Use of the new pediatric PROMIS measures of pain and physical experiences for children with sickle cell disease

Pediatr Blood Cancer. 2019 May;66(5):e27633. doi: 10.1002/pbc.27633. Epub 2019 Jan 28.


Background: There are new pediatric domains to measure patients' pain and physical experiences in the Patient-Reported Outcomes Measurement Information System (PROMIS). The objective of this study was to establish the psychometric properties of these domains for children with sickle cell disease (SCD).

Procedure: We conducted a cross-sectional analysis of PROMIS assessments of children with SCD recruited from a pediatric tertiary care clinic. Validity of the new PROMIS domains was determined by comparing scores between known groups and describing their correlations with previously validated PROMIS measures. Cronbach's alpha and item response theory (IRT) reliability were used to assess internal consistency reliability. Agreement between parent-proxy and child self-report was determined for all domains.

Results: Our study included 164 subjects, of whom 117 were eligible to self-report. The mean T-scores for physical stress experience, strength impact, pain behavior, and pain quality sensory scores were significantly different between children who used pain medications in the prior week and those who did not. There were also differences in T-scores across children reporting mild, moderate, and severe pain on the pain intensity scale. All measures had Cronbach's alpha and IRT reliability > 0.80. The percentage of agreement between child and parent-proxy PROMIS domains ranged from 36% to 60% depending on the domain.

Conclusions: The new PROMIS domains of physical stress experience, strength impact, pain behavior, and pain quality sensory domains are valid and reliable for children with SCD. The low-moderate agreement between parent-proxy and child self-report scores support the complementary information provided by the two perspectives.

Keywords: PROMIS; reliability; sickle cell disease; validity.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adolescent
  • Anemia, Sickle Cell / complications*
  • Child
  • Child, Preschool
  • Cross-Sectional Studies
  • Female
  • Follow-Up Studies
  • Humans
  • Male
  • Pain / diagnosis*
  • Pain / etiology
  • Pain / psychology
  • Pain Measurement / methods*
  • Prognosis
  • Psychometrics
  • Quality of Life
  • Reproducibility of Results
  • Self Report*
  • Surveys and Questionnaires