Health-Related Quality of Life and Psychosocial Wellbeing for Individuals Managing Chronic Conditions after a Major Surgery

Awareness of variations in health outcomes across the U.S. population has grown in recent years. Improving the long-term physical and mental health of individuals with one or more chronic health conditions remains a critical public health issue, particularly for groups that have faced challenges in accessing appropriate health services. Prior research has shown that individuals who pursue genital reconstructive surgery face persistent psychosocial challenges and obstacles to using healthcare that affect their health and wellbeing over the life course. However, little is known about their health and needs in the years after surgery. Our team’s research has found that this group has a high concentration of multi-morbidity, with nearly half reporting two or more chronic medical conditions. The proposed study focuses on individuals facing one or more chronic conditions who have been admitted to home healthcare after genital reconstructive or other major surgery. Home care clinicians provide services to individuals with chronic health conditions and support not only individuals’ medical but also psychosocial needs, with potential long-term impact on one’s ability to interact positively with medical providers and engage in self-care behaviors that influence one’s health trajectory over the life course. The goal of this prospective, mixed method, longitudinal cohort study is to build the evidence on individuals with one or more chronic health conditions admitted to home healthcare after genital reconstructive or other major surgery and the long-term healthcare needs of these individuals, examining changes in multiple domains of quality of life and potentially in their relationships with healthcare providers. This group is selected due to the particularly limited evidence on the long-term quality of life and mental health of individuals who received genital reconstructive surgery. Using quantitative and qualitative methods, our specific aims are to: Document changes over time in individuals’ (N = 300 recruited from VNS Health’s home healthcare program) psychosocial adjustment after surgery, including such domains as (i) lifespan development, (ii) personal relationships, (iii) social and community support, (iv) employment and financial wellbeing, and (v) environmental mastery and purpose in life. Examine changes in individuals’ health-related quality of life after surgery, including such domains as (i) physical health, (ii) mental health and social wellbeing, (iii) health behaviors and self-care, and (iv) engagement and retention in healthcare and relationships with healthcare providers. Identify factors that both support and limit individuals’ chronic illness self-management after surgery and engagement and retention in healthcare for chronic illness management. This study will address a critical gap in the evidence on psychosocial development and health-related quality of life (HRQoL) of individuals with one or more chronic health conditions after major surgery, using an innovative design to identify trajectories of resilience.