A new symptom-management guide designed by oncology nurses helps women with ovarian cancer feel more in control of their symptoms.
WRITE, an online symptom management tool designed to help women with ovarian cancer take control of their symptom management, helped women feel more in control of their disease, according to findings from a nurse-led study (NCT00958698) that were recently published in the Journal of Clinical Oncology.
The study demonstrated that both patients who received nurse-guidance with the instrument and those who utilized it autonomously with a computerized version reported higher satisfaction with their symptom management compared with those who received standard of care: potentially unlocking a paradigm shift in ovarian cancer symptom management.
“We found that in both of the WRITE symptoms interventions arms, both the nurse delivered and the self-directed [arms], women had improved control over their symptoms compared with those in the usual care group,” explained lead author Heidi Donovan, PhD, RN, professor of Nursing and Medicine, co-director of the National Center on family support, at the University of Pittsburgh, in an interview with Oncology Nursing News®.
Donovan and her team of oncology nurse investigators collaborated to design WRITE Symptoms, (Written Representational Intervention to Ease Symptoms) a novel instrument which guides patients to reflect and describe a symptom—elaborating on what causes it, what worsens it, how it feels, what impact it makes on their daily lives, and how they have approached managing it.
“[In my opinion] some principles of our intervention are critical and actually overdue in clinical practice for ovarian cancer and other cancers,” she noted, emphasizing the importance of systematic symptom assessment in clinical settings, and enhancing women’s confidence in their ability to manage their symptoms, as well as their confidence communicating these symptoms to their healthcare providers.
“[By systematic] I mean [asking] the same questions repeatedly, over time, in order to pick up on changes that that are affecting patients and on symptoms that are affecting their quality of life, and their ability to function on a day-to-day basis,” she said. “The second principle was really enhancing women's confidence… A lot of what we did in this intervention was try to motivate women to recognize how much [of an] effect their symptoms were [causing] and build their confidence in their ability or their knowledge of things that they could try to get better management.”
The third principle that this intervention encompassed was an iterative approach to symptom management, according to Donovan. Symptom management requires a lot of “adjustment and communication” she said. The intervention, therefore, focused on consistent communication between patients and providers, following through on provider recommendations for symptom management, and providing patients with symptom-management strategies that they could complete at home. “Those are things we should be doing in clinical practice. All the time.”
The study enrolled 497 participants. Eligible participants included those with recurrent or persistent, ovarian, fallopian tube, or primary peritoneal cancer. Enrolled patients were asked to complete questionnaires regarding symptom burden, controllability, and quality of life. After completing these surveys, they were randomized to 1 of 3 groups: 1 group was guided by nurses through the WRITE intervention: nurses helped patients navigate the process via an asynchronous web-based message board, 1 group autonomously guided themselves through WRITE with a fully computer-mediated version, and 1 group did not participate in WRITE, but rather acted as a control group.
Since the intervention was originally developed to be web-based, patients without computer or internet access were given laptops with 3G or 4F access. The website had monthly questionnaires, and for those in the nurse-guided arm, there were also message boards to connect them to their corresponding nurse.
The intervention itself was theory guided, explained Donovan. “It is a combination of educational principles and psychology. And so we did, the first part was what we call a representational assessment. We asked women to write about these symptoms that they were experiencing, and we asked them very basic set of questions. So tell us about the symptom. What does it feel like? How long have you had it? Is it and what's the time pattern of it? What do you think causes the symptom? And what things make it worse? What impact does this symptom have on your daily life?”
Patients were also asked to acknowledge what the team referred to as “barriers to symptom management,” or fears that a patient may hold which prevent them from seeking necessary care. For example, a patient might fear that complaining to their provider may interfere with her treatment, or a patient may have a fear of becoming addicted to opioids.
After fears and symptoms were discussed, there was a library of guides intended to help create care plans for 28 different possible symptoms.
“All cancer survivors, and their families are always looking for things that give them control over their lives, their symptoms, their cancer. As providers, we can try to shift their perceptions of their control to give them the confidence to be their own self advocate,” said Donovan. “Even tracking symptoms can give people power by [allowing them to] discover what it is that makes symptoms worse and how to avoid those things.”
Right now, the team is also developing an app designed to help guide family caregivers monitor their loved one’s symptoms.
“Family caregivers are really the backbone of our health care system,” shared Donovan. “They are next to the patients all the time. They are looking for that sense of control over what's happening. Often, they are the people who are doing the research for the patients, whether it is on the cancer, whether it's symptom management. We don't do much for training those family caregivers or supporting them in their role.”
“It has the same principles in terms of, you know, working through goal setting and strategy selection, to come up with a smart care plan for themselves and for their loved one.”
Online Tool Helps Ovarian Cancer Patients Feel More in Control of Symptoms. UPMC. News release. February 7, 2022. Accessed February 25, 2022. https://upmc.me/3pgDGVe