Finding better way to quantify neuropathy symptoms and treatment efficacy

Most of the roughly 15.5 million cancer survivors in the U.S. receive chemotherapy, and roughly 65 percent develop some degree of the chemotherapy-induced nerve damage known as peripheral neuropathy.

Peripheral neuropathy simply means nerves outside of the brain and spinal cord are affected, and symptoms include numbness and tingling in extremities, and in about 30 percent of patients, pain. Neuropathy can drastically diminish quality of life--and in extreme cases, may necessitate chemotherapy dose reductions.

Unfortunately, neuropathy often goes underreported and untreated, said Ellen Lavoie Smith, associate professor at the University of Michigan School of Nursing. This happens because clinicians and researchers don't have a valid, standardized way to measure symptoms or the effectiveness of neuropathy treatments. Right now, the drug Cymbalta (duloxetine) is the only drug FDA-approved to treat painful neuropathy symptoms.

Some doctors and nurses ask patients about neuropathy, or whether they have symptoms of numbness and tingling, and others don't.

"If we don't have a reliable measurement tool, we can't know if the interventions are effective or not," Smith said. "Historically, it's possible that we've discounted treatments and said they are ineffective based on poor measurements."

Smith's lab wanted to find a better way to quantify neuropathy symptoms and treatment efficacy.

"The ultimate goal is to use a measurement tool in research and clinical settings that has been thoroughly tested and found to be reliable and valid. We believe we have that now," she said.

The neuropathy measurement tool Smith examined in her research is a questionnaire developed in Europe and owned by an international research network. It's a patient-reported outcome measure called the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Chemotherapy-Induced Peripheral Neuropathy Scale (QLQ-CIPN20).37.

Findings suggest that with minor revisions, it could be universally adopted in both labs and doctors' offices to help researchers and clinicians quantify and treat this painful condition.

Six previous publications provide evidence supporting the tool's effectiveness. However, two studies provide conflicting evidence about the instrument's validity, and another study suggests that minor revisions could improve that.

Some researchers use the questionnaire now, but for a variety of reasons it's not used in the clinic with cancer patients, Smith said.

"The next step is for researchers worldwide to consider using the same tool, because then the results from one researcher can be compared directly with results from the next," she said.

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Comments

  1. diana lis diana lis United States says:

    All doctors in the US need to utilize this tool now! We’re always so behind. Sure my primary physician and oncologist know I’m in a great amount of pain from the chemo I had. In 2008 I had chemo for stage 3-c colon cancer. As soon as I felt tingling in my feet the doctor stopped the medication causing it (after the 4th dose). When I had chemo in 2010 for stage 1-c ovarian cancer (the doctor broke the tumor inside while removing it) the doctor already knew I had some numbness in my feet and he was to be careful by adding another medication and raising my legs during treatment. This didn’t help at all. After each monthly treatment I got worse and after the 3rd I wanted to stop because my hands were now tingling and getting numb. He told me it was important to continue because of what happened. So I did.
    I’m 57, it’s 10 years since my first treatments and I’m still cancer free. My life was saved but I’m in terrible pain daily. I’m on Neurontin, Cymbalta and Morphine. I also see a pain management doctor and at each appointment he asks about my injuries and never addresses my nerve damage. I have to bring it up every time! If all doctors were made to use the Quality of Life Questionnaire Chemotherapy-Induced Peripheral Neuropathy Scale to measure my pain, maybe he wouldn’t be afraid to treat me correctly instead of lowering my medication. I was in much less pain 1-1/2 years ago but my pain management doctor has been reducing the morphine because of the “opioid crisis”. He’s been treating me for 10 years and should know how bad my neuropathy is but he does forget. Once he said you’re only taking medication for your lower back, neck and shoulder” and I had to correct him. I can handle the pain from them.  
    If he could quantify my pain to the FDA by using the questionnaire, he wouldn’t have to worry about how he was treating me. I’ll pray this tool will become mandatory in all offices very soon
    Thank you

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