The dearth of effective treatment options for patients with ovarian cancer not only leads to poor health outcomes, but also leads to psychological distress, according to new research.
The lack of therapeutic options and support networks for patients with ovarian cancer results in uncertainty and disruption for patients with the disease, as well as for their caregivers, according to a new thematic analysis of patient and caregiver sentiments.
Corresponding author Louise Sharpe, PhD, of the University of Sydney, and colleagues wrote that ovarian cancer is both rare and understudied. As a result, patients who are diagnosed with the disease are usually met with a poor prognosis and few effective treatment options.
“With no available screening and limited public awareness, ovarian cancer has been called a ‘silent disease’ or ‘forgotten cancer,’” the investigators wrote. “Diagnosis is difficult and for some individuals early symptoms are ignored or misdiagnosed, which makes diagnosis ultimately more shocking.”
Sharpe and colleagues wanted to gain a better grasp of how those factors affect the experience of patients and their caregivers. To do so, they used data from the 2017 Ovarian Cancer Australia Consumer Survey to produce an inductive thematic analysis. The new report is based on the 219 patients and 78 caregivers who provided qualitative responses in the survey.
Responses were categorized into 9 themes for patients and 7 themes for caregivers. Those themes tended to center on psychological distress sparked by uncertainty.
“From the early stages, individuals’ fears for the future were a source of distress within a climate of uncertainty,” Sharpe and colleagues wrote.
Since less is known about ovarian cancer compared with other cancers, there are also fewer support structures in place, which the investigators said contributes to feelings of isolation and frustration among both patients and caregivers. Patients benefited from access to transparent and balanced scientific information, but that could be hard to find because of the relative lack of ovarian cancer specialists, the authors said, a problem that was particularly stark in rural areas.
Isolation was a particularly potent problem among young people with ovarian cancer, who reported feeling like outsiders both among healthy peers and among older patients with ovarian cancer.
“Our findings suggest that these features contribute to an enduring state of isolation that is compounded by feelings of marginalization,” they said.
For some patients, worry about their cancer can become all-consuming, contributing to a low quality of life. On the other hand, patients who were able to gain a perception of control through restoring a sense of normalcy in their lives or engaging in self-advocacy led to a reduction in feeling overwhelmed.
In terms of caregivers, Sharpe and colleagues found they often felt inadequate in their abilities to provide support to patients, and they also suffered from lack of access or availability of support groups. Both patients and caregivers reported feeling a burden of needing to reduce the others’ distress by suppressing their own negative emotions, the authors said.
In their conclusion, the investigators said providing clear, specific information and access to support networks could make a significant impact on the quality of life of people affected by ovarian cancer.
“These results suggest that provision of support and information in accessible healthcare settings has the potential to minimize the impact of ovarian cancer and its treatment-related difficulties,” they concluded.
Tan JH, Sharpe L, Russell H. The impact of ovarian cancer on individuals and their caregivers: A qualitative analysis. Psychooncology. Published online September 17, 2020. doi:10.1002/pon.5551