Pain experience and perception in individuals with Snijders Blok-Campeau syndrome

IntroductionSnijders Blok-Campeau Syndrome (SNIBCPS) is a neurodevelopmental disorder characterized by intellectual disability, developmental delays, speech impairment, hypotonia, and distinctive facial features. Little is known about pain perception in children with cognitive impairments, such as p...

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Main Authors: Don Daniel Ocay, Philippe M. Campeau, Charles B. Berde, Catherine A. Brownstein
Format: Article
Language:English
Published: Frontiers Media S.A. 2025-08-01
Series:Frontiers in Pain Research
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Online Access:https://www.frontiersin.org/articles/10.3389/fpain.2025.1540422/full
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author Don Daniel Ocay
Don Daniel Ocay
Philippe M. Campeau
Charles B. Berde
Charles B. Berde
Charles B. Berde
Catherine A. Brownstein
Catherine A. Brownstein
Catherine A. Brownstein
author_facet Don Daniel Ocay
Don Daniel Ocay
Philippe M. Campeau
Charles B. Berde
Charles B. Berde
Charles B. Berde
Catherine A. Brownstein
Catherine A. Brownstein
Catherine A. Brownstein
author_sort Don Daniel Ocay
collection DOAJ
description IntroductionSnijders Blok-Campeau Syndrome (SNIBCPS) is a neurodevelopmental disorder characterized by intellectual disability, developmental delays, speech impairment, hypotonia, and distinctive facial features. Little is known about pain perception in children with cognitive impairments, such as patients with SNIBCPS. Although it has been noted that some individuals with SNIBCPS have decreased pain sensation and response to painful stimuli, these reports are anecdotal. Therefore, the objective was to better understand this syndrome and the affected individual's perception and response to pain through proxy-reported observational assessments.MethodsFifteen caregivers of individuals with a diagnosis of SNIBCPS participated in this mixed-methods anonymous survey study between July and September 2024. The survey questionnaires included the Pediatric Pain Profile, a Pain Sensory Questionnaire, the Non-Communicative Children's Pain Checklist-Revised, and the Individualized Numerical Rating Scale.ResultsAlmost a quarter of our respondents reported insensitivity in the affected individual to hard impacts or pressure. Our findings highlight early and past painful experiences in individuals with SNIBCPS who have a range of behaviors to express their pain.DiscussionOur findings bring awareness about the proper examination of individuals with SNIBCPS. Despite the small sample size, our findings suggest that pain and injuries may go unreported in individuals with SNIBCPS, and individualized parental observational scales may be beneficial for their healthcare providers and their caregivers.
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spelling doaj-art-a9f9c429e1bc4e0fa5c8183669f2cd6c2025-08-20T03:36:53ZengFrontiers Media S.A.Frontiers in Pain Research2673-561X2025-08-01610.3389/fpain.2025.15404221540422Pain experience and perception in individuals with Snijders Blok-Campeau syndromeDon Daniel Ocay0Don Daniel Ocay1Philippe M. Campeau2Charles B. Berde3Charles B. Berde4Charles B. Berde5Catherine A. Brownstein6Catherine A. Brownstein7Catherine A. Brownstein8Department of Anesthesiology, Critical Care and Pain Medicine, Boston Children’s Hospital, Boston, MA, United StatesDepartment of Anaesthesia, Harvard Medical School, Boston, MA, United StatesDepartment of Pediatrics, Université de Montréal, Montreal, QC, CanadaDepartment of Anesthesiology, Critical Care and Pain Medicine, Boston Children’s Hospital, Boston, MA, United StatesDepartment of Anaesthesia, Harvard Medical School, Boston, MA, United StatesThe Manton Center for Orphan Disease Research, Boston Children’s Hospital, Boston, MA, United StatesThe Manton Center for Orphan Disease Research, Boston Children’s Hospital, Boston, MA, United StatesDivision of Genetics and Genomics, Boston Children’s Hospital, Boston, MA, United StatesDepartment of Pediatrics, Harvard Medical School, Boston, MA, United StatesIntroductionSnijders Blok-Campeau Syndrome (SNIBCPS) is a neurodevelopmental disorder characterized by intellectual disability, developmental delays, speech impairment, hypotonia, and distinctive facial features. Little is known about pain perception in children with cognitive impairments, such as patients with SNIBCPS. Although it has been noted that some individuals with SNIBCPS have decreased pain sensation and response to painful stimuli, these reports are anecdotal. Therefore, the objective was to better understand this syndrome and the affected individual's perception and response to pain through proxy-reported observational assessments.MethodsFifteen caregivers of individuals with a diagnosis of SNIBCPS participated in this mixed-methods anonymous survey study between July and September 2024. The survey questionnaires included the Pediatric Pain Profile, a Pain Sensory Questionnaire, the Non-Communicative Children's Pain Checklist-Revised, and the Individualized Numerical Rating Scale.ResultsAlmost a quarter of our respondents reported insensitivity in the affected individual to hard impacts or pressure. Our findings highlight early and past painful experiences in individuals with SNIBCPS who have a range of behaviors to express their pain.DiscussionOur findings bring awareness about the proper examination of individuals with SNIBCPS. Despite the small sample size, our findings suggest that pain and injuries may go unreported in individuals with SNIBCPS, and individualized parental observational scales may be beneficial for their healthcare providers and their caregivers.https://www.frontiersin.org/articles/10.3389/fpain.2025.1540422/fullpainexperienceperceptionSnijders Blok-Campeau syndromeCHD3
spellingShingle Don Daniel Ocay
Don Daniel Ocay
Philippe M. Campeau
Charles B. Berde
Charles B. Berde
Charles B. Berde
Catherine A. Brownstein
Catherine A. Brownstein
Catherine A. Brownstein
Pain experience and perception in individuals with Snijders Blok-Campeau syndrome
Frontiers in Pain Research
pain
experience
perception
Snijders Blok-Campeau syndrome
CHD3
title Pain experience and perception in individuals with Snijders Blok-Campeau syndrome
title_full Pain experience and perception in individuals with Snijders Blok-Campeau syndrome
title_fullStr Pain experience and perception in individuals with Snijders Blok-Campeau syndrome
title_full_unstemmed Pain experience and perception in individuals with Snijders Blok-Campeau syndrome
title_short Pain experience and perception in individuals with Snijders Blok-Campeau syndrome
title_sort pain experience and perception in individuals with snijders blok campeau syndrome
topic pain
experience
perception
Snijders Blok-Campeau syndrome
CHD3
url https://www.frontiersin.org/articles/10.3389/fpain.2025.1540422/full
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