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. 2016 Jul:174:153-159.e2.
doi: 10.1016/j.jpeds.2016.03.069. Epub 2016 May 2.

Patient-Reported Outcomes Measurement Information System in Children with Crohn's Disease

Marina Arvanitis  1 , Darren A DeWalt  2 , Christopher F Martin  2 , Millie D Long  2 , Wenli Chen  2 , Beth Jaeger  2 , Robert S Sandler  2 , Michael D Kappelman  2
Affiliations

Patient-Reported Outcomes Measurement Information System in Children with Crohn's Disease

Marina Arvanitis et al. J Pediatr. 2016 Jul.

Abstract

Objectives: To assess the criterion validity and responsiveness of Patient-Reported Outcomes Measurement Information System (PROMIS) in a web-based cohort of children with Crohn's disease.

Study design: We recruited children with Crohn's disease (ages 9-17 years) and their parents from the web-based Crohn's and Colitis Foundation of America Kids and Teens Study cohort. Upon entry into the cohort and 6 months later, children self-reported Crohn's disease activity, health-related quality of life, and PROMIS domains of pain interference, anxiety, depression, fatigue, and peer relationships.

Results: Mean PROMIS scores for the 276 participating patients were worse among those with worse self-reported Crohn's disease activity (per Short Crohn's Disease Activity Index, P < .005 for all), Crohn's disease activity in the prior 6 months (per Manitoba Index, P < .01 for all), and health-related quality of life (per IMPACT-35, P < .001 for all). One hundred forty-three patients and their parents completed follow-up questionnaires, 75% of whom reported stable disease activity. Those with improved Crohn's disease activity reported improved PROMIS scores, and those with worsened Crohn's disease activity reported worse PROMIS scores for all domains except anxiety. All participants reported improved anxiety from baseline, but those with stable or worsened Crohn's disease activity reported less improvement (P = .07).

Conclusions: PROMIS scores were significantly associated with Crohn's disease activity in a linear and clinically meaningful manner, and responded to change in Crohn's disease activity over a 6-month period. This supports the criterion validity and responsiveness of pediatric PROMIS.

Keywords: Crohn's disease; PROMIS; anxiety; depression; fatigue; patient-reported outcomes; peer relationships; quality of life.

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Conflict of interest statement

The authors declare no conflicts of interest.

Figures

Figure 1
Figure 1
a. “Improved” patients reported a 70-point improvement in SCDAI score from baseline to time of 6-month follow-up, “Worsened” reported as 70-point worsening in SCDAI score from baseline b. Higher T-score score indicates worse anxiety, depression, fatigue, pain interference, and better peer relationships c. Secondary/Right-sided axis for peer relationships scores only
See this image and copyright information in PMC

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