title: Parent-reported pain in Rett syndrome.
abstract: OBJECTIVE
  Clinical reports suggest that patients with Rett syndrome (RTT) live with significant chronic health issues as well as severe motor and communication impairments. Consequently, patients with RTT may be at risk for living with pain but not having it recognized. The purpose of this preliminary study was to document parent reported estimates of pain frequency, pain communication, and pain source.
  
  
  METHODS
  Caregivers of 44 patients with clinically diagnosed RTT (mean RTT age = 21.5, SD = 13.5) completed a health survey about their daughter that contained a number of items specific to pain from the Non-Communicating Children's Pain Checklist - Revised
  
  
  RESULTS
  Among survey responders, 24% reported that their child had experienced pain on 8 or more days (> 1 week) in the previous 30 days. The most frequent form of pain communication was facial expression (85%) and vocalization (82%, eg, moan, cry). The most commonly reported pain source was gastro-intestinal (66%). Pain frequency was significantly (P<0.05) correlated with age (0.41), number of pain sources (0.72), and number of health problems (0.45); and the number pain sources was significantly (P<0.05) correlated with number of health problems (0.67).
  
  
  CONCLUSIONS
  These preliminary results suggest that pain is a problem for a significant subgroup of patients with RTT. Almost one quarter of respondents indicated their daughters experience over a week of pain per month. The frequent health and communication issues associated with RTT suggest an increased risk that pain may be overlooked or discounted in this vulnerable population.
authors.affiliation: Department of Educational Psychology, University of Minnesota, Minneapolis, MN 55455, USA. symon007@umn.edu
authors.forename: Frank J
authors.initials: FJ
authors.lastname: Symons
authors.forename: Breanne
authors.initials: B
authors.lastname: Byiers
authors.forename: Raymond C
authors.initials: RC
authors.lastname: Tervo
authors.forename: Arthur
authors.initials: A
authors.lastname: Beisang
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D005260:Female; D006306:Health Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D010146:Pain / Q000209:etiology*; D010290:Parents / Q000523:psychology*; D015518:Rett Syndrome / Q000150:complications*; D055815:Young Adult