Understanding the knowledge gaps and barriers to vaccination among patients with sickle cell disease in India

Abstract Objectives Infections remain a leading cause of mortality in patients with sickle cell disease (SCD) due to increased exposure to pathogens, malnutrition, and lower vaccination rates. This survey assessed infection risk awareness and identified knowledge gaps and barriers to vaccination among Indian patients with SCD. Methods A cross-sectional survey was conducted (between November 2023 and April 2024) in patients (aged 3-65 years) using a 6-domain questionnaire: (1) patient demographic and clinical characteristics; (2) level of awareness about infections; (3) surgical splenectomy; (4) awareness of vaccines; (5) awareness of the importance of vaccination, nutrition, hygiene, and the use of antibiotics; and (6) vaccines recommended by doctors. Participants were recruited through convenience sampling, with the inclusion criteria requiring a willingness to participate, a confirmed SCD diagnosis, and the ability to sign the electronic informed consent. The ethics committee approved the study. Results Out of 500 participants, 201 respondents participated in the study. The majority (85.1%) of participants were aware of the increased risk of severe infections with SCD, but only 22.4% knew about pneumococcal infections and associated complications. Approximately 45.8% of the respondents had been hospitalized due to pneumonia or other respiratory tract infections, emphasizing the seriousness of these complications. A significant portion of the respondents were unfamiliar with vaccines for meningococcal disease (82.6%), hepatitis B (67.2%), pneumococcal disease (73.1%), and influenza (72.1%). Conclusion The survey identified significant knowledge gaps in understanding the risk of infection and the role of vaccination among patients with SCD in India, contributing to vaccine hesitancy.