Sickle Cell Disease (SCD)-Related Stigma Among Indian SCD Patients - Findings of a Multicentric Study

Background: Sickle Cell Disease (SCD) is the most prevalent hemoglobinopathy, affecting approximately 5% of the global population. Within India, the tribal population has been a primary focus of the national SCD program. Due to increased SCD-related awareness, SCD patients and their caregivers in these communities often face health-related stigma due to the multifaceted impact of the disease.

Methodology: This study was implemented in five tribal-dominated districts of India and initiated with exploratory qualitative data, followed by the development of an SCD-related stigma scale and measuring the stigma using the developed scale. In addition, the impact of stigma on Health-Related Quality of Life (HRQoL) and health care utilization. Initially, the study's framework for developing the stigma tool was rooted in Bronfenbrenner's Ecology of Human Development. Subsequently, quantitative surveys were conducted to measure the SCD-related stigma, HRQoL, which was measured through the Medical Outcome Study (MOS) 36-item short-form health survey (SF-36) for adult patients, SCD module and Family Impact Module (FIM) of Pediatric Quality of Life Inventory (PedsQL) for SCD pediatric patients and healthcare-seeking behavior of these patients and caregivers.

Results: The study identified four themes and several subthemes explaining the nature of stigma, its sources, and contributing factors. These themes - (i) perceived stigma, encompassing elements such as disclosure, self-isolation, and self-judgment; (ii) internalization of stigma; (iii) experienced stigma, specifically the impact of the disease on daily life; and the support systems required by patients. The framework underscored the varying degrees of stigma in different aspects of patients' lives and environments. The study also found a considerable negative impact of stigma on HRQoL. Healthcare-seeking behavior is also impacted due to stigma as well as health system-related factors. Poor treatment-seeking behavior is reported, and many patients have not sought appropriate SCD-related treatment, and a considerable number of patients did not report regular hydroxyureas therapy.

Conclusion: Our study, for the first time from India, measured the SCD-related stigma among SCD patients and their caregivers. As the national SCD program has been initiated and implemented in the primary health care system, these findings have considerable implications. Awareness generation activities and preventive measures are to be implemented by taking the stigma and its impact into consideration.

No relevant conflicts of interest to declare.