Maja Kuharic, MPharm, MSc, PhD
Faculty Starter Grant in Value Assessment and Health Outcomes Research, 2025
Northwestern University
Care Recipient Self-Perceived Burden: Understanding its Role in Healthcare Decision-Making and Patient-Centered Value Assessment
Abstract
With over 20% of Americans serving as informal caregivers — unpaid individuals who provide care to family members or friends — the dynamics of caregiving have significant implications for healthcare. Informal caregiving can lead to Care Recipient Self-Perceived Burden (CR-SPB), where patients feel they impose a burden on their caregivers. CR-SPB can impact treatment choices and health-related quality of life for both patients and caregivers, yet its influence on healthcare decisions remains poorly understood. The objective of this mixed-methods study is to understand the role of CR-SPB in healthcare decisions among patients who rely on informal caregivers and to explore its implications for value assessment in healthcare. By examining CR-SPB’s impact on treatment choices and health-related quality of life, combined with stakeholder engagement, the project aims to advance clinical practice and value assessment methodologies to reflect patient’s lived experiences better.
I'm incredibly grateful for this PhRMA Foundation Faculty Starter Grant. As I begin my independent research career, it enables me to advance patient-centered value assessment, helping ensure healthcare decisions reflect what truly matters to patient.
