SMYLS: A Self-Management Program for Youth Living with Sickle Cell Disease

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The long-term objectives of this K23: Mentored Patient-Oriented Research Career Development Award are to develop the candidate, Dr. Shannon Phillips, into an independent investigator and prepare her to lead large, rigorously designed, randomized clinical trials with the goal of improving symptoms self-management in children, adolescents, and young adults with sickle cell disease (SCD) and their families. Individuals with SCD often live with burdensome symptoms, such as acute and chronic pain and fatigue. Further, as children with SCD transition into adolescence and adulthood, comorbidities and rates of healthcare utilization increase. Scalable self-management interventions that promote preventive care and reduce comorbidities are critical to improving symptom and self-management, quality of life, and healthcare utilization, consistent with the mission of the National Institutes for Nursing Research. The proposed career development plan was developed with Dr. Teresa Kelechi, primary mentor, and the candidate's mentorship team of experts in communication, technology, statistics and chronic conditions in special populations. The plan builds on the candidate's previous clinical nursing, educational, and research experience to accomplish the following training-specific aims: 1. Develop expertise in designing interventions to facilitate symptom and self- management; 2. Attain skills and knowledge to conduct rigorous, randomized clinical trials; 3. Enhance knowledge of applying mHealth strategies to reach special populations; 4. Further develop skills as a scholar, including developing and sustaining collaborative, interdisciplinary relationships; and 5. Develop a sustainable program of research with funding as an independent nurse scientist. Goals will be accomplished through the following training methods: one-on-one, hands-on experience with mentors; participation in local and national conferences, workshops, and institutes; and formal coursework. Outcomes of training will include published manuscripts relevant to the application topic, presentations at local and national conferences, and an NIH R01 submission. The candidate will apply skills obtained during training to the conduct of a pilot study to assess the feasibility of an mHealth intervention for facilitating self-management behaviors in adolescents with SCD. Estimates of variability for measures of transition readiness, physical and psychological symptoms, healthcare utilization, and quality of life will also be obtained. A key focus of the intervention will be on patient-provider communication effectiveness pertaining to self-management development. Training activities and research will take place at a research-intensive institution with extensive resources devoted to early career investigators, including those offered via the CTSA, such as the Technology Applications Center for Healthful Lifestyles and the Special Populations Program. At the conclusion of this award, the candidate will have strong pilot feasibility data and necessary training to be well-positioned to pursue career goals including NIH- funding and a research trajectory in symptoms self-management.