ATTRIBUTE IDENTIFICATION OF CAREGIVERS' TRADEOFFS IN CARE MANAGEMENT DECISION MAKING FOR INDIVIDUALS WITH ALZHEIMER'S DISEASE AND RELATED DEMENTIAS
Author(s)
Majid T1, Asamoah B1, Bridges JF2, dosReis S1
1University of Maryland School of Pharmacy, Baltimore, MD, USA, 2Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA
OBJECTIVES: Due to the progressive, neurodegenerative nature of ADRD, caregivers must make trade-offs among health system issues, treatment alternatives, and outcomes when managing the care of individuals with ADRD. Our objectives are to investigate tradable attributes related to health system and treatment outcomes in the care management of an individual with ADRD and develop a framework for a discrete choice experiment. METHODS: A qualitative study was undertaken to elicit the key factors influencing decision-making. Data was collected iteratively through in-depth interviews and focus groups with caregivers of individuals in multiple stages of ADRD. In-depth interviews identified the breadth of experiences and approaches to care management, were tape-recorded, transcribed verbatim, and coded to identify key attributes of care management. Subsequent focus groups with different caregivers used Q sort methodology to identify relevant and important attributes as well as an attribute definition exercise to verify the meaning of the attributes. RESULTS: Primary family caregivers (n=29) were recruited from June-November 2015 from community-based continuing care retirement communities and family support organizations across Maryland and Virginia. Caregivers were mostly white, female and college educated. Most (69%) were caring for spouses, 51% of whom had Alzheimer’s, 49% of whom had mild cognitive impairment or other forms of dementia. Sixteen key attributes were identified from the coded interviews. Twelve of the 16 attributes were deemed relevant and important from the focus groups Attributes were categorized as follows: health system, treatment, or outcomes. Researcher-caregiver agreement on attribute definition was 75%. The health system issues resulted in a framework with seven attributes and three levels. The treatment alternatives and outcomes resulted in a framework with five attributes and three levels. CONCLUSIONS: The care management and desired outcomes frameworks will broaden our ability to both create new metrics for patient-centered outcomes and comparative effectiveness studies for ADRD.
Conference/Value in Health Info
2016-05, ISPOR 2016, Washington DC, USA
Value in Health, Vol. 19, No. 3 (May 2016)
Code
PRM117
Topic
Methodological & Statistical Research
Topic Subcategory
PRO & Related Methods
Disease
Geriatrics, Neurological Disorders