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Source: Attainment of Functional and Social Independence in Adult Survivors of Pediatric CNS Tumors: A Report from the St Jude Lifetime Cohort Study.
Brinkman TM, Ness KK, Li Z, Huang IC, Krull KR, Gajjar A, Merchant TE, Klosky JL, Partin RE, Olsson IT, Boop F, Klimo P Jr, Chemaitilly W, Khan RB, Srivastava D, Robison LL, Hudson MM, Armstrong GT. J Clin Oncol. 2018 Sep 20;36(27):2762-2769.
A recent study by researchers at St. Jude Children’s Research Hospital examined aspects of daily living in adult survivors of childhood brain tumors. The researchers were particularly interested in the idea of independence. In this article, psychologist and lead author Dr. Tara Brinkman describes the study and highlights what the results mean for cancer survivors.
Independence refers to the ability to do things on your own, without relying on others. Most adults are expected to live independently. That means they don’t have to rely on someone else for tasks such as cooking a meal or managing money. Many influence independence. These include your ability to drive, whether you can work, and if you need help taking care of yourself.
Because of improvements in cancer treatments, most children diagnosed with brain tumors survive into adulthood. However, we not only want these children to live into adulthood, we also want them to be able to live as independently as possible and experience a good quality of life. Unfortunately, the treatments needed to cure brain tumors often result in physical and cognitive (thinking/learning) problems for survivors. These physical and cognitive problems can impact how much independence survivors can achieve.
In this study, we wanted to understand how much independence survivors of childhood brain tumors were able to achieve as adults. We also wanted to understand how physical and cognitive problems after cancer treatment were related to independence. To do this we looked at the following:
We found 3 groups of survivors.
Over half of brain tumor survivors in our study did not achieve the level of independence that we would expect as adults. The impact of cancer treatment on physical and cognitive abilities was the primary reason why survivors did not become fully independent. However, we also found that survivors who were treated more recently were less likely to be non-independent. This suggests that newer approaches to cancer treatment may result in better long-term outcomes for survivors.
We now better understand what factors influence independence. We plan to develop interventions to help survivors become more independent as teens and young adults. We also plan to study how independence changes as survivors get older and how changes in cancer treatment impact the independence survivors achieve.
For parents of newly diagnosed patients, it’s important to understand potential physical and cognitive late effects of your child’s treatment. Talk to your child’s primary treatment team and get information. This can empower caregivers to become advocates for their children and help promote their independence, now and in the future.
It’s important for parents to realize that they may need to modify goals or expectations for their children based on cognitive and physical limitations. Parents should work closely with their child’s medical team to determine appropriate goals for independence.
Interventions such as physical exercise and strength training may help survivors overcome barriers in their environment and achieve greater independence. These interventions should be done under the supervision of a certified professional and/or medical doctor. Existing programs such as vocational rehabilitation and driving rehabilitation can also help survivors achieve greater independence.
Programs are available to help survivors address specific limitations. Brain tumor survivors may benefit from resources such as:
A survivor’s needs often change over time, and ongoing support may be needed. All childhood cancer survivors should have a survivorship care plan and receive regular health care tailored to their medical needs.