Disclosure and self-report of emotional, social, and physical health in children and adolescents with chronic pain--a qualitative study of PROMIS pediatric measures

J Pediatr Psychol. 2013 Jan-Feb;38(1):82-93. doi: 10.1093/jpepsy/jss099. Epub 2012 Sep 30.

Abstract

Objectives: To examine the content validity of the Patient-Reported Outcomes Measurement Information System pediatric measures, including the pain interference scale, among children and adolescents (aged 8-18 years) who experience chronic pain. To describe children's understandings of the health domain constructs and elucidate verbal and conceptual aspects of self-reported pain-related functioning, which shape disclosure and reporting.

Methods: 34 children and youth with diagnoses of juvenile idiopathic arthritis or noninflammatory chronic pain completed semistructured and cognitive interviews exploring the meaning, experience, and expression of up to 4 of the Patient-Reported Outcomes Measurement Information System pediatric domains: anger, anxiety, depressive symptoms, fatigue, pain interference, and peer relationships. Team-based thematic and content analyses were conducted.

Results: Clear verbal and social-cognitive differences were observed in representations and accounts of the domain-experiences across age-groups, but we noted little, if any, evidence of problems with content validity.

Conclusions: Findings suggest the importance of a rigorous developmental approach for understanding the verbal and cognitive dimensions of pediatric self-reports and patient-reported outcomes.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't
  • Validation Study

MeSH terms

  • Adaptation, Psychological*
  • Adolescent
  • Affect
  • Anger
  • Child
  • Chronic Pain / psychology*
  • Depression / psychology
  • Emotions*
  • Female
  • Health Status
  • Humans
  • Male
  • Mental Health*
  • Qualitative Research
  • Quality of Life
  • Self Disclosure*
  • Self Report