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

Abstract

Introduction 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 2005-2014 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≤0.01) and fatigue (p≤0.03). Parent- and child-reported fatigue was increased compared to normative values (p=≤0.02). History of hydrocephalus was associated with increased fatigue (p≤0.04). Younger age at diagnosis and longer time since diagnosis were associated with impairments in functioning and cognitive fatigue (p=<0.05). 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.

Life after paediatric brain tumour; the perspectives of the survivors and their parents

“…Some PBT survivors discussed their need to prioritize daily activities due to long‐term and late effects. This aligns with a study highlighting that PBT survivors experiencing cognitive or physical impairments and fatigue are at risk of reduced participatory abilities (in their home, school or community lives; Verwaaijen et al, 2021). Furthermore, existing research has recognized that long‐term and late effects may impair daily executive functioning (Puhr et al, 2021).…”

“…The consequences of bodily impairments on activities and participation in daily life (social, school, work) Some PBT survivors discussed their need to prioritize daily activities due to long-term and late effects. This aligns with a study highlighting that PBT survivors experiencing cognitive or physical impairments and fatigue are at risk of reduced participatory abilities (in their home, school or community lives; Verwaaijen et al, 2021).…”

“…In the current study, some PBT survivors reported feeling inadequately prepared for these long‐term and late effects, and although some experienced effects directly after treatment, other (adult) survivors reported that long‐term and late effects appeared many years after treatment. A possible explanation for this is the phenomenon of ‘growing into deficits’, which acknowledges that survivors' long‐term and late effects often become more noticeable as the survivors age due to increased social and environmental demands (Verwaaijen et al, 2021).…”

The Health Care Utilization and Medical Costs in Long-Term Follow-Up of Children Diagnosed With Leukemia, Solid Tumor, or Brain Tumor: Population-Based Study Using the National Health Insurance Claims Data

“…Further, as an increasing number of children are cured of brain tumors, many have long-term health issues including seizure disorders, other neurologic effects of the primary tumor [11][12][13], and endocrinologic abnormalities [14,15]. These complications are primarily cognitive and neurologic effects of chemotherapy and radiation therapy [11][12][13][16][17][18]; endocrinologic complications resulting from surgery, radiation therapy, alkylating agents, certain tyrosine kinase inhibitors, and immune system modulators [14,15,[19][20][21][22][23][24]; organ system toxicity [22][23][24][25][26][27][28][29][30][31][32]; and psychologic and emotional effects [33][34][35][36][37].…”

Musculoskeletal vulnerability and physical frailty during and after treatment for childhood cancer

“…61 Moreover, in patients with chronic kidney disease (6-19 years) the frailty phenotype was associated with an increased risk of severe infections and hospitalizations. 62 The frailty components have been separately reported as side effects of cancer treatment 10,43,52,[63][64][65] , but currently the phenotype itself has not yet been investigated in pediatric cancer patients.…”