Cancer Patients Want to Pull Back the Curtain on Pathology
Speaking directly with a pathologist could help patients better understand their diagnosis and feel empowered, a survey of patient sentiment finds.
Some of the most important players on a cancer patient’s health care team are people they typically never meet or interact with — the pathologists who evaluate their tissue samples to determine the type and stage of disease they have.
And as interest in patient-pathologist consulting programs has gained momentum nationally, researchers at Michigan Medicine have conducted the first known survey to quantify patient interest in pathology services and to better understand how patients might feel about meeting their pathologist and seeing images of their tissues. The team’s findings appear in the Archives of Pathology & Laboratory Medicine.
“The vast majority of patients we surveyed — 85% — said they were ‘definitely interested’ or ‘interested’ in meeting with a pathologist to discuss their pathology report, and to look together at their tissues under a microscope,” says study first author Cathryn Lapedis, M.D., M.P.H., assistant professor of pathology. “Only 7% indicated they had no interest in this type of service.”
The research team collected 100 responses from patients (and a few caregivers) recruited through the U-M Rogel Cancer Center and the Cancer Support Community of Greater Ann Arbor. The survey was offered both in paper format and online.
Along with being asked to rate their interest in meeting with a pathologist, they were asked an open-ended question about why they answered the way they did.
“Overall, three major themes emerged,” says Lapedis, also a member of U-M’s Institute for Healthcare Policy and Innovation. “First, patients found the idea of meeting with a pathologist and seeing their tissue could be empowering. Patients also thought the interaction could clarify the process of how a diagnosis gets made — what happens to their tissue samples, and how pathologists make determinations about the grade and stage of a cancer. And lastly, many patients thought it would help them have a deeper understanding of their individual disease.”
Here are some of the responses the survey respondents gave:
- “Having knowledge helps me focus and stay calm… I feel more grounded when I have facts. And that groundedness makes me feel stronger and ready to fight.”
- “I still don’t know what all the wording on my [pathology report] says, would be nice to be able to have someone explain it.”
- “There [was] different grading of [my] tumor from one institution to another. A discussion might have increased trust and reduced stress.”
Despite being a relatively small sampling from an already engaged community, the high level of interest found in the U-M survey dovetails with reports from institutions that have started pilot pathology consultation programs, Lapedis notes. Still, many questions remain before such programs are likely to become commonplace, she adds.
“How many pathologists would be interested in participating and how do we ensure they have the appropriate skills for communicating with patients?” Lapedis says. “And, of course, there’s a big question of how these consultation programs would be funded. We believe that like any other medical intervention, patient-pathologist consultation services should be studied to determine their effectiveness and value.”
In general, patient-centered communication has been shown to reduce anxiety and distress and to improve patients’ quality of life, the authors point out in the study. Patient-pathologist consulting programs could also help patients make value-based treatment choices — such as choosing lumpectomy over mastectomy in early-stage breast cancer, or potentially improve follow-up and treatment adherence, they note.
In multidisciplinary clinics offered by many cancer centers, patients often spend a day meeting with members of their care team to discuss their diagnosis and treatment. The group often includes their medical oncologist, radiation oncologist, surgeon and others.
Lapedis believes that if patient-pathologists consultations are found to be valuable and effective, there would be an opportunity to incorporate pathologists into this existing format.
“The goal is not to take away from information that oncologists and others currently provide, but to offer an additional resource,” Lapedis says. “Many people are visual learners, and being able to see slides of your tissues and to have someone walk through them with you is a going to provide a different experience than just reading about them in a report. Pathologists may also be better able to answer some patient questions about laboratory reports than other members of the team.”
A side benefit might also include improving communication between pathologists and other members of multidisciplinary teams, she adds.
Although not part of a formal pathology consultation program, earlier this year, U-M leukemia patient Brenda Berky was given a rare opportunity to meet with hematopathology specialists, who helped her understand the science behind her disease.
This unusual arrangement was provided through a project carried out by the U-M Department of Pathology’s Patient and Family Advisory Council, a group with which Lapedis worked in the early stages of her study. The group is co-chaired by Jeffrey Myers, M.D., the A. James French Professor of Diagnostic Pathology, and patient adviser Michele Mitchell.
During the visit, Berky was able to see her chromosomes, her bone marrow biopsy, and her pathology slides, as well as meet with multiple pathologists and medical laboratory scientists who help explain more about her cancer.
“It blew me away. It was a really cool experience,” Berky says in a video (included below) about her behind-the-scenes experience. “I knew pathologists worked with blood and specimens and things like that, but I never knew it to this degree, it’s taught me a lot."
Paper cited: “The Patient-Pathologist Consultation Program: A Mixed-Methods Study of Interest and Motivations in Cancer Patients,” Archives of Pathology & Laboratory Medicine. DOI: 10.5858/arpa.2019-0105-OA
Additional authors on the paper, all of U-M, include Jennifer K. Horowitz, Lisa Brown, Brian E. Tolle, Lauren B. Smith, and Scott R. Owens.
The research was supported by the Department of Veterans Affairs and the U-M National Clinical Scholars Program.