Thursday, May 17, 2012
Sheraton Hall (Sheraton Centre Toronto)
3:00 PM
R. A. Stock1, J. Volden2, S. Georgiades3, M. Alexander4, T. Bennett3, L. Colli5, K. MacLeod6, I. O'Connor3, C. Shepherd7, M. Steiman8, P. Szatmari3, S. E. Bryson9, E. Fombonne8, P. Mirenda10, W. Roberts11, I. M. Smith9, T. Vaillancourt12, C. Waddell13 and L. Zwaigenbaum2, (1)University of British Columbia, North Vancouver, BC, Canada, (2)University of Alberta, Edmonton, AB, Canada, (3)Offord Centre for Child Studies, McMaster University, Hamilton, ON, Canada, (4)Glenrose Rehabilitation Hospital, Edmonton, AB, Canada, (5)McMaster University, Welland, ON, Canada, (6)Isaak Walton Killam Hospital, Halifax, NS, Canada, (7)Children's Health Policy Centre, Simon Fraser University, Vancouver, BC, Canada, (8)Montreal Children's Hospital, Montreal, QC, Canada, (9)Dalhousie University/IWK Health Centre, Halifax, NS, Canada, (10)University of British Columbia, Vancouver, BC, Canada, (11)Autism Research Unit, The Hospital for Sick Children, Toronto, ON, Canada, (12)University of Ottawa, Ottawa, ON, Canada, (13)Simon Fraser University, Vancouver, BC, Canada
Background: The “Pathways in ASD” study is a large longitudinal study examining the developmental trajectories of children with ASD. Approximately 420 children in Halifax, Montreal, Hamilton, Edmonton and Vancouver have been assessed four times in the period between their receiving a diagnosis of ASD (2-4 years of age) and their entrance to school (6 years of age).

At each assessment, participating families provided information on the type, duration, and intensity of services provided to their child and family during that period.

Objectives: To describe the development of the Pathways Autism Services Log (PASL), an instrument for the systematic coding of a diverse range of services data by both type and intensity/dosage.

Methods: Ten representatives from the five sites held regular teleconference meetings and generated criteria for 8 initial service type categories. Two coders from each site then coded their local data sets and calculated reliability, with a goal of 90% agreement. A 10-point coding scheme was finalized by consensus after three rounds of trial coding and conference calls to discuss and resolve coding challenges. Codes for type of service include: 0 = No Services (e.g., waitlist/seeking services); 1 = Behavioural/Structured; 2 = Integrated/Mainstream group-based without support; 3 = Integrated/Mainstream group-based with support; 4 = Specialized Group; 5 = Other services; 6 = Language & Communication; 7 = Occupational Therapy & Physical Therapy; 8 = Community/Recreation without support; 9 = Community/Recreation with support; 10 = Mental Health. Site-specific “local rules” were also developed to address idiosyncratic differences across sites. 

A 4-point scale was then developed for categorizing the dosage (hours per week) of reported services, based on the distribution of services dosages in the data: one for services with higher weekly dosage (0-5, 6-10, 11-20 and >20) and one for services with lower weekly dosage (<1, 1, 2-5 and >5). This final coding system was approved by the investigators of the Pathways study and then applied to each site, again with two coders coding data from their own site and calculating reliability for both service type and dosage. Following another teleconference meeting that identified remaining coding inconsistencies, the primary coder at each site met with the co-coder to resolve the existing discrepancies using agreed-upon rules.

Results: Multiple rounds of coding and a pre-specified process of reaching a consensus led to the development of the Pathways Autism Service Log (PASL), a new instrument for coding autism-related services data. Inter-rater reliability of 91% was achieved for the coding of the entire Pathways in ASD study data set.  

Conclusions: The PASL is a comprehensive and reliable instrument that can be used for coding service type and intensity data on autism-related services. This measure will be used to quantify the services data to support the investigation of the impact of services on the developmental trajectories of children with ASD.

Sponsor: Canadian Institutes of Health Research (CIHR), Autism Speaks, Government of British Columbia, Alberta Innovates Health Solutions and the Sinneave Family Foundation.

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