Title: NIHR Global Health Research Unit on Neurodevelopment and Autism in South Asia: NAMASTE
Funder: Department of Health and Social Care

Abstract: Research Question. Evaluation of the implementation and effectiveness of a detection and intervention care pathway for neurodevelopmental disability and autism spectrum disorder in four contrasting health systems in South Asia._x000D_ _x000D_ Background. Neuro psychiatric disorder accounts for 15 to 30% of the disability adjusted life years lost during the first three decades of life and poses new challenges for health systems. South Asia has the highest prevalence of neurodevelopmental disability (NDD) of any nation and about 95% of autistic spectrum disorder (ASD) children live in low and middle income countries. Over a decade of collaboration, we have undertaken the first detection study for NDD and ASD in India, and have adapted for South Asia an effective UK ASD intervention. The resulting PASSPlus intervention, delivered by non-specialists, is the first of its kind with demonstrated effectiveness in published trials; supported by a digital training and supervision platform. In parallel, colleagues in the World Health Organisation have developed CST, a group intervention for child developmental disability. _x000D_ _x000D_ Aims and Objectives. Building on this previous work, NAMASTE will test the implementation and effectiveness of a combined stepped detection and intervention pathway; identifying children with NDD or ASD and linking them to CST and/or PASSPlus ASD intervention. We will test the the components of this pathway within four health systems that differ markedly in their implementation settings, along with building their clinical and research capacity and investigating cost-effectiveness aspects of delivery. _x000D_ _x000D_ Methods. Four workstreams: WS1 - tool and workforce development; WS2 - detection pathway implementation; WS3 - intervention implementation; WS4 - community inclusion and participation. Detection and intervention evaluation measures will be adapted and evidence-based. We will evaluate: i) the accceptability and effectiveness of digital training; ii) the feasibility and acceptability of detection and its validity against independent clinical assessment; iii) intervention effectiveness on family outcomes and child development, through a pre-post observational cohort design; iv) case studies and mixed methods evaluation of community and public engagement. A combined analysis will evaluate the whole detection intervention system by site as a measure of programme success and implementation learning._x000D_ _x000D_ Timelines. Y1, establishment and start-up, community engagement, completion of WS1. Y2, detection pathway. Y3, intervention pathway. Y4, detection and intervention pathway completed. Y5, Analysis, write-up, dissemination and completion of postgraduate programmes._x000D_ _x000D_ Dissemination and Impact. The evaluation of the digitally-supported detection and care pathway in NAMASTE will be the first of its kind in LAMIC, disseminated professionally and in the community. This GHRU will have built clinical and research capacity and have impact as a regional research and training hub in South Asia and potentially beyond; along a theory of change pathway towards universal health coverage for NDD and ASD in LAMIC.

Lay abstract: Aim _x000D_ To develop a flexible evidenced pathway towards universal health coverage for children with Autism, through a programme of research, training and capacity building across India, Sri Lanka and Nepal. _x000D_ _x000D_ Background_x000D_ Autism Spectrum Disorder (‘Autism’) is a severe neurodevelopmental disability with significant impact on children’s social development and independence into adulthood and profound economic consequences. It is a priority for the global health agenda and WHO Mental Health Action Plan 2013-2020. About five million families in India alone live with a young autistic child, the great majority with no access to services. _x000D_ _x000D_ Over a 10 year collaboration, Sangath, an Indian public health research not-for–profit, and the University of Manchester have carefully adapted an early intervention developed in Manchester and shown highly effective in large UK trials; for South Asia. The resulting 'Parent-mediated intervention for Autism Spectrum Disorder in South Asia' (PASSPlus), delivered by non-specialists, is the first of its kind and has shown real-world effectiveness in two initial randomised trials, with large-scale evaluation now within the New Delhi health system. During this work, Sangath have also developed an extensive digital training and supervision platform for health workers and researchers. Concurrently, NAMASTE collaborators have developed the a group-based parent 'Caregiver Skills Training' (CST) for more general neurodisability. _x000D_ _x000D_ Design and Methods_x000D_ Our GHRU will extend this previous work into a comprehensive training, research and capacity building hub across India, Sri Lanka and Nepal. Initial workforce development will use our digital learning platform and curriculum to build clinical and research capacity across each country; including masters, doctoral, and post-doctoral training from the UK for future health leaders. Care pathway components will include a novel, flexibly staged, digitally enabled, two-level screening protocol (for neurodevelopmental difficulty and then autism); combined with a complimentary staged and evidenced intervention protocol consisting of CST training for general delays at stage 1, and the PASSPlus intervention for autism at stage 2. This combined detection/intervention programme will be implemented in modular form, with constant evaluation, according to needs and readiness in the different settings. Cross-cutting themes of Health Economics, Research Methods innovation and Technology Development will apply throughout, and be included in postgraduate training. Implementation evaluation will be used to investigate specific barriers and enablers to change at each stage and in each setting. _x000D_ _x000D_ Community Engagement _x000D_ In each region and at each stage, community partners and co-applicants will help co-design awareness materials and advise on tool and protocol development. A web portal will host a suite of educational and awareness materials to support families across the region to access best evidenced practice. _x000D_ _x000D_ Dissemination_x000D_ Evaluation of this programme will be disseminated in international scientific and policy forums. Advocacy briefs in each setting will aim to leverage our evidence into community awareness and policy decisions, supported by the WHO’s existing endorsement for the PASS Plus intervention within a stepped care model. This GHRU will generate a hub for high quality research in autism and other developmental disorders in South Asia.

Research activity codes: 4.2 EVALUATION OF MARKERS AND TECHNOLOGIES;6.6 PSYCHOLOGICAL AND BEHAVIOURAL
Health categories: MENTAL HEALTH