Collecting Economic Data From Global Autism Spectrum Disorder (ASD) Research: A Comparison From the UK and India

OBJECTIVES: Cost-effectiveness analysis conducted alongside clinical trials gives the opportunity to collect comprehensive patient-level economic data to inform costing. The use of cost-effectiveness analysis is growing in low-and middle-income countries and whilst many data collection measures exist for use, they are more relevant to high-income settings, where costs may differ vastly. We aimed to compare economic data in two autism trials happening concurrently in the UK and India, as well as learnings from these settings.

METHODS: In New Delhi, India, the COMPASS randomized controlled trial (RCT) (n=261) aims to evaluate the effectiveness and cost-effectiveness of a parent-mediated intervention for ASD. In the UK, the REACH-ASD RCT (n=379) aims to evaluate the clinical and cost-effectiveness of a new manualized psychosocial intervention (Empower-Autism) for caregivers of children recently diagnosed with ASD. In both trials, pre-existing economic data collection forms were reviewed by the study team and adapted to meet trial needs. In COMPASS, draft economic patient questionnaires were pilot-tested qualitative feedback which was reflected in the final tool. Both trials asked participants to recall service use over a 6-month period.

RESULTS: The questionnaire in the UK included domains related to health and social care use, accommodation/respite care (excluded from analysis as <1% participants reported data at baseline) and productivity losses. The greatest component of costs in the UK related to primary and community care. The India questionnaire collected data from seventeen domains. Examples of domains not included in the UK questionnaire included complimentary medicine, equipment, special diets, disability certification and religious visits. The greatest cost components in India were outpatient treatment and investigations.

CONCLUSIONS: Our experience illustrates that an economic questionnaire from one income setting cannot simply be applied in another. Categories of costs relevant to economic evaluation differ vastly due to cultural and economic factors.