Illness Perception and Stigma Among Children and Adolescents with Sickle Cell Disease

• Published in: Blood 2023-11, Vol.142 (Supplement 1), p.5118-5118
• Main Authors: Winkler, Savannah, King, Kathryn, Liem, Robert I., Holl, Jane, Badawy, Sherif M.
• Format: Article
• Language: English
• ISSN: 0006-4971; 1528-0020
• DOI: 10.1182/blood-2023-190320

Background: Stigma and illness perceptions surrounding adolescents and young adults (AYA) with sickle cell disease (SCD) are not well-studied. The psycho-social and emotional factors may have implications on overall patient-reported outcomes, including health-related quality of life (HRQOL) and medication adherence behavior. Aims: (1) Evaluate the impact of patients' perceptions of SCD and their medications on HRQOL and adherence (2)Examine the relationship of illness perception and stigma among AYA with SCD Methods: In this longitudinal, single-institution study, 68 participants were enrolled from outpatient hematology clinic at Lurie Children's Hospital of Chicago. Patients were approached if they were between 10 to 25 years old, English-speaking, and taking hydroxyurea, voxelotor and/or crizanlizumab for SCD treatment. Participants completed the Brief-Illness Perception Questionnaire (B-IPQ), Patient Reported Outcomes Measurement Information System (PROMIS) HRQOL Domains, Measure of Sickle Cell Stigma Questionnaire (MoSCS), Visual Analogue Scale (VAS) and Adherence to Refills and Medications Scale 7 (ARMS-7) every 3-4 months. Patient statistics were evaluated utilizing Wilcoxon (Mann-Whitney) rank sum tests, spearmen rho correlations (r s), and chi-square analysis. The data presented in this abstract represent baseline analysis for all enrolled, active study participants. Results: Sixty-eight participants completed study assessments (90% Black; 53% Female) with a median age of 14 years old (IQR 11-17) and 84% HbSS, homozygous hemoglobin S. In Table 1, patients with less perceived personal control of SCD and more emotional response to SCD reported worse social isolation (r s= -0.32, p=0.01; r s =0.31, p