ISPOR 18th Annual European Congress
Milan, Italy
November, 2015
PMH39
Mental Health
Patient-Reported Outcomes & Patient Preference Studies (PRO)
Quality-of-Life (hrQoL)
HUMANISTIC BURDEN IN DEMENTIA: WHICH TOOLS WERE MOST COMMONLY USED IN STUDIES PUBLISHED IN PUBMED IN 2014?
Martin A
Crystallise Ltd., London, UK
OBJECTIVES: To determine which patient-reported outcome (PRO) and caregiver quality of life tools were used in studies on dementia published in 2014. METHODS: An evidence surveillance process was established based on a systematic search of PubMed, incorporating all studies published from 2010 and updated weekly, with a final search on 18 May 2015. Abstracts identified by the search that reported humanistic burden outcomes in dementia were identified. Articles were included if they reported results or a study protocol from a primary research study or were a systematic review. PRO tools were identified, where possible, from the abstract alone. RESULTS: Of 1,980 articles published in 2014 identified by the search for PROs and quality of life, 32 were relevant to patients and/or caregivers of adults with dementia, cognitive impairment or memory loss. The PRO used was not specified in 17 abstracts, but 19 different PRO or caregiver-reported instruments were cited in the remaining 15 abstracts. Dementia-specific instruments included the Quality of life-Alzheimer's disease (QoL-AD), used in 6 studies, and the Alzheimer's Disease Assessment Scale - Cognition (ADAS-Cog), the Five-Cog test, the Metamemory in Adulthood Questionnaire and the Mild Cognitive Impairment Questionnaire (MCQ), used in 1 study each.  Despite the substantial burden on caregivers, only 8 studies reported outcomes related to the humanistic burden in this population. Instruments used in caregivers included generic utility measures, the QOL-AD, and the Zarit Burden Interview, but were not specified in 5 abstracts. Utilities were measured in only 3 studies, with Short Form (12 or 36) used in all 3 studies and EQ-5D in one.  Depression was assessed in 2 studies of patients and one of caregivers.  CONCLUSIONS: Most study abstracts reporting on the humanistic burden in dementia in 2014 did not specify use of a dementia-specific instrument. Only 25% of studies assessed burden on caregivers, and utility values were rarely reported.