What to Expect After Pediatric Liver Transplantation: Cognitive Function and Quality of Life

A recent study (D Ohnemus et al. Liver Transplantation 2020; 26: 45-56, editorial 9-11) examined health-related quality of life (HRQOL) and cognitive functioning approximately 15 years after liver transplantation (LT).

Study details:

Median age 16 years.  Original group was a SPLIT research cohort recruited from 20 centers and then tested at multiple time points; for this study, 8 sites of the original 20 were included.  It is noted that patients with serious neurologic injury were excluded. Among an initial group of 108, there were 79 available for potential enrollment.  In this group, 65 parent surveys were completed and 61 child surveys.

Key findings:

  • For cognitive and school functioning, 60% and 51% of parents reported “poor” functioning, respectively (>1 SD below the health mean).  41% of children rated their cognitive function as poor.
  • Adolescents’ self-reported overall HRQOL was similar to that of healthy children; in contrast, parents rated their teenage children as having significantly worse HRQOL than healthy children in all domains.
  • The cognitive score in the poor functioning group at the latest time point was lower than at first time point measurement (ages 5-6 years and at least 2 years after LT), “suggesting that difficulties intensified in adolescence for those who have problems in early childhood.”
  • Almost half had received special educational services.

The editorial notes that the PedsQL Cognitive Functioning Scale scores used by the investigators were considered subjective.  “The more objective PedsPCF scores fell within the normal range.”

My take: This report indicates that a majority of children are likely to have some cognitive deficits and many are likely to have reduced HRQOL following liver transplantation; in addition, if these problems are detected at a younger age, they are likely to persist.

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Understanding the “Rashomon Effect”

An interesting commentary (GM Ronen, DL Streiner. J Pediatr 2016; 179: 17-18) discusses the “Rashomon” effect and how this can relate to studies which show differences between children with health problems and their parents’ perception of how they are doing.

“In this famous Japanese tale, set in the 12th century, a notorious bandit attacked a samurai and his wife in the woods.”  Afterwards, all of the accounts of the incident by the participants were widely discrepant. “When the tale is over, the reader realizes that even though none of the version is a truthful objective account, all must be true at least from the character’s own unique perspective.”

In medical studies with children and their parents, different versions of the truth can be due to many factors:

  • Depression distortion hypothesis –raters with depression tend to score poorer on numerous health variables
  • Disability paradox –“some persons with impairments, against all odds, are satisfied with their life and rate their health similar to typical children”
  • Parents may also be affected by the emotional impact of their child’s health problem even when the problem is well-controlled

My take: This short commentary has a lot to say about understanding why a person with a medical problem may rate their health much better or much worse than an outside observer would expect.

Penobscot Narrows Bridge, Maine

Penobscot Narrows Bridge, Maine