Developing a dementia-specific preference-­based quality of life measure (AD-5D) in Australia: a valuation study protocol

IntroductionGeneric instruments for assessing health-related quality of life may lack the sensitivity to detect changes in health specific to certain conditions, such as dementia. The Quality of Life in Alzheimer’s Disease (QOL-AD) is a widely used and well-validated condition-specific instrument for assessing health-related quality of life for people living with dementia, but it does not enable the calculation of quality-adjusted life years, the basis of cost utility analysis. This study will generate a preference-based scoring algorithm for a health state classification system -the Alzheimer’s Disease Five Dimensions (AD-5D) derived from the QOL-AD.Methods and analysisDiscrete choice experiments with duration (DCETTO) and best–worst scaling health state valuation tasks will be administered to a representative sample of 2000 members of the Australian general population via an online survey and to 250 dementia dyads (250 people with dementia and their carers) via face-to-face interview. A multinomial (conditional) logistic framework will be used to analyse responses and produce the utility algorithm for the AD-5D.Ethics and disseminationThe algorithms developed will enable prospective and retrospective economic evaluation of any treatment or intervention targeting people with dementia where the QOL-AD has been administered and will be available online. Results will be disseminated through journals that publish health economics articles and through professional conferences. This study has ethical approval.

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Assessment of Health-Related Quality of Life for Caregivers of Alzheimer’s Disease Patients

International Journal of Alzheimer s Disease ◽

10.1155/2016/9213968 ◽

2016 ◽

Vol 2016 ◽

pp. 1-7 ◽

Cited By ~ 4

Author(s):

Maria I. Andreakou ◽

Angelos A. Papadopoulos ◽

Demosthenes B. Panagiotakos ◽

Dimitris Niakas

Keyword(s):

Quality Of Life ◽

Alzheimer’S Disease ◽

Alzheimer's Disease ◽

Negative Correlation ◽

Depressive Symptomatology ◽

Neurodegenerative Disorder ◽

Health Related Quality ◽

Related Quality ◽

Health Related

Background.Alzheimer’s disease (AD) dementia is a chronic neurodegenerative disorder that results in total cognitive impairment and functional decline. Family members are the most usual caregivers worldwide, resulting in a subsequent degradation of their quality of life.Methods.During November 2013–March 2014 in Athens, Greece, 155 AD patients’ family caregivers’ Health-Related Quality of Life and existence of depressive symptomatology were assessed.Results.A strong negative correlation between the dimensions of HRQoL and the scores of the depression scale was revealed. AD patients’ caregivers have a lower HRQoL almost in all dimensions compared to the Greek urban general population. The caregivers’ social role, the existence of emotional problems, and their mental health status led to this result. Furthermore significantly important differences in caregivers’ total HRQoL and depressive symptomatology were indicated in relation to their gender, hypertension existence, patient care frequency, cohabitation with the patient, disease aggravation, and economic status.Conclusions.Caring for relatives with AD strongly correlates with negative caregivers’ HRQoL scores and adversely affects their depressive symptomatology. This negative correlation is enhanced in the later stages of the disease, in greater frequency of care, through living with a patient, in poor financial status, and with the existence of a chronic illness.

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