Celebrating Diversity Within the Sickle Cell Community: Commitment, Innovation, Practice
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Saturday, October 13 • 9:00am - 9:15am
The Beats Program: Sickle Cell Health Education Through Music Therapy

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Mr. Samuel Rodgers-Melnick- University Hospitals Connor Integrative Health Network

Objective: At University Hospitals Seidman Cancer Center, a music therapist working with the Adult Sickle Cell Disease (SCD) team developed the BEATS (Build, Educate, Advance, Transition, in Sickle cell disease) Music Therapy Program as part of a multidisciplinary SCD clinic to address self-efficacy, SCD knowledge, and adherence in young adults with SCD. Music therapy is the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program. Music therapy is an established health profession in which music is used within a therapeutic relationship to address physical, emotional, cognitive, and social needs of individuals (American Music Therapy Association [AMTA], 2018, para 1 and 2). Preliminary research in young adults with SCD age 18-23 revealed that participants in the BEATS program demonstrated significant improvements in SCD knowledge as well as slight improvements in adherence to Adult SCD Clinic appointments as compared to baseline (Rodgers-Melnick et al., 2017). Participants’ feedback from this preliminary study also indicated areas for improvement. These areas included more flexible scheduling options, providing multiple small groups per month instead of one large group, administering study measures electronically, and coordinating sessions with patients’ existing clinic appointments. This study sought to implement these improvements and further investigate the effects of the BEATS program on the self-efficacy, trust, disease knowledge, and adherence in young adults with SCD.
Methods: 50 young adult patients age 18-35 with SCD, including homozygous HbSS and compound heterozygous HbSC, HbSb+thal, or HbSb0thal, were recruited from the Adult SCD Clinic at UH Seidman Cancer Center/UH Cleveland Medical Center. Participants were scheduled to come to the hospital once every 2-3 weeks to participate in BEATS sessions, sometimes in conjunction with prescheduled SCD clinic appointments. Multiple small group sessions of up to 5 participants were scheduled every week to allow participants the flexibility to choose the sessions that best fit their availability. Participants were asked to participate in eight BEATS visits over an 8-month period. BEATS sessions included instrumental improvisation and educational music therapy interventions targeting the following topics: medication management skills, SCD pathophysiology, understanding severe symptoms of SCD, pain management, communication in the emergency room, blood transfusions, and reproductive health. The educational interventions included video presentations from hematologists, nurses, psychiatrists, physical therapists, transfusion coordinators, and other staff who work with adults with SCD. Additionally, the music therapist led practical hands-on demonstrations of health concepts and fill-in-the-blank songwriting exercises to reinforce the health information presented in the session.
Self-efficacy (Sickle Cell Self-Efficacy Scale), trust (Wake Forest Trust in the Medical Profession Scale), and SCD knowledge (Seidman Sickle Cell Knowledge Quiz) were measured via an electronic REDCap survey at five time points: 1) prior to BEATS sessions at baseline, 2) immediately following the fourth session, 3) 4 weeks after the fourth session, 4) immediately following the last session, and 5) 4 weeks after the last session. Health care utilization and adherence to scheduled Adult SCD Clinic appointments and certain medications were measured regularly throughout the study via medical record review. Participants also provided written evaluations of the BEATS program after the fourth and last sessions.
Results: Preliminary results suggest that the BEATS program improved SCD knowledge in the cohort of young adults that participated in this study. The modifications implemented as a result of participants’ feedback from an earlier study of the BEATS program led to improved attendance, coordination with clinic appointments, group cohesion, and study measure completion as compared to the previous study. Participants’ evaluations revealed positive responses to the BEATS program focusing on the importance of learning from others, finding social support, learning more about SCD, and learning new ways to manage pain. Responses also indicated further ways to improve the BEATS program that include having guest speakers, holding more groups, inviting more patients, and providing food and assistance with transportation/parking.
Final data on changes from baseline in self-efficacy, trust, SCD knowledge, and adherence are currently pending completion of follow up data in September 2018. These results will be shared in publications and presentations at upcoming conferences.
Conclusions: For individuals with SCD, young adulthood presents multiple physical, psychological, social, and economic challenges associated with living with the acute and chronic symptoms of SCD and navigating the adult health care environment. In response to these real and perceived needs of young adults with SCD, we designed a multidisciplinary program to engage patients in music therapy as a means of improving self-efficacy, trust, and knowledge as well as assisting patients in navigating the health care system. Preliminary data from this study continue to support the utility of the BEATS program as a means of improving SCD knowledge and the experience of care. Modifications implemented in response to participants’ feedback on previous programming were effective in improving session attendance and program feasibility. New educational interventions developed for this study were well received by participants. Ultimately, the BEATS program is a valuable tool for providers and community-based organizations seeking engaging and culturally-relevant interventions to improve the quality of care for young adults with SCD.

avatar for Samuel Rodgers-Melnick

Samuel Rodgers-Melnick

Music Therapist, University Hospitals Connor Integrative Health Network

Saturday October 13, 2018 9:00am - 9:15am EDT
Constellation CD