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Identifying pain in children with CHARGE syndrome

Kasee K Stratton1, Timothy Hartshorne2

  • 1Department of Counseling, Educational Psychology, and Foundations, Mississippi State University, School Psychology Program, Box 9727, 543 Allen Hall, Mississippi State, MS 39762, USA, Phone: 662-325-5461.

Scandinavian Journal of Pain
|September 19, 2018
PubMed

Insights

Children with CHARGE syndrome experience pain, with shorter pain durations correlating with higher intensity. Established pain scales like the Non-Communicating Children's Pain Checklist-Revised (NCCPC-R) and the Pediatrics Pain Profile (PPP) can identify pain in this population.

Area of Science:

  • Medical Research
  • Pediatrics
  • Pain Management

Background:

  • CHARGE syndrome presents unique challenges in assessing pain due to communication difficulties.
  • Existing non-vocal pain assessment tools require evaluation for efficacy in this population.

Purpose of the Study:

  • To determine the frequency and intensity of pain in individuals with CHARGE syndrome.
  • To assess the utility of the Non-Communicating Children's Pain Checklist-Revised (NCCPC-R) and the Pediatrics Pain Profile (PPP) for pain assessment in children with CHARGE syndrome.

Main Methods:

  • Parents of children with CHARGE syndrome completed pain questionnaires and two standardized pain assessments (NCCPC-R and PPP) during baseline (no pain) and painful episodes.
  • Statistical analysis included correlation, effect size, and t-tests to compare pain ratings.

Main Results:

  • A moderate negative correlation was observed between pain intensity and duration (ρ=-0.34), indicating higher intensity for shorter pain episodes.
  • Both the NCCPC-R and PPP demonstrated large effect sizes (d=1.3) in identifying pain compared to baseline.
  • Statistical significance (p<0.05) was found for both tools in distinguishing pain from no-pain states.

Conclusions:

  • Children with CHARGE syndrome do experience pain.
  • The NCCPC-R and PPP are effective in identifying pain in this population.
  • Future research should focus on developing a pain assessment tool tailored to the specific pain expressions observed in CHARGE syndrome.

Keywords:
CHARGE associationCHARGE syndromebehaviorcommunicationnon-vocalpain

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