|Name of the project||COMPASS|
|Title of the project||Communication-centred Parent-mediated treatment for Autism Spectrum disorder in South Asia.|
|Funder||Joint Global Health Trials Programme; Medical Research Council, Department for International Development, National Institute for Health Research, and the Wellcome Trust|
|Timeline/Years active||Apr 2018 – Apr 2022 [48 months]|
|Principal Investigator(s)||1. Prof Jonathan Green (Chief Investigator; University of Manchester)
2. Prof Vikram Patel (Co-Principal Investigator; Harvard University)
3. Gauri Divan (Co-Investigator; Sangath)
4. Vivek Vajaratkar (Site Investigator; Goa Medical College)
5. Dr. Sheffali Gulati (Site Investigator; All India Institute of Medical Sciences)
6. Dr. Monica Juneja (Site Investigator; MAMC and assc Lok Nayak Hospital)
|Trial Director(s)||1. Reetabrata Roy (Sangath)
2. Kathy Leadbitter (University of Manchester)
|Coordinators and other key staff||1. Divya Kumar (Senior Research Coordinator)
2. Raghuveer Singh (Senior Administrator)
3. Minal Kakra (Research Assistant)
4. Mansi Sharma, Lavangi Naithiani, Sakshi Chand, Priya Sangwan and Parul Patle (Intervention Coordinators)
5. Neha Verma (Recruitment Coordinator)
6. Harish (Driver)
7. Narayan (Housekeeping staff)
|Contact information||email: firstname.lastname@example.org
|Description of the project:||Background: Autism is a neurodevelopmental disability, which is present from birth and has a life-long impact on the development of a child’s social interactions and behaviours with others. Core impairments in the child are around social communication and interactions; restricted and repetitive behaviours, interests and activities and difficulty in processing the information from the world around them.
A recent study from India in which Sangath partnered during our ARTI project, found a prevalence rate of around 1% in children aged 2-9 years. This indicates that there are over two million families in India with a child with autism.
Most treatments that are being offered to families of children with autism tend to be ‘imported’ and ‘eclectic’ – this means that they haven’t been evaluated properly in our setting. To meet this challenge, the team in Sangath along with partners in the Universities of Liverpool and Manchester, UK and Institute of Psychiatry, Pakistan adapted an evidence-based intervention from the UK called Preschool Autism Communication Therapy (PACT). This adapted intervention was called the Parent-mediated intervention for Autism Spectrum Disorders in South Asia (PASS). We then, through a second project, expanded the intervention to include support for comorbidities in the PASS Plus intervention.
PASS Plus has two parts. The first part (PASS) addresses the core communication difficulties of children with autism. The Plus component supports other difficulties that many children have with their behaviours, feeding and sleeping. The novel elements of this intervention are that it can be delivered by lay health workers in the homes of families. Both the PASS and PASS Plus interventions were evaluated with families having a child with Autism in Goa (2012-2014) and Kolhapur (2014-16) respectively, through pilot randomised controlled trials. Both interventions have shown a high level of acceptability and feasibility along with effectiveness.
Current program: COMPASS will now carry out a definitive evaluation of the clinical effectiveness and cost-effectiveness of this comprehensive intervention for autism. The key innovations are to enable the delivery of intervention through existing frontline health workers present in the urban health system of New Delhi- the Accredited Social Health Activists (ASHAs). This trial is being conducted in Delhi in partnership with Maulana Azad Medical College & assoc. Lok Nayak Hospital (MAMC-LNH) and All India Institute of Medical Sciences (AIIMS).
i. To evaluate the effectiveness at a scale of a parent-mediated intervention for Autism Spectrum Disorders in South Asia, delivered by lay health workers in community settings.
ii. To investigate the cost-effectiveness of the intervention.
iii. To generate tools and evidence for policymakers to guide the scale-up of the intervention.
Participants: 240 families with a child with Autism (2 – 9 years of age) who will be recruited through two tertiary care hospitals (AIIMS and MAMC-LNH) in the capital city of New Delhi.
Implications/Impact: This trial is an essential next step in generating the information we need to address gaps in programs such as the Rashtriya Bal Swasthya Karykram (RBSK). This program launched in 2013, addresses neurodevelopmental disorders but there is no standardised package of care for young children with autism. We hope to generate this information through this work.