<p>Sickle Cell Disease (SCD) presents a major public health burden in India, particularly among tribal communities. This scoping review synthesizes evidence from the past decade to identify a few key challenges in the screening, treatment, and management of SCD. Initially, 219 studies were screened, and 26 studies met the inclusion criteria. Thematic analysis revealed systemic obstacles across all domains. Screening efforts are hindered by inadequate infrastructure, low awareness, stigma, and inconsistent coverage, especially in remote regions. Treatment barriers include poor access to hydroxyurea, lack of trained providers, and reliance on traditional medicine due to cost and accessibility. Management is further complicated by irregular follow-up, weak referral systems, limited community engagement, and socio-economic constraints. Despite national initiatives, fragmented implementation and the absence of culturally sensitive, data-driven strategies have curtailed impact. This review highlights the urgent need for policy reforms focused on improving diagnostics, expanding community-based care, strengthening healthcare workforce capacity, and integrating digital health systems. A holistic, community-centered, and equity-driven approach is essential to address persistent gaps and improve outcomes for adults living with SCD in India.</p>

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Unveiling adult sickle cell disease challenges in India: a scoping review of screening, treatment, and management

  • Sarbasree Bhattacharjee,
  • Jarina Begum,
  • Syed Irfan Ali,
  • Ranjitha S. Shetty

摘要

Sickle Cell Disease (SCD) presents a major public health burden in India, particularly among tribal communities. This scoping review synthesizes evidence from the past decade to identify a few key challenges in the screening, treatment, and management of SCD. Initially, 219 studies were screened, and 26 studies met the inclusion criteria. Thematic analysis revealed systemic obstacles across all domains. Screening efforts are hindered by inadequate infrastructure, low awareness, stigma, and inconsistent coverage, especially in remote regions. Treatment barriers include poor access to hydroxyurea, lack of trained providers, and reliance on traditional medicine due to cost and accessibility. Management is further complicated by irregular follow-up, weak referral systems, limited community engagement, and socio-economic constraints. Despite national initiatives, fragmented implementation and the absence of culturally sensitive, data-driven strategies have curtailed impact. This review highlights the urgent need for policy reforms focused on improving diagnostics, expanding community-based care, strengthening healthcare workforce capacity, and integrating digital health systems. A holistic, community-centered, and equity-driven approach is essential to address persistent gaps and improve outcomes for adults living with SCD in India.