Considerations from the 2017 IMFAR Preconference on Measuring Meaningful Outcomes from School‐Age to Adulthood

Abstract

The autism spectrum disorder (ASD) research community is increasingly considering the importance of measuring outcomes that are meaningful to individuals with ASD and their families. The 2017 IMFAR preconference aimed to gain the perspectives of how to define and measure “meaningful outcomes” from 280 participants, including people with ASD and their families, service providers, and researchers. Six themes were identified: (a) the definition of “outcome” varies by context and perspective; (b) the need to broaden the scope of what researchers measure; (c) the need for new assessment tools; (d) the need to expand data analytic methods; (e) where to focus (with emphasis on considering different developmental stages and aspects of diversity); and (f) a need for community partnerships to bridge research and daily practice. The challenge that the research community now faces is how to move the evidence base for clinical practice forward while keeping alive the divergence of views and considerations that are relevant for thinking about complex outcomes for the highly heterogeneous group of individuals with ASD. This commentary provides recommendations, with an emphasis on lifespan viewpoints that encompass individual strengths and preferences. Autism Research 2018, 11: 1446–1454. © 2018 International Society for Autism Research, Wiley Periodicals, Inc. Lay Summary The 2017 IMFAR preconference aimed to gain the perspectives of how to define and measure “meaningful outcomes” from a variety of stakeholders. This commentary outlines the six themes identified from keynote and panel presentations and audience‐participated discussions. Recommendations are made to emphasize perspectives that look across the lifespan and encompass individual strengths and preferences.

A Lifespan Approach to Patient‐Reported Outcomes and Quality of Life for People on the Autism Spectrum

“…Despite increased attention, research on factors associated with QoL in autism is still in its infancy, and important questions remain about how to measure it in a meaningful way [Bal et al, 2018]. Billstedt, Gillberg, and Gillberg [2011] combined parent proxy ratings with a measure of autism-friendly environment to understand QoL in adulthood (e.g., caregivers have autism knowledge, individualized treatment plan, occupation matching capacity), which covers important aspects of life but does not incorporate the individual's goals or standards.…”

Point OutWords: protocol for a feasibility randomised controlled trial of a motor skills intervention to promote communicative development in non-verbal children with autism

“…Furthermore, we use a wide range of assessments to comprehensively ascertain the impact of the Point OutWords intervention, including measures of restricted and repetitive behaviour (BOSCC, SRS, AIM); some studies have found that improvement in communication skills can have a knock-on effect on the reduction of restricted/repetitive behaviours [9,67]. Along the same lines, measuring an intervention's outcomes, not just on autistic symptom severity but on individual and family well-being and daily functioning, has recently been underscored [68], so we include measures of parent stress (PSI), family quality of life (FQoL), and children's challenging behaviour (maladaptive behaviour subdomain on VABS-2).…”

Meaning in Measurement: Evaluating Young Autistic Adults' Active Engagement and Expressed Interest in Quality-of-Life Goals

“…[2][3][4] Despite spending the majority of life in adulthood, most attention, research, and supports have been for childhood autism. 2,5 Our support programs must also mature and put as much, if not more, attention to quality of life (QoL) with adults on the spectrum. [4][5][6][7] A shift in the focus to QoL brings complex challenges in how to achieve meaningful results and how to measure ''success'' as it relates to positive impact in a person's daily life.…”

“…2,5 Our support programs must also mature and put as much, if not more, attention to quality of life (QoL) with adults on the spectrum. [4][5][6][7] A shift in the focus to QoL brings complex challenges in how to achieve meaningful results and how to measure ''success'' as it relates to positive impact in a person's daily life. [5][6][7][8] In this article, we consider the issue of measurement that goes beyond skills-based assessments aimed at achieving precision and reliability in the quantification of discrete behaviors prevalent in childhood intervention, toward a mixedmethods approach emphasizing qualitative evaluation of adult participant engagement in personal wellness goals within intentional supportive environments.…”

“…[4][5][6][7] A shift in the focus to QoL brings complex challenges in how to achieve meaningful results and how to measure ''success'' as it relates to positive impact in a person's daily life. [5][6][7][8] In this article, we consider the issue of measurement that goes beyond skills-based assessments aimed at achieving precision and reliability in the quantification of discrete behaviors prevalent in childhood intervention, toward a mixedmethods approach emphasizing qualitative evaluation of adult participant engagement in personal wellness goals within intentional supportive environments. 7,9,10 We focus on a pilot program with young verbally able autistic adults as a vehicle to conceptualize, implement, and evaluate efforts to impact QoL.…”