{"doi":"10.1093/ibd/izaa083","title":"Responsiveness of the Patient-reported Outcomes Measurement Information System (PROMIS) Pediatric Measures to Changes in Disease Status and Quality of Life Among Children and Adolescents With Crohn’s Disease","abstract":"BACKGROUND: PROMIS Pediatric domains provide self-reported measures of physical, emotional, and social health in children with chronic conditions. We evaluated the responsiveness of the PROMIS Pediatric measures to changes in disease activity and disease-specific, health-related quality of life (HRQOL) in children with Crohn's disease (CD). METHODS: IBD Partners Kids & Teens is an internet-based cohort of children with inflammatory bowel disease (IBD). Participants age 9 to 17 report symptoms related to disease activity (short Crohn's Disease Activity Index [sCDAI]), the IMPACT-III HRQOL measure, and 5 PROMIS Pediatric domains. We conducted longitudinal analyses using mixed linear models to examine the extent to which PROMIS Pediatric measures respond to changes in sCDAI and IMPACT-III. RESULTS: Our study sample included 544 participants with CD (mean age 13 years, 44% female). All PROMIS Pediatric domains responded to changes in sCDAI, indicating improved physical, emotional, and social health, corresponding to improved disease activity and the converse (P < 0.001). Observed effect estimates ranged from 1.8 for peer relationships to 6.8 for fatigue. Of 246 participants with 2 or more completed reports, disease activity was stable in 527, worse in 72, and improved in 67. Changes in PROMIS Pediatric scores were associated with changes in IMPACT-III (r = -0.43 for anxiety, r = -0.45 for depressive symptoms, r = -0.43 for pain interference, r = -0.59 for fatigue, and r = 0.23 for peer relationships). CONCLUSIONS: This study provides evidence for the longitudinal responsiveness of the PROMIS Pediatric measures to change in disease status and HRQOL in pediatric CD patients.","journal":"Inflammatory Bowel Diseases","year":2020,"id":105466,"datarank":0.0,"base_score":0.0,"endowment":0.0,"self_citation_contribution":0.0,"citation_network_contribution":0.0,"self_endowment_contribution":0.0,"citer_contribution":0.0,"corpus_percentile":null,"corpus_rank":null,"citation_count":23,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":0.9408,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2020-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":235302,"name":"Millie D. Long","orcid":"0000-0001-5983-2758","position":1,"is_corresponding":false},{"id":480740,"name":"Courtney M. Mann","orcid":"0000-0002-6969-0754","position":2,"is_corresponding":false},{"id":510214,"name":"Wenli Chen","orcid":"0000-0002-6486-0582","position":3,"is_corresponding":false},{"id":511036,"name":"Camila Reyes","orcid":null,"position":4,"is_corresponding":false},{"id":282786,"name":"Li Lin","orcid":"0000-0003-0530-185X","position":5,"is_corresponding":false},{"id":282778,"name":"Bryce B. Reeve","orcid":"0000-0002-6709-8714","position":6,"is_corresponding":false},{"id":109043,"name":"Michael D. Kappelman","orcid":"0000-0002-0469-6856","position":7,"is_corresponding":false},{"id":109030,"name":"Erica J. Brenner","orcid":"0000-0003-0292-3637","position":0,"is_corresponding":true}],"reference_count":31,"raw_metadata":null,"created_at":"2026-07-18T23:12:17.683386Z","pmid":"32435792","pmcid":null,"fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}