Personal, Social, Economic Impacts on Haemophilia A Patients and Caregivers: A Mixed Method Study (WE CARE)

Haemophilia is a bleeding disorder with implications beyond clinical symptoms, affecting patients' and caregivers' personal, social, and economic well-being and quality of life. Limited data exist from low- and middle-income countries like India, where access to care and societal awareness may differ significantly from high-income settings. We aimed to explore the personal, social, and economic impacts of haemophilia on persons with haemophilia (PwH) and their caregivers in India, using a mixed-method approach.

This multicentric, mixed-method study included semi-structured in-depth interviews with 30 participants (15 PwH A - (Non-inhibitor) and 15 caregivers). Transcribed interviews were analysed using grounded theory, and participants also completed the EQ-5D-5L and EQ-VAS instruments. Data were analysed using descriptive statistics and thematic analysis to identify key burden areas RESULTS: Ten themes emerged, including PwH-specific (chronic pain, disrupted education/employment, strained relationships), caregiver-specific (coping with diagnosis, social isolation), and shared challenges (financial burden, stigma, limited treatment access). The grounded theory of Transformative Resilience described coping strategies of PwH and caregivers. EQ-5D-5L showed greatest impairment in mobility (2.47 ± 0.92), with mean utility and VAS scores of 0.678 ± 0.280 and 0.630 ± 0.206, indicating moderate-to-severe QoL compromise.

Haemophilia profoundly affects patients and caregivers, extending beyond physical symptoms to social, emotional, and economic challenges. The study underscores unmet needs arising from financial burden, stigma, and limited resources, emphasizing the need for patient-centred, holistic care models that integrate medical, psychosocial, and economic support in resource-limited settings.