Development of an Age-Appropriate, Multi-Media Educational Digital Hub for Adolescents with Sickle Cell Trait

All states in the US require hemoglobinopathy testing as part of the newborn screen. This leads to incidental identification of individuals with sickle cell trait (SCT). Little is known about the retention of SCT knowledge from initial disclosure during infancy into adolescence. Adolescence is a crucial developmental period as the responsibility for health care is shifting from parent to adolescent; it’s an important time to solidify knowledge of a patient’s medical history and needs. Ideally, communication about SCT between physicians and patients should occur across the lifespan. An ongoing dialogue allows for updates about the growing list of medical complications associated with SCT and facilitates informed reproductive decisions for adolescents and young adults (AYAs). Since the majority of individuals with SCT in the US are Black or Hispanic, failure to adequately communicate about SCT may contribute to existing health inequities. Few studies have explored SCT knowledge, disclosure experiences, and AYAs’ desires for information about SCT. Few educational resources specifically target AYAs with SCT. Here we report on a qualitative study assessing AYAs’ experience learning about SCT and the collaborative development of a digital hub of educational content created specifically for AYAs.

Qualitative Interview Methods

In this IRB-approved qualitative study we enrolled English-speaking AYAs with SCT, aged 15-21 years (n=15), and caregivers of AYAs with SCT (n=16). They completed semi-structured one-on-one interviews. Participants received gift card compensation. Interviews were recorded, transcribed, and analyzed by two researchers using a modified grounded theory approach.

Experiences of Learning about SCT and Desire for Information Delivery

The majority of participants identified as Black or bi-racial. Three identified as Hispanic. Twenty-one had a relative with sickle cell disease.

Almost all AYAs learned their SCT status from their families with few ever-having discussed SCT with a physician. AYAs overwhelmingly desired reliable education about SCT from their pediatrician and/or from a trustworthy online source. On-line content was desired in small chunks, video and graphic formats, without large bodies of text, and not buried within content about sickle cell disease. Specific topics desired included racial distribution of SCT, inheritance patterns, reproductive planning, and potential medical complications surrounding sports participation and altitude.

Collaboration with SCT Advisory Panel and Development of a Digital Hub of Educational Content

An advisory panel of AYAs with SCT and their caregivers was created. The panel was compensated for their time. The SCT advisory panel met multiple times with a multi-disciplinary team including a pediatric hematologist, genetic counselor, psychologist, and medical editors and designers from Nemours’ KidsHealth®, the most viewed site for dependable medical information on children’s health. Findings from qualitative interviews were reviewed with the panel who then provided input on topics, format, layout, and overall appearance of the content to be created. In collaboration with the panel, we developed a collection of educational materials accessed through a digital hub publicly accessible on Nemours’ KidsHealth®. Visitors can select content through a central webpage dedicated solely to SCT that houses six 1-2 minute videos, an infographic, 10 short articles, and a FAQ section. Special attention was made to using language accessible for adolescents. The advisory panel was satisfied with content before the Sickle Cell Trait Topic Center was published (https://kidshealth.org/en/teens/center/sickle-cell-trait.html).

Discussion

Adolescents with SCT have gaps in knowledge about SCT, desire conversations about SCT with their pediatricians, and desire information about SCT on trustworthy on-line sources. In collaboration with a SCT advisory panel, we developed a trustworthy on-line hub of dedicated educational materials for AYAs with SCT. We are currently conducting a pilot study of the on-line hub and its effect on AYA knowledge of SCT. Equitable healthcare for AYAs with SCT requires providing accurate and accessible education about SCT in ways they desire. Engaging in age-appropriate education prior to transition to adult medicine as through a dedicated on-line hub is one step toward delivering equitable care.