Abstract
BACKGROUND/OBJECTIVES: Quantitative studies have documented persistent regional, facility, and racial differences in the intensity of care provided to nursing home (NH) residents with advanced dementia including, greater intensity in the Southeastern United States, among black residents, and wide variation among NHs in the same hospital referral region (HRR). The reasons for these differences are poorly understood, and the appropriate way to study them is poorly described. DESIGN: Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life (ADVANCE) is a large qualitative study to elucidate factors related to NH organizational culture and proxy perspectives contributing to differences in the intensity of advanced dementia care. Using nationwide 2016-2017 Minimum DataSet information, four HRRs were identified in which the relative intensity of advanced dementia care was high (N = 2 HRRs) and low (N = 2 HRRs) based on hospital transfer and tube-feeding rates among residents with this condition. Within those HRRs, we identified facilities providing high (N = 2 NHs) and low (N = 2 NHs) intensity care relative to all NHs in that HRR (N = 16 total facilities; 4 facilities/HRR). RESULTS/CONCLUSIONS: To date, the research team conducted 275 h of observation in 13 NHs and interviewed 158 NH providers from varied disciplines to assess physical environment, care processes, decision-making processes, and values. We interviewed 44 proxies (black, N = 19; white, N = 25) about their perceptions of advance care planning, decision-making, values, communication, support, trust, literacy, beliefs about death, and spirituality. This report describes ADVANCE study design and the facilitators and challenges of its implementation, providing a template for the successful application of large qualitative studies focused on quality care in NHs.