Change in Health-Related Quality of Life in Youth with Chronic Hepatitis B Living in North America: A 5-Year Cohort Study

Sarah Jane Schwarzenberg, Wendy C. King, Simon C. Ling, Karen F. Murray, Douglas Mogul, Philip Rosenthal, Norberto Rodriguez-Baez, Jeffrey Teckman, Kathleen B. Schwarz, Hongxia Li, Robert Anders, Hejab Imteyaz, Peter Lee, Kiyoko Oshima, Kim Kafka, Naureen Islam, Shannon R. Swim, Rosemary A. Nagy, Jacki Cerkoski, Athena HauCaitlin Yuan, Rosemary Swan, Constance O'Connor, Laurie A. Rodgers-Augustyniak, Shirley Montanye, Natasha Feier, Joel Feier, Shannon Fleck, Camille Langlois, Kara L. Cooper, Jay H. Hoofnagle, Averell H. Sherker, Edward Doo, Rebecca J. Torrance, Sherry R. Hall, Frani Averbach, Tamara Haller, Stephanie Kelley, Christina M. Lalama, Sharon Lawlor, Hsing Hua S. Lin, Manuel Lombardero, Andrew Pelesko, Donna Stoliker, Melissa Weiner, Ella Zadorozny

Research output: Contribution to journalArticlepeer-review


Background: Greater hepatitis-related symptomology is associated with lower health-related quality-of-life (HRQoL) among untreated youth with chronic hepatitis B (CHB). How HRQoL changes over time in this population is unknown. Methods: Children from 7 hepatology centers in North America positive for hepatitis B surface antigen, not taking anti-viral therapy, were enrolled in the Hepatitis B Research Network. A validated self-report HRQoL measure, the Child Health Questionnaire Child Report (CHQ-CF87), was completed annually by participants 10-17 years, with demographic variables, liver disease symptoms, and laboratory tests. Linear mixed-effects models were used to evaluate the 10 CHQ-CF87 subscale scores over 5 years among participants who completed the CHQ-CF87 at least twice. Results: Participants (N = 174) completed the CHQ-CF87 a median of 4 times. Median age was 12 years (interquartile range: 10-14) at baseline; 60% were female, 79% Asian, and 47% adopted. The CHQ-CF87 subscale scores were high at baseline (median range: 75.4-100) and did not differ by time point, except for the Family Activities subscale (mean [95% CI]: 82.3 [79.8-84.8] at baseline; 90.8 [86.1-94.6] week 240). Most subscale scores lacked sufficient individual-level variability in change over time to evaluate predictors. Being White versus Asian predicted a more favorable change in Behavior (6.5 [95% CI: 2.0-11.0]). Older age predicted less favorable change in Mental Health (-0.8 [95% CI: -1.36 to -0.23] per year). Changes in liver enzymes and hepatitis B antigens, DNA, or symptom count were not related to changes in these subscale scores. Conclusion: HRQoL was generally good and consistent across 5 years in youth with CHB.

Original languageEnglish (US)
Pages (from-to)713-719
Number of pages7
JournalJournal of pediatric gastroenterology and nutrition
Issue number6
StatePublished - Dec 1 2023

Bibliographical note

Publisher Copyright:
© 2023 Lippincott Williams and Wilkins. All rights reserved.


  • behavioral health
  • children
  • mental health

PubMed: MeSH publication types

  • Journal Article
  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't


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