-reported HRQL was associated with being female, deprivation and comorbidities, but not age and ethnicity. A large proportion of study participants had moderate or high cognitive function scores, suggesting that these patients were referred early to MAS. Research is needed to identify why apparent sociodemographic inequalities in use of MAS exist

Assessing young adolescents' personality with the five-factor personality inventory.

The Five-Factor Personality Inventory (FFPI) assesses a person's position on the (Dutch) psycholexically based Big Five factors: Extraversion, Agreeableness, Conscientiousness, Emotional Stability, and Autonomy. FFPI factor scores are reliable and valid if ratings are made by adults. The present study yields preliminary evidence of whether young adolescents provide reliable and valid self-ratings on this instrument or whether this depends on their cognitive ability level. The sample consisted of a large and representative cohort of youngsters with a mean age of 13 years. The adult structure of the FFPI was generally well replicated, across all ability levels represented in the study. The findings further suggest that young adolescents' factor scores are construct-valid and sufficiently reliable to be used in (group) research settings. However, for reports on individual profiles and decision making, an adolescent's cognitive ability level would need to be rather high. Even then, measuring Autonomy seems challenging

Does homework behavior mediate the relation between personality and academic performance?

Past research has consistently shown that there is a relation between personality and academic performance, but much less work has focused on explaining this relation. The present study examined whether three aspects of homework behavior, namely homework time, procrastination, and learning strategies, mediate the relation between personality and academic performance, controlling for cognitive ability, track level, gender, and ethnicity. We investigated this in a nationally representative sample of about 9000 secondary school students in The Netherlands (average age 13 years). Results indicated that all personality traits were related to homework behavior, and that both personality and homework behavior were related to end-of-year grades in math and Dutch language. Nevertheless, homework behavior only partially mediated the relation between personality and grades. (C) 2010 Elsevier Inc. All rights reserved

Personality as a moderator of context effects on academic achievement.

We investigated whether personality moderates group influence of classmates on academic achievement and whether these so-called context effects can be attributed to peer pressure. The sample consisted of 2498 students in their first year of Dutch secondary education. The data were analyzed by a two-level (students within classes) analysis, separately for boys (n=1033, in 92 classes) and girls (n=1465, in 119 classes). For both sexes, we found a context effect on Dutch language achievement but not on mathematics achievement. Emotional Stability appeared a moderator of this context effect but for girls only. The results suggest further that peer pressure is not a likely mechanism of group influence of classmates on academic achievement

Assessing inpatients' satisfaction with hospital care: should we prefer evaluation or satisfaction ratings?

Inpatients' satisfaction with hospital care is often assessed by questionnaire. From a psychometrical standpoint, this method has drawbacks, however. We further investigated which item response format would maximise desirable outcomes regarding characteristics of the sample obtained (response rate and representativeness) and psychometric properties of the instrument (e.g. missing items responses, variance, validity) as an initial study into this question was indecisive. Subjects were 1184 discharged inpatients, of which 728 patients (62%) responded. They filled out a 55-item satisfaction questionnaire, addressing 12 aspects of care, using either a 10-point Evaluation scale ranging from "very poor" to "excellent" (E10) or a 5-point Satisfaction scale ranging from "dissatisfied" to "very satisfied" (S5). Both E10 and S5 showed good psychometric properties, but S5 yielded a better score distribution. Other results also favoured S5, but differences were small. In conclusion, different response formats do not yield widely different results. Thus, in choosing between them, convenience could be a decisive factor