The Teen Symposium: Engaging adolescents and young adults with sickle cell disease in clinical care and research.

Abstract

In the United States, sickle cell disease (SCD) is the most prevalent genetic disorder affecting African American and Hispanic youth. Disparities in care have been reported for this population with adolescents and young adults (AYA) with SCD at increased risk for poor health outcomes. It is essential that AYA with SCD receive high-quality care and have access to disease-modifying therapies, yet engaging them in their care and clinical research studies to discover new treatments remains a challenge. Method: Our team developed an innovative approach to engage AYA with SCD in clinical care and research: the SCD Teen Symposium, which uses motivational interviewing strategies to educate AYA with SCD, their family members, and friends while providing concurrent opportunities for research participation. Results: Over a 6-year period, 81 AYA with SCD (47% male; M age ϭ 14.58, SD ϭ 2.9) and 162 family and friends (48% male; M age ϭ 13.37, SD ϭ 2.1) participated. Participants rated the symposium as acceptable (M rating ϭ 1.74, SD ϭ 0.85) on a scale from 1 (excellent) to 5 (poor), and 72% reported they would recommend it to others. Research was rated as very important (M rating ϭ 1.21, SD ϭ 0.46) by 81% of attendees on a scale from 1 (very important) to 4 (not important), and 82% reported increased trust in research. AYA suggested improvements including separate programming for younger and older teens. Conclusions: Results support the feasibility of the Teen Symposium as a model for increasing trust and potentially increasing participation in research. Future studies will determine whether it can be disseminated by other SCD clinics. Implications for Impact StatementThis study describes a 1-day research and education event for adolescents and young adults with sickle cell disease, the Teen Symposium. After attending the symposium, teens reported more trust in research and that they would participate in research studies in the future.

Confronting Racism in All Forms of Pain Research: A Shared Commitment for Engagement, Diversity, and Dissemination

“…Some recent studies have demonstrated the principle of co-producing knowledge with patients with sickle cell disease (SCD), their caregivers, and other stakeholders (e.g., patient charities, service improvement experts) from the earliest planning stages (e.g., proposal development) before applying for funding so that stakeholders can be compensated for their time. 30,69 Patients with SCD can receive racialized care and pain treatment. 65,97,108 As such, this population provides a valuable illustration for pain scientists incorporating CBPR into their research.…”

Introduction to the special issue: Clinical approaches to address health disparities in pediatric psychology.

“…One key factor in pediatric health disparities continues to be variability in access to care (Larson, Cull, Racine, & Olson, 2016). Articles by Crosby, Strong, Johnson, and Mitchell (2020); Wihak et al (2020), and Christian-Brandt and Santacrose (2020) provide innovative strategies to increase access and deliver evidence-based care to diverse populations. Two of these articles (Crosby et al, 2020; Wihak et al, 2020) focus specifically on sickle cell disease (SCD).…”

“…Articles by Crosby, Strong, Johnson, and Mitchell (2020); Wihak et al (2020), and Christian-Brandt and Santacrose (2020) provide innovative strategies to increase access and deliver evidence-based care to diverse populations. Two of these articles (Crosby et al, 2020; Wihak et al, 2020) focus specifically on sickle cell disease (SCD). SCD disproportionately affects Black families (Lee, Smith-Whitley, Banks, & Puckrein, 2019).…”

“…SCD disproportionately affects Black families (Lee, Smith-Whitley, Banks, & Puckrein, 2019). Crosby et al (2020) developed an innovative approach to educate and engage youth with SCD while also providing opportunities for participation in research in their novel initiative, the SCD Teen Symposium. The SCD Teen Symposium uses a motivational interviewing (Miller & Rollnick, 1991) approach to educate and engage not only youth with SCD but also family members and friends.…”

“…Collectively, these articles challenge us to think outside the box and to be flexible in reaching those youth and families most in need of behavioral health services. Standard delivery systems and modalities, such as face-to-face clinic sessions, are changing and solutions that range from incorporating paraprofessionals (Barnett et al, 2020; Chacko et al, 2020; Coutinho et al, 2020) to the use of motivational enhancement for engagement in research (Crosby et al, 2020), to video-based interventions (Wihak et al, 2020) are described. Moreover, these studies provide insight into factors that we must address and consider in ensuring access to services for children and adolescents from racial, ethnic, and low-income backgrounds.…”