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

Lyan H Rodijk; Ruben H de Kleine; Henkjan J Verkade; Behrooz Z Alizadeh; Marieke J Witvliet; Jan B F Hulscher; Janneke L M Bruggink

doi:10.1016/j.jpedsurg.2021.05.026

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

Lyan H Rodijk, Ruben H de Kleine, Henkjan J Verkade, Behrooz Z Alizadeh, Marieke J Witvliet, Jan B F Hulscher, Janneke L M Bruggink^*

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

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Abstract

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.

Original language	English
Pages (from-to)	649-654
Number of pages	6
Journal	Journal of Pediatric Surgery
Volume	57
Issue number	4
Early online date	5-Jun-2021
DOIs	https://doi.org/10.1016/j.jpedsurg.2021.05.026
Publication status	Published - Apr-2022

Keywords

Biliary atresia
Parents
Quality of life
Anxiety
Stress
QUALITY-OF-LIFE
STRESS
ANXIETY
CAREGIVERS
DISEASE
IMPACT

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@article{67da5d9dbb1a4dc4b7a1628310add032,

title = "Parental wellbeing after diagnosing a child with biliary atresia: A prospective cohort study",

abstract = "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.",

keywords = "Biliary atresia, Parents, Quality of life, Anxiety, Stress, QUALITY-OF-LIFE, STRESS, ANXIETY, CAREGIVERS, DISEASE, IMPACT",

author = "Rodijk, {Lyan H} and {de Kleine}, {Ruben H} and Verkade, {Henkjan J} and Alizadeh, {Behrooz Z} and Witvliet, {Marieke J} and Hulscher, {Jan B F} and Bruggink, {Janneke L M}",

year = "2022",

month = apr,

doi = "10.1016/j.jpedsurg.2021.05.026",

language = "English",

volume = "57",

pages = "649--654",

journal = "Journal of Pediatric Surgery",

issn = "0022-3468",

publisher = "W B SAUNDERS CO-ELSEVIER INC",

number = "4",

}

TY - JOUR

T1 - Parental wellbeing after diagnosing a child with biliary atresia

T2 - A prospective cohort study

AU - Rodijk, Lyan H

AU - de Kleine, Ruben H

AU - Verkade, Henkjan J

AU - Alizadeh, Behrooz Z

AU - Witvliet, Marieke J

AU - Hulscher, Jan B F

AU - Bruggink, Janneke L M

PY - 2022/4

Y1 - 2022/4

N2 - 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.

AB - 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.

KW - Biliary atresia

KW - Parents

KW - Quality of life

KW - Anxiety

KW - Stress

KW - QUALITY-OF-LIFE

KW - STRESS

KW - ANXIETY

KW - CAREGIVERS

KW - DISEASE

KW - IMPACT

U2 - 10.1016/j.jpedsurg.2021.05.026

DO - 10.1016/j.jpedsurg.2021.05.026

M3 - Article

C2 - 34210523

SN - 0022-3468

VL - 57

SP - 649

EP - 654

JO - Journal of Pediatric Surgery

JF - Journal of Pediatric Surgery

IS - 4

ER -

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

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