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Discrepancies in perceptions of well-being: comparing parental and pediatric PROMIS-patient-reported outcomes in Crohn’s disease

2025Journal article Open access
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dc.contributor.authorAzevedo, Sara
dc.contributor.authorOliveira, Maria Miguel
dc.contributor.authorNogueira, Paulo Jorge
dc.contributor.authorLopes, Ana Isabel
dc.date.accessioned2025-06-11T13:20:31Z
dc.date.available2025-06-11T13:20:31Z
dc.date.issued2025
dc.description© The Author(s) 2025. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.pt_PT
dc.description.abstractBackground: This study aims to evaluate and compare the perspectives of pediatric Crohn's disease (CD) patients and their parents/caregivers concerning global physical, emotional, and social health as well as health-related quality of life (HRQQL), using both the Patient-Reported Outcomes Measurement Information System (PROMIS) and the IMPACT III questionnaire. Methods: In a cross-sectional study, 31 dyads of pediatric CD patients (aged 8-17 years) and their parents/caregivers were recruited from an outpatient Pediatric Gastroenterology Center. Participants completed PROMIS (Global Health, Depressive Symptoms, Anxiety, Meaning and Purpose Pain Interference Life Satisfaction, Peer Relationships, Physical Activity and Fatigue) and IMPACT III measures. Comparative analyses using t-tests and multivariate analyses assessed the impact of demographic factors on score differences. Cohen's Kappa analysis evaluated the alignment between parent and child perceptions of disease status. Results: The sample comprised 58% females with a mean age of 15.2 (± 2) years and a mean disease duration of 2.7 (± 2.7) years. Most patients were in disease remission (83.9%) and perceived their disease as better or unchanged in the past 6 months. Concerning PROMIS scores, parents reported significantly lower global health scores (p < 0.001) and higher meaning and purpose scores (p = 0.029) compared to their children. Parental education and professional status significantly influenced PROMIS score differences. Specifically, mothers with specialized professions showed smaller differences in PROMIS depression and pain interference, although greater differences in PROMIS meaning and purpose, as compared to their respective children's scores. Fathers with specialized professions demonstrated greater differences in PROMIS anxiety scores but smaller differences in PROMIS life satisfaction scores. A significant misalignment between parent and child subjective perceptions of disease status was observed (p = 0.004), suggesting that parents may overestimate symptom severity or underestimate improvements compared to their children's experiences. Conclusion: This study highlights the importance of integrating patient and parental perspectives in the clinical management of pediatric CD. The observed discrepancies in disease-related perceptions, influenced by parental educational and professional background, underscore the need for comprehensive assessments to ensure accurate, patient-centered care. For broader generalization, further research should explore these dynamics in newly diagnosed and hospitalized patients.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationJ Patient Rep Outcomes. 2025 Mar 28;9(1):37pt_PT
dc.identifier.doi10.1186/s41687-025-00870-9pt_PT
dc.identifier.eissn2509-8020
dc.identifier.urihttp://hdl.handle.net/10400.5/101487
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherSpringer Naturept_PT
dc.relation.publisherversionhttps://jpro.springeropen.com/pt_PT
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/pt_PT
dc.subjectCaregiverspt_PT
dc.subjectHealth-related quality of lifept_PT
dc.subjectInflammatory bowel diseasept_PT
dc.subjectPROMISpt_PT
dc.subjectParentspt_PT
dc.subjectPatient reported outcomespt_PT
dc.subjectPediatric Crohn’s diseasept_PT
dc.titleDiscrepancies in perceptions of well-being: comparing parental and pediatric PROMIS-patient-reported outcomes in Crohn’s diseasept_PT
dc.typejournal article
dspace.entity.typePublication
oaire.citation.issue1pt_PT
oaire.citation.titleJournal of Patient-Reported Outcomespt_PT
oaire.citation.volume9pt_PT
person.familyNameAzevedo
person.familyNameGomes Oliveira
person.familyNameNogueira
person.givenNameSara
person.givenNameMaria Miguel
person.givenNamePaulo Jorge
person.identifier1013768
person.identifier.ciencia-id6E13-B03E-E361
person.identifier.ciencia-id2410-2DCC-F213
person.identifier.orcid0000-0002-3168-5917
person.identifier.orcid0009-0007-9160-0157
person.identifier.orcid0000-0001-8316-5035
person.identifier.ridAAR-5605-2020
person.identifier.scopus-author-id7005428250
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT
relation.isAuthorOfPublication4d6d8e30-3e73-4528-a09d-472546057f91
relation.isAuthorOfPublication127d8f63-d204-450e-9e8a-ffea8d47af03
relation.isAuthorOfPublication9d24d0e5-5fab-4fef-b962-b0333e28f9d1
relation.isAuthorOfPublication.latestForDiscovery4d6d8e30-3e73-4528-a09d-472546057f91

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