Evidence map›Paper›PMID 37533505›Full record

ArticleCanadian journal of pain = Revue canadienne de la douleur2023

Caregiver Perspectives on Pain Sensitivity and Pain Experience in Rett Syndrome.

B J Byiers, A M Merbler, A Raiter, C C Burkitt, F J Symons

Open access · goldAbstract read
In one paragraph

Article in Canadian journal of pain = Revue canadienne de la douleur, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
0.6field-weighted citation impact, top 24% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed, 2 citations in OpenAlex.

  1. Article
  2. Toward an NGF-based therapy for Rett syndrome.Frontiers in neuroscience · 2026
    Review
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors at 3 institutions in 1 country.

B J ByiersDepartment of Educational Psychology, University of Minnesota, Minneapolis, Minnesota, USA.
A M MerblerDepartment of Educational Psychology, University of Minnesota, Minneapolis, Minnesota, USA.
A RaiterGillette Children's, St. Paul, Minnesota, USA.
C C BurkittGillette Children's, St. Paul, Minnesota, USA.
F J SymonsDepartment of Educational Psychology, University of Minnesota, Minneapolis, Minnesota, USA.
Gillette Children's Specialty Healthcare · USUniversity of Minnesota · USMinnesota Department of Education · US

Funding

Chronic Postsurgical Pain in Cerebral PalsyR01HD108406 · NICHD · GILLETTE CHILDREN'S SPECIALTY HEALTHCARE · PI BURKITT, CHANTEL COURTNEY · 2022 to 2025
$2.2M
Evaluating the psychometric properties of three clinical trial outcome measures for Rett syndromeR21HD101075 · NICHD · UNIVERSITY OF MINNESOTA · PI BYIERS, BREANNE J · 2019 to 2020
$410k
Evaluating the Psychometric Properties of a Pain Assessment Battery for Cerebral PalsyR03HD094581 · NICHD · GILLETTE CHILDREN'S SPECIALTY HEALTHCARE · PI BURKITT, CHANTEL COURTNEY · 2019 to 2020
$297k
NICHD NIH HHS R01 HD108406NICHD NIH HHS R03 HD094581NICHD NIH HHS R21 HD101075
6 · The paper itself

Abstract

Background: Although delayed or decreased responses to pain are commonly reported among caregivers of individuals with Rett syndrome (RTT), previous studies in relatively small samples have documented that caregivers are concerned about pain, particularly due to gastrointestinal and musculoskeletal conditions. Aims: The purpose of the current study was to investigate in detail caregivers' perceptions of pain sensitivity, as well as the types, severity, and effect of pain experienced by individuals with RTT in a larger sample than previous studies. Methods: A total of 51 caregivers (mostly mothers) participated in the study, which involved standardized questionnaires and interviews. The individuals with RTT ranged in age from 2 to 52 years of age, and most ( Results: Across the sample, 84% of caregivers reported that they believed that their child was less sensitive to pain compared to her typically developing peers. Despite this perception, 63% of caregivers reported that their child had experienced at least one form of pain in the previous 7 days, and 57% reported their child experienced at least one form of chronic pain. On average, caregivers reported that their child's pain was of moderate severity and interfered with at least one activity of daily living. Conclusions: The results suggest that pain is a substantial concern among caregivers of individuals with RTT and indicate that additional research is needed to understand the apparent paradox of frequently reported pain experiences despite widespread perceptions of decreased pain sensitivity.

Indexed as

caregiver reportchronic painintellectual and developmental disabilitiespain burdenRett syndrome

Identifiers

PMID37533505
PMCPMC10392763
OpenAlexW4381852374

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.