Published online Jun 6, 2020. doi: 10.12998/wjcc.v8.i11.2162
Peer-review started: December 31, 2020
First decision: April 1, 2020
Revised: April 18, 2020
Accepted: May 14, 2020
Article in press: May 14, 2020
Published online: June 6, 2020
Processing time: 159 Days and 14 Hours
Parents of children with chronic liver disease (CLD) and those who undergo liver transplantation (LT) have severe emotional, physical, and financial difficulties which affect their quality of life. While LT save treat CLD, pediatric LT patients remain medically fragile and present a complex care issues requiring high-level management in the home. In this study we aim to assess the impact of pediatric LT on parent’s quality of life and to study their satisfaction with treatment to better understand their needs.
Parents feel it is their responsibility to give their children a happy life and cure them from diseases, however in the case of pediatric LT; children remain affected by a chronic condition that includes morbidities, repeated hospitalizations and a life-long need for immunosuppression. Parents have more difficulties due to their children’s health status, which affects many areas of their lives. We aim to study the impact of LT on the life of pediatric patients after transplantation to highlight areas where intervention and assistance might be needed to help parents cope with the requirements of complex of the complex management of their children.
The main objective of this study is to assess the satisfaction of parents of pediatric LT patients and that of parents of pediatric CLD patients. Data from this study would help us to evaluate if this pediatric LT is associated with better parents satisfaction and better quality of life, and to highlight areas where intervention and assistance might be needed by these parents.
During this survey, data were collected from parents of 91 pediatric patients who underwent LT and parents of 94 pediatric patients with CLD. Group comparisons were made based on the pediatric health-related quality of life (PedsQL) health care parent satisfaction scale, Impact on Family Scale (IFS) and demographic characteristics. Demographic variables such as education level, monthly income, and place of residence were compared between CLD and LT parent groups. Finally, PedsQL and IFS results were also analyzed according to demographic variables.
A total of 185 parents aged 19 to 65 years were included. According to the PedsQL results, family inclusion, communication, technical skills, emotional needs, and overall satisfaction were significantly different between the groups; the LT group had consistently higher scores. Additionally, scores for the IFS parameters of financial impact, familial-social impact, personal strain, and total impact were consistently higher for the LT group.
While children with CLD are saved by LT, their health-related quality of life is impaired compared to that of healthy controls. Parents of children who underwent LT were very satisfied with the health care services provided to their children. However, they had more difficulties than parents of children with CLD. These data further stress the importance providing continuous social and financial support to families of pediatric LT patients to help them with the psychological, financial and health care difficulties they have.
Quality of life and satisfaction after LT have become an important issue for pediatric patients and their parents. Parents feel satisfied with the medical management when their children have LT and offered their chance of cure by advanced medical procedures, however they pass into severe difficulties after LT as their child health remain fragile and require complex long-term management for the associated morbidities including repeated hospitalization. More evidence-based information is needed to describe and assess the impact of pediatric LT on parents and to better understand their needs.