For the growing population of adolescents and young adults (AYAs) with pediatric heart disease, survival comes at a cost. Many of these patients remain at risk for premature death, nearly all of which occur in intensive care units and in the setting of highly invasive efforts using technological interventions, despite a preference among AYAs to die in home or hospice settings. Given the unpredictable nature of heart disease, AYAs may suddenly reach health crises without ever having explored their preferences. Despite growing acknowledgement of the importance of AYA input in their care, the decision making preferences and current level of medical decision making involvement of AYAs with advanced heart disease are unknown. The overall objective of this proposal, which responds to PA-15-325, is to characterize the medical decision making preferences and decision making involvement of AYAs with advanced heart disease. Our rationale is that we must first understand their preferences and level of decision making involvement, as well as determine factors associated with decision making involvement to inform the timing, targets, and potential outcomes of future interventions. The scientific premise is that AYAs prefer greater medical decision making involvement than their parents perceive. It is further hypothesized that a lack of medical decision making involvement is associated with poorer adherence, health-related quality of life, and healthcare satisfaction.
Aims i nclude: 1) To characterize the medical decision making preferences and decision making involvement of AYAs with advanced heart disease, 2) To test the hypothesis that older AYA age and greater time since diagnosis is associated with preferences for a more active role in medical decision making and higher level of involvement in a recent decision related to heart disease management, and 3) To test the hypothesis that increased AYA involvement in a recent decision related to heart disease management is associated with better health-related quality of life, treatment adherence, and overall healthcare satisfaction.
Aims will be accomplished via a cross- sectional, quantitative survey study with 46 participating AYAs with advanced heart disease and one parent/caregiver. It is expected that this study will inform the development of clinical practice guidelines and future intervention studies to promote improved communication about medical decision making with AYAs at risk of premature heart disease related-death and high rates of intensive care at end of life. This research is significant to public health as it is likely to result in higher quality, patient-centered care with reductions in unnecessary or unwanted costly technical interventions for a growing population of young people. Our long- term goal is to build upon this proposal with the development of an evidence-based, multi-site intervention study to increase AYA decision making involvement throughout the heart disease course with longitudinal investigation of its impact on health-related and end of life outcomes.
The Institute of Medicine recently highlighted a critical need to better understand and increase the medical decision making involvement of adolescents and young adults (AYAs) with serious illnesses across their disease trajectory and as they approach end-of-life. Given the unpredictable nature of advanced heart disease, AYAs may suddenly experience life-threatening health crises without ever having explored their preferences and wishes. Increased understanding of the medical decision making preferences and involvement of the rapidly growing population of AYAs living with advanced heart disease will result in higher quality, patient- centered care with likely reductions in unwanted and costly technical interventions and hospitalizations.
