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Parental wellbeing after diagnosing a child with biliary atresia: A prospective cohort study
Lyan H Rodijk1, Ruben H de Kleine2, Henkjan J Verkade3
1Section of Pediatric Surgery, Department of Surgery, University Medical Center Groningen, the Netherlands.
Insights
Mothers of infants with biliary atresia (BA) experience elevated anxiety for up to three years post-diagnosis. Parental quality of life (QoL) remains largely unaffected by a BA diagnosis.
Area of Science:
- Pediatric Gastroenterology
- Childhood Liver Disease
- Parental Mental Health
Background:
- Biliary atresia (BA) is a severe neonatal liver disease requiring prompt intervention.
- Understanding the psychological impact on parents is crucial for comprehensive care.
- Previous research has not fully elucidated long-term parental anxiety, stress, and quality of life (QoL) in BA cases.
Purpose of the Study:
- To assess anxiety, stress, and QoL in parents of children diagnosed with BA.
- To track these psychological parameters over time post-diagnosis.
Main Methods:
- A cohort of 52 parents of 30 BA patients (aged 0-3 years) was studied.
- Validated questionnaires were administered at three time points: initial hospitalization (T0), 1-2 months post-diagnosis (T1), and 2-3 years post-diagnosis (T2).
- Data were analyzed using medians and compared to reference values.
Main Results:
- Fathers showed no significant differences in anxiety or stress compared to reference values.
- Mothers reported significantly higher anxiety levels than reference values at all time points, decreasing by 23% from T0 to T2.
- Maternal stress was higher at T1 than T2, but not significantly different from reference values at any point. Overall parental QoL was unaffected.
Conclusions:
- Mothers of infants with BA exhibit persistent high anxiety levels for up to three years after diagnosis.
- Despite maternal anxiety, the overall quality of life for parents of children with BA is generally unaffected.
Purpose:
To determine anxiety, stress, and quality of life (QoL) in parents of children who are diagnosed with biliary atresia (BA).
Methods:
Parents of BA patients (0-3 years) completed validated questionnaires at three time points: at first hospitalization (T0); 1-2 months post diagnosis (T1); and 2-3 years post diagnosis (T2). Results are presented in medians (min-max).
Results:
We included 52 parents (age 31 [24-51 y], 31 females) of 30 BA patients. In fathers, neither anxiety nor stress levels significantly differed from reference values. Mothers reported significantly higher anxiety levels compared to reference values (T0: 48 vs 35, p = 0.001; T1: 43 vs 35, p = 0.03; T2: 37 vs 35, p = 0.04), which significantly decreased over time (-23% between T0 and T2: p = 0.04). Stress in mothers was significantly higher at T1 than at T2 (+35%, p = 0.02), but was not significantly different from reference values at each time point (T0: 17 vs 14, p = 0.07; T1: 18 vs 14, p = 0.09; T2: 13 vs 14, p = 0.52).The overall QoL in mothers and fathers was rather unaffected.
Conclusions:
Particularly mothers of infants diagnosed with BA report high anxiety levels up to three years after diagnosis. The overall QoL of parents is rather unaffected after diagnosing BA in their child.
Level Of Evidence:
Level 2.
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