Women with Ovarian Cancer Less Likely to Alert Providers As Symptoms Worsen


Health care providers need to break the cycle of inappropriate symptom communication to help improve patients’ quality of life.

The more severe their symptoms, the less likely women with ovarian cancer are to report the discomforts to their oncologists, a study found.

Women with high symptom severity scores at the start of the study were 37% less likely to appropriately communicate those issues compared to women with low symptom severity scores, researchers found. A member of the research team from the University of Pittsburgh shared the findings at the ONS 44th Annual Congress.

Women with ovarian cancer tend to have multiple concurrent symptoms that negatively affect their quality of life, functionality and treatment adherence, making the need for communication very important, said lead author Teresa Thomas, PhD, BA, RN, an assistant professor in the university’s School of Nursing. Symptoms often include abdominal pain, bloating, cramping, fear of recurrence or disease progression, indigestion, sexual dysfunction, vomiting, weight gain, weight loss, and neurological problems, she said, adding that underreported symptoms may be the ones that are most difficult for patients to talk about, or for practitioners to manage.

The study hinged on previous evidence that women with ovarian cancer often struggle to communicate their cancer- and treatment-related symptoms to their healthcare providers. Research shows that just 61% of these patients have discussed their most-noticed symptom with a provider in any given month, and among those who have, 50% have not received a management recommendation, Thomas said. She added that 53% of the symptoms considered by patients to be top priorities have not been documented by providers.

The study sought to learn the patient characteristics associated with varying levels of appropriate symptom communication at baseline, thus creating a predictive model. The study also sought to reveal the association between symptom communication and severity over time.

The researchers recruited women with recurrent ovarian cancer from 68 sites of a randomized clinical trial called the Written Representational Intervention to Ease Symptoms (WRITE), sponsored by the Gynecological Oncology Group. They selected 497 participants with ovarian cancer and at least 3 symptoms. In the WRITE study, the patients had been randomized into 3 groups, with 1 getting usual care, another self-documenting symptoms and a third having symptoms documented by nurses.

The groups documenting their symptoms used monthly questionnaires including the Symptom Representation Questionnaire, which rates the severity of 28 symptoms on an 11-point scale. These patients prioritized 3 symptoms over which they wanted to gain better control. A 4-item questionnaire assessed their communication of these symptoms with providers. Based on patients' assessments of symptom severity, their communication was ranked as “appropriate” (severity of 0-10 and any level of communication) or “inappropriate” (severity of 5-10 and no or limited communication).

At the outset of the study, the researchers used a mathematical model to predict inappropriate symptom communication styles, controlling for age, education, optimism, anxiety, depression, and social support. In addition, they analyzed changes in symptoms and communication over time by calculating score differences and correlations between severity and communication appropriateness at each time point (baseline and 4, 8 ,and 12 weeks).

The team found that appropriate communication occurred for 42% to 94% of women’s top symptoms. Symptom severity was the strongest predictor of appropriate communication at baseline, with women who had high symptom severity scores 37% less likely to appropriately communicate compared with women who had low symptom severity scores. From baseline to 12 weeks, symptom severity decreased overall and appropriateness of communication increased overall. However, symptom severity remained negatively associated with appropriate communication during that time period.

“These results demonstrate that symptom severity was inversely related to appropriate communication,” the researchers wrote. “Women experiencing severe symptom severity were less likely to report having appropriate communication about that symptom with their healthcare provider. This study underscores the need for health care providers to break the cycle of inappropriate symptom communication to ensure patients’ symptoms are adequately discussed and managed throughout women’s cancer experience.”


Thomas T, Schenker Y, Cohen S, et al. Symptom severity is negatively associated with symptom communication over time among ovarian cancer survivors: establishing the need for appropriate symptom communication. Presented at: Oncology Nursing Society 44th Annual Congress; Anaheim, California; April 11-14, 2019. Abstract No. 4486.

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