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Self-Reported Health Outcomes of Children and Youth with 10 Chronic Diseases - 22/06/22

Doi : 10.1016/j.jpeds.2022.02.052 
Christopher B. Forrest, MD, PhD 1, , Julia Schuchard, PhD 1, , Cortney Bruno, MSW 1, Sandra Amaral, MD, MHS 1, Elizabeth D. Cox, MD, PhD 2, Kathryn E. Flynn, PhD 3, Pamela S. Hinds, RN, PhD 4, I-Chan Huang, PhD 5, Michael D. Kappelman, MD, MPH 6, Jerry A. Krishnan, MD, PhD 7, Rajesh B. Kumar, MD 8, Jin-Shei Lai, PhD 9, Amy S. Paller, MD 9, Wanda Phipatanakul, MD, MS 10, Laura E. Schanberg, MD 11, Kaharu Sumino, MD, PhD 12, Elissa R. Weitzman, ScD, MSc 10, Bryce B. Reeve, PhD 11
1 Children's Hospital of Philadelphia, Philadelphia, PA 
2 University of Wisconsin-Madison Schools of Medicine and Public Health, Madison, WI 
3 Medical College of Wisconsin, Milwaukee, WI 
4 Children's National Medical Center, Washington, DC 
5 St. Jude Children's Research Hospital, Memphis, TN 
6 UNC School of Medicine, Chapel Hill, NC 
7 The University of Illinois Chicago, Chicago, IL 
8 Northwestern University Feinberg School of Medicine and the Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL 
9 Northwestern University Feinberg School of Medicine 
10 Boston Children's Hospital, Boston, MA 
11 Duke University School of Medicine, Durham, NC 
12 Washington University School of Medicine, St. Louis, MO 

Reprint requests: Christopher B. Forrest, MD, PhD, Applied Clinical Research Center, Children's Hospital of Philadelphia, 2716 South St, Suite 11-473, Philadelphia PA, 19146.Applied Clinical Research CenterChildren's Hospital of Philadelphia2716 South St, Suite 11-473PhiladelphiaPA19146

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.


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Vol 246

P. 207 - juillet 2022 Retour au numéro
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