A Vision of Hope: Integration of Palliative Care in Chronic Pediatric Diseases

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DESCRIPTION (provided by applicant): Under the broad challenge area (04) Clinical Research, this proposal is directly responsive to the following specific challenge topic: 04-NR-102* Methods to Enhance Palliative Care and End-of-Life Research This initiative will develop and test interventions to enhance the quality of care for persons with a life-threatening illness. This research will provide the foundation for the development of evidenced-based guidelines to standardize palliative and end-of-life care. Children, adolescents and young adults are not supposed to get seriously ill or die, but when they do, their lives and their families are forever changed. In addition to the physical challenges faced by young people with chronic, life-threatening diseases, the unpredictability and life- limiting nature of many of these diseases raise significant emotional, spiritual and social difficulties for affected individuals and their families, and create special challenges for the health care team. Too often, a fragmented health care delivery system and lack of support systems add to the distress. These challenges are particularly salient in the context of diseases that, at least currently, have no curative treatments. The absence of a cure can result in a loss of hope. This proposal is designed to improve the quality of care, and instill a new vision of hope, for adolescents, young adults and families affected by chronic, life-threatening diseases by integrating the principles and practices of palliative care into the training of the clinicians who care for them. This project is specifically focused on two genetic conditions, Duchenne Muscular Dystrophy (DMD) and Sickle Cell Disease (SCD). Although there are significant differences between these conditions, both are life-threatening and life-limiting and are therefore highly amenable to palliative care. Improved technologic and medical interventions have significantly increased the life expectancy of affected individuals but this has created new challenges with regard to transitioning patients from pediatric to adult care clinicians and settings. The specific aims of our project are to (1) understand the lived experiences and unmet needs of adolescents and young adults with these chronic, life-threatening diseases, and the impact of caring for these populations on interdisciplinary teams of clinicians; and (2) enhance the integration of palliative care principles and practices through the training of interdisciplinary professionals, patients and families. We will accomplish these aims in three phases. First, we will develop and/or modify documentary training videos based on interviews with patients, families and the clinicians who care for them. Second, we will adapt an existing training program that incorporates palliative care principles in the delivery of care for these two populations. Finally, we will compare/assess the efficacy of two different training interventions in improving clinician attitudes and behaviors, and patient experiences, with respect to several components of palliative care. This project is likely to have significant impact on reducing the attitudinal and systemic barriers to the integration of comprehensive palliative care. Our results will inform the refinement of educational and practice guidelines with regard to the integration of palliative care principles into DMD and SCD care as well as its application to other life-limiting chronic conditions, and result in long term improvements in the delivery of quality health care for young people with chronic disease. This proposal is designed to improve the quality of care, and instill a new vision of hope, for adolescents, young adults and families affected by Duchenne Muscular Dystrophy (DMD) and Sickle Cell Disease (SCD), two of the most common chronic, inherited, life- threatening diseases, by integrating the principles and practices of palliative care into the training of the clinicians who care for them.