Sickle Cell Disease (SCD) is a chronic hereditary hemoglobinopathy with significant biomedical,
psychosocial, and socioeconomic consequences. Despite being one of the world’s most common
monogenic disorders, SCD remains underdiagnosed and undertreated, especially among tribal and
underserved communities in low- and middle-income countries, including India. Health-Related
Quality of Life (HRQoL) in individuals with SCD is profoundly influenced by pain crises,
comorbidities, access to health services, socioeconomic status, psychological resilience, and family
support. This narrative review synthesizes evidence from studies published between 2000 and 2024 to
examine determinants of HRQoL, awareness levels, and care practices associated with SCD. Findings
highlight persistent gaps in awareness, delayed diagnosis, inadequate access to therapies such as
hydroxyurea, and culturally rooted misconceptions that contribute to high morbidity and mortality.
Conversely, nurse-led education, newborn screening programs, community outreach, and structured
self-management interventions have shown promising results in improving outcomes. The evidence
underscores the urgent need for a holistic, integrated approach that combines biomedical treatment
with psychosocial support and community-based interventions. Nursing professionals can play a
pivotal role in screening, awareness creation, adherence counselling, and facilitating culturally
sensitive care—particularly in tribal and rural settings. Strengthening nursing and public health
systems is essential to reduce the burden of SCD and enhance the quality of life for affected
individuals and families.
Keywords: Sickle Cell Disease, Health-Related Quality of Life, Hydroxyurea, Pain Management, Tribal Populations,
Nursing Interventions, Community-Based Care, Self-Management, Newborn Screening, Integrated Care
Publication date: 01/08/2026
https://www.ijbpas.com/pdf/2026/August/MS_IJBPAS_2026_10425.pdf
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https://doi.org/10.31032/IJBPAS/2026/15.8.10425