Survivors of childhood brain tumors would like nothing better than to live normal and independent lives as they age into adulthood. Some survivors achieve that goal; some achieve part of that goal; but some patients will never be able to live independently for the rest of their lives. What factors predict independence in adulthood for these survivors?
Tara Brinkman, PhD, of the Department of Epidemiology and Cancer Control at St Jude Children’s Research Hospital in Mephis, Tennessee, and her colleagues undertook a study with the goal of better understanding independence in adult survivors of childhood brain tumors.1 Although specific aspects of independence have previously been described, past studies did not consider how individual indicators coexist in the context of everyday life [T Brinkman; personal communication; August 2018]. The St Jude group also wanted to examine predictors of self-sufficiency and identify potential targets for intervention to improve independence in adult survivors.
In this study, functional and social independence was assessed in 306 survivors of CNS cancer, whose median age was 26 years and average time from cancer diagnosis was 17.6 years. The most common treatments were craniospinal irradiation (CSI) and focal irradiation. Eighty-one percent of survivors were able to complete the questionnaires independently while 19% needed the help of a significant other.
Classifications of independence were determined using 6 indicators: living arrangements, employment status, marital status, holding a driver’s license, ability to maintain personal care, and ability to perform routine tasks. In addition, physical performance by aerobic capacity, strength, flexibility, balance, mobility, and adaptive physical function were measured. Finally, physical therapists assessed physical health and the Wechsler Abbreviated Scale of Intelligence — which determines an abbreviated intelligence score based on age-specific national normative data — was used to assess intelligence.1 The study also scored survivors’ attention, memory, and executive functions.
Classifications of Independence
Using a latent class analysis (LCA) of interview responses, survivors were classified as independent (40%), moderately independent (34%), or nonindependent (26%). In the LCA, multivariable data (the 6 indicators) were matched with latent variables (classes of independence). In this way, unmarried or not living with a partner suggests a patient may have a limited social network but not a lack of social relationships. Similarly, a patient who does not drive may simply have a greater dependence on others for social engagement as opposed to being socially isolated, the researchers explained to Oncology Nurse Advisor.
Moderately independent survivors were not living independently as adults, but most of them were working and did not need assistance with routine or personal care tasks. Cognitive impairment was not a significant predictor of a moderately independent classification, but weak muscle strength and poor adaptive physical function were.
Adult survivors who received their diagnosis at a younger age and who were treated with craniospinal radiation were at increased risk of being nonindependent. Cognitive impairment was also more likely to lead to nonindependence as an adult.
“The findings show that for children with CNS tumors, 5- or even 10-year survival is not enough,” stated the St Jude group. “The ultimate goal should be to deliver therapies that maximize both survival and opportunities for functional and social independence throughout the lifespan.”1 This can be accomplished, in part, by providing education and resources to survivors and their families throughout the course of survivorship. Interventions such as cognitive training, rehabilitation, and physical exercise or strength training may help survivors overcome barriers in their environment and achieve greater independence. Existing programs such as vocational rehabilitation and driving rehabilitation can also help adult survivors achieve greater levels of independence.
Dr Brinkman believes that boosting the independence of survivors should be a priority of the entire multidisciplinary care team. With increased awareness of potential adult outcomes, parents can begin to promote independence in their children during adolescence and young adulthood. However, parents need to realize that goals or expectations for their children may need to be modified to match the child’s cognitive and physical limitations. Parents should work closely with their child’s medical team to determine appropriate goals for independence.
- Brinkman TM, Ness KK, Li Z, et al. Attainment of functional and social independence in adult survivors of pediatric CNS tumors: a report from the St Jude Lifetime Cohort Study [published online September 20, 2018]. J Clin Oncol. doi: 10.1200/JCO.2018.77.9454
- Wechsler D. Wechsler Abbreviated Scale of Intelligence™ (WASI™). San Antonio, TX: Psychological Corporation; 1999.
This article originally appeared on ONA