Self-Reported Health Outcomes of Children and Youth with 10 Chronic Diseases - 22/06/22
Abstract |
Objectives |
To identify pediatric patient-reported outcomes (PROs) that are associated with chronic conditions and to evaluate the effects of chronic disease activity on PROs.
Study design |
Participants (8-24 years old) and their parents were enrolled into 14 studies that evaluated Patient-Reported Outcome Measurement Information System PROs across 10 chronic conditions—asthma, atopic dermatitis, cancer, cancer survivors, chronic kidney disease, Crohn's disease, juvenile idiopathic arthritis, lupus, sickle cell disease, and type 1 diabetes mellitus. PRO scores were contrasted with the US general population of children using nationally representative percentiles. PRO-specific coefficients of variation were computed to illustrate the degree of variation in scores within vs between conditions. Condition-specific measures of disease severity and Cohen d effect sizes were used to examine PRO scores by disease activity.
Results |
Participants included 2975 child respondents and 2392 parent respondents who provided data for 3409 unique children: 52% were 5-12 years old, 52% female, 25% African American/Black, and 14% Hispanic. Across all 10 chronic conditions, children reported more anxiety, fatigue, pain, and mobility restrictions than the general pediatric population. Variation in PRO scores within chronic disease cohorts was equivalent to variation within the general population, exceeding between-cohort variation by factors of 1.9 (mobility) to 5.7 (anxiety). Disease activity was consistently associated with poorer self-reported health, and these effects were weakest for peer relationships.
Conclusions |
Chronic conditions are associated with symptoms and functional status in children and adolescents across 10 different disorders. These findings highlight the need to complement conventional clinical evaluations with those obtained directly from patients themselves using PROs.
Le texte complet de cet article est disponible en PDF.Keywords : patient-reported outcomes, PROMIS, chronic disease, child
Abbreviations : CV, HbA1c, PEPR, PRO, PROMIS
Plan
All phases of this study were supported by the following National Institutes of Health grants: U19AR069525 to C.F., U19AR069522 to B.R., U19AR069519, and U19AR069526 to J-S. L.. Funding for the Childhood Asthma Gaps in Outcomes and the ASIST study was also provided by the Patient-Centered Outcomes Research Institution (contract numbers AS-1307-05420 to J.K. and AS-1307-05588 to K.S.). The authors declare no conflicts of interest. |
Vol 246
P. 207 - juillet 2022 Retour au numéroBienvenue sur EM-consulte, la référence des professionnels de santé.
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