Understanding Nerve Damage in Childhood Cancer Survivors

little girl playing hopscotch

Many children who get cancer today are surviving longer than ever before and even thriving, thanks to continually evolving medical therapies. Yet, this good news has given rise to a difficult challenge – how health care providers can anticipate or even treat the late effects of the therapies that have saved so many young lives. Children have only been surviving cancer in larger numbers for a few decades, at most. That means the long-term impact of their cancer care is just now starting to become clear.

"The late effects of childhood cancer therapy are a huge issue today because about 80% of all kids diagnosed will become a long-term survivor," says Caroline Mohrmann, MSN, RN, CPNP-AC, who works with pediatric cancer patients at the Washington University School of Medicine. Caroline MohrmannShe is also pursuing a doctoral degree at the Sinclair School of Nursing at the University of Missouri.

Cancer chemotherapy can sometimes have a lasting impact on a child's body and mind. Some symptoms may not be seen or felt until years later. One common late-term effect is called peripheral neuropathy. It's a condition that affects the nerves farthest away from the brain and spinal cord – such as those in the hands and feet. Those who develop this complication may feel pain, tingling, and uncomfortable sensations, including burning, prickling, and numbness. They might also be overly sensitive to heat or cold. Nerve damage to the feet can affect balance and coordination. Patients might have trouble trying to do things like picking up small objects. Problems with the peripheral nerves may also disrupt how the bowel and bladder work.

"Part of the challenge with this late effect is we don't have a good understanding of which kids will have this complication for a long time and which will recover a lot easier when they are no longer exposed to the neurotoxic medication," says Mohrmann, who is focusing her dissertation research on the topic.

In some cases, the problem can become very disabling. Mohrmann recalls one childhood cancer survivor's story: "The patient was training to be a pharmacy technician and said to me 'I can't do my job because I can't feel the pills to count them and put them in the bottle.'"

Peripheral Neuropathy – The Patient's Perspective

Most of the research on peripheral neuropathy in children who beat cancer stems from limited studies involving leukemia patients who received the chemo drug vincristine. That medicine is known to cause nerve damage, or neurotoxicity. However, it's not the only one that can. Another issue: "there's not a really good way to measure this problem in kids," says Morhmann. "It's not like a heart rate, where you have a hard and fast number."

She wants to broaden understanding of peripheral neuropathy in pediatric cancer survivors by going directly to the source: the patients themselves. "This qualitative perspective is completely lacking in the literature," she explains. Thanks to an American Cancer Society Health Professional Training grant, she "will be able to collect, analyze, and interpret rich data on this topic that has never been reported before."

For her study, Mohrmann plans on asking children and young adults who have been off chemotherapy for at least a year what it is like to live with peripheral neuropathy. What does it feel like? How does it affect your everyday life? Are there some tasks you cannot do?

She wants to involve kids who have survived all types of childhood cancer.

"I think that it's important to include different types of cancer," she adds. "For example, I have patients with rhabdomyosarcoma who are having functional difficulties, and yet they haven't been included in past studies. My study will involve any patient who has had a neurotoxic exposure regardless of their diagnosis."

She believes the knowledge gained will not only help long-time survivors, but also kids going through treatment for the first time. Ultimately, she hopes her findings will lead to a better way of reporting the problem and interventions to improve patients' quality of life. Specifically, she envisions working with other disciplines, including physical and occupational therapists, to develop some type of regimen to help ease symptoms.

"We, as healthcare providers and nurses, want our patients to live very long, and healthy, and happy lives," she emphasizes. "What's exciting about survivorship research is that what we learn will help not only long-time survivors, but it has the potential to transform therapies and help those going through [pediatric cancer] for the first time."

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