Quality of Life of Parents and Patients with Biliary Atresia in Native Liver

Main Article Content

Jeannie Flynn
Rendi Aji Prihaningtyas
Syania Mega Octariyandra
Anindya Kusuma Winahyu
Bagus Setyoboedi
Mira Irmawati
Sjamsul Arief

Abstract

Children with chronic conditions such as biliary atresia may experience several issues that affect their quality of life (QoL). Childhood chronic disease impacts family members and leads to family health impairment. Objective: This study aims to asses the QoL of parents and patients with biliary atresia. Methods and material: The assessment of parent and patient quality of life with biliary atresia was conducted using the Pediatric Quality of Life (PedsQL) parent report and the World Health Organization Quality of Life (WHOQoL).Multivariate linear regression was used for associated factors. This case-control study involved 38 children (0-24 months) with biliary atresia at the Dr. Soetomo General Academic Hospital Surabaya, which was conducted from June to July 2023. Data obtained showed that male and female prevalence was equal (50%). Age <6 months, mothers with high school education, family income >3 million rupiahs, normal nutritional status were frequently in patients with biliary atresia. Based on the WHOQoL questionnaire, the environment was the only domain that impacted the quality of life of the parents significantly (P= 0.005). However, no significant association with patients' QoL was found for the five domains of the PedsQL. The environment factor had a significant impact on the QoL of the patient's parents according to the results of the WHOQoL questionnaire (P= 0.005).


 

Article Details

How to Cite
Flynn, J., Prihaningtyas, R. A., Octariyandra, S. M. ., Winahyu, A. K., Setyoboedi, B., Irmawati, M., & Arief, S. (2024). Quality of Life of Parents and Patients with Biliary Atresia in Native Liver . International Journal of Pharmaceutical and Bio Medical Science, 4(3), 159–163. https://doi.org/10.47191/ijpbms/v4-i3-07
Section
Articles

References

I. Bezerra, J. A., Wells, R. G., Mack, C. L., Karpen, S. J., Hoofnagle, J. H., Doo, E., & Sokol, R. J. (2018). Biliary Atresia: Clinical and Research Challenges for the Twenty‐First Century. Hepatology, 68(3), 1163–1173. https://doi.org/10.1002/hep.29905

II. Chan, K. W. E., Lee, K. H., Wong, H. Y. V., Tsui, S. Y. B., Mou, J. W. C., & Tam, Y. H. P. (2019). Ten-Year Native Liver Survival Rate After Laparoscopic and Open Kasai Portoenterostomy for Biliary Atresia. Journal of Laparoendoscopic & Advanced Surgical Techniques, 29(1), 121–125. https://doi.org/10.1089/lap.2018.0350

III. Feldman, A. G., Neighbors, K., Mukherjee, S., Rak, M., Varni, J. W., & Alonso, E. M. (2016). Impaired physical function following pediatric LT. Liver Transplantation, 22(4), 495–504. https://doi.org/10.1002/lt.24406

IV. Gad, E. H., Kamel, Y., Salem, T. A.-H., Ali, M. A.-H., & Sallam, A. N. (2021). Short- and long-term outcomes after Kasai operation for type III biliary atresia: Twenty years of experience in a single tertiary Egyptian center-A retrospective cohort study. Annals of Medicine and Surgery, 62, 302–314. https://doi.org/10.1016/j.amsu.2021.01.052

V. Golics, C. J., Basra, M. K. A., Finlay, A. Y., & Salek, S. (2013). The impact of disease on family members: A critical aspect of medical care. Journal of the Royal Society of Medicine, 106(10), 399–407. https://doi.org/10.1177/0141076812472616

VI. Group, W. (1994). Development of the WHOQOL: Rationale and Current Status. International Journal of Mental Health, 23(3), 24–56. https://doi.org/10.1080/00207411.1994.11449286

VII. Hukkinen, M., Ruuska, S., Pihlajoki, M., Kyrönlahti, A., & Pakarinen, M. P. (2022). Long-term outcomes of biliary atresia patients surviving with their native livers. Best Practice & Research Clinical Gastroenterology, 56–57, 101764. https://doi.org/10.1016/j.bpg.2021.101764

VIII. Hussain, M. H., Alizai, N., & Patel, B. (2017). Outcomes of laparoscopic Kasai portoenterostomy for biliary atresia: A systematic review. Journal of Pediatric Surgery, 52(2), 264–267. https://doi.org/10.1016/j.jpedsurg.2016.11.022

IX. Lakshminarayanan, B., & Davenport, M. (2016). Biliary atresia: A comprehensive review. Journal of Autoimmunity, 73, 1–9. https://doi.org/10.1016/j.jaut.2016.06.005

X. Le, M., Reinshagen, K., & Tomuschat, C. (2022). Systematic review: The quality of life of patients with biliary atresia. Journal of Pediatric Surgery, 57(12), 934–946. https://doi.org/10.1016/j.jpedsurg.2022.03.013

XI. Lisanti, A. J., Allen, L. R., Kelly, L., & Medoff-Cooper, B. (2017). Maternal Stress and Anxiety in the Pediatric Cardiac Intensive Care Unit. American Journal of Critical Care, 26(2), 118–125. https://doi.org/10.4037/ajcc2017266

XII. Miserachs, M., Parmar, A., Bakula, A., Hierro, L., D’Antiga, L., Goldschmidt, I., Debray, D., A McLin, V., Casotti, V., Pawłowska, J., Camarena, C., R Otley, A., Baumann, U., & L Ng, V. (2019). Health-related quality of life in pre-adolescent liver transplant recipients with biliary atresia: A cross-sectional study. Clinics and Research in Hepatology and Gastroenterology, 43(4), 427–435. https://doi.org/10.1016/j.clinre.2018.10.018

XIII. Ng, V. L., Haber, B. H., Magee, J. C., Miethke, A., Murray, K. F., Michail, S., Karpen, S. J., Kerkar, N., Molleston, J. P., Romero, R., Rosenthal, P., Schwarz, K. B., Shneider, B. L., Turmelle, Y. P., Alonso, E. M., Sherker, A. H., & Sokol, R. J. (2014). Medical Status of 219 Children with Biliary Atresia Surviving Long-Term with Their Native Livers: Results from a North American Multicenter Consortium. The Journal of Pediatrics, 165(3), 539-546.e2. https://doi.org/10.1016/j.jpeds.2014.05.038

XIV. Palladini, G. (2015). Role of matrix metalloproteinases in cholestasis and hepatic ischemia/reperfusion injury: A review. World Journal of Gastroenterology, 21(42), 12114. https://doi.org/10.3748/wjg.v21.i42.12114

XV. Parmar, A., Vandriel, S. M., & Ng, V. L. (2017). Health‐related quality of life after pediatric liver transplantation: A systematic review. Liver Transplantation, 23(3), 361–374. https://doi.org/10.1002/lt.24696

XVI. Pinquart, M. (2018). Parenting stress in caregivers of children with chronic physical condition—A meta‐analysis. Stress and Health, 34(2), 197–207. https://doi.org/10.1002/smi.2780

XVII. Rodijk, L. H., De Kleine, R. H., Verkade, H. J., Alizadeh, B. Z., Witvliet, M. J., Hulscher, J. B. F., & Bruggink, J. L. M. (2022). Parental wellbeing after diagnosing a child with biliary atresia: A prospective cohort study. Journal of Pediatric Surgery, 57(4), 649–654. https://doi.org/10.1016/j.jpedsurg.2021.05.026

XVIII. Rodijk, L. H., Schins, E. M. W., Witvliet, M. J., Alizadeh, B. Z., Verkade, H. J., De Kleine, R. H., Hulscher, J. B. F., & Bruggink, J. L. M. (2020). Quality of Life in Parents of Children With Biliary Atresia. Journal of Pediatric Gastroenterology & Nutrition, 71(5), 641–646. https://doi.org/10.1097/MPG.0000000000002858

XIX. Rohani, P., Mirrahimi, S. B., Bashirirad, H., Rahmani, P., Kamran, N., Alimadadi, H., Hajipour, M., & Sohouli, M. H. (2022). Serum matrix metalloproteinase-7 levels in infants with cholestasis and biliary atresia. BMC Pediatrics, 22(1), 351. https://doi.org/10.1186/s12887-022-03409-9

XX. Sundaram, S. S., Alonso, E. M., Haber, B., Magee, J. C., Fredericks, E., Kamath, B., Kerkar, N., Rosenthal, P., Shepherd, R., Limbers, C., Varni, J. W., Robuck, P., & Sokol, R. J. (2013). Health Related Quality of Life in Patients with Biliary Atresia Surviving with their Native Liver. The Journal of Pediatrics, 163(4), 1052-1057.e2. https://doi.org/10.1016/j.jpeds.2013.04.037

XXI. Wong, C. W. Y., Chung, P. H. Y., Tam, P. K. H., & Wong, K. K. Y. (2018). Long-term Results and Quality of Life Assessment in Biliary Atresia Patients: A 35-Year Experience in a Tertiary Hospital. Journal of Pediatric Gastroenterology & Nutrition, 66(4), 570–574. https://doi.org/10.1097/MPG.0000000000001854

XXII. Zhang, C.-L., Wu, Y., Bao, Y., Jiang, W.-Y., & Hu, X.-J. (2023). Psychological Journey and Coping Styles of Parents of Infants With Biliary Atresia: A Single-Center Qualitative Study. Advances in Neonatal Care, 23(5), E107–E113. https://doi.org/10.1097/ANC.0000000000001093

Most read articles by the same author(s)