Preference-based quality of life in patients with Alzheimer's disease

BackgroundThis study was developed to evaluate the feasibility, reliability, and validity of use of patients' ratings of health preference measures as outcomes for cost-effectiveness analyses in persons with very mild to moderate Alzheimer's disease (AD).MethodsPatients and caregivers completed ratings of the EuroQol-5D system (EQ-5D) and the Health Utilities Index Mark 2 (HUI2) and instruments that assess cognition, mood, insight, AD-specific and generic health-related quality of life (QOL) and activities of daily living.ResultsPatients' HUI2 scores were reliable. EQ-5D scores were somewhat less so. Patients rated their utility high, with overall EQ-5D and HUI2 scores greater than 0.8. Neither the EQ-5D nor the HUI2 scores had a relationship with severity of cognitive impairment. Both the EQ-5D and the HUI2 had expected relationships with patient-rated measures of QOL, function, mood, and specific subscales we hypothesized should be associated with patient preferences. Patient insight into functional and cognitive impairments had little association with their health preference scores.ConclusionsAD patients' scores on the EQ-5D and the HUI2 have many of the characteristics of valid preference measures. However, the proportions of persons who do not perceive any disability, the lack of association with the caregivers' ratings of activities of daily living, limited associations with insight, and no association with their Mini-Mental State Exam scores suggest that patients' reports of disability might reflect legitimate self-perceptions of mood and function that are associated with comorbidities rather than with AD.     

Assessing quality of life in Taiwanese patients with Alzheimer's disease

OBJECTIVE: To measure differences in patients with Alzheimer's disease (AD) and caregiver assessments of the patients' quality of life (QOL) and to identify the patient characteristics, caregiver characteristics, or patient-caregiver interactions responsible for these differences. METHODS: We recruited consecutive patients with AD and their caregivers from an outpatient clinic of a teaching hospital in Taiwan. Each patient and caregiver rated the patient's quality of life (QOL) using the Quality of Life-Alzheimer's Disease (QOL-AD) questionnaire. Additional measures included the Mini-Mental State Examination (MMSE), Clinical Dementia Rating, Blessed Activities of Daily Living assessment, and the Neuropsychiatric Inventory. Only patients with MMSE score >or= 10 were enrolled. RESULTS: Of the 94 patients enrolled, 81 with reliable caregivers were included. The internal consistency was good within both patient and caregiver reports (alpha=0.83 and 0.79, respectively). The agreement between patient and caregiver QOL-AD reports was moderate (absolute intraclass correlation coefficient: 0.41). Regression analyses indicated that caregiver distress was the most consistent predictor of QOL rating discrepancy between the patient and caregiver, and patient depressive disorder was the most significant predictor of QOL. CONCLUSIONS: Similar to previous studies in different ethnic groups, the QOL perception differed between the Taiwanese patients with AD and their caregivers. Medical professionals should be cautious if they try to use a caregiver-reported QOL to replace the patient-reported QOL among AD patients of mild to moderate severity.     

Sleep quality in caregivers of patients with Alzheimer's disease and Parkinson's disease and its relationship to quality of life

ABSTRACT Background: Knowledge about sleep complaints of caregivers of patients with Alzheimer's disease (AD) and Parkinson's disease (PD) is limited, and we lack information about the relationship between caregivers' sleep problems and their quality of life (QoL). Methods: We evaluated subjective sleep quality and its relationship to QoL in a group of 80 caregivers of patients with AD (ADCG, n = 40) and PD (PDCG, n = 40), and in 150 controls. Information about night-time complaints was collected using the Pittsburgh Sleep Quality Index (PSQI). QoL was measured using the McGill QoL Questionnaire. Results: Eighteen ADCG (45%), 22 PDCG (55%), and 45 (30%) controls reported poor sleep quality. Mean global PSQI score of PDCG (6.25 ± 3.9) was not significantly different from that of ADCG (5.8 ± 3.5; p = 0.67). However, both PDCG and ADCG scored significantly higher than control group (4.3 ± 3.1; p < 0.01). ADCG frequently reported difficulties falling asleep (72.5%) and disturbed sleep (100%). PDCG reported reduced subjective sleep quality (80%) and increased sleep disturbances (100%). Poor sleep quality was associated with depressive symptoms and correlated with QoL in caregivers of both groups, particularly the psychological symptoms domain. Conclusions: Among caregivers of patients with AD and PD, poor sleep quality is frequent and significantly linked to QoL and depressive symptoms. Identifying the nature of sleep disturbances not only in patients but also in their caregivers is important as appropriate treatment may lead to a better management of the needs of families coping with these patients.     

Factors impacting on quality of life in Parkinson's disease: Results from an international survey

Current management guidelines for the treatment of patients with Parkinson's disease (PD) are limited due to the lack of knowledge of factors that influence health‐related quality of life (HRQL). To assess the HRQL of people with PD, and to systematically identify and evaluate those factors (other than disease severity and medication, which could have an impact), we undertook a cross‐sectional, randomized selection, multicenter international survey of patients with PD, caregivers, and clinicians. Face‐to‐face interviews were conducted with subjects in six countries. Disease severity, medication, and other factors hypothesized to influence HRQL were assessed using a combination of specially developed questionnaires and validated instruments including the Parkinson's Disease Questionnaire‐39 (HRQL), Hoehn and Yahr Stage (disease severity), and Beck's Depression Inventory (BDI; depression). Multiple linear regression models were used to demonstrate whether the factors investigated contribute significantly to HRQL. The results obtained indicated that Hoehn and Yahr stage and medication explained only 17.3% of the variability in HRQL of patients with PD, although both were significant (R² = 0.173, P < 0.05). Other factors increased the explanatory power to adjusted R² = 0.597, with BDI being the most significant predictor of variability in HRQL (adjusted R² = 0.582; P < 0.001), followed by “Satisfaction with the explanation of the condition at diagnosis” and “Current feelings of optimism” (both P < 0.05). These factors, in addition to disease severity and medication, explain 59.7% of the variability in HRQL across the population. In conclusion, depression (as measured by the BDI) in PD, “satisfaction with the explanation of the condition at diagnosis” and “current feelings of optimism” have a significant impact on HRQL. The completion of this initial analysis is the first step towards developing management guidelines that truly influence the HRQL of patients with PD. © 2001 Movement Disorder Society.     

Suicide amongst Alzheimer's disease patients: a 10-year survey

Suicide is a major public health problem with advancing age being one of the factors associated with increased risk. It has been suggested that most DSM axis-I disorders contribute to increased suicidal risk while dementia is one of the few exceptions. We conducted a 10-year retrospective analysis of all elderly patients suffering from dementia admitted to a large urban mental health center. Between 1991 and 2000 there were 1,551 admissions to our center who were 65 years or older. Of these, 341 were diagnosed (DSM-IV criteria) as suffering from dementia and 215/341 as suffering from Alzheimer's disease (AD). Sixteen AD patients (7.4% of all AD patients) were admitted immediately following a suicide attempt. The control group consisted of the next admission of an elderly AD patient matched for age and gender. The index group (suicidal patients) differed from controls in Clinical Dementia Rating scores (p = 0.017) and higher frequency of previous suicide attempts (p = 0.022). Lifetime psychopathology was not associated with higher rates of suicide attempts (p = 0.068). Physicians should be aware that suicide attempts are not rare in elderly AD patients. Higher level of daily functioning and previous suicide attempts are associated with increased suicidal risk.     

Rapidly progressive Alzheimer's disease: a multicenter update

The objective was to characterize a rapidly progressive subtype of Alzheimer's disease (rpAD). Multicenter (France, Germany, Japan, Spain) retrospective analyses of neuropathologically confirmed rpAD cases initially classified as prion disease due to their clinical phenotype were performed. Genetic properties, cerebrospinal fluid biomarkers, neuropathology, and clinical features were examined. Eighty-nine patients were included (median survival 10 months). APOE and PRNP codon 129 genotype distribution paralleled a healthy control group. APOE ε4 homozygosity was absent. Cerebrospinal fluid biomarkers were abnormal, but within a range as expected for classic AD, except for proteins 14-3-3, which were detectable in 42%. Thus, evidence of the existence of rpAD is accumulating. The APOE profile is intriguing, suggesting that this very rapid disease form might represent a distinct subtype of Alzheimer's disease.     

Impact of functional alterations on quality of life in patients with Alzheimer's disease

Aim: To identify factors associated with health-related quality of life (HRQoL) as assessed by the Dementia Quality of Life (DQoL) in patients with Alzheimer's disease (AD), focusing particularly on functional alterations.

Methods: Cross-sectional multicenter study in subjects aged 65 years or older with mild to moderate AD. HRQoL was measured using the DQoL (five domains: self-esteem, positive affect/humor, negative affect, feeling of belonging, and sense of esthetics). Functional alterations were assessed based on activities of daily living (ADLs) and instrumental activities of daily living (IADLs). We also recorded socio-demographic characteristics of the patient and their carer, and comprehensive geriatric assessment including MMSE and psycho-behavioral data (Neuropsychiatric Inventory, Cornell depression score). Factors associated with each domain of the DQol were identified by multivariate linear regression.

Results: In total, 123 subjects were included (mean age 82 ± 6 years, 64% women). Two of the five domains of the DQoL were significantly associated with factors based on functional evaluation. The ability to transfer within the home and the ability to use the telephone were associated with an increase in HRQoL in the ‘self-esteem’ domain (p = 0.02 and 0.05, respectively). Ability to get dressed without assistance was associated with lower HRQoL in the ‘negative affect’ domain (p = 0.0007).

Conclusion: Alterations in functional capacity have a significant effect on HRQoL in several domains of the DQoL.     

DGAVP (Org 5667) in early Alzheimer's disease patients: an international double-blind, placebo-controlled, multicenter trial

We carried out a double-blind study of a vasopressin-related peptide, DGAVP citrate (Org 5667), in 115 patients with mild dementia, probable Alzheimer's type (DAT). Neither clinical rating scales nor psychometric tests revealed any improvement over 84 days with once-daily intranasal treatment with 2 different doses of DGAVP. We conclude that vasopressin-like peptides are not satisfactory therapeutic agents in DAT.     

Memantine and functional communication in Alzheimer's disease: results of a 12-week, international, randomized clinical trial

Post hoc analyses suggest that memantine treatment may provide communication-related benefits in patients with Alzheimer's disease (AD). In this 12-week, international, randomized, double-blind, placebo-controlled trial of memantine (10 mg bid), the functional communication abilities of patients with AD (MMSE range: 10-19) were assessed using the Functional Linguistic Communication Inventory (FLCI; primary measure). Two combined subscales (Social Communication and Communication of Basic Needs) from the American Speech-Language-Hearing Association Functional Assessment of Communication Skills for Adults (ASHA FACS; secondary measure) were administered to caregivers. Treatment-emergent adverse events were also recorded. After 12 weeks, memantine-treated patients (n = 133) demonstrated a non-significant improvement on the FLCI (placebo: -0.6; memantine: 0.7; p = 0.070, LOCF) and a significant improvement on the ASHA FACS (placebo: -5.3; memantine: 0.5; p = 0.022), compared with placebo-treated patients (n = 124). Memantine had a low incidence of adverse events. In patients with moderate AD, memantine treatment improved functional communication, as recognized by caregivers.     

Caregivers' assessments of preference-based quality of life in Alzheimer's disease

BackgroundThis study was designed to evaluate the feasibility, reliability, and validity of use of caregivers' ratings of two health preference measures as outcomes for cost-effectiveness analyses in persons with very mild to moderate Alzheimer's disease (AD).MethodsCaregivers completed ratings of preference for AD patients' health by use of the EuroQol-5D system (EQ-5D) and the Health Utilities Index Mark 2 (HUI2). They also rated patients' cognition, mood, burden, AD-specific and generic health-related quality of life (QOL), and activities of daily living.ResultsCaregivers' HUI2 scores were reliable. Neither the caregiver ratings of the patients' health by use of the EQ-5D nor the HUI2 had a relationship with severity of cognitive impairment. Both the EQ-5D and the HUI2 had expected relationships with caregivers' assessments of patients' function, AD-specific QOL, and physical and mental health and selected subscales of the measures of AD-specific QOL and overall health. In addition, caregiver scores showed relationships with patient self-rated function, mood, and physical health but not AD-specific QOL. Caregiver burden was associated with caregivers' scores.ConclusionsCaregiver-completed ratings of preference for patients' health made by use of the EQ-5D and the HUI2 have many of the characteristics of valid preference measures. However, the lack of association with patient Mini-Mental Status Exam scores and patient self-rated AD-specific QOL and the associations with caregiver subjective burden might present limitations to their use as proxy measures for cost-effectiveness analyses.     

Determinants of quality of life in Alzheimer's disease: perspective of patients, informal caregivers, and professional caregivers

Background: Alzheimer's disease (AD) is a chronic medical condition with symptoms that compromise patients' quality of life (QoL). The identification of the factor predicting QoL in AD is essential to develop more effective interventions. Recent research suggests that these factors could be different for the distinct informants. This study explores the QoL predictors considering three different sources of information: patients, caregivers, and healthcare staff. Methods: In this cross-sectional study, a sample of 102 patients, their primary caregivers, and 15 members of the healthcare staff evaluated patients' QoL (QoL-AD Scale). Patients' and caregivers' demographic and clinical data (cognitive function, neuropsychiatric symptoms, depression, and caregivers' burden) were considered as QoL predictors. Results: In multivariate-adjusted linear regression analyses, we observed that patients' ratings were mainly affected by their mood whereas caregivers' ratings were also negatively influenced by patients' irritability and burden. According to staff ratings, both psychotic symptoms and neuroleptics were associated with lower QoL. Conclusions: Our findings suggest that depression is the main variable related to patients' QoL and that more careful management of neuropsychiatric disorders is necessary. Both proxies' ratings are not equivalent to patients' reports in terms of predictors but they are complementary. Thus, a thorough QoL assessment should consider separately the perspective of the different informants.     

Information technology tools to improve treatment of patients with depression: focus on guidelines implementation

Information technology has the potential to improve and support the treatment of depression. Use of clinical guidelines can improve outcome of treatment, but implementation of guidelines is a demanding process and the resulting user compliance is often poor. Electronic health records, clinical decision support systems and other information technology tools seem at first glance to be a preferable way to implement clinical guidelines since they require user's active and problem oriented participation. This article reviews attempts made so far at use of information tools for implementation of clinical guidelines for depression treatment and discusses their effects. It turns out that there are few existing solutions, ambiguous effects and that usage is often limited. In future the factors determining development of successful electronic tools for clinical guidelines implementation will need to be further specified. Further research projects are underway in Slovenia to investigate these issues.