Kindergarten‐age neurocognitive, functional, and quality‐of‐life outcomes after liver transplantation at under 6 years of age

Abstract

Background We aimed to describe school‐entry age neurocognitive, functional, and HRQL outcomes and their predictors after liver transplant done at age <6 years. Methods A prospective cohort of all (n = 69) children surviving liver transplant from 1999 to 2014 were assessed at age 55.4 (SD 7.2) months and 38.6 (12.4) months after transplant. Assessment included: the Wechsler Preschool and Primary Scales of Intelligence, Beery‐Buktenica Developmental Test of VMI, Adaptive Behavior Assessment System caregiver‐completed questionnaire, and PedsQL 4.0 Generic Core Scales. Univariate and multiple linear regression determined predictors of outcomes at P < .05. Results Neurocognitive and functional outcomes were on average within 1 SD of population norms, although shifted to the left (P ≤ .03), with more patients than expected having scores >2 (3.7‐5.9 times more, P ≤ .007) SD below population norms. Total and Summary HRQL scores were statistically significantly lower than the healthy normative population (P ≤ .02) and a congenital heart disease group (P ≤ .02), but similar to children with other chronic health conditions; differences often exceeded the MCID and were lowest in the School functioning domain. There were few predictors on multiple linear regressions, and we could not confirm previous studies that suggested various inconsistent predictors of outcomes. Neurocognitive and functional outcomes scores were highly correlated with HRQL scores except for the School functioning domain, but did not fully explain them. Conclusions Long‐term follow‐up of this vulnerable population is important in order to facilitate support for the patient and family, and early intervention for any difficulties identified.

Health-related quality of life of children born very preterm: a multinational European cohort study

“…This compared with physical health and psychosocial health summary scores of 74.4 and 73.0, respectively, observed amongst children with BPD in our study (descriptive analyses). Although it is not straightforward to compare and contrast our PedsQL GCS score findings with those in other studies and with ‘population’ norms, a study conducted in Canada [ 42 ] for liver transplant children aged under 6 found that healthy children had a mean total PedsQL score of 82, compared to 73 and 75 for chronically ill children and liver transplant children, respectively.…”

“…Amongst these studies, a US study [ 43 ] that estimated PedsQL GCS scores of 20,031 families with children aged 2–16 years showed that healthy children had a mean total PedsQL GCS score of 84, compared to 74 for chronically ill children. Furthermore, as noted above, a Canadian study [ 42 ] of liver transplant children aged under 6 years found that healthy children had a mean total PedsQL GCS score of 82, compared to 73 and 75 for chronically ill children and liver transplant children, respectively.…”

“…It is unclear whether the approximate 3 point difference in mean total PedsQL GCS that we observed between children born VPT and EPT can be considered clinically meaningful to stakeholders as there is, to our knowledge, no generally accepted minimum clinically important difference in the total PedsQL GCS score. However, there have been a few studies that have generated estimates of minimally important clinical differences for the PedsQL GCS score [42][43][44]. Amongst these studies, a US study [43] that estimated PedsQL GCS scores of 20,031 families with children aged 2-16 years showed that healthy children had a mean total PedsQL GCS score of 84, compared to 74 for chronically ill children.…”

Quality of life and psychosocial outcomes of adults who were pediatric solid organ transplant recipients: A systematic review

“…However, childhood represents a vulnerable developmental period. Research has identified a high prevalence of trauma within the pediatric transplant field, 47,48 as well as a high prevalence of neuropsychological issues among pediatric SOT patients when compared to population norms 49–51 . While such findings might point to considerable risk factors of transplantation on long‐term QoL, they might also be capturing deleterious impacts of the underlying disease, which may further justify the benefits of early transplantation.…”

“…Research has identified a high prevalence of trauma within the pediatric transplant field, 47,48 as well as a high prevalence of neuropsychological issues among pediatric SOT patients when compared to population norms. [49][50][51] While such findings might point to considerable risk factors of transplantation on long-term QoL, they might also be capturing deleterious impacts of the underlying disease, which may further justify the benefits of early transplantation. Moreover, it is important to note that the rate of organ re-transplantation in adult patients, who are often transplanted in childhood, is high, 52 which may partially explain findings of older age at assessment and longer time since transplant to be associated with poorer overall QoL.…”