Online tool helps ovarian cancer patients feel more in control of symptoms

An online symptom management tool that harnesses the problem-solving benefits of expressive writing could help women with ovarian cancer better manage complex symptoms, according to a new study led by a University of Pittsburgh and UPMC nurse-scientist.

Published today in the Journal of Clinical Oncology, the study found that patients who used nurse-led and self-directed versions of the tool reported a better sense of control over symptoms compared to enhanced usual care.

“Women with ovarian cancer experience an average of 14 concurrent symptoms, so symptom management is very complex. It can be overwhelming for patients and challenging for providers, who may not have time to address these symptoms in a typical 15-minute appointment,” said lead author Heidi Donovan, Ph.D., R.N., professor of health and community systems in Pitt’s School of Nursing and obstetrics, gynecology and reproductive services in the School of Medicine. “That’s why we developed a symptom management approach outside of a normal clinical setting, from the comfort of a woman’s own home.”

According to Donovan, ovarian cancer is a “low incidence, high impact cancer.” In 2022, about 20,000 women will be diagnosed with ovarian cancer in the U.S., and more than 12,000 will die. For many patients who are treated successfully, the cancer recurs after two to three years.

“There’s a vast difference in quality of life between patients who manage symptoms successfully and those who don’t, both throughout chemotherapy and afterwards,” said Donovan, who is also director of the Gynecologic Oncology Family CARE Center at UPMC Magee-Womens Hospital. “Effective symptom management requires that patients follow directions from providers but also be willing to communicate, make adjustments and try new strategies.”

Donovan and her team developed a new symptom management approach called Written Representational Intervention to Ease Symptoms, or WRITE Symptoms, which guides patients to reflect on how they experience a symptom: what causes it, what makes it worse, how it feels, how it impacts their daily life and how they’ve tried to manage it.

“The WRITE approach blends health psychology with educational principles,” explained Donovan. “The process of talking or writing about a symptom in a systematic way can help women understand which management strategies work and which don’t. Using evidence-based symptom management techniques, we then help patients develop strategies for addressing target symptoms. Later, patients review the strategies and assess if changes need to be made. It’s a very iterative process.”

The researchers recruited 497 patients with recurrent or persistent ovarian, fallopian tube or primary peritoneal cancer. After participants completed surveys about symptom burden, controllability and quality of life and selected three target symptoms they wanted better control of, they were randomly assigned to one of three groups.

One group completed a nurse-led version of the WRITE intervention, in which nurses guided patients through the process via an asynchronous web-based message board. The second group directed themselves through a fully computer-mediated version of WRITE. The third, or enhanced usual care group, did not complete WRITE and acted as a control.

The analysis found that both WRITE interventions improved women’s sense of control over their symptoms after eight weeks, and these measures were significantly greater compared with enhanced usual care.

“To see the same benefits in both the nurse-led and fully computer-mediated versions of the program is really powerful,” said Donovan. “We also found that the self-led program was much more efficient: People were able to develop a symptom management plan in about 30 minutes compared to a few weeks with the asynchronous, nurse-led version.”

The researchers are now developing a mobile health app that will train family members and other caregivers to help their loved ones with ovarian cancers better manage symptoms. Based on the computer-mediated version of WRITE, the app will guide users through questionnaires and problem-solving exercises, and it will feature disease-specific modules and core modules that could apply to patients with any chronic disease. For patients who need extra support, there will also be an option to connect with providers. According to Donovan, this app could be offered to families of gynecology cancer outpatients in the next year or so.

This research was funded by the National Institute of Nursing Research (R01NR010735/NRG GOG-259) and the National Cancer Institute (U10CA180822, U10CA180868 and UG1CA189867).

Other authors on the study were Susan M. Sereika, Ph.D., Judith E. Knapp, Ph.D., Mary C. Roberge, R.N., B.S.N., Teresa H. Thomas, Ph.D., B.A., R.N., Sara Jo Klein, M.S., B.S.N., and Michael B. Spring, Ph.D., of Pitt; Lari B. Wenzel, Ph.D., of the University of California; Robert P. Edwards, M.D., of UPMC; Susan. H. Hughes, R.N., M.S.N., and Sandra E. Ward, Ph.D., R.N., of the University of Wisconsin-Madison; Susan Nolte, Ph.D., R.N., of Jefferson Abington Hospital; Lisa M. Landrum, M.D., Ph.D, of the University of Oklahoma Health Sciences Center; Catherine Casey, M.D., of Minnesota Oncology;  David G. Mutch, M.D., of Washington University in St. Louis; Robert L. DeBernardo, M.D., of Cleveland Clinic; Carolyn Y. Muller, M.D., of The University of New Mexico; and Stephanie A. Sullivan, M.D., of VCU Health.