COMPASS
Evaluating a community based non-specialist delivered autism intervention.
Duration
2018 - 2024
Location
National Capital Territory (NCT) of Delhi
Investigators
Prof. Vikram Patel, Prof. Jonathan Green
Contact
Overview
COMPASS (Communication-centred Parent-mediated Treatment for Autism Spectrum Disorder In South Asia) is the result of cumulative research work done by Sangath in the field of autism since 2009. After exploratory qualitative work in Autism Research Training Initiative (ARTI), and two pilot trials (PASS and PASS Plus), this phase 3 trial of the effectiveness of the parent-mediated intervention for autism through PASS Plus intervention is now ongoing. COMPASS aims to assess whether non-specialist government frontline workers viz., Accredited Social Health Activists (ASHAs) when trained and supervised effectively, can deliver a quality home-based intervention to parents to reduce symptoms of autism in their young children. It is to date, the largest randomized control trial for autism in a low- and middle-income country, involving a sample size of 261 participants in 11 districts of NCT of Delhi, India.
Rationale
Of the majority of young children with autism in low and middle-income countries lack access to evidence-based care. Evidence shows that parent-mediated interventions benefit autistic children, improving parental knowledge and child outcomes. The UK's Pre-school Autism Communication Therapy (PACT) has shown a sustained impact over time. The adapted and expanded Parent-mediated Autism Social communication Intervention for non-Specialists (PASS) Plus, has demonstrated acceptability and feasibility in multiple sites in South Asia... The COMPASS trial will conduct an effectiveness and cost-effectiveness evaluation of the PASS Plus intervention by training existing health systems frontline workers, the ASHA, to understand the impact and costs of this intervention when delivered by non-specialist workers.
Progress till date
Intervention Arm
A team of Intervention Coordinators was trained in PASS Plus intervention to facilitate the training and supervision of non-specialists.
Recruitment of non-specialist was done through a systematic process of identification, training, supervised internship and competency evaluations. Seven ASHA workers and 10 COMPASS counsellors achieved competency through this process.
These 17 non-specialists have delivered 1214 PASS Plus sessions to 130 families of children with autism in Delhi. The sessions were adapted to be delivered virtually and in hybrid mode to ensure the continuity during the lockdowns associated with the COVID-19 pandemic.
Monthly refresher trainings and weekly supervisions were conducted to ensure quality session delivery.
Intervention arm activities were completed in Sept 2023.
Evaluation Arm
A team of psychologists were trained in conducting assessments with children with autism and their caregivers in order to understand the development of children across three time points, strategically spread over a period of 15 months.
Some assessment measures were culturally adapted to align within the context of the participants.
Data collection has been conducted using both using traditional paper-based measures and a secure online database known as REDCap.
The team has achieved significant milestones by successfully completing assessments for two time-points in the trial viz., baseline and endline (at 9 months) while follow-up (at 15 months) is still in progress. The assessments are projected to be completed in April 2024.
Coders for two measures, Brief Observation of Social Communication Change (BOSCC) and Dyadic Communication Measure for Autism (DCMA) have been trained and coding has commenced.
Partner/s
The University of Manchester, Manchester, UK
Department of Global Health and Medicine, Harvard Medical School, Boston, USA
Delhi State Health Mission, Delhi, India
All India Institute of Medical Sciences, New Delhi, India
Maulana Azad Medical College, New Delhi, India
Kings College, London, UK