PMH39 - Humanistic Burden in Dementia: Which Tools Were Most Commonly Used in Studies Published in Pubmed in 2014?

Abstract

To determine which patient-reported outcome (PRO) and caregiver quality of life tools were used in studies on dementia published in 2014. 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. 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. 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.