Finding the best treatment for sufferers with complex cancers – that’s what tumor conferences aim to do. Doctors from oncology, radiology, surgery, pathology and other disciplines talk about the disease in these interdisciplinary meetings – but rarely with the patients.
So far, only a few breast and gynecological centers in Germany offer their patients the opportunity to participate in tumor conferences. A team from the University of Oldenburg and the University Hospitals of Bonn and Cologne has now investigated in the PINTU study – funded by Deutsche Krebshilfe e.V. – whether female cancer patients benefit from such participation. One of the findings: Most respondents felt participation was positive, the team writes in the journal Cancer Medicine. The findings will help develop recommendations for hospitals that want to include sufferers in tumor conferences.
“Whether patients really benefit from being present during the often highly technical discussions has been controversial – and unfortunately little studied,” says the Oldenburg-based healthcare researcher and lead author of the study, Prof. Dr. Lena Ansmann. However, the international community is increasingly looking for ways to involve patients more in the planning of their therapy. The goal of the research team was therefore to compile and analyze a larger data set. “As far as we know, our study is one of the first major investigations on this topic,” says co-author Prof. Dr. Nicole Ernstmann, an expert in health communication at Bonn University Hospital.
The majority of all breast cancer patients in Germany are currently treated at certified cancer centers. Tumor conferences are mandatory here, but patient participation is not. “We know from previous studies that about five to seven percent of those with the disease have already attended a tumor conference,” Ansmann explains. But what role patients take in the conferences, how the conferences proceed, and what the ultimate experiences of those involved are has been unclear.
To narrow this knowledge gap, the researchers surveyed 87 patients with breast cancer or a gynecologic tumor before and immediately after their participation in a tumor conference and four weeks later. For comparison, they surveyed 155 patients who did not attend the tumor conference that affected them. The team also observed a total of 317 case discussions in tumor conferences – directly and with the help of video and audio recordings. Affected individuals were involved in 95 of these case reviews.
It can be seen that the tumor conferences with participation of the patients varied considerably. Some clinics had patients attend the entire conference. Others held the actual conference without the sufferers, but let them participate in a smaller round afterwards, which provided information about therapy recommendations, for example. Other conditions of the conferences also varied, such as duration or seating arrangements.
From the interviews, it appeared that the sufferers played a rather passive role in the conferences. For example, only 61 percent reported being involved in the decision to treat. Overall, most patients perceived the conferences as rather positive, felt them to be informative, for example, and recommended attendance to others. However, some of those affected reported that the conferences had triggered fear and uncertainty among them – a circumstance that future studies would have to focus on more closely, Ansmann emphasizes.
Original publication:
Lena Ansmann et al: “Patient participation in multidisciplinary tumor conferences: How is it implemented? What is the patients’ role? What are patients’ experiences?”, Cancer Medicine, DOI:10.1002/cam4.4213
