Improving Care Planning and Well-being in Older Adults with Macular Degeneration

University Of Rochester, Rochester NY

Investigators

Linked publications & trials

Abstract

DESCRIPTION (provided by applicant): As the leading cause of irreversible blindness and severe vision loss among older adults, Age-related Macular Degeneration (AMD) affects more than 10 million people in the US. The aging of the population has led some to forecast an epidemic of AMD. Loss of independence and valued activities places AMD patients at increased risk for depression, anxiety, and disability. Many are pessimistic and reluctant to plan for future housing and mobility problems associated with vision loss. Patients' emotional and behavioral responses to AMD can exacerbate the long-term health threat of the disease and contribute to preventable health care costs, loss of productivity, and burden to family members. We propose a randomized controlled trial of a psycho-social intervention that addresses three mental health promotion goals: (1) increase emotional well-being, (2) improve future outlook, and (3) protect or enhance current and future-oriented functioning. Our Preventive Problem Solving Intervention (PREPSI) is a short, standardized modification of problem- solving therapy that trains participants to identify and clearly define current and future problems, and then generate, evaluate, choose, and implement solutions. In addition, we provide group-based education on disease-management. We aim to improve risk perception, awareness of options, preference formation, and active decision-making for future concerns, e.g., care settings, social needs, and residential adjustments. The long-term goal of our research program is to improve quality of life in late adulthood by conducting basic and translational research on preventive future planning. The proposed study examines the effects of the PREPSI on 400 AMD patients 60 and older, who have best corrected vision acuity of 20:60 in their better eye. They will be randomized to 8 PREPSI sessions with master's level trainers or to an enhanced attention control arm in which medical students conduct Life and Health Review. All study participants will receive 4 vision education classes and resource information. Assessors blind to treatment condition will measure Psychological Well-being (primary outcome), Future Outlook, Everyday Functioning, and Preparation for Future Care (secondary outcomes) at 4 time points throughout the intervention and every 6 months in a 24 month follow-up. Our intervention will improve AMD patients' quality of life and could inform programs for other chronic diseases. PREPSI is designed to be transportable and could be implemented in low vision clinics by staff with minimal training. Next steps could include multi-site trials or dissemination into eye clinic networks. This proposal builds on a NIA K01 to the PI that focused on observational studies of the effect of PFC on subjective well-being and everyday functioning for older adults. This is the applicant's first R01 submission.