Vanderbilt University School of Nursing Assistant Professor Jie Deng, PhD, RN, 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/fibrosis.
Lymphedema/fibrosis causes swelling and the development of hard tissue in the head and neck region following cancer treatment. It impacts approximately 75% of the more than half a million survivors of head and neck cancer in the United States.
“Although not curable, [lymphedema/fibrosis] can be managed to minimize impact,” Dr. Deng said. “[Lymphedema/fibrosis] therapy needs to be lifelong, so it’s important to develop a self-care regimen that patients can perform regularly.”
Some patients have rated lymphedema/fibrosis as worse than their cancer, according to Dr. Deng. Patients may experience external and/or internal swelling, which causes decreased range of motion in the jaw, neck, and shoulders; skin tightening and pain; and problems with critical functions such as swallowing, speaking, and breathing. These and other effects such as body-image issues and lack of mobility decrease quality of life.
The prevailing treatment for lymphedema/fibrosis is complete decongestive therapy, which consists of initial lymphedema therapy performed with a certified lymphedema therapist and then long-term self-care administered by the patient or caregiver. Complete decongestive therapy includes manual lymph drainage, compression with bandaging and fitted garments, exercise, and skin care. The goal of complete decongestive therapy, particularly the self-care component, is to prevent progression of lymphedema/fibrosis and reduce negative health outcomes.
Aim of Project
Dr. Deng said that currently there isn’t a uniform standard for long-term self-care and that some patients don’t receive any self-care training. In her two-stage project, she will complete development of a lymphedema/fibrosis self-care program and then will conduct trials to identify the optimal regimen before moving onto a definitive phase III trial.
Previous research by Dr. Deng revealed barriers to both initial therapy and the self-care phase. That work, sponsored by the Vanderbilt Clinical Translational Research Scholar Program, provided the preliminary data for the new study.
“Inadequate self-care is a potentially remediable issue,” revealed Dr. Deng. “A standardized program that is feasible, safe, and effective is needed. More than half of the participants failed to adhere to self-care regimens due to lack of motivation, limited knowledge or training, lack of continued guidance, and perception of low self-efficacy.”
In phase I of the trial, Dr. Deng and her co-investigators will create a lymphedema/fibrosis self-care program based on the Information-Motivation-Behavioral Skills (IMB) model of health behavioral change. They will develop and produce IMB-driven self-care educational manuals and video, which will specifically address knowledge, behavioral skills, and motivation issues faced by survivors of head and neck cancer. They will also develop one-on-one self-care training conducted by a certified lymphedema therapist, which is designed to ensure acquisition and retention of the care instructions. Phase II research will address the feasibility of the lymphedema/fibrosis self-care program and determine whether variables such as provider follow-up increase self-efficacy.
Health-Care Disparity Component
Dr. Deng said that the intervention also addresses issues of health-care disparity. “Our research found that 37% of head and neck cancer survivors live in rural areas without certified lymphedema therapists,” she said. “About 20% 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.”
Although this study focuses specifically on lymphedema/fibrosis in survivors of head and neck cancer, Dr. Deng said it could have further application. “Our prototype has the potential to be adapted and used for other chronic cancer survivorship-related challenges,” she concluded. ■