by Jennifer Byrne
Women with recurrent ovarian cancer experience an average of 14 disease or treatment-related symptoms at any given time over the course of their disease.
“It’s a huge symptom burden,” Heidi Donovan, PhD, RN, professor of health and community systems in the School of Nursing and of obstetrics, gynecology and reproductive services in the School of Medicine, and director of the National Rehabilitation Research and Training Center on Family Support at University of Pittsburgh, told Healio. “Even when a patient is facing symptoms they might have had before and they know how to manage, just having that many competing symptoms can make it very hard to keep up with self-care strategies. People get overwhelmed.”
Donovan described ovarian cancer as a low incidence, high-impact cancer. She said roughly 20,000 women who will be diagnosed with ovarian cancer in the U.S. this year, and more than 12,000 will die of the disease. Additionally, many women successfully treated for ovarian cancer experience recurrence after 2 to 3 years.
To address the ongoing burden of symptoms for these women, Donovan and colleagues developed and evaluated nurse-led and self-administered versions of a symptom management tool — Written Representational Intervention to Ease (WRITE) Symptoms. A study of the interventions among 497 women, published in Journal of Clinical Oncology, showed significant improvement in symptom controllability compared with enhanced usual care.
“Our interventions improved women’s sense of control, which is important,” Donovan said. “One of the common things we hear from patients with cancer is that symptoms are something you need to just accept if you are going through cancer and treatment. Our study shows that it is possible to change that perception.”
Healio spoke with Donovan about the study, what it revealed in terms of effective intervention, and how clinicians can better assist women with managing their ovarian cancer symptoms.
Healio: What are some of the concurrent symptoms that women with ovarian cancer experience?
Donovan: Women with recurrent ovarian cancer experience a variety of symptoms, both from their treatments and from the disease itself. Fatigue, neuropathy and constipation were the top three in this study, but there were also psychological effects such as anxiety, depression, mood swings and sleep problems. Women also wanted to talk about abdominal bloating.
Healio: What is the WRITE Symptoms tool and how does it help with symptom management?
Donovan: With this tool, we are trying to encourage women to think more systematically about these symptoms. The first thing is to raise their awareness not only of a particular symptom, but also how it is affecting their day-to-day lives, their functioning, their interactions with others and their emotional well-being. We want the tool to motivate them to communicate about these symptoms to their health care provider. We also want to encourage them to then be persistent and set high expectations for management. We do that through what we call a representational assessment.
We ask women to think and write about one of their three most bothersome symptoms: what it feels like, what they think caused it and what makes it worse. Then we have them write about how the symptom affects their day-to-day life, as well as things they have tried and what has worked.
We evaluated a nurse-led version of the tool and a self-administered, computer-mediated version, with enhanced usual care serving as the control. The nurse-led version was asynchronous and done over an internet message board. We designed the computer-mediated version to do the same thing as a nurse in terms of the questions and the process, but without nurse individualization.
We also asked participants in both interventions to read the evidence-based symptom management guide for their symptom (from a set of guides for 28 common symptoms). We then guided them through goal setting and strategy selection using a combination of communication strategies, self-management strategies and compliance with their physician’s recommendations for medication management.
We tried to train them to persist with symptom management efforts and to evaluate and communicate with providers about what was working and what wasn’t to get better control over their symptoms.
Healio: What did you find?
Donovan: Compared with enhanced usual care, both the nurse-led model and the computer-mediated approach improved women’s perceived control over their symptoms at both 8 and 12 weeks. Statistically, the nurse-delivered and the self-directed approaches did not differ. All three groups had improvements in symptom burden and quality of life over time, which you might not expect in this patient population. The enhanced usual care added several different elements (eg, monthly automated symptom reporting to clinicians, phone calls for any distressing symptoms) from what is typically seen with usual care. So, it wasn’t usual care, but we felt that it was what usual care should be.
Healio: What are the implications of this study?
Donovan: I believe that systematic symptom assessment and reporting to clinicians has enough evidence behind it now that it needs to become standard of care. In addition, our WRITE interventions that provide support in developing symptom management goals and strategies can improve women’s sense of control over their symptoms.
Healio: What do you have planned next for this intervention?
Donovan: We are developing a mobile health app that could make WRITE interventions a bit more flexible and easier to use. We want an intervention that can be integrated into cancer care delivery, not just used in research. We have funding to develop this app for family caregivers, using the same symptom management tool and approach.
My goal, as we get additional funding to work on the patient side, is to implement this as a cancer care delivery research study. I’d like to see what we can do with something that is scalable and doesn’t require a lot of clinician input, but can give patients and their families the tools they need to communicate about and manage symptoms.
This article was published by Healio.