Quality of Life Assessment for Adults with ASD (QLAA)

Background:  Service providers working with adults diagnosed with ASD need a reliable standardized QoL instrument to effectively and comprehensively address needs and assist those they serve. In the absence of such a tool, the assessment is often limited with results based on a particular provider’s area of specialty. This limitation can lead to an incomplete assessment that includes recommendations for a specific component(s) of one’s needs, rather than one than address the full breadth of one’s needs. JFCS sought funding from Autism Speaks, and in December 2014 was awarded a $25,000 Family Services Community Grant to fund the development of an appropriate Qol instrument for adults with ASD. JFCS completed the project and developed the Quality of Life Assessment for Adults with ASD (QLAA) in December 2015.

Objectives:  In order to assess an individual’s quality of life, the following components must be assessed: physical well-being, psychological well-being, social well-being, independence, education, and employment. By measuring overall quality of life, as well as scoring each of these domains, direct care workers may identify the individual’s needs, and develop individualized and meaningful treatment plans. The QLAA includes the six mentioned domains of quality of life, and the values, goals, aspirations and current life circumstances of the adult completing the QLAA. The QLAA may be used by social service providers working with adults diagnosed with ASD. These professionals may utilize the QLAA in the following ways:

• To determine client needs during the initial assessment
• When reviewing needs and progress
• To inform strategy to match unmet needs to available services
• To evaluate service appropriateness
• To evaluate the effectiveness of interventions

Methods: A literature review on QoL and existing measurements was completed. A multidisciplinary focus group was hosted with professionals working with adults with ASD. Interviews were conducted with adults diagnosed with ASD as well. The adults were asked to define QoL, list and describe the factors that impact QoL, and provide suggestions and recommendations about the implementation of a QoL instrument. Transcriptions of the interviews and focus group were reviewed as well as existing QoL tools, and re-occurring concepts were identified to generate the primary items included in the QLAA. The QLAA was piloted with 23 participants. 11 participants completed the QLAA a second time, and 8 participants identified 2 individuals who knew the participant well to complete the QLAA by proxy.

Results: Participants’ Overall Score: Employed Avg= 148 (Range: 45-180); Unemployed Avg= 129 (Range: 45-168). Common responses to “what is important to you?”: Social support, employment, hobbies, health, community engagement and independence.

Conclusions:  (1) 3 items were revised based on participants’ feedback; (2) When comparing the proxy scores to the participants’ scores, results indicated that individuals who know the adult well may be a reliable source in determining his/her qol, which is useful if the tool cannot be administered directly with the adult due to communication impairments; (3) Due to the small sample size of this study, the QLAA must be used with a large sample to further assess its validity.