Health‐related quality of life in pediatric liver transplant recipients compared with other chronic disease groups

Abstract

This cross-sectional, multi-center cohort study compares the level of health-related quality of life (HRQOL) of pediatric liver transplant (LT) recipients to children with other chronic health conditions.Design and Methods-LT sample included 873 children who survived at least 12 months following LT. Six chronic disease samples were compiled from numerous studies, including over 800 patients with Juvenile Rheumatoid Arthritis (JRA), type 1 diabetes, cancer in remission, cardiac disease, end-stage renal disease and inflammatory bowel disease. Generic HRQOL was measured from both the parental and patient perspective using the PedsQL ™ 4.0 Generic Core Scales.Corresponding Author: Estella M. Alonso, MD, Children's Memorial Hospital, 2300 Children's Plaza, Box 65, Chicago, IL 60614 Ph: 773-975-8837 Fax: 773-975-8671 e-alonso@northwestern.edu. The data presented in this manuscript is original data, the authors had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.Competing Interests: Dr. Varni holds the copyright and the trademark for the PedsQL ™ and receives financial compensation from the Mapi Research Trust, which is a nonprofit research institute that charges distribution fees to for-profit companies that use the Pediatric Quality of Life Inventory ™ . Results-Pediatric LT patients reported better physical health than children with JRA. According to parents, pediatric LT recipients had better HRQOL than children on renal dialysis on all domains except school functioning. Across all domains but emotional functioning, pediatric LT recipients reported significantly lower HRQOL than children with type 1 diabetes. Overall, pediatric LT patients reported comparable HRQOL to children who had undergone renal transplantation and patients with cancer in remission.Conclusions-Pediatric LT patients manifested impaired HRQOL similar to children with chronic diseases and these data suggest they face ongoing challenges that warrant monitoring and indicate a need for interventions to improve their HRQOL.

Chronic health problems and health-related quality of life in Chinese children and adolescents: a population-based study in Hong Kong

“…However, studies comparing QoL across different health conditions were difficult to conduct. Most studies that adopted generic questionnaires such as CHQ or PedQL would thus examine patients of a specific health condition with healthy population samples in a single study and then compare other health conditions using the 23 We found that children aged 5-10 years with an isolated mental health problem appeared to be more affected in their QoL when compared with either normal or children with an isolated physical health problem. In particular, the scores in concepts that measured general behaviour and role functioning in emotions and behaviour were significantly lower.…”

A Multicenter Study on Childhood Constipation and Fecal Incontinence: Effects on Quality of Life

“…39,40 The mean PedsQL scores for the constipated subjects aged >8 years in the present study are comparable with those reported by other studies of children with chronic constipation, 21,37,41 but worse than those reported for patients with type 1 diabetes, malignancies in remission, cardiac disease, and transplant recipients. 42 Families may receive reassurance regarding the relatively benign nature of functional constipation along with suboptimal medical and behavioral treatments. When functional constipation is treated ineffectively, over time fecal incontinence develops, drastically reducing quality of life for the child and family.…”

Update on Ethical Issues in Pediatric Dialysis: Has Pediatric Dialysis Become Morally Obligatory?

“…Another possible explanation could be perceptions by providers of lower quality of life among children on dialysis and high burdens placed on parents and caregivers. Although children with ESRD do report diminished HRQOL scores when compared with healthy controls, HRQOL scores for children after renal transplantation appear to be similar to children with other types of chronic diseases (58)(59)(60)(61)(62). Furthermore, it is not clear why future quality of life would result in withholding treatment for a newborn, but not a toddler or older child.…”