Parental wellbeing after diagnosing a child with biliary atresia: A prospective cohort study

• Published in: Journal of pediatric surgery Vol. 57; no. 4; pp. 649 - 654
• Main Authors: Rodijk, Lyan H., de Kleine, Ruben H., Verkade, Henkjan J., Alizadeh, Behrooz Z., Witvliet, Marieke J., Hulscher, Jan B.F., Bruggink, Janneke L.M.
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.04.2022
• Subjects: Adult; Anxiety; Anxiety - diagnosis; Anxiety - etiology; Biliary atresia; Biliary Atresia - diagnosis; Biliary Atresia - surgery; Child; Female; Humans; Infant; Parents; Prospective Studies; Quality of Life; Stress; KPE; LTx; Biliary atresia; Parents; Anxiety; Stress; Quality of life; BA; QoL
• ISSN: 0022-3468; 1531-5037
• DOI: 10.1016/j.jpedsurg.2021.05.026

•The first years after biliary atresia diagnosis parents report anxiety.•Parents with high levels of anxiety and stress are at risk of impaired QoL.•Psychosocial support for parents after biliary atresia diagnosis is warranted. To determine anxiety, stress, and quality of life (QoL) in parents of children who are diagnosed with biliary atresia (BA). 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). 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. 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 2.