Sangath, House No 451 (168), Bhatkar Waddo, Socorro, Porvorim, Bardez, Goa, 403501, India.
The University of Manchester, Manchester, UK.
BMC Health Serv Res. 2022 Sep 8;22(1):1137. doi: 10.1186/s12913-022-08508-y.
The economic burden of autism is substantial and includes a range of costs, including healthcare, education, productivity losses, informal care and respite care, among others. In India, approximately, 2 million children aged 2-9 years have autism. Given the likely substantial burden of illness and the need to identify effective and cost-effective interventions, this research aimed to produce a comprehensive cost of illness inventory (COII) suitable for children with autism in South Asia (India) to support future research.
A structured and iterative design process was followed to create the COII, including literature reviews, interviews with caregivers, pilot testing and translation. Across the development of the COII, thirty-two families were involved in the design and piloting of the tool. The COII was forward translated (from English to Hindi) and back translated. Each stage of the process of development of the COII resulted in the further refinement of the tool.
Domains covered in the final COII include education, childcare, relocation, healthcare contacts (outpatient, inpatient, medical emergencies, investigations and medication), religious retreats and rituals, specialist equipment, workshops and training, special diet, support and care, certification, occupational adjustments and government rebates/schemes. Administration and completion of the COII determined it to be feasible to complete in 35 minutes by qualified and trained researchers. The final COII is hosted by REDCap Cloud and is a bilingual instrument (Hindi and English).
The COII was developed using experiences gathered from an iterative process in a metropolitan area within the context of one low- and middle-income country (LMIC) setting, India. Compared to COII tools used for children with autism in high-income country settings, additional domains were required, such as complimentary medication (e.g. religious retreats and homeopathy). The COII will allow future research to quantify the cost of illness of autism in India from a broad perspective and will support relevant economic evaluations. Understanding the process of developing the questionnaire will help researchers working in LMICs needing to adapt the current COII or developing similar questionnaires.
自闭症的经济负担是巨大的，包括医疗保健、教育、生产力损失、非正式护理和临时护理等一系列成本。在印度，大约有 200 万 2-9 岁的儿童患有自闭症。鉴于疾病可能带来的巨大负担，以及需要确定有效和具有成本效益的干预措施，本研究旨在为南亚（印度）的自闭症儿童编制一份全面的疾病成本清单（COII），以支持未来的研究。
采用结构化和迭代设计流程来创建 COII，包括文献综述、对护理人员的访谈、试点测试和翻译。在 COII 的开发过程中，共有 32 个家庭参与了工具的设计和试点。COII 被正向翻译（从英语到印地语）和反向翻译。COII 开发过程的每个阶段都进一步改进了工具。
最终的 COII 涵盖的领域包括教育、儿童保育、搬迁、医疗保健接触（门诊、住院、医疗紧急情况、调查和药物治疗）、宗教静修和仪式、专业设备、工作坊和培训、特殊饮食、支持和护理、认证、职业调整和政府回扣/计划。通过合格和经过培训的研究人员进行 COII 的管理和完成，确定该工具在 35 分钟内完成是可行的。最终的 COII 托管在 REDCap Cloud 上，是一个双语工具（印地语和英语）。
COII 是在一个中低收入国家（LMIC）印度的大都市地区，通过迭代过程收集经验开发的。与高收入国家儿童自闭症 COII 工具相比，需要额外的领域，如补充药物（如宗教静修和顺势疗法）。COII 将使未来的研究能够从广泛的角度量化印度自闭症的疾病成本，并支持相关的经济评估。了解编制问卷的过程将有助于在 LMIC 中工作的研究人员适应当前的 COII 或开发类似的问卷。
