How OTs Help Childhood Cancer Survivors Flourish
Cancer survivorship begins at diagnosis and continues through treatment and beyond.2 For childhood cancer survivors (CCS), this can mean a lifetime of cancer-related changes. Some survivors can experience positive changes such as:
- Personal growth
- A deepened appreciation for life
- Greater awareness of life purpose
- Development of confidence and resilience
- Optimism4
However, other changes can be barriers to goal achievement and lead to decreased quality of life.
Barriers Developed from Childhood Cancer
CCS are at risk for experiencing physical, sensory, neurocognitive, and psychosocial impairments caused by their diagnosis and treatment. These late effects can result in difficulty completing functional tasks, including:
- Finishing chores
- Getting dressed
- Walking
- Lifting
- Driving
- Participating in community activities such as shopping, attending events, and going out to eat1,3
As of 2021, at least 483,000 survivors of childhood and adolescent cancer were living in the United States.5 That number continues to rise with advances in treatment and supportive care.
As the population of survivors grows, so does the valuable role of occupational therapy in their care. Many of the limitations experienced by survivors are amenable to occupational therapy interventions.6
As children with cancer move through the continuum of cancer care from diagnosis through survivorship, their functional abilities may fluctuate. Some children with cancer may experience functional impairment at the time of diagnosis. For example, a child diagnosed with a brain tumor may have hemiparesis and visual impairment, which limits their ability to participate in school tasks such as handwriting, as well as reading or leisure tasks like riding a bike.
Other limitations may not be apparent until the child begins treatment. For example, certain types of chemotherapy can result in peripheral neuropathy, which can cause severe pain, weakness, or loss of sensation in the hands and feet, leading to difficulty with both fine and gross motor activities. Lengthy hospitalizations and limited access to the typical activities of childhood can leave very young children, who are undergoing stem cell transplants, at risk for experiencing developmental delays.
Still other functional limitations, including cognitive impairments from chemotherapy or radiation therapy, may not emerge until the long-term survivorship phase of the cancer care continuum. These sometimes subtle cognitive limitations can have a substantial impact on the long-term cancer survivor’s performance as they return to their pre-diagnosis activities such as returning to school.
Three Approaches to Support CCS
Because the CCS’s occupational performance can fluctuate throughout the continuum of care, so does the role of the occupational therapist. Here are three approaches to help improve quality of life for these survivors:
- Prevent: Through close monitoring of children who are known to be at risk for functional limitations, the OT can help prevent performance restrictions and support age-appropriate development. For example, chemotherapy-induced peripheral neuropathy can occur during predictable periods of treatment for childhood leukemia. Screening for signs and symptoms of neuropathy during this time may help prevent severe functional impairments.
- Remediate and Habilitate: For CCS who are experiencing performance restrictions, the OT can provide interventions to remediate musculoskeletal, neurological, and sensory functions, or build new development skills. For example, splinting, exercise, or massage may improve range of motion and function in a child who experiences range of motion limitations due to chronic graft vs. host disease of the skin and joints after a stem cell transplant.
- Compensate: Developing strategies for engaging in activities in a different way is helpful to improve a CCS’s ability to participate in meaningful activities. For example, the teacher of a long-term survivor of childhood cancer with functional cognitive impairment may benefit from consultative OT services to support the child’s academic success within the classroom.
Occupational therapy offers a holistic approach to identifying and addressing occupational performance restrictions. Using these three approaches will help support the childhood cancer survivor so they can flourish throughout the continuum of cancer care.
- Berg, C., Neufeld, P., Harvey, J., Downes, A., & Hayashi, R. J. (2009). Late effects of childhood cancer, participation, and quality of life of adolescents. OTJR: Occupation, Participation and Health, 29(3), 116-124.
- Denlinger, C. S., Carlson, R. W., Are, M., Baker, K. S., Davis, E., Edge, S. B., Friedman, D. L., Goldman, M., Jones, L., King, A., Kvale, E., Langbaum, T. S., Ligibel, J. A., McCabe, M. S., McVary, K. T., Melisko, M., Montoya, J. G., Mooney, K., Morgan, M. A., O'Connor, T., … Freedman-Cass, D. (2014). Survivorship: introduction and definition. Clinical practice guidelines in oncology. Journal of the National Comprehensive Cancer Network : JNCCN, 12(1), 34–45. https://doi.org/10.6004/jnccn.2014.0005
- Ness, K. K., Wall, M. M., Oakes, J. M., Robison, L. L., & Gurney, J. G. (2006). Physical performance limitations and participation restrictions among cancer survivors: a population-based study. Annals of epidemiology, 16(3), 197-205.
- Parry, C. (2003). Embracing uncertainty: an exploration of the experiences of childhood cancer survivors. Qualitative health research, 13(2), 227-246.
- Childhood cancer survivor study: An overview. National Cancer Institute. (n.d.). Retrieved from https://www.cancer.gov/types/childhood-cancers/ccss
- Sparrow, J (2020). Chapter 4 Special Considerations for Children with Cancer. In B. Bravemen and R. Newman (Ed.), Enabling Performance and Participation for Cancer Survivors Across the Life Course. Bethesda, MD: AOTA Press.
