Assistant Professor Jie Deng, Ph.D. ‘10, R.N., OCN, FAAN, has been awarded a $789,000 research scholar grant by the American Cancer Society to develop and test a self-care program for head and neck cancer survivors diagnosed with secondary lymphedema and fibrosis (LEF).
LEF causes swelling and the development of hard tissue in the head and neck region following cancer treatment. It impacts approximately 75 percent of the more than half a million head and neck cancer survivors in the U.S.
“Although not curable, LEF can be managed to minimize impact,” Deng said. “LEF therapy needs to be lifelong, so it’s important to develop a self-care regimen that patients can perform regularly.”
Some patients have rated LEF as worse than their cancer, Deng said. Patients may experience external and/or internal swelling that causes decreased range of motion in the jaw, neck and shoulders; skin tightening and pain; and problems with critical functions like swallowing, speaking and breathing. These and other effects such as body image issues and lack of mobility decrease quality of life. Long-term self-care by the patient that includes manual lymph drainage, compression, exercise and skin care can help prevent LEF progression.
Deng said that currently there isn’t a uniform standard for long-term self-care and some patients don’t receive any self-care training. In her two-stage project, she will complete development of a LEF self-care program, then conduct trials to identify the optimal regimen before moving onto a definitive Phase III trial.
Deng said that the intervention also addresses issues of health care disparity. “Our research found that 37 percent of HNC survivors live in rural areas without certified lymphedema therapists,” Deng said. “About 20 percent have annual household incomes of less than $20,000. This intervention is designed to provide those patients with a safe, innovative, accessible and practical self-care regimen.”
Deng’s research is supported by a Research Scholar Grant, RSG-16-207-01—PCSM from the American Cancer Society.