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.

Caregiver burden and quality of life 2 years after attendance at a memory clinic.

OBJECTIVES: We aimed to describe (1) the burden and health-related quality of life (HRQL) of informal caregivers of new patients attending a memory assessment service (MAS), (2) changes in these outcomes over 2 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 2 years (effect size 0.30 SD). These changes were not associated with most caregiver or patient characteristics, except socio-economic deprivation, which was associated with larger increases in burden at 2 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 2 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.

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.

Memory assessment services and health-related quality of life: 1-year follow-up.

OBJECTIVES: Our group has already demonstrated that patients' health-related quality of life (HRQL) improves in the first 6 months after their first appointment at memory assessment services (MASs), but the sustainability of such gains is unknown. We aimed to describe changes in patients' HRQL at 12 months after their first MAS appointment and to examine associations with patient and MAS characteristics. METHODS: We collected data from 702 patients and 452 lay caregivers at the first appointment and 12 months later. Multivariable linear regression was used to examine the relationships of change in HRQL (self-reported and proxy-reported) with patients' characteristics and use of post-diagnostic interventions, and multilevel models were used to analyse the relationships of HRQL with MAS characteristics. RESULTS: In the whole group, self-reported HRQL improved over 12 months (+3.5 points, 95% CI 2.7 to 4.2). Among people diagnosed with dementia, improvement in HRQL was more than double that among those with mild cognitive impairment or no diagnosis. Proxy-reported HRQL improved only in those diagnosed with dementia (+1.2 points, 95% CI 0.2 to 2.2). Changes in HRQL were not associated with any patient characteristics. The only feature of MASs associated with larger improvements in HRQL was the presence of advisory and support staff. CONCLUSIONS: Improvements in HRQL observed at 6 months are maintained up to 1 year after the first MAS appointment, more so among those who receive a diagnosis of dementia. Continued follow-up will determine if the improvement is even longer lasting.

Is the effectiveness of memory assessment services associated with their structural and process characteristics?

OBJECTIVES: The aim of this study was to investigate whether structural and process characteristics of memory assessment services (MASs) are associated with outcomes (changes in patients' health-related quality of life (HRQL), carers' HRQL and carers' burden) over the first 6 months following the first appointment. METHODS: Data from 785 patients referred to 69 MASs and 511 of their lay carers, collected at the first appointment and 6 months later. Data on MAS characteristics were collected using a questionnaire at baseline. We used multilevel linear regression models to explore the associations of patients' HRQL and carers' outcomes with structural and process characteristics of MASs. Analyses were conducted on the full sample of patients and carers, and separately on those patients diagnosed with dementia. RESULTS: None of the structural (skill mix, workload, volume, provision of clinical assessments and provision of psychosocial support) or process (waiting time, length and number of appointments, anti-dementia drug use and psychosocial interventions use) characteristics included in the analyses were associated with patients' or carers' outcomes at 6 months, apart from the presence of allied health professionals (AHPs), which was associated with a DEMQOL score 2.7 points higher. When only those with a diagnosis of dementia were considered, the association with presence of AHPs was no longer observed. CONCLUSIONS: Apart from involving AHPs, alterations to the way MASs are structured or function appear unlikely to improve their effectiveness in improving patients' and carers' HRQL. It is possible that the characteristics of MASs may influence patients' and carers' experience, but this was not studied. Copyright © 2017 John Wiley & Sons, Ltd.

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.

Change in Health-related Quality of Life After Referral to Memory Assessment Services.

Despite strong support for the provision of memory assessment services (MASs) in England and other countries, their effectiveness in improving patient outcomes is uncertain. We aimed to describe change in patients' health-related quality of life (HRQL) 6 months after referral to MASs and to examine associations with patient characteristics and use of postdiagnostic interventions. Data from 883 patients referred to 69 MASs and their informal caregivers (n=569) were collected at referral and 6 months later. Multivariable linear regression was used to examine associations of change in HRQL (DEMQOL, DEMQOL-Proxy) with patient characteristics (age, sex, ethnicity, socioeconomic deprivation, and comorbidity) and use of postdiagnostic interventions (antidementia medications and nonpharmacological therapies). Mean HRQL improved, irrespective of diagnosis: self-reported HRQL increased 3.4 points (95% CI, 2.7-4.1) and proxy-reported HRQL 1.3 points (95% CI, 0.5-2.1). HRQL change was not associated with any of the patient characteristics studied. Patients with dementia (54%) receiving antidementia drugs reported greater improvement in their HRQL but those using nonpharmacological therapies reported less improvement compared with those note receiving therapy. HRQL improved in the first 6 months after referral to MASs. Research is needed to determine longer term sustainability of the benefits and the cost-effectiveness of MASs.

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.

Reliability and validity of a self-administration version of DEMQOL-Proxy.

OBJECTIVE: This study aimed to investigate the reliability and validity of a self-administered version of DEMQOL-Proxy, a disease-specific instrument that measures health-related quality of life in people with dementia. METHODS: The sample consisted of 173 informal carers of people with dementia, aged 29 to 89 years old. Carers were mostly female, White/White British and closely related to the patient. They completed DEMQOL-Proxy (self-administered), EQ-5D-3L (proxy reported about the person with dementia), EQ-5D-3L (self-reported about their own health) and the Zarit Burden Interview. Using well-established methods from classical test theory, we evaluated scale level acceptability, reliability and convergent, discriminant and known-groups validity of DEMQOL-Proxy. RESULTS: DEMQOL-Proxy (self-administered) showed high acceptability (3.5% missing data and 0% scores at floor or ceiling), high internal consistency reliability (α = 0.93) and good convergent and discriminant validity. Amongst others, we found a moderately high correlation with EQ-5D-3L proxy reported (r = 0.52) and low to essentially zero correlations with EQ-5D-3L self-reported (r = 0.20) and carer and patient background variables (r ≤ 0.20). As predicted, DEMQOL-Proxy (self-administered) showed a modest correlation with DEMQOL (r = 0.32). Known-groups differences on health-related quality of life (comparing people with versus people without cognitive impairment) were of moderate effect size (d = 0.38) and in the expected direction. CONCLUSIONS: DEMQOL-Proxy (self-administered) has comparable acceptability, reliability and validity with DEMQOL-Proxy (interviewer administered). DEMQOL-Proxy (self-administered) can be used in a wider variety of contexts than its interviewer-administered version, including routine use in busy clinics. Copyright © 2016 John Wiley & Sons, Ltd.

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.

Self-other disagreement in personality assessment: significance and prognostic value.

The feasibility of the use of multiple informant reports in clinical practice was examined in a sample of 105 psychiatric outpatients who provided self-ratings and (2-3) informants' reports on the Five Factor Personality Inventory. The response rate was 97%. The patients assessed themselves as less extraverted and more emotionally stable than their proxies did. In addition, the significance of self-other disagreement was investigated. Our first hypothesis, stating that self-other disagreement would correlate with (personality) pathology, was confirmed: self-other disagreement predominantly occurred in introverted, shy, hostile and depressed persons who tended to have more personality problems and co-morbidity. We found no support for our second hypothesis, stating that self-other disagreement would predict a diminished therapy effect. An important finding, however, was that self-other disagreement proved to be a strong predictor of dropout. Furthermore, a decrease in depression, hostility and shyness was positively correlated with a decrease in self-other disagreement.

Age differences in five personality domains across the life span.

The present study addresses the issue of age differences in 5 personality domains across the life span in a cross-sectional study. In contrast to most previous studies, the present study follows a methodologically more rigorous approach to warrant that age-related differences in personality structure and mean level can be meaningfully compared. It uses data on 50 items of the Five-Factor Personality Inventory (FFPI) available from a study in a large and representative Dutch sample (N = 2,494; age range: 16 to 91 years) conducted in 1996 for the purpose of establishing norms for the FFPI. After having established strict measurement invariance, tests were made for factor covariances to be equal across age groups, revealing structural continuity of personality. Additionally, factor variances were shown to be equal across age groups. A number of age differences in the mean level of the five personality domains emerged. Specifically, older adults were, on average, more agreeable and, especially, more conscientious than middle-aged and younger adults. Findings from our study suggest that both continuity and change may mark personality over the course of life.

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.