The sensory-reactivity PROM set: identification of a parent reported outcome measure set for autism spectrum disorder

Abstract Background Most 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 pr...

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Autores principales:	Dorinde M. van Andel, Henk F. van Stel, Floortje E. Scheepers, Kim J. Oostrom, Lotte Haverman, Hilgo Bruining
Formato:	article
Lenguaje:	EN
Publicado:	SpringerOpen 2021
Materias:	ASD Sensory reactivity problems PROM PROMIS Trials Public aspects of medicine RA1-1270
Acceso en línea:	https://doaj.org/article/1e3a5da8965644c8b7f6fe3785dd8b1c
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spelling	oai:doaj.org-article:1e3a5da8965644c8b7f6fe3785dd8b1c2021-11-21T12:28:33ZThe sensory-reactivity PROM set: identification of a parent reported outcome measure set for autism spectrum disorder10.1186/s41687-021-00396-w2509-8020https://doaj.org/article/1e3a5da8965644c8b7f6fe3785dd8b1c2021-11-01T00:00:00Zhttps://doi.org/10.1186/s41687-021-00396-whttps://doaj.org/toc/2509-8020Abstract Background Most 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. Results A 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. Conclusion The 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.Dorinde M. van AndelHenk F. van StelFloortje E. ScheepersKim J. OostromLotte HavermanHilgo BruiningSpringerOpenarticleASDSensory reactivity problemsPROMPROMISTrialsPublic aspects of medicineRA1-1270ENJournal of Patient-Reported Outcomes, Vol 5, Iss 1, Pp 1-7 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	ASD Sensory reactivity problems PROM PROMIS Trials Public aspects of medicine RA1-1270
spellingShingle	ASD Sensory reactivity problems PROM PROMIS Trials Public aspects of medicine RA1-1270 Dorinde M. van Andel Henk F. van Stel Floortje E. Scheepers Kim J. Oostrom Lotte Haverman Hilgo Bruining The sensory-reactivity PROM set: identification of a parent reported outcome measure set for autism spectrum disorder
description	Abstract Background Most 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. Results A 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. Conclusion The 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.
format	article
author	Dorinde M. van Andel Henk F. van Stel Floortje E. Scheepers Kim J. Oostrom Lotte Haverman Hilgo Bruining
author_facet	Dorinde M. van Andel Henk F. van Stel Floortje E. Scheepers Kim J. Oostrom Lotte Haverman Hilgo Bruining
author_sort	Dorinde M. van Andel
title	The sensory-reactivity PROM set: identification of a parent reported outcome measure set for autism spectrum disorder
title_short	The sensory-reactivity PROM set: identification of a parent reported outcome measure set for autism spectrum disorder
title_full	The sensory-reactivity PROM set: identification of a parent reported outcome measure set for autism spectrum disorder
title_fullStr	The sensory-reactivity PROM set: identification of a parent reported outcome measure set for autism spectrum disorder
title_full_unstemmed	The sensory-reactivity PROM set: identification of a parent reported outcome measure set for autism spectrum disorder
title_sort	sensory-reactivity prom set: identification of a parent reported outcome measure set for autism spectrum disorder
publisher	SpringerOpen
publishDate	2021
url	https://doaj.org/article/1e3a5da8965644c8b7f6fe3785dd8b1c
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The sensory-reactivity PROM set: identification of a parent reported outcome measure set for autism spectrum disorder

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