Patient insights research exploring disease awareness, patient life experience, and current management of visceral leishmaniasis in Bihar, India
Authors: Sundar Shyam , Alves Fabiana , Ritmeijer Koert , den Boer Margriet , Forsyth Colin , Hughes Bethan , Zamble Clare , Carter Kirsten , Angyalosi Gerhild 
Published: July 2024

Background

Visceral leishmaniasis (VL) is a vector-borne disease caused byLeishmaniaparasites and transmitted by sand fly bites, targeted for elimination in India. VL primarily affects rural, low-income populations with limited health care access. In South Asia, few studies have explored patients’ perspectives, diagnoses, and treatment experiences, and how these experiences influence their expectations about treatment.

Methodology/principal findings

A qualitative study was conducted in Bihar, India, using moderator-facilitated, protocol-defined discussion. Eighteen adult patients and 12 caregivers of children diagnosed with and treated for VL within the last 12 months were identified by self-report. Mean time from symptom onset to diagnosis was 13.8 days. Challenges of the patient life experience included lack of urgency by health care professionals, delayed diagnosis, and unavailability of current standard-of-care therapy where a patient receives their diagnosis (63% switched to a different center for treatment, at times delaying treatment). Key barriers include out-of-pocket financial burden, absence from work/home duties, and long-distance travel to hospitals. Patients expressed a preference (29/30) for a potential oral treatment that could be taken close to home over the current standard of care (infusions/injections in clinics).

Conclusions/significance

This study reveals new insights and confirms previous research showing access to care for patients with VL in the Bihar area remains a challenge. Although most patients with VL seek care early, diagnosis often requires multiple visits to a health care facility. Despite access to therapy in public hospitals, a substantial number of patients prefer private clinics. Even in public locations, many patients need to move from the diagnostic center to another center to receive therapy, creating an additional burden for patients. As a potential alternative to current parenteral treatment, oral therapy would be preferred by adult patients and caregivers of pediatric patients and may reduce barriers to access to care.

AUTHOR SUMMARY

This is an interview-based investigation of patient awareness, experience, and individual challenges for adults and caregivers of children seeking diagnosis and effective care for visceral leishmaniasis (VL) in rural districts of Bihar, India. Patients’ descriptions of their health experiences revealed obstacles at every stage, including limited information about the illness at the community level, financial burdens associated with loss of work, and cost of travel to seek diagnosis. Although our study was subject to recall bias, it elicited insights from the patients’ own experiences and revealed deterrents and burdens that may not have been visible otherwise. Our study also found that most patients would prefer a potential oral treatment for VL over the current parenteral–based standard of care. This patient-driven approach of identifying unmet needs and potential gaps in public health access can be useful in furthering the aims of the National Elimination Program for VL in India and in other areas with endemic VL, particularly those planning to introduce elimination programs.