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...
| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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SpringerOpen
2021-11-01
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| Series: | Journal of Patient-Reported Outcomes |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s41687-021-00396-w |
| _version_ | 1818570189983186944 |
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| 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 |
| collection | DOAJ |
| 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. |
| first_indexed | 2024-12-14T06:57:24Z |
| format | Article |
| id | doaj.art-1e3a5da8965644c8b7f6fe3785dd8b1c |
| institution | Directory Open Access Journal |
| issn | 2509-8020 |
| language | English |
| last_indexed | 2024-12-14T06:57:24Z |
| publishDate | 2021-11-01 |
| publisher | SpringerOpen |
| record_format | Article |
| series | Journal of Patient-Reported Outcomes |
| spelling | doaj.art-1e3a5da8965644c8b7f6fe3785dd8b1c2022-12-21T23:12:35ZengSpringerOpenJournal of Patient-Reported Outcomes2509-80202021-11-01511710.1186/s41687-021-00396-wThe sensory-reactivity PROM set: identification of a parent reported outcome measure set for autism spectrum disorderDorinde M. van Andel0Henk F. van Stel1Floortje E. Scheepers2Kim J. Oostrom3Lotte Haverman4Hilgo Bruining5Department of Psychiatry, UMC Utrecht Brain Center, University Medical Center UtrechtDepartment of Healthcare Innovation and Evaluation, Julius Center for Health Sciences and Primary Care, University Medical Center UtrechtDepartment of Psychiatry, UMC Utrecht Brain Center, University Medical Center UtrechtChild and Adolescent Psychiatry and Psychosocial Care, Emma Children’s Hospital, Amsterdam UMC, Amsterdam Reproduction and Development, Vrije Universiteit AmsterdamChild and Adolescent Psychiatry and Psychosocial Care, Emma Children’s Hospital, Amsterdam UMC, Amsterdam Public Health, University of AmsterdamDepartment of Psychiatry, UMC Utrecht Brain Center, University Medical Center UtrechtAbstract 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.https://doi.org/10.1186/s41687-021-00396-wASDSensory reactivity problemsPROMPROMISTrials |
| spellingShingle | 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 Journal of Patient-Reported Outcomes ASD Sensory reactivity problems PROM PROMIS Trials |
| title | 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_short | 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 |
| topic | ASD Sensory reactivity problems PROM PROMIS Trials |
| url | https://doi.org/10.1186/s41687-021-00396-w |
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