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Published on: October 3, 2020
Parent-reported pain in Rett syndrome.
Frank J Symons1, Breanne Byiers, Raymond C Tervo
1Department of Educational Psychology, University of Minnesota, Minneapolis, MN 55455, USA. symon007@umn.edu
The Clinical Journal of Pain
|July 10, 2013
Summary
Pain is a significant issue for individuals with Rett syndrome (RTT), with nearly a quarter experiencing chronic pain. Facial expressions and vocalizations are key pain indicators, often linked to gastro-intestinal problems.
Area of Science:
- Neurology
- Pediatrics
- Pain Management
Background:
- Rett syndrome (RTT) is a neurodevelopmental disorder characterized by severe motor and communication impairments.
- Patients with RTT often have chronic health issues, increasing the risk of unrecognized pain.
- Accurate pain assessment is challenging due to communication difficulties in RTT.
Purpose of the Study:
- To investigate the frequency, communication methods, and sources of pain in individuals with Rett syndrome.
- To provide preliminary data on the prevalence and characteristics of pain in this population.
Main Methods:
- A health survey was administered to caregivers of 44 clinically diagnosed RTT patients.
- The survey included items from the Non-Communicating Children's Pain Checklist - Revised to assess pain.
- Data collected included pain frequency, communication methods, and pain sources.
Main Results:
- 24% of surveyed individuals with RTT experienced pain on 8 or more days in the prior month.
- Facial expressions (85%) and vocalizations (82%) were the most common pain communication methods.
- Gastro-intestinal issues were the most frequently reported pain source (66%).
Conclusions:
- Pain is a prevalent issue for a significant subgroup of individuals with Rett syndrome.
- The findings highlight the need for increased awareness and improved pain recognition in RTT patients.
- The complex health and communication challenges in RTT necessitate careful pain assessment strategies.
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