Sundar Shyam, Alves Fabiana, Ritmeijer Koert, den Boer Margriet, Forsyth Colin, Hughes Bethan, Zamble Clare, Carter Kirsten, Angyalosi Gerhild
Institute of Medical Sciences, Banaras Hindu University, Varanasi, India.
Drugs for Neglected Diseases Initiative, Geneva, Switzerland.
PLoS Negl Trop Dis. 2025 Feb 25;19(2):e0012326. doi: 10.1371/journal.pntd.0012326. eCollection 2025 Feb.
Visceral leishmaniasis (VL) is a vector-borne disease caused by Leishmania parasites 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; particularly lacking an understanding about the patients' life experiences outside of clinical research settings.
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 early patient life experience included lack of urgency by health care professionals, delayed diagnosis, and no guarantee of treatment at the location of their VL diagnosis (63% had to switch to a different center for treatment, at times delaying treatment). Key barriers identified in previous studies that were re-confirmed in this study include out-of-pocket financial burden, absence from work/home duties, and long-distance travel to hospitals. Patients and caregivers (n = 29/30) expressed a preference for a potential oral treatment that could be taken close to home.
CONCLUSIONS/SIGNIFICANCE: This study reveals new insights about the patient life experience and reconfirms previous research indicating that 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, some patients reported a preference for private care. Even if diagnosis takes place in a government-funded public setting, some patients reported needing to move from the location of diagnosis to another center to receive therapy, creating an additional burden for patients. As a potential alternative to current parenteral treatment, adult patients and caregivers of pediatric patients expressed interest in a potential oral therapy because it may reduce barriers to access care.
内脏利什曼病（VL）是一种由利什曼原虫寄生虫引起的媒介传播疾病，通过白蛉叮咬传播，印度已将其列为消除目标。VL主要影响农村低收入人群，他们获得医疗保健的机会有限。在南亚，很少有研究探讨患者的观点、诊断和治疗经历；尤其缺乏对临床研究环境之外患者生活经历的了解。
方法/主要发现：在印度比哈尔邦进行了一项定性研究，采用主持人引导、协议定义的讨论方式。通过自我报告确定了18名成年患者和12名在过去12个月内被诊断并接受VL治疗的儿童看护人。从症状出现到诊断的平均时间为13.8天。患者早期生活经历面临的挑战包括医疗保健专业人员缺乏紧迫感、诊断延迟以及在VL诊断地点无法保证得到治疗（63%的患者不得不转到不同的中心接受治疗，有时会延误治疗）。本研究再次证实了先前研究中确定的关键障碍，包括自付费用的经济负担、无法工作/履行家庭职责以及前往医院的长途跋涉。患者和看护人（29/30）表示倾向于一种可以在家附近服用的潜在口服治疗方法。
结论/意义：本研究揭示了关于患者生活经历的新见解，并再次证实了先前的研究，表明比哈尔地区VL患者获得护理仍然是一项挑战。尽管大多数VL患者会尽早寻求治疗，但诊断通常需要多次前往医疗保健机构。尽管公立医院可提供治疗，但一些患者表示更倾向于私立医疗。即使诊断是在政府资助的公共机构进行，一些患者报告说需要从诊断地点转到另一个中心接受治疗，这给患者带来了额外负担。作为当前肠胃外治疗的一种潜在替代方法，成年患者和儿科患者的看护人对一种潜在的口服疗法表示感兴趣，因为它可能会减少获得护理的障碍。
