Patient insights research exploring disease awareness, patient life experience, and current management of visceral leishmaniasis in Bihar, India

by Sundar S, Alves F, Ritmeijer K, den Boer M, Forsyth C, Hughes B, Zamble C, Carter K, Angyalosi. PLOS Neglected Tropical Diseases 2025,19(2):e0012326. doi: 10.1371/journal.pntd.0012326.

Summary: Few studies have explored the perspectives of patients affected by visceral leishmaniasis (VL), particularly their experiences outside of clinical research settings. The authors of this qualitative study of 18 adult patients and 12 caregivers of paediatric patients in Bihar, India used moderator-facilitated, protocol-defined discussions to reveal obstacles to access to care. Challenges included a lack of urgency by health care professionals, delayed diagnosis, and no guarantee of treatment at the place they were diagnosed (63% were treated at a different centre). Mean time from symptom onset to diagnosis was 13.8 days. Patients and caregivers (n = 29/30) expressed interest in a potential oral therapy that could be taken close to home, because it might reduce barriers to accessing care.

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