Background: The transition period from pediatric to adult care, generally occurring between 18 to 25 years of age, is challenging for the emerging adult with sickle cell disease (EA-SCD),and marked by increased morbidity and mortality rates. Reasons for this heightened vulnerability are multi-faceted, with a confluence of patient, provider, systemic, and disease related factors. These include among others, progressive organ involvement, evolution of chronic pain, varying levels of insurance coverage, paucity of adult providers, sub optimal patient education, advocacy, and engagement. To decrease the loss of EA-SCD health care engagement during this period, various health care transition (HCT) initiatives have been developed over the past 10 to 15 years. Our center is a large metropolitan urban program with such transition efforts; we designed our transition program after the ‘Triad’ model that includes a partnership between pediatric/adult providers, community-based organization (CBO), and patients. However, our pre-pandemic methods of in-person HCT education have now become outdated. In this pilot study (CREATE trial) we aim to evaluate EA-SCD's social media preferences and develop culturally responsive, patient-centric, digital HCT educational materials and delivery modalities to meet the current post-pandemic education needs and preferences of EASCD.
Methods: This study uses a sequential exploratory mixed methods design consisting of three phases. Phase I, consists of semi-structured, age-stratified, focus groups (N=4) to explore and identify EA-SCD concerns with transitioning to adult care and social media preferences for digital HCT education content creation and delivery. In Phase II, a survey (n=400) will further explore the themes and preferences identified under Phase I. In Phase III, using our findings from Phases I and II, we will develop digital content for the delivery of HCT education modules through social media and conduct a feasibility pilot among EA-SCD (N=40).
Results: Three age-based focus groups (16-18, 19-24 and 25-31 years of age) have been conducted under Phase I. one additional focus group was targeted at EAs and young adults who relocated to our metropolitan area and did not receive care in our partner pediatric institution. Phases II & III are currently in process. Early analysis of emerging themes from Phase I revealed that EA-SCD preferred short form videos on various platforms from TikTok to YouTube to consume HCT content. Recommendations for length of the videos were related to age, the younger the patients, the shorter the duration. For ESCD in the youngest age cohorts, the definition of ‘short form’ was 15 to less than 60 seconds with a recommended frequency one to two pieces of content per week (52-104/year). EA-SCD preferred the content be delivered by individuals living with SCD. In addition to short-form videos, older focus group respondents expressed a desire for longer, educational videos focused on various aspects of their living with the disease. The desired frequency of patient facing education and engagement content of once to twice per week, led to embedding Phase II survey questions regarding EA's receptivity on the use of technology to facilitate such content generation.
Conclusion: After Phase II, this study will provide an understanding of current social media use and preferences among EA-SCD of various ages, concerns that they have with transitioning to adult care, as well as their preferences for the content, format, and delivery of digital HCT education. Based on these findings, our content development team consisting of SCD providers, patient advisors, psychologists, and educators in partnership with Emory Center for Digital Scholarship will curate patient-centered, culturally responsive, and age-appropriate HCT educational modules. Phase III of our pilot will evaluate user engagement and satisfaction with these materials once created and lay the foundation for the development of a digital HCT education library repository.
No relevant conflicts of interest to declare.
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