Innovation summary

Autism Spectrum Disorders (ASD), a type of developmental disability, accounts for 4.2% of the DALYs attributed to mental disorders.1 ASD is typically diagnosed from the age of 3 years; a recent systematic review reported a mean global prevalence of 1%.2 This translates to about 4 million children with ASD in the country.

The PASS+ project aims to develop a population based, key informant mediated, method for the identification of children with ASD to maximise coverage of early detection of the disorder. The second aim is to develop and evaluate the feasibility and acceptability of a lay health worker (LHW) delivered, parent-mediated, package of care for ASD building on an existing communication intervention to address a range of needs for families with children with ASD.

PASS+ will offer a comprehensive strategy to improve early detection & expand access to treatment for ASD in an acceptable affordable manner for wider scaling up in low resource contexts.

Impact summary

  • 18,000 children will be screened using the Detection Package
  • 60% of potential children with ASD are expected to be identified (n=119)

“Families of children with Autism in the rural areas have the multiple challenges of poor awareness amongst professionals they seek help from, a lack of access to evidence based services along with an incomplete understanding of ‘Autism’ and how they can help their child. We hope to address these needs with an integrated approach to detection and intervention in this project“
 

- Dr Gauri Divan, PI, PASS +


This innovation is funded by Grand Challenges Canada.

Innovation details

The PASS+ project will address two major unmet needs of families affected by ASD: the lack of early identification delaying the initiation of treatment; and the lack of access to evidence based treatments due to geographical and human resource barriers. PASS+ will address these by concurrently developing a package aimed at enhancing the early detection of ASD through a population based strategy (the Detection Package); and developing a holistic package of care for families of children with ASD for delivery by lay health workers (the Intervention Package).

The Detection Package aims to increase the coverage of detection of ASD to at least 80% of affected children in the population and reduce the time to detection. The activities will be conducted in a sequential manner as follows: mapping of gate-keepers; developing and implementing a training program for identification and referral of suspected children with ASD; surveillance of gate keepers; and the diagnostic confirmation of ASD using the two stage methodology validated by the INCLEN network (with Sangath).3

The Treatment Package aims to address a range of needs of families affected by ASD. It will comprise a modular parent-mediated, lay health worker delivered intervention built upon PASS, a communication focused intervention based on the PACT, an evidence based intervention evaluated in a large RCT in the UK(8) and adapted for use in South Asia. Additional modules addressing a range of needs of families(4), for e.g. behaviour and sleep management, will be added to this core, to be used according to the specific needs of families. The activities will involve: reviewing practice guidelines used by ASD organisations in the country; conducting selected case studies of services in regional centres; conducting theory of change workshops; synthesizing this information in a intervention development workshop; and piloting the package with a cohort of parents identified through the gate-keepers.

Key drivers

  • Commenced November 2014.
  • Key driver was the proof of concept work done by the team under the Autism Speaks GAPH grant (2012-2014). The PASS Project which adapted a communication intervention for Autism for delivery by task sharing in Goa, India and Rawalpindi, Pakistan.
  • The PASS project has resulted in the Parent mediated intervention for Autism Spectrum disorders in South Asia. A low intensity manualised communication intervention for delivery by non specialist health workers. 

Challenges

Commenced November 2014 - no challenges encountered during the planning or initial stages as of yet 

Partners

Funders

Evaluation methods

We will evaluate the Detection Package; by assessing the sensitivity & specificity of the Community Information Detection tool; by calculating the cases identified against the prevalence rates for ASD in the region; as well as the proportion of the false positives referred. We will also calculate the cost of true cases identified. This will be done near the end of the project period. We will also conduct a number of focus groups on the acceptability of the usage of the tool by the community informants.

The Intervention package will be evaluated by calculating the number of sessions delivered, the equality of session as rated by experts on a competency measure and the acceptability of the intervention in the local community . The first and last measure will be evaluated at the end of the project period while the second will be ongoing during the project. We will also assess the change between baseline and endpoint evaluations on parent synchrony , child initiation of communication and shared attention as well as maternal mental health at the end of the project period. 

References

  1. Whiteford HA, Degenhardt L, Rehm J, Baxter AJ, Ferrari AJ, Erskine HE, et al. Global burden of disease attributable to mental and substance use disorders: findings from the Global Burden of Disease Study 2010. Lancet. 2013 Nov 9;382(9904):1575-86.
  2. Elsabbagh M, Divan G, Koh YJ, Kim YS, Kauchali S, Marcin C, et al. Global prevalence of autism and other pervasive developmental disorders. Autism Res. 2012 Jun;5(3):160-79.
  3. Deshmukh VB, Mohapatra A, Gulati S, Nair MKC, Bhutani VK, Silberg DH, et al. Prevalence of Neuro -Developmental Disorders in India Poster presentation, IMFAR 2013.
  4. Green J, Charman T, McConachie H, Aldred C, Slonims V, Howlin P, et al. Parent-mediated communication-focused treatment in children with autism (PACT): a randomised controlled trial. Lancet. 2010 Jun 19;375(9732):2152-60.
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Country

India, Pakistan

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