Self-Reported Health Outcomes of Children and Youth with 10 Chronic Diseases. J Pediatr 2022 Jul;246:207-212.e1
Date
03/06/2022Pubmed ID
35247394Pubmed Central ID
PMC9232908DOI
10.1016/j.jpeds.2022.02.052Scopus ID
2-s2.0-85127527752 (requires institutional sign-in at Scopus site) 12 CitationsAbstract
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.
Author List
Forrest CB, Schuchard J, Bruno C, Amaral S, Cox ED, Flynn KE, Hinds PS, Huang IC, Kappelman MD, Krishnan JA, Kumar RB, Lai JS, Paller AS, Phipatanakul W, Schanberg LE, Sumino K, Weitzman ER, Reeve BBAuthor
Kathryn Eve Flynn PhD Vice Chair, Professor in the Medicine department at Medical College of WisconsinMESH terms used to index this publication - Major topics in bold
AdolescentAdult
Anxiety
Asthma
Child
Child, Preschool
Chronic Disease
Fatigue
Female
Humans
Male
Patient Reported Outcome Measures
Quality of Life
Self Report
Young Adult
