Determinants of impairments in functioning, fatigue, and participation ability in pediatric brain tumor survivors

Background. Pediatric brain tumor survivors (PBTS) experience disease- and treatment-related sequelae. We aimed to investigate the occurrence of participation limitations, impairments in functioning, fatigue, and the association between patient, tumor- and treatment-related factors and these outcomes. Methods. Children (4-18 years) after treatment for a brain tumor between 2005 and 2014 at the Erasmus Medical Center, Rotterdam, the Netherlands, were eligible. The parent-reported Child and Family Follow-up Survey developed to measure participation and impairments in functioning in youth with acquired brain injury, was used. Fatigue was assessed using the Pediatric Quality of Life Inventory Multidimensional Fatigue Scale. Associations with patient, tumor- and treatment-related factors were explored using univariable analyses. Results. Ninety-one PBTS (median age: 11.3 years [range: 9.5-14.1], time since treatment: 3.9 years [range: 4-6.2]) were included (response rate: 55%). Participation limitations were reported in 53% and were associated with impairments in functioning (15-67%) (P =.01) and fatigue (P =.03). Parent- and child-reported fatigue was increased compared to normative values (P =.02). History of hydrocephalus was associated with increased fatigue (P =.04). Younger age at diagnosis and longer time since diagnosis were associated with impairments in functioning and cognitive fatigue (P <.05). Participation limitations, impairments in functioning and fatigue were similar in PBTS who were <3 or =3 years since completion of treatment. Conclusion. More than half of PBTS reported limited participation ability, which is associated with impairments in functioning and fatigue. The complication hydrocephalus seems to lead to more fatigue. Participation limitations, impairments in functioning and fatigue appear not to diminish in the longer term.