Abstract
BackgroundMost children with autism spectrum disorder (ASD) suffer from aberrant responses to sensory stimuli that significantly impact the quality of life. To develop sensory interventions, individually tailored outcome measures are crucially needed for the domain of sensory reactivity problems. Here, we describe the identification of relevant sensory themes according to caregivers of children with ASD according to the guidelines for developing a (parent proxy) patient-reported outcome measure set. Subsequently, we identify parallels between these themes and a well-validated and supported PROMIS® portal to facilitate implementation. Interviews with clinicians and focus groups and interviews with parents of children with ASD were used in the initial phase for concept elicitation. Codes and themes were generated by qualitative thematic data analysis on the transcripts and cognitive interviews with different parents were used for revisions. The resulting themes were compared to existing generic PROMIS-item banks and other existing questionnaires.ResultsA total of 11 parent-reported outcomes were identified that could be either classified as directly or indirectly related to sensory reactivity. Directly related themes comprised of: (1) sensory stimulation tolerance and (2) sensitivity to sensory stimuli. Indirectly related themes were: (3) irritable behavior (4) anxiety problems (5) mood problems (6) sleep problems (7) fatigue (8) physical complaints (9) daily functioning and participation (10) routines, structure and dealing with change and (11) problems in social interaction and communication. Seven out of 11 themes could be measured with generic PROMIS item banks. The four remaining outcomes (sensory stimulation tolerance; irritable behaviour; routines, structure and dealing with change; and sensitivity to sensory stimuli) were found suitable to be inventoried by existing PROMs.ConclusionThe majority of parent-reported problems seemed related to indirect consequences of sensory reactivity, which are suitable to be measured with generic item banks. In sum, we identified a sensory-reactivity PROM (parent-proxy) set consisting of PROMIS® item banks and additional domains that together form a comprehensive and readily available outcome set for sensory reactivity problems in children with ASD.
Highlights
Most children with autism spectrum disorder (ASD) suffer from aberrant responses to sensory stimuli that significantly impact the quality of life
In this report we describe the identification of patient/ caregiver relevant concepts and the development of a Sensory Reactivity-patient reported outcome measure (PROM) set using Patient-Reported Outcomes Measurement Information System® (PROMIS) as a first milestone in establishing ecologically valid outcome measures for sensory reactivity
The study population that was interviewed and used for concept elicitation consisted of 38 caregivers of 37 children with an ASD diagnosis
Summary
Most children with autism spectrum disorder (ASD) suffer from aberrant responses to sensory stimuli that significantly impact the quality of life. The majority of children with autism spectrum disorder (ASD) display aberrant responses to sensory experiences compared to their typically developing peers [1]. These responses are commonly referred to as sensory reactivity problems (SRPs) and are estimated to occur in 69–95% of van Andel et al Journal of Patient-Reported Outcomes (2021) 5:123 patients with ASD [2, 3]. Interventions for SRPs are seen as a top priority in the ASD community [13]
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