Monday, May 12, 2025
5/12/2025
Collaborative Care to Improve Resilience and Quality of Life among Youth with Non-malignant Blood Disorders - Project Abstract Adolescents and Young Adults (AYAs) with blood disorders are at high risk of poor physical, emotional, and social quality of life. On average, they suffer from seven unique, chronic, distressing symptoms. Over 60% report insufficiently treated pain. AYAs with Sickle Cell Disease (SCD) are at particularly high-risk; their pain, anxiety, depression, and impaired social and cognitive function persist into adulthood. My central hypothesis is that AYAs with serious illness experience poor outcomes in part because the stressors of illness compound the stressors of development. The goal of my research program is to develop interventions to help AYAs navigate those stressors, in turn alleviating suffering and improving quality of life. To date, I have focused on the population of AYAs with cancer and been largely successful; I am currently the PI of 4 NCI R01-funded clinical trials testing the efficacy of a novel resilience coaching program for high-risk teens with cancer or their families. I am also committed to mentoring the next generation of scientists focused on improving the outcomes of youth with serious illness. I have been the primary research mentor for 21 trainees and early career faculty; all 21 remain involved in patient-oriented research at academic institutions. It is critically important to me to bolster the diversity of the research (and future mentor) workforce; for this reason, 100% of my mentees identify as women and/or under-represented in medicine (URiM). As a testament to this commitment and my skills, I received the “Excellence in Mentoring Women” award from the University of Washington in 2021. Here, I address 2 critical barriers to my continued success: First, few evidence-based psychosocial interventions are ever integrated in routine clinical care. I want to collaborate with clinicians and communities to implement my interventions. Second, Social Determinants of Health (SDOH) impact intervention-efficacy. I want to robustly collect SDOH and better address their impact on intervention efficacy. I will address these barriers via 3 specific learning objectives: (1) Enhance my skills in collecting and investigating SDOH; (2) Develop knowledge in Dissemination and Implementation Science, with a focus on community-based adaptation and engagement; and (3) Develop skills in using the Electronic Health Record (EHR) to assess SDOH and patient- centered outcomes; and 3 specific research aims: (1) Determine the feasibility and acceptability of a novel, community-based Collaborative Care Model to deliver the Promoting Resilience in Stress Management (PRISM) intervention among N=25 AYAs with sickle cell disease; (2) Leverage the electronic health record to characterize relationships between SDOH and outcomes among youth with non-malignant blood disorders; and (3) Examine relationships between SDOH and intervention efficacy using existing data from my R01-funded trials. These career development and research activities are significant because they will provide me and my mentees opportunities and skills to maximize the reach and impact of our interventions, in turn improving the physical, emotional, and social quality of life of patients and communities in need.
HHS’ Tracking Accountability in Government Grants System (TAGGS) website provides access to detailed descriptions of grants, loans, aggregated direct payments and other types of financial assistance awarded by the HHS Operating Divisions (OPDIVs) and the Office of the Secretary Staff Divisions (STAFFDIVs).