Author information

¹University of Minnesota Masonic Children's Hospital, Minneapolis, MN.

²Department of Epidemiology, University of Pittsburgh, Pittsburgh, PA.

³Department of Paediatrics, University of Toronto, and The Hospital for Sick Children, Toronto, Ontario.

⁴Department of Pediatrics, University of Washington, Seattle, WA.

⁵Mirum Pharmaceuticals, Inc, Foster City, CA.

⁶Department of Pediatrics, University of California at San Francisco, San Francisco, CA.

⁷Department of Pediatrics, University of Texas Southwestern Medical Center, Dallas, TX.

⁸Department of Pediatrics, Saint Louis University, Saint Louis, MO.

⁹Department of Pediatrics, Johns Hopkins Medical Institutions, Baltimore, MD.

Abstract

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 (HBRN). 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 (IQR: 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- -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.