Putri Annisa Ika, Peters Ruth M H, De Sabbata Kevin, Mengistu Brittney S, Agusni Regitta I, Alinda Medhi Denisa, Darlong Joydeepa, Listiawan M Yulianto, Prakoeswa Cita R S, Walker Stephen L, Zweekhorst Marjolein B M
Faculty of Science, Athena Institute, VU University Amsterdam, Amsterdam, The Netherlands.
Department of Dermatology and Venerology, Faculty of Medicine, Universitas Airlangga, Dr. Soetomo General Academic Hospital, Surabaya, Indonesia.
BMC Health Serv Res. 2025 Feb 3;25(1):196. doi: 10.1186/s12913-025-12340-5.
Leprosy reactions (LR) are immune-mediated complications of leprosy that may be associated with severe and irreversible nerve damage. Non-medical aspects, such as financing, service provision, and healthcare resources in the management of LR are generally overlooked as studies tend to concentrate on clinical features and treatment. Barriers to accessing care and services are a major cause of suboptimal care for people with leprosy. This study aims to explore the barriers to and facilitators of high-quality care and management of LR in two leprosy-endemic countries with different health care models - Indonesia and India - and identify areas for improvement.
A socio-ecological model was adopted. Data were obtained from 66 interviews with individuals who experienced LR and were seeking care at the two study sites. In addition, immediate family members of individuals with LR and healthcare workers attending to people with leprosy participated in seven focus group discussions (FGDs).
This study highlights the significant impact of public health insurance regulations and uptake at the macrosystem level on the provision of healthcare services, clinical decision-making, care expenditure, and the psychological well-being of individuals with LR in Indonesia and India. Lack of specialized health professionals and communication challenges were identified in both study populations. Indonesian participants encounter additional challenges due to a fragmented information system and drug shortages. This study identifies key facilitators in providing high-quality care for LR-affected individuals, including financial assistance, availability of corticosteroid alternatives, timely provision of care, and counselling. It found that the high coverage of public health insurance cards in the Indonesian model has increased access to care among individuals affected by LR, despite the challenges. Conversely, the Indian model of care offers treatment subsidies. The advantage of the Indonesian model is its ability to provide wider access to high-quality care, whereas the Indian model focuses on those in most need. This study emphasizes the importance of addressing these challenges through improved communication strategies, education aimed at the affected individuals, and accessible medical care. Furthermore, variations in care-seeking behaviour and self-care practices were observed in both sites, underscoring the need for culturally sensitive and comprehensive approaches to the management of LR.
The study findings demonstrate that the factors identified at the four systemic levels are interrelated and have an impact on the access, acceptability, and management of LR services. Despite its accessibility and wider coverage of public health insurance, the integrated service model in Indonesia faces challenges associated with complex regulations and the availability of medication. India's care model offers intensive, specialised care but has difficulties in ensuring sufficient health personnel, resources, and public health insurance coverage. These findings highlight the need to address these challenges to ensure timely, effective, and comprehensive care for individuals with LR.
麻风反应（LR）是麻风病的免疫介导并发症，可能与严重且不可逆的神经损伤有关。由于研究往往集中在临床特征和治疗方面，因此在麻风反应管理中的非医学方面，如融资、服务提供和医疗资源等通常被忽视。获得护理和服务的障碍是麻风病患者护理不佳的主要原因。本研究旨在探讨在印度尼西亚和印度这两个具有不同医疗保健模式的麻风病流行国家中，麻风反应高质量护理和管理的障碍及促进因素，并确定改进领域。
采用社会生态模型。数据来自对66名经历过麻风反应并在两个研究地点寻求护理的个人的访谈。此外，麻风反应患者的直系亲属和照顾麻风病患者的医护人员参加了七次焦点小组讨论（FGD）。
本研究强调了宏观系统层面的公共医疗保险法规及参保情况对印度尼西亚和印度医疗服务提供、临床决策、护理支出以及麻风反应患者心理健康的重大影响。在两个研究人群中均发现缺乏专业卫生专业人员和沟通挑战。由于信息系统分散和药品短缺，印度尼西亚的参与者面临额外挑战。本研究确定了为受麻风反应影响的个人提供高质量护理的关键促进因素，包括经济援助、皮质类固醇替代药物的可用性、及时提供护理和咨询。研究发现，尽管存在挑战，但印度尼西亚模式中公共医疗保险卡的高覆盖率增加了受麻风反应影响的个人获得护理的机会。相反，印度的护理模式提供治疗补贴。印度尼西亚模式的优势在于能够提供更广泛的高质量护理，而印度模式则侧重于最需要的人群。本研究强调通过改进沟通策略、针对受影响个人的教育以及可及的医疗护理来应对这些挑战的重要性。此外，在两个地点均观察到就医行为和自我护理实践的差异，这突出了对麻风反应管理采用文化敏感和综合方法的必要性。
研究结果表明，在四个系统层面确定的因素相互关联，并对麻风反应服务的可及性、可接受性和管理产生影响。尽管印度尼西亚的综合服务模式具有可及性且公共医疗保险覆盖范围更广，但仍面临与复杂法规和药品供应相关的挑战。印度的护理模式提供强化、专业化护理，但在确保有足够的卫生人员、资源和公共医疗保险覆盖方面存在困难。这些发现凸显了应对这些挑战以确保为麻风反应患者提供及时、有效和全面护理的必要性。
