32043
A Lifespan Approach to Patient-Reported Outcomes and Quality of Life for Autism Using Nih Promis®
Patient-reported outcomes (PRO) and quality of life (QoL) are subjective patient perspectives of everyday functioning and subjective well-being (SWB). Incorporating PRO measures with clinical data can inform research, healthcare delivery, and policy. The utility of these constructs is limited for autism due to lack of well-validated, widely available, and comprehensive yet feasible measures. To address this gap, we curated a National Institutes of Health PROMIS® Autism Battery (PAB) for children, teens, and adults. PROMIS® item banks (4-8 items each) cover physical (e.g., sleep), mental (e.g., emotional distress), social (e.g., social support, social isolation) and global health. The results of our survey of people with autism and their families illustrate both the utility of PROMIS® and how lifespan QoL and functioning in autism compare to the general population.
Objectives:
(1) Describe the development and validation of the PAB.
(2) Compare PAB scores for children (parent report), teens (parent and self-report), and adults (self-report) with autism to the general population.
(3) Examine gender differences across the life course.
(4) Examine age effects for young, middle, and older adults with autism.
Methods:
Participants had a medical diagnosis of autism and were recruited via Interactive Autism Network and other research registries. Parents of children (ages 5-13, n=211, 77% male), parents of teens (ages 14-17, n=246, 69% male), teens (n=141, 71% male), and adults (ages 18–65, n=227, 47% male) completed an online survey about health and QoL. A subset (n=62) completed qualitative follow-up interviews. In the parent datasets, half of children and one-third of teens were reported as functioning below grade level. T-tests and ANOVAs were used for norm, gender, and age comparisons, α=.01.
Results:
(1) Participants rated the PAB as feasible and acceptable and provided suggestions for improvements.
(2) Statistically significant symptom elevations were reported for children (all domains), for teens (all domains except anger, p=.025), for teen self-report (all domains except anger and family relationships, p’s>.243), and adults (See Tables).
(3) No gender differences were reported for children, or via teen self-report. Compared to boys, parents reported that teen girls were more stressed (p=.008), anxious (p<.001), and had poorer sleep (p’s<.009). Compared to adult men, women reported more symptoms in global health (p=.008), sleep disturbance (p=.001), social isolation (p=.009), and lower self-efficacy (p=.003).
(4) Middle and older adults reported more symptoms than young adults for sleep issues (p’s<.008), social issues (p’s<.001), anger (p=.001), and subjective well-being (p’s<.001).
Conclusions:
Ideally, interventions and services are designed such that they have measurable, positive impacts on health, well-being, and/or QoL. The current findings indicate that a battery of PROMIS® measures for these constructs was both acceptable and effective for quantifying these domains for children, teens, and adults with autism and their families. Furthermore, the current results indicate impairments in relationships, physical and mental health, and well-being in children, teens, and adults with ASD, with adults also reporting poorer functioning and increased social isolation with age. Using these measures as part of research and routine care may help prioritize high-impact services and improve service delivery across the life course.