Medical College of Wisconsin
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Use of the new pediatric PROMIS measures of pain and physical experiences for children with sickle cell disease. Pediatr Blood Cancer 2019 05;66(5):e27633



Pubmed ID




Scopus ID

2-s2.0-85060736300   18 Citations


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 reliabilityA >A 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.

Author List

Singh A, DasGupta M, Simpson PM, Panepinto JA


Ashima Singh PhD Assistant Professor in the Pediatrics department at Medical College of Wisconsin

MESH terms used to index this publication - Major topics in bold

Anemia, Sickle Cell
Child, Preschool
Cross-Sectional Studies
Follow-Up Studies
Pain Measurement
Quality of Life
Reproducibility of Results
Self Report
Surveys and Questionnaires