Research Updates: Independence in Daily Living Among Adult Survivors of Childhood Brain Tumors

What is independence?

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.

Why does independence matter?

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.

How did we study independence?

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:

Independence:

• Living independently
• Working full-time or part-time
• Assistance with routine needs (every day chores, shopping)
• Assistance with personal care needs (bathing, dressing, eating)
• Having a driver’s license
• Being married or having a partner

Physical performance:

• Exercise ability
• Strength
• Flexibility
• Balance
• Mobility
• Activities of daily living (writing a sentence, standing and turning, walking)

Cognitive performance:

• Attention
• Memory
• Planning and problem-solving

What did we learn?

We found 3 groups of survivors.

1. Independent. Most of these survivors were living on their own, working full-time, driving, and did not need help with day-to-day activities. Forty percent of survivors in our study were independent.
2. Moderately independent. Most of these survivors were working full-time or part-time, driving, and did not need help with day-to-day activities. However, many of them were not able to live on their own. Approximately 30% of survivors in our study were moderately independent. Physical performance impairments were related to being moderately independent.
3. Non-Independent. Most of these survivors were not working, not able to drive, not living on their own, and many required assistance with day-to-day activities. Approximately 30% of survivors in our study were non-independent. Both physical performance and cognitive problems predicted being non-independent.

What does this mean?

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.

What’s next?

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.

What can survivors and families do now?

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.

Find information on survivorship care plans.

Learn more about findings from the St. Jude LIFE study.