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

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, ages 9 to 17, with Crohn’s disease and their parents from the web-based Crohn’s and Colitis Foundation of America Kids & 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<0.005 for all), Crohn’s disease activity in the prior 6 months (per Manitoba Index, p<0.01 for all) and health related quality of life (per IMPACT-35, p<0.001 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=0.07). Conclusions PROMIS scores were significantly associated with known groups of 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.

Systematic review with meta‐analysis: anxiety and depression in children and adolescents with inflammatory bowel disease

“…Mean age was 14.3 (based on 25 studies that reported a mean age). Three studies included only patients with CD . In the remaining studies that reported disease type, 67.1% had CD.…”

“…Finally, in 23 out of 28 studies, clinical disease activity was measured for CD, with the following indices: Paediatric Crohn's Disease Activity Index (PCDAI), short‐PCDAI abbreviated PCDAI, Harvey Bradshaw Index, Physician Global Assessment (PGA), (part of) Children's Somatisation Inventory, IBD‐symptom questionnaire, and Short‐Crohn's Disease Activity Index . Twenty‐five studies included UC patients and in 21 disease activity was measured using the following indices; Paediatric Ulcerative Colitis Activity Index (PUCAI), Physician Global Assessment, (part of) Children's Somatisation Inventory, IBD‐symptom questionnaire, Clinical score of Kozarek, Lichtiger Colitis Activity index, and PCDAI .…”

“…Ten studies (including 1155 participants) reported on the prevalence of anxiety symptoms, using seven different instruments. The pooled estimate of prevalence of anxiety symptoms was 16.4% (95% CI 6.8%‐27.3%) with a high level of heterogeneity between estimates ( I 2 = 92.9%, P < 0.001).…”

“…Twenty‐two studies reported on depressive symptoms (including 2911 participants), using nine different instruments, including three versions of the Child Depression Inventory (CDI). The pooled estimate of prevalence of depressive symptoms was 15.0% (95% CI 6.4%‐24.8%), with a high level of heterogeneity ( I 2 = 95.0%, P < 0.001).…”

Parent Experience of Neonatal Encephalopathy

“…There is a growing interest in defining family-centered and parent-reported outcomes in fetal, 27 infant, 28 and childhood 29 conditions. The themes from this study suggest we should build on these efforts to define and measure family-centered outcomes in neonatal encephalopathy.…”