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ORIGINAL RESEARCH article

Front. Pediatr.
Sec. Pediatric Gastroenterology, Hepatology and Nutrition
Volume 12 - 2024 | doi: 10.3389/fped.2024.1473286
This article is part of the Research Topic Advances towards Precision Medicine in Pediatric-onset Inflammatory Bowel Disease View all articles

Responsiveness and Clinical Utility of PROMIS Instruments in Pediatric Crohn's Disease: Insights from a Longitudinal Study

Provisionally accepted
Sara Azevedo Sara Azevedo 1,2*Maria Miguel Oliveira Maria Miguel Oliveira 3,4,5Paulo Jorge Nogueira Paulo Jorge Nogueira 3,4,5,6Ana Isabel Lopes Ana Isabel Lopes 1,2
  • 1 Gastroenterology Unit, Pediatrics Department, Santa Maria University Hospital, Lisbon, Portugal
  • 2 Pediatrics University Clinic, Medical School, University of Lisbon, Lisbon,, Portugal
  • 3 Área Disciplinar Autónoma de Bioestatística- Laboratório de Biomatemática, Medical School, University of Lisbon., Lisbon, Portugal
  • 4 Instituto de Medicina Preventiva e Saúde Pública, Faculdade de Medicina, Universidade de Lisboa, Lisboa, Portugal
  • 5 Laboratório Associado TERRA. Instituto de Saúde Ambiental. Medical School, University of Lisbon., Lisbon, Portugal
  • 6 Centro de Investigação, Inovação e Desenvolvimento em Enfermagem de Lisboa. Escola Superior de Enfermagem de Lisboa., Lisbon, Portugal

The final, formatted version of the article will be published soon.

    Background: Inflammatory Bowel Disease (IBD) may adversely affect physical, psychological, and social well-being. Integrating patient-reported outcomes (PROs) into clinical practice is crucial for comprehensive disease management.Objective: To evaluate the responsiveness and clinical utility of the Patient-Reported Outcomes Measurement Information System (PROMIS) instruments, compared to standard clinical assessment tools in pediatric CD patients. Methods: Longitudinal, prospective study with 31 pediatric Crohn's Disease (CD) patients aged 8-17 years recruited from a Pediatric Gastroenterology Unit. Data were collected at baseline and every six months over 18 months. PROMIS Pediatric measures assessed PROs. Disease activity was evaluated using the Pediatric Crohn's Disease Activity Index (PCDAI) and clinical markers. IMPACT-III was also applied. Linear mixed-effects models (LMM) and bivariate analyses were used to assess changes over time. Results: PROMIS Global Health scores showed significant improvement over time, indicating enhanced overall health perceptions among patients. Notable reductions were observed in PROMIS Pain Interference and Fatigue scores, indicating better physical health. PROMIS Depression scores generally decreased, suggesting improved mental health. PCDAI scores, hemoglobin, and platelet count significantly changed and correlated with PROMIS measures. Globally, the study demonstrated significant and clinically relevant changes in multiple PROMIS measures, confirming their responsiveness to changes in disease activity. Conclusion: PROMIS instruments are clinically useful in managing pediatric CD, providing valuable insights into global health and quality of life. Integrating PROMIS measures into routine clinical practice may enhance disease management and treatment strategies for pediatric IBD patients.

    Keywords: health-related quality of life, inflammatory bowel disease, pediatric Crohn's disease, patient-reported outcomes measures, PROMIS, longitudinal study

    Received: 30 Jul 2024; Accepted: 23 Dec 2024.

    Copyright: © 2024 Azevedo, Oliveira, Nogueira and Lopes. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence: Sara Azevedo, Gastroenterology Unit, Pediatrics Department, Santa Maria University Hospital, Lisbon, Portugal

    Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.