By Michele Lynn from the Carolina Nursing Magazine
With a $2.58 million grant from the National Institute for Nursing Research (NINR), Associate Professor Lixin Song, PhD, RN, FAAN, is studying the efficacy of a couples-focused, tailored, symptom self-management mHealth (mobile health) intervention for prostate cancer patients and their partners. This randomized clinical trial is testing the usefulness of an innovative web-based program, Prostate Cancer Education & Resources for Couples (PERC). PERC is tailored to the needs of men of diverse backgrounds who have recently been diagnosed with localized prostate cancer, as well as the needs of their intimate partners. The five-year study, which began in September 2017, will recruit men and their intimate partners from 36 counties in the state of North Carolina that have the highest prostate cancer incidence rate and diverse populations of low income and low education.
Professor Song knows firsthand how challenging it is to be a family caregiver. “When my mom was very sick, even though I am very knowledgeable and have a lot of resources, I was extremely stressed out by helping her,” says Song, Beerstecher-Blackwell Distinguished Term Scholar, Adult Health, Family, Research. “As a researcher, I want to take advantage of new technology to address the needs of patients and family caregivers.”
To achieve that goal, Song is utilizing the nearly $3 million in total research grant funding she has received from the NINR and the National Cancer Institute (NCI). She and her research team are testing two web-based programs to improve post-treatment supportive care for prostate cancer patients and their families. “I am interested in how cancer patients and their caregivers cope with stress and manage symptoms and other related issues that can impact health outcomes,” says Song. “We hope to provide a model that will work for patients with other types of cancer and illness.”
The social support component of PERC provides online peer discussion forums and professional seminars on topics such as sexual dysfunction and living with uncertainty after a cancer diagnosis. “Because of the nature of the symptoms and side effects of prostate cancer and treatment, patients often don’t feel comfortable talking about this with others in public or with health care providers,” says Song. “We think that this online intervention tool can support these men while maintaining privacy and having a positive impact on their quality of life.”
“Making this web-based application available now puts these tools directly into the hands of the patient and the spouse or partner so they can manage their own symptoms and more immediately address the issues going on,” says Ruth Anderson, RN, PHD, FAAN, Associate Dean for Research and Kenan Distinguished Professor. “It will give people more of a sense of control over what’s happening with their bodies.”
In a separate research study, Song is testing the feasibility of adding PERC to the survivorship care plan of participating prostate cancer patients. This document is recommended by the Institute of Medicine and mandated for at least 50 percent of a cancer center’s patients in order to be accredited by the Commission on Cancer. Song received a $364,000 grant from NCI to examine whether it is practical and acceptable to use a survivorship care plan that is enhanced by either the National Cancer Institute online resources or a web-based symptom management program.
“Scientific data haven’t yet shown any effectiveness of the survivorship care plan, and there is resentment from clinicians in having to create it because they are so busy,” says Song. “My team proposed using mobile devices, which makes it easy for doctors and nurses to use and for patients to go online to see the post-treatment care part on their own whenever they have time.”
Song says that it was important to her to include family caregivers in this post-treatment care intervention and to help physicians and nurses by creating a systematic and easy way to support patients. “The idea is to be helpful to both clinicians and to patients and families instead of being an additional burden,” she says.
“The survivorship care program will help bridge that gap between treatment in the hospital, where there is an abundance of care, to the time when patients are at home,” says Song. “I believe that by extending nursing care beyond the hospital to home settings we cannot only improve patients’ satisfaction but also strengthen the quality of care.”
Song’s colleagues recognize her commitment and talent. Barbara Mark, PhD, RN, FAAN, Sarah Frances Russell Distinguished Professor, has mentored Song and played a critical role in supporting her work and helping her get funded. “Lixin is absolutely dedicated to her research and passionately cares about the men that she deals with,” says Mark. “Her commitment, persistence and willingness to do the hard work make her an outstanding researcher.”
Song says that she enjoys research because she likes the freedom of creative thinking and her interactions with patients. “All of my research is rooted in patients’ input,” she says. “That’s where research ideas should come from.” She says that she is honored and humbled to receive the funding for her research. “My shoulders feel very heavy because there’s a tremendous amount of trust placed in me and my team,” she says. “I know we can’t help everyone, but it’s nice when we interview people that we hear, ‘What you do is so important and impressive and we really need this.’”
She says that it takes a village to create a successful research project. “Different perspectives are so critical,” says Song. She credits a multidisciplinary team —including nurses, clinicians, surgeons, radiation oncologists, programmers and web designers —along with patients and their partners for her success. “We can’t do everything perfectly, but we can do our part to find a way to move things in the right direction,” she says.
Anderson says to look for great things from Song. “She’s just getting started, and she already has two NIH grants,” says Anderson. “She is very persistent and is always striving for the best product she can produce. The quality of what she produces and her funding record demonstrate how outstanding she is. She’s someone to watch in the future.”