Attainment of Functional and Social Independence in Adult Survivors of Pediatric CNS Tumors: A Report From the St Jude Lifetime Cohort Study

Abstract

Purpose Beyond survival, achieving independence is a primary goal for adult survivors of pediatric CNS tumors. However, the prevalence of and risk factors for failure to achieve independence, assessed with multiple concurrent indicators, have not been examined. Patients and Methods Functional and social independence was assessed in 306 survivors (astrocytoma [n = 130], medulloblastoma [n = 77], ependymoma [n = 36], and other [n = 63]; median current age, 25.3 years [range, 18.9 to 53.1 years]; time since diagnosis, 16.8 years [range, 10.6 to 41.8 years]). Six observed indicators were used to identify latent classes of independence, which included employment, living independently, assistance with personal care, assistance with routine needs, obtaining a driver's license, and marital status. Physical performance impairments were defined as scores < 10th percentile on measures of aerobic capacity, strength, flexibility, balance, mobility, and adaptive function. Multinomial logistic regression estimated odds ratios (ORs) and 95% CIs were calculated for associations of disease/treatment exposures and impairments in physical performance with nonindependence. Results Three classes of independence were identified as independent (40%), moderately independent (34%), and nonindependent (26%). In multivariable models, craniospinal irradiation (OR, 4.20; 95% CI, 1.69 to 10.44) and younger age at diagnosis (OR, 1.24; 95% CI, 1.14 to 1.35) were associated with risk of nonindependence versus independence. Beyond impaired IQ, limitations in aerobic capacity (OR, 5.47; 95% CI, 1.78 to 16.76), flexibility (OR, 3.66; 95% CI, 1.11 to 12.03), and adaptive physical function (OR, 11.54; 95% CI, 3.57 to 37.27) were associated with nonindependence versus independence. Nonindependent survivors reported reduced physical but not mental health-related quality of life compared with independent survivors. Conclusion Sixty percent of survivors of pediatric CNS tumors do not achieve complete independence as adults. Reduction in intensity of primary therapies and interventions that target physical performance and adaptive deficits may help survivors to achieve greater independence.

Treatment‐related calvarial lesions in pediatric brain tumor survivors

“…RT is indispensable for treating several childhood CNS tumor types 9–11 . However, improved outcomes can come with adverse effects and damage to adjacent normal tissue, which might appear several years after treatment 4–6 . Newer RT delivery techniques may decrease some late effects 4,12,13 .…”

“…Advances in therapy have increased the number of long‐term survivors of childhood CNS tumors 2 . However, they often experience late effects of therapy such as bone and soft tissue growth abnormalities, hearing loss, cognitive decline, endocrine and vascular complications, and secondary malignancies 3–6 …”

The hidden costs of surviving childhood cancer

“…In addition, Dr. Armstrong says researchers know that radiation to the central nervous system and chemotherapies such as methotrexate can impair cognitive function, thereby creating problems at school and work. A new study from the St. Jude Lifetime Cohort Study has underscored the potential toll with its finding that only 40% of 306 survivors of pediatric central nervous system tumors achieved full independence as adults . The researchers found that radiation to the brain or spine was associated with a significantly higher risk of dependency.…”

The impact of connectedness on social functioning in youth with brain tumors

“…Survivors of pediatric brain tumors (BT) are among the most studied, as their disease and associated treatments frequently result in declines in neurocognitive, academic, and social functioning . Impairments are often severe and long‐standing, resulting in reduced achievement of adult milestones, including vocational and relational success …”

“…1,2 Impairments are often severe and long-standing, resulting in reduced achievement of adult milestones, including vocational and relational success. 3,4 Abbreviations: BT, brain tumor; CI, confidence interval; HMAC, Hemingway Measure of Adolescent Connectedness; ITR-2, Intensity of Treatment Rating Scale, 2.0; SEARS, Social-Emotional Assets and Resilience Scales Within the realm of social functioning, significant research has focused on areas of deficit experienced by survivors of BT, with several theoretical models 5,6 proposed to describe and explain survivors' deficits. Commonly reported concerns include loneliness, social isolation, and teasing, [7][8][9] as well as deficits in social skills such as problem-solving and affect recognition.…”