Assessing Alzheimer's disease patients' quality of life: Discrepancies between patient and caregiver perspectives.

INTRODUCTION: Quality of life (QOL) is an important dimension to consider in Alzheimer's disease (AD), but few large-scale studies have analyzed self and caregiver reports of patient QOL. METHODS: Patient QOL was evaluated in a cohort of 574 AD patients with the QOL-AD scale over 2 years. RESULTS: Caregiver reports of patient QOL were lower at baseline than self reports. Older patient age was associated with overestimation of QOL by caregivers, whereas neuropsychiatric inventory score and caregiver burden were associated with underestimation. Activities of daily living limitation, depressive symptoms, and caregiver burden were systematically associated with poorer QOL, whereas caregiver relationship and apathy were associated with poorer QOL only for self reports or caregiver reports, respectively. Cognitive function and professional care were not associated with QOL. Self-rated patient QOL did not change over time, whereas disease severity markers and caregiver-rated patient QOL declined. DISCUSSION: It is important to assess both self and caregiver ratings when assessing patient QOL.

Comparison of informal care time and costs in different age-related dementias: a review.

OBJECTIVES: Age-related dementia is a progressive degenerative brain syndrome whose prevalence increases with age. Dementias cause a substantial burden on society and on families who provide informal care. This study aims to review the relevant papers to compare informal care time and costs in different dementias. METHODS: A bibliographic search was performed on an international medical literature database (MEDLINE). All studies which assessed the social economic burden of different dementias were selected. Informal care time and costs were analyzed in three care settings by disease stages. RESULTS: 21 studies met our criteria. Mean informal care time was 55.73 h per week for Alzheimer disease and 15.8 h per week for Parkinson disease (P = 0.0076), and the associated mean annual informal costs were $17,492 versus $3,284, respectively (P = 0.0393). CONCLUSION: There is a lack of data about informal care time and costs among other dementias than AD or PD. Globally, AD is the most costly in terms of informal care costs than PD, $17,492 versus $3,284, respectively.

Methodological considerations in cost of illness studies on Alzheimer disease.

Cost-of-illness studies (COI) can identify and measure all the costs of a particular disease, including the direct, indirect and intangible dimensions. They are intended to provide estimates about the economic impact of costly disease. Alzheimer disease (AD) is a relevant example to review cost of illness studies because of its costliness.The aim of this study was to review relevant published cost studies of AD to analyze the method used and to identify which dimension had to be improved from a methodological perspective. First, we described the key points of cost study methodology. Secondly, cost studies relating to AD were systematically reviewed, focussing on an analysis of the different methods used. The methodological choices of the studies were analysed using an analytical grid which contains the main methodological items of COI studies. Seventeen articles were retained. Depending on the studies, annual total costs per patient vary from $2,935 to $52, 954. The methods, data sources, and estimated cost categories in each study varied widely. The review showed that cost studies adopted different approaches to estimate costs of AD, reflecting a lack of consensus on the methodology of cost studies. To increase its credibility, closer agreement among researchers on the methodological principles of cost studies would be desirable.

Exploring the relationship between Alzheimer's disease severity and longitudinal costs.

OBJECTIVE: The joint impact of cognitive, functional, and behavioral statuses must be measured when exploring the impact of new drugs on Alzheimer's disease (AD) costs. There are very few recent studies of AD costs by all dimensions of disease severity. Our objective was to improve estimation of the relationship between AD severity and costs of AD care by using more comprehensive AD data severity and a large sample size. METHODS: Participants were community-dwelling AD patients recruited between 2003 and 2005 and followed annually during a 2-year period in 50 French memory clinics. We used the Resource Use in Dementia questionnaire to estimate costs from a societal perspective. We explored the presence of potential endogeneity bias by using instrumental variable regressions. RESULTS: Cognitive declines impacted informal costs more than medical and nonmedical costs, while functional declines impacted nonmedical costs more than medical and informal costs. Both cognitive and function declines increased the total costs of care. We found that the endogeneity of these variables led to a large underestimation of their impact of AD severity on costs. CONCLUSION: Potential endogeneity should be controlled for to prevent biased estimations of the impact of AD severity measures on costs.

Public financial support receipt and non-medical resource utilization in Alzheimer's disease results from the PLASA study.

A major health policy objective is to encourage and sustain informal caregiving networks for people with Alzheimer's disease (AD). This goal can be reached by providing financial assistance to patients facing difficulties in the accomplishment of activities of daily living, in order to encourage utilization of professional service and therefore alleviate informal caregiver burden. The main issue is to understand if and how financial assistance is correlated with the distribution between informal and professional care. We used a cross-sectional sample of 1131 French elderly patients (≥65) with mild to moderate AD. Informal and professional service resource use was measured in hours per month using a validated instrument, the Resource Use in Dementia questionnaire. Our results confirmed the utter dominance of informal care, which represented more than 80% of total care even among patients receiving public financial support. However financial support receipt was associated with differences in care utilization: higher use of total non-medical care (formal and informal) and lower proportion of informal care in total non-medical care. Our results suggested the presence of a threshold effect that would influence non-medical care demand decisions. Even if on average the use of informal care in total was 13.3% lower among patients receiving public financial support, informal care use represented more than 80% of total non-medical care use. Providing robust evidence of these associations is crucial to further identify the right dosage between professional service demand and informal care utilization that could be associated with a lower burden and therefore a lower probability of institutionalization.

[Epidemiologic context and forms of care for patients with Alzheimer's disease]. / Contexte epidémiologique et formes de prise en charge de la maladie d'Alzheimer.

The incidence and prevalence of Alzheimer's disease is constantly rising. Patient care is medical but also and especially medico-social, and draws on numerous resources of which the patient's family represents a significant share.

Predictive factors of discontinuation and switch of cholinesterase inhibitors in community-dwelling patients with Alzheimer's disease: a 2-year prospective, multicentre, cohort study.

BACKGROUND: The efficacy of cholinesterase inhibitors (ChEIs), especially over the long term, is still under discussion. There is a lack of data concerning the optimal drug treatment duration and the reasons for discontinuation, particularly outside the clinical trial setting. OBJECTIVE: To identify predictive factors of discontinuation and switch of ChEIs in a real-world setting. METHODS: A multicentre cohort study of 686 patients with mild-to-moderate ambulatory Alzheimer's disease who were diagnosed in 16 Alzheimer's disease expert centres in 2000-2 and who were assessed twice yearly for 2 years. The main outcome measure was ChEI discontinuation and switch (analysed using Cox survival analyses). RESULTS: After 2 years, of the 611 subjects treated with a ChEI at baseline, 100 subjects had switched or discontinued ChEI therapy (incidence rate 12.7 [95% CI 10.2, 15.2] per 100 person-years). The incidences of switching and discontinuation were 9.2 (95% CI 7.0, 11.3) and 3.6 (95% CI 2.3, 4.8) per 100 person-years, respectively. In the multivariate analysis, predictive factors for switching were an ineffective ChEI dose (adjusted hazard ratio [HR(a)] = 6.91, 95% CI 3.08, 15.49), rapid cognitive decline (HR(a) = 4.10, 95% CI 1.85, 9.05), hospitalization unrelated to Alzheimer's disease (HR(a) = 2.33, 95% CI 1.07, 5.09) and anxiety (HR(a) = 2.08, 95% CI 1.16, 3.73). Predictive factors of discontinuation were: hospitalization related (HR(a) = 9.14, 95% CI 2.69, 31.07) or unrelated (HR(a) = 4.23, 95% CI 1.54, 11.59) to Alzheimer's disease, use of an anticholinergic drug (HR(a) = 4.26, 95% CI 1.46, 12.45) and weight loss (HR(a) = 3.77, 95% CI 1.15, 12.33). CONCLUSIONS: This study highlights four types of predictors of switch or discontinuation, reflecting disease progression, reconsideration of ChEI benefits, adverse drug reactions to ChEIs and inappropriate concurrent use of anticholinergic drugs. Attention should be paid to anticholinergic agents and prescribers should be given better information about these drugs.

Dementia prevention: methodological explanations for inconsistent results.

The prevention of neurodegenerative dementias, such as Alzheimer disease, is a growing public health concern, because of a lack of effective curative treatment options and a rising global prevalence. Various potential risk or preventive factors have been suggested by epidemiologic research, including modifiable lifestyle factors, such as social contacts, leisure activities, physical exercise, and diet, as well as some preventive pharmacologic strategies, such as hormone replacement therapy, nonsteroidal antiinflammatory drugs, and Ginkgo biloba. Some factors have been targeted by interventions tested in randomized controlled trials, but many of the results are in conflict with observational evidence. The aim of this paper is to review the epidemiologic data linking potential protective factors to dementia or cognitive decline and to discuss the methodological limitations that could explain conflicting results. A thorough review of the literature suggests that, even if there are consistent findings from large observational studies regarding preventive or risk factors for dementia, few randomized controlled trials have been designed specifically to prove the protective effects of interventions based on such factors on dementia incidence. Because of the multifactorial origin of dementia, it appears that multidomain interventions could be a suitable candidate for preventive interventions, but designing such trials remains very challenging for researchers.

Predictive factors of attrition in a cohort of Alzheimer disease patients. The REAL.FR study.

BACKGROUND: Attrition, i.e. patient dropout, can threaten the validity of results in longitudinal studies. The aim of this study was to identify patient and caregiver factors predictive of attrition in a cohort of Alzheimer disease (AD) patients. METHODS: 686 patients with mild to moderate AD were included in the multicenter prospective REAL.FR study. Standardized gerontological evaluations were carried out twice yearly. Factors associated with attrition were assessed by survival analysis using a Cox proportional hazard model. RESULTS: After 2 years, 278 (40.5%) patients had dropped out. Causes of attrition included refusal (20.9%), death (20.1%), institutionalization (19.8%), and loss to follow-up (19.8%). Attrition rates between each 6-month wave were constant at 12%. After adjustment, several independent factors remained associated with attrition: patients cared for by an unrelated caregiver [HR 1.7; 95% CI (1.08-2.59)], loss of autonomy [HR = 1.37; (1.03-1.82)], increasing caregiver burden [HR = 1.014; (1.005-1.022)], use of cholinesterase inhibitors [HR = 0.40; (0.27-0.59)], use of 1 to 3 other types of medication [HR = 0.57; (0.36-0.89)]. CONCLUSIONS: The identification of both patient and caregiver factors predictive of attrition is of particular interest for the development and targeting of attrition prevention strategies. In patients with chronic diseases, particular attention should be paid to caregiver well-being to limit attrition.

Coxibs: evolution of prescription's behaviour in France.

The aim of the present study was, first to characterize profiles of coxibs' prescribers [general practitioners (GPs) and rheumatologists] in 2002 in France and, secondly, to identify factors associated with modification of this profile 1 year later. All GPs and rheumatologists from Midi-Pyrenees, Aquitaine, Languedoc-Roussillon and Pays de Loire areas (South of France: 11 050 000 inhabitants) were included in the study. For each practitioner, we used data concerning all non-steroidal anti-inflammatory drugs (NSAIDs) including coxibs reimbursed during period 1 (P1; January-March 2002) and period 2 (P2; January-March 2003). The ratio between the number of coxibs' prescriptions and the total number of NSAIDs' prescriptions (including coxibs) was used to define the two profiles of prescribers, one with a low level of coxibs' prescriptions and another one with a high level of coxibs' prescriptions. Characteristics of practitioners and characteristics of their practices were compared according to this profile. In the second step, we investigated the characteristics (of practitioners and practices) associated with an increase in the level of coxibs' prescriptions in P2 for practitioners with a low level of coxibs' prescriptions in P1. Results are expressed as odds ratio with their 95% confidence intervals. A positive statistical link was found between a high level of coxibs' prescriptions, the speciality of rheumatologist or extra costs for consultation. In contrast, a negative association was observed with female gender or age below 44 years. No relationship was found with the status of referent. Concerning practices' characteristics of practitioners, there was a positive statistical link between a high ratio of coxibs' prescriptions and high co-prescriptions of gastroprotective agents and a negative association with a high number of acts, a high proportion of patients with chronic disabling diseases (CDD) or a high number of patients between 15 and 64 years. There was no statistical link with proportion of patients covered by Universal Medical Coverage (UMC) or aged more than 65 years. Among the factors involved in the increase in the ratio (between P1 and P2), no relationship was found with practitioners' characteristics. In contrast, some factors related to practices (level of gastroprotective co-prescriptions, number of acts, number of CDD patients) were related to a change in coxibs' prescriptions between P1 and P2. This study allowed to discuss some relationships between coxibs' prescription and practitioners' (age, gender, medical speciality or extra costs for consultation) or practices' (level of medical practice, patients' age, number of CDD patients or level of gastroprotective prescriptions) characteristics. In contrast, some other factors like the referent status or the number of patients with UMC are not related. Physicians, initially low prescribers of coxibs and increasing their coxibs' prescriptions during the period of our study, were those with a high level of gastroprotective prescriptions, a low number of acts or a small proportion of CDD patients.

New assessment of dependency in demented patients: impact on the quality of life in informal caregivers.

UNLABELLED: A qualitative tool was recently developed for evaluation of dependency in a demented population. This tool assesses the impact of cognitive impairment on functional status, taking into account disability in both the basic and the instrumental activities of daily living. The purpose of the present paper was to study the impact of dependency on informal caregivers who assist demented patients at home, with this new useful tool. METHODS: A cross-sectional analysis was undertaken of the subgroup of 145 demented patients of the National Dementia Economic Study, aged > or = 65 years, living in the community, with an available caregiver. A neuropsychological assessment of patients (Mini-Mental State Examination) and a comprehensive evaluation of caregivers (quality of life, Short Form Health Survey-36, depression, Sense of Competence) were recorded. A total of 32.4% were dependent, disabled in both basic and instrumental functions, 42.1% were non-dependent but with instrumental functional disabilities and 25.5% were non-dependent. Impact of dependency on the caregiver's experience was significant for different aspects (satisfaction with caregiving, subjective burden, quality of life, depression). Medical and non-medical costs increased with the severity of functional disability. Findings indicate that this tool is also useful to assess the impact of progression of functional disability in patients with dementia, on the caregiver issues. The consequences appeared both on personal feelings and on quality of life and financial involvement in management of the patient. Cognitive impairment appears to have more moderate repercussions in these areas.

Cost of lung cancer: a methodological review.

Cost of illness (COI) studies estimate the overall economic burden of a specific disease, rather than simply treatment-related costs. While having been criticised for not allowing resource prioritisation, COI studies can provide useful guidance, so long as they adhere to accepted methodology. The aim of this review is to analyse the methods used to evaluate the cost of lung cancer. Because of the increasing incidence and high direct and indirect costs of lung cancer, it is an important disease in terms of economic implications, and therefore provides a relevant example with which to review COI study methodologies. First, the key points of the methodology relating to COI studies were identified. COI studies relating to lung cancer were then reviewed, focussing on an analysis of the different methods used and an identification of the strengths and weaknesses of each approach. The COI studies that were analysed confirmed that lung cancer is a costly illness, and that hospitalisation and treatments account for a large part of direct costs, while indirect costs represent a large part of the total costs. The review also showed that COI studies adopted significantly different approaches to estimate the costs of lung cancer, reflecting a lack of consensus on the methodology of COI studies in this area. Hence, to increase the credibility of COI studies, closer agreement among researchers on methodological principles would be desirable.

Beyond the global score of the Zarit Burden Interview: useful dimensions for clinicians.

OBJECTIVES: The purpose of this study was to explore the structure of the Zarit Burden Interview (ZBI) for informal caregivers of patients suffering from AD or related disorders, and to examine the relations of the dimensions found with functional disabilities and other patient health indicators. DESIGN: 152 dyads of community-dwelling older adults with dementia and their primary caregivers were analysed. METHODS: Caregiver burden was measured by the 22-item ZBI. Caregivers' and care recipients' characteristics were collected with the MDS (Minimum Data Set) of the RAI (Resident Assessment Instrument) Home Care instrument. Data on dementia (diagnosis, severity, MMSE) were also obtained. Burden data were analysed by principal component analysis (PCA) with varimax rotation. Relationships between scores on PCA factors and care recipients' health indicators were studied with inferential statistical tests. RESULTS: Three dimensions of burden were found: effect on the social and personal life of caregivers, psychological burden and feelings of guilt. Some health variables were linked to these dimensions. Spouses and children perceived burden differently. Spouse caregivers emphasized the deterioration of their personal and social life. Children, less involved in daily care, were more prone to feel guilt that they were not doing enough for their parent.

Spatial and temporal distribution of cholera in Ecuador between 1991 and 1996.

BACKGROUND: The seventh pandemic of cholera affected South America in 1991 after a century of absence. Favoured by local conditions, the epidemic of cholera in Ecuador had a rapid impact. The epidemic of cholera evolved with temporal and geographical variations. METHODS: The temporal and geographical variations of cholera in Ecuador between 1991 and 1996 have been analysed. The Ecuadorian epidemiological surveillance system is a semi-active one based on obligatory weekly declarations. A geographical representation of annual impact rate has been made. Using a smoothing technique by cross-validation, time curves were identified and spatial diffusion was studied by cartography. RESULTS: In 1991 and 1992, cholera in Ecuador evolved in an epidemic mode with two explosive epidemic peaks. Cholera then entered a phase of regression. The disease spread from two main epicentres, one in the South (El Oro, Guayas, Los Rios) and the other in the North (Esmeraldas and Imbabura). These focal outbreaks spread to neighbouring provinces during the peak outbreaks between 1991 and 1993. CONCLUSION: This study demonstrated that the epidemic spread from the affected provinces in the South and the North of the country.