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
With advancements in the treatment of chronic liver disease (CLD), including liver transplantation (LT), quality of life and satisfaction after LT have become an important issue for pediatric patients and their parents. More evidence-based information is needed to describe and assess the impact of pediatric CLD on parents and the satisfaction of parents with treatment to better understand their needs.
To assess the satisfaction of parents of pediatric LT patients and that of parents of pediatric CLD patients
During this survey, data were collected from parents of pediatric patients who underwent LT between January 2010 and April 2017 (LT group; n = 91) and parents of pediatric patients with chronic liver disease (CLD group; n = 94). 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. The PedsQL was administered to parents during a phone interview and the results were used to assess the health care-related satisfaction of parents. The IFS was used to assess the impact of the child’s CLD status on the family. Demographic variables such as education level (elementary vs middle vs high vs university), monthly income (low vs middle vs high), and place of residence (village vs town vs city) 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. There were statistically significant differences between the LT and CLD groups in terms of career (P < 0.001), monthly income (P = 0.016), and education level (P = 0.041). 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 (P < 0.001). Additionally, scores for the IFS parameters of financial impact, familial-social impact, personal strain, and total impact were consistently higher for the LT group (P < 0.001). There were statistically significant relationships between education level, monthly income, and place of residence according to the IFS results but not the PedsQL results. There were inverse relationships between the difficulties that parents experience because of their child’s health and education levels, monthly income, and place of residence. However, no relationship was found between education level, monthly income, or place of residence and satisfaction with health care services provided in the hospital according to the PedsQL results.
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.
Core tip: The status and satisfaction of parents of pediatric liver transplantation (LT) patients and that of parents of pediatric chronic liver disease (CLD) patients were compared using the pediatric health-related quality of life health care parent satisfaction scale and the impact on family scale, respectively. Parents of LT patients have more difficulties than parents of CLD patients due to their child’s health status. The satisfaction of the parents based on the pediatric health-related quality of life results in the LT group was significantly higher when compared to parents in the CLD group. No relationship was found between education level, monthly income, or place of residence and satisfaction with the health care services.