Hidden Burdens and Trying to Feel Normal: The Effects of an Ovarian Cancer Diagnosis

After a cancer diagnosis and treatment, one may question when they will actually start to feel “normal” again, whatever that may be. The Ovarian Cancer Prognosis and Lifestyle (OPAL) study set out to help women with ovarian cancer to understand just that.

“The OPAL Study addresses the question of whether lifestyle choices during or after treatment could positively impact quality of life and, ultimately, survival,” the researchers wrote.

The prospective OPAL study identified Australian women who were newly diagnosed with primary ovarian cancer between 2012 and 2015 to evaluate lifestyle factors after diagnosis. Participants completed questionnaires at baseline, and again at three, six, nine, 12, 24, 36 and 48 months after diagnosis.

Baseline data included sociodemographic, reproductive and hormonal, medical and family history, and lifestyle information, such as diet, alcohol use, smoking, physical activity and sitting time.

At follow-up, women were then asked about their current lifestyle, medication and complementary therapy use, and a range of patient-reported outcomes — including the Hospital Anxiety and Depression Scale, Insomnia Severity Index and FACT instruments for ovarian cancer, neurotoxicity and fatigue.

In addition, 85 percent of women provided blood samples at recruitment and/or at 12 months after diagnosis.

At the 2018 Cancer Survivorship Symposium, researchers presented three abstracts regarding their findings on quality of life and survival, well-being at the end of treatment, and the hidden burden of anxiety and depression associated with an ovarian cancer diagnosis.

Lifestyle and Outcomes

Oftentimes, ovarian cancer is not found until it has progressed to advanced disease, in turn, possibly limiting long-term survival for women. “Five-year survival after a diagnosis of ovarian cancer is less than 45 percent, and women often ask what they can do, beyond following the recommended treatment, to improve their chance of survival,” the researchers wrote.

Of the 958 women included in this portion of the study, 72 percent had high-grade serous ovarian cancer and 72 percent had advanced-stage disease. As the study is ongoing, follow-up is currently close to 36 months with responses received from 85 to 95 percent of active participants.

As of October 2017, the researchers received 734 responses at six months, 751 at 12 months, 636 at 24 months, 434 at 36 months and 225 at 48 months, of which women completed approximately five questionnaires each.

In total, 558 women experienced disease progression or recurrence, and 332 (35 percent) had died, leaving 300 active participants in the study.

At each time point of follow-up, 6 to 9 percent of women reported having clinical levels of anxiety, 5 to 7 percent with depression, 9 to 14 percent with insomnia and 30 to 57 percent with fatigue.

“This is the first prospective study to collect detailed lifestyle, quality of life, clinical and outcome information from a large population-based cohort of women newly diagnosed with ovarian cancer,” the researchers wrote. “It provides a valuable resource to identify relationships between potentially modifiable aspects of lifestyle and outcomes in women with ovarian cancer.”

Well-Being

After a cancer diagnosis, it is often difficult for patients to adjust to their new normal in life. Although there are resources available for them, overall well-being during this adjustment is not always understood.

“Patients often ask if/when they will feel normal again following treatment for ovarian cancer, the researchers wrote. “There is a paucity of data on the trajectories of quality of life, [as well as] physical, social, emotional and functional well-being over time following chemotherapy and especially regarding those who have persistent problems.”

In this portion of the study, the researchers aimed to quantify the proportion of women with significantly lower quality of life and well-being compared with the general population at the conclusion of their treatment to determine if/when they felt they were able to return to normal.

In total 580 women who received three or more cycles of platinum-based chemotherapy as their primary treatment completed a questionnaire while either on treatment or less than six weeks after completing it.

Forty-four percent of women reported having quality of life scores that were significantly lower than the general population at baseline. After receiving chemotherapy treatment, 35 percent of women felt they returned to normal by three months, which increased to 73 percent by six months. However, 27 percent felt they had not returned to normal by 18 months.

At baseline, less than 50 percent of women reported having lower functional and emotional well-being compared with the general population. Of note, physical well-being was reported to have returned in three of four women.

“For most, well-being recovered within six months, but a substantial proportion reported ongoing deficits,” the researchers wrote. “A particularly prolonged impact was seen for those with poor emotional well-being at baseline, warranting early intervention in this subset.”

Anxiety and Depression

Previous studies have shown that women with ovarian cancer report higher rates of anxiety and depression. However, these studies may be limited in their execution.

“Most studies have used a cross-sectional design at a single time-point, not considered prior history and not included affected women who are symptom-free due to medication,” the researchers wrote.

In this portion of the study, the researchers aimed to quantify the total burden of anxiety and depression among women with newly diagnosed ovarian cancer. They also evaluated the proportion of women who experienced symptoms only after diagnosis and those with persistent symptoms, as well as the use of appropriate medication/services by those affected.

At baseline, 893 women were asked if they had ever been diagnosed with anxiety or depression and if they took medication for this in the year before their ovarian cancer diagnosis. Then, at follow-up, patients completed the Hospital Anxiety and Depression Scale and were also asked about current medication use.

Overall, 216 women reported clinical levels of anxiety (18 percent) or depression (15 percent) on at least one occasion during the first three years after their ovarian cancer diagnosis, with another 157 who reported using anxiolytic or antidepressant medications. An additional 167 women reported having subclinical anxiety or depression.

Among women who reported to have clinical levels of anxiety or depression and/or were taking medication, 225 (60 percent) reported this at least three or more times throughout the study follow-up. Meanwhile, 216 patients (58 percent) reported having no prior history of anxiety or depression, and 271 (73 percent) did not take medication for this in the year before diagnosis.

When women did report clinical levels of anxiety or depression, only 45 percent reported that they actually took medication (37 percent) and/or were seeing a psychiatrist or psychologist (19 percent).

“More than 40 percent of women with ovarian cancer experienced clinical levels of anxiety or depression during treatment or the first three years of follow-up, for 25 percent this persisted,” the researchers wrote. “For 24 percent this was their first experience of distress and less than 50 percent of those affected did not receive appropriate medication or psychological support. The hidden burden of anxiety and depression in this population is much greater than previously reported but is amenable to effective intervention if recognized.”