SCD and COVID-19 Vaccines: What Do Pediatric Patients Want to Know?
Authors: Shook Lisa M , Lang Amy , King Allison A. , Smith-Whitley Kim , Thompson Alexis A. , Barriteau Christina M , Schwartz Lisa , Mosely Cami , Oke Eniola , Jallow Fatoumatou , Crosby Lori E. 
Published: December 2023

Introduction: Recent polls reported that only 49% of adults plan to receive a COVID-19 vaccine, while 31% reported being uncertain and 20% reporting they would not receive a vaccine citing safety as a major concern. There are disparities related to intention to receive a vaccine with 56% of whites, 25% of Blacks, and 37% of Hispanics citing they would receive a vaccine. Individuals living with sickle cell disease (SCD) were noted to be an at-risk population for higher morbidity and mortality with COVID-19 infection. Health disparities in COVID-19 outcomes could become exacerbated if racial and ethnic minorities like those with sickle cell disease (SCD) are less likely to receive a vaccine. While polls provide insight into the public's intention to receive COVID-19 vaccines, most of them include only adults. Further, there are limited empirical data on what influences people's intent to get vaccinated. Thus, there is a need to examine educational needs and preferences with respect to COVID-19 vaccines among adolescents and young adults with SCD and caregivers of children with SCD. This research is significant because it is essential to developing targeted educational interventions to promote COVID-19 vaccine uptake in pediatric patients with SCD.
Methods: We conducted N=17 qualitative interviews with parents/caregivers (N=6), young adults 18 years and older (n=8), and adolescents ages 12-17 years (n=3) receiving care at one of two sickle cell centers in the US. After achieving thematic saturation, a directed content analysis approach was used to code interview data into themes related to four categories: a) COVID-19 vaccine concerns; b) key influencers for decision-making about COVID-19 vaccines; c) sources of trustworthy COVID-19 vaccine information; and d) preferred methods of receiving COVID-19 vaccine information. Two authors independently coded all the transcripts (AL, CM), and a third author served as a reliability coder. To promote rigor, interrater reliability was assessed (&gt;90%) and themes were reviewed with clinical staff and patients (member checking).
Results: Participants' top COVID-19 vaccine concerns were side effects and that they are understudied in sickle cell disease. Key influences for getting the vaccine included healthcare provider recommendation, a desire to increase protection and decrease worry, and the ability to return to normal activities. Sources of trustworthy information included the healthcare team, reputable websites (e.g., CDC) and personal recommendations. Preferred methods were talking directly with and asking follow-up questions to their hematology team and vaccine experts. Least preferred methods included the media and conducting one's own research which some found overwhelming. Using an iterative design process, themes were then converted into educational interventions which will be featured in this poster (e.g., patient vaccine question cards, expert videos, and provider scripts).
Conclusions: Study results support that educational efforts about COVID-19 vaccines for pediatric patients with SCD should involve the hematology team who is viewed as a trustworthy source of information. Given vaccine concerns, teams may benefit from tools that help them foster conversations about vaccine protection and specific data about SCD and the vaccines. Results further indicate that clear and concise information about COVID-19 vaccines presented in a variety of formats (e.g., expert videos, websites) may be beneficial.