Development of a cost of illness inventory questionnaire for children with autism spectrum disorder in South Asia.

Researchers in India created a detailed questionnaire to measure all the costs families face when caring for a child with autism. They worked with 32 families to make sure the questionnaire covered everything important, including healthcare, education, special equipment, and even religious practices that families use. The questionnaire is available in both Hindi and English and takes about 35 minutes to complete. This tool will help researchers better understand the financial burden autism places on families in India and similar countries.

This study developed a comprehensive Cost of Illness Inventory (COII) questionnaire specifically for children with autism spectrum disorder in South Asia, particularly India. The researchers used an iterative design process involving literature reviews, caregiver interviews, pilot testing, and translation to create a culturally appropriate tool. Thirty-two families participated in the development and piloting phases. The final bilingual (Hindi-English) questionnaire covers 13 domains including education, healthcare, childcare, religious practices, and government schemes.

The tool takes approximately 35 minutes to complete and is hosted on REDCap Cloud. Compared to similar tools from high-income countries, this COII includes additional culturally relevant domains such as religious retreats and complementary medicine, reflecting the unique context of low- and middle-income countries.

This culturally adapted cost assessment tool enables systematic measurement of autism's economic burden in South Asian contexts. It supports evidence-based resource allocation and policy decisions by capturing costs unique to low- and middle-income countries. The tool facilitates future economic evaluations of autism interventions in these settings, potentially improving access to cost-effective care.

The tool was developed in one metropolitan area within India, which may limit generalizability to rural or other South Asian contexts. The study does not report validation data or psychometric properties of the questionnaire. Sample size for development phases is not clearly specified beyond the 32 families involved.

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.