Patients and Caregivers Withhold Cancer-Related Information

Patients with gynecologic cancer and their caregivers may claim that they tell their healthcare providers everything, but there are still some issues that go undiscussed, according to recent research conducted across multiple institutions and published in the Oncology Nursing Forum.

Researchers conducted semi-structured phone interviews with 18 patients in treatment for their first appearance of ovarian, uterine, or endometrial cancer who were between treatment cycles 2 and 5, as well as 16 supporters (89% of participants were patient-supporter dyads).

“We were looking at what information the patients were holding back,” said study co-author Kathryn Greene, of Rutgers University Department of Communication. “The interaction with healthcare providers during treatment can increase or decrease uncertainty.”

Ultimately, there were 2 main themes observed in the participant interviews. The first was that everything was easy to share with their caregiver and provider. “This shows up in almost all the cases. Almost everyone says they’re saying everything,” Greene said.

Patients who said that they shared everything often noted that their treatment was going well, and they were comfortable discussing any adverse events (AEs) they were experiencing. They also focused on the quality relationships they had with their caregivers and healthcare providers. “There’s no secrets. We share everything with the doctor,” one participant — a husband of patient – said during the interviews.

Additionally, all healthcare providers who were interviewed claimed that their patients told them everything and reported having good relationships with them.

The second theme that emerged were statements like “Nothing is held back, except…,” where patients and their caregivers claimed that they were mostly open with each other and the providers, but there were some topics that they did not bring up.

“We’re always interested in the exceptions, and these come up spontaneously,” Greene said.

Some patients reported that they were embarrassed of sharing updates regarding constipation or vaginal discharge. “You know, there’s things that are sort of more just, like from a woman’s perspective, like the whole constipation thing was a little embarrassing to me,” one patient said.

These findings are similar to those presented at the 2019 ONS Annual Congress that said women with ovarian cancer who had a high symptom severity were 37% less likely to appropriately communicate issues compared to women with a lower symptom score.

“It’s important health-related information [to share],” Greene said, emphasizing that any AEs a patient is experiencing should be brought up with her healthcare provider.

Both patients and their caregivers also reported a hesitancy to bring up their fears and concerns regarding disease prognosis and the future. People often don’t want to bring these up to avoid adding additional stress to their loved ones in a time that is already so scary and uncertain, Greene said.

“Both support people and patients are saying that these are things that they don’t want to discuss in front of the other person,” she added. “Independently they share these concerns, but neither want to bring them up.”

In talking with patients and caregivers separately, providers—including oncology nurses–may develop a better understanding of their fears and worries, and guide them toward the proper psychosocial supports, if applicable. “We need to probe these interactions separately,” Greene said.

Moving forward, the researchers are hoping to expand their study to a broader cohort, including healthcare professionals, and develop an intervention to ensure that crucial topics are being discussed.

Reference

Checton MG, Venetis MK, Catona D, Bontempo A, et al. Patients with gyecologic cancer and supporters' reports of sharing (and holding back) cancer-related information during oncology visits. Oncology Nursing Forum. 2019