Elizabethtown College Student Seeks CMT Patients for Online Survey on Daily, Social Activities

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by Mary Chapman |

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To better understand the effect of Charcot-Marie-Tooth (CMT) disease on daily living, an Elizabethtown College student is calling for young adults with the disorder to participate in a research study.

Allison Eveler, a senior occupational therapy major, is conducting her undergraduate research on CMT’s impact on the social activities of young adult patients, according to a Muscular Dystrophy Association webpage. Herself a CMT patient, Eveler saw a need for such research, and hopes it will lead to further study.

“You will not personally benefit from this survey, although your input will help shape educational and outreach efforts amongst CMT patients,” the survey’s introduction states. “Your input will also help healthcare professionals understand the needs of this population.”

The online survey, which takes about a half hour to complete, is for U.S. patients, 18 and over, who can read and write in English, and answer survey questions without help.

Most of the 43 questions are derived from PROMIS (Patient-Reported Outcomes Measurement Information System), a set of measures that evaluates and monitors physical, mental, and social health in adults and children. Designed to enhance communication between clinicians and patients in diverse research and clinical settings, it can be used with the general population and those living with chronic conditions. PROMIS was developed by HealthMeasures with backing from the National Institutes of Health.

Patients are asked in Eveler’s online survey to rate the frequency — from “never” or “rarely” to “always” — of their feelings to questions such as “I have trouble meeting the needs of my friends” or “I have to limit social activities outside my home.”

CMT is a disease of the peripheral nerves that control muscles. Found in both genders, and all races and ethnic groups, it’s the most commonly inherited peripheral neuropathy, affecting 2.8 million individuals globally. The slowly progressive disorder causes loss of normal function and/or sensation in the feet or hands. Other symptoms may include fatigue, sleep apnea, breathing problems, scoliosis, and hearing loss.

A CMT diagnosis involves clinical evaluation of muscle function and atrophy, testing of sensory responses, and electromyographic and nerve conduction studies. In some cases, diagnoses may come from genetic testing.

While there is no medication treatment for CMT, physical therapy and moderate activity can help maintain muscle strength, endurance, and flexibility. In addition, occupational therapy and adaptive devices can often help with daily living. Orthopedic surgery can correct deformity, and help maintain mobility and function.

For questions about the online survey project, contact Debbie Waltermire at [email protected], or the Elizabethtown College Institutional Review Board at [email protected]

In related news, the StepWatch Activity Monitor, unlike the six-minute walk test, was shown to be able to detect progressive deterioration in CMT patients over the course of one year, and may be a suitable measure of outcomes in clinical studies of prospective treatments.