ANAHEIM, CALIF. – Building relationships with compassionate, up-to-date primary care physicians and specialists will be key in transitioning oncology patients out of cancer centers and back into the community as survivors, researchers are learning at the comprehensive cancer center at the University of Michigan in Ann Arbor.
In a pilot study at the institution, apprehension about appropriate follow-up care was the second most common concern of breast cancer survivors at a median of 1 year post diagnosis, closely following predictable questions about how to avoid cancer recurrence.
Study researchers asked 20 recent breast cancer survivors to rank, in order, their most important concerns on a checklist of 23 items in five categories, including recurrence, health maintenance, family needs, and genetic cancer risk.
The item, "What can I do to reduce my risk of recurrence?" was selected by 90% of respondents as being among their top five concerns.
After 1-hour, customized transition visits with an advanced practice nurse, recurrence concerns remained on the top five list for 60% of survivors.
Virtually every other issue considered most pertinent to survivors involved transitional care, including specific questions about surveillance schedules and concerns about general health risks after cancer.
For example, prior to a transition visit, 70% of patients wondered, "Which providers should I call with what symptoms?" according to the study presented in poster form at the annual meeting of the American Psychosocial Oncology Society.
Fully 85% of patients wanted to know the most appropriate follow-up schedule for examinations and testing, and 75% sought information about which symptoms would warrant medical attention in a long-term survivor.
Surveys done after the transition visits revealed that just 25% of survivors still said they didn’t know what follow-up schedule was appropriate, or which providers to call with specific symptoms, Patricia M. Clark, director of the adult cancer survivorship program at the University of Michigan, noted in an interview at the meeting.
Concerns about bone health after breast cancer were voiced by 80% of patients before the transition visit and by 45% post visit.
Prior to the visit, 70% of women wondered whether they should follow a specific nutritional plan, but only 20% of women still had that question afterward.
Other significantly reduced concerns involved family needs, long-term sleep problems, and the risk of breast cancer in family members, said Ms. Clark, a family nurse practitioner who specializes in breast cancer.
Christina H. Jagielski, research coordinator, and Dr. Jennifer J. Griggs, an oncologist who directs the university’s breast cancer survivorship program, were among the study’s coinvestigators.
Themes from the pilot study underscore the medical and psychosocial necessity of developing survivorship care as a "distinct phase of cancer care," as recommended in the Institute of Medicine’s 2005 report "From Cancer Patient to Cancer Survivor: Lost in Transition," Ms. Clark said.
"We are trying hard to follow the recommendations," she noted. "We did take to heart the notion of a transition visit."
But the passing of the baton has not always been smooth, she admitted.
Pulling together an accurate and complete breast cancer treatment summary for each patient proved daunting, even with electronic medical records’ becoming more common in health care settings.
Issues of mistrust and unfamiliarity can also complicate the handoff, emphasized Dr. Patricia A. Ganz, professor of health sciences and medicine at the comprehensive cancer center of the University of California, Los Angeles, who served on the IOM panel.
"We really do a lousy job [coordinating care of] 12 million Americans ... living in this posttreatment space," she said during a plenary talk at the meeting.
The "gulf and divide" between oncologists and community physicians provides little opportunity for cross-talk and the building of confidence in patients returning to primary care, Dr. Ganz noted.
Instead, patients are likely to remember remarks such as, "Your doctor missed this. They’re not up to date on this," she said.
In fact, during her "road show" to speak about cancer survivorship across the country, Dr. Ganz said she has identified "empathetic, caring, skilled internists and family physicians" who are very much interested in learning how to care for the special needs of cancer survivors throughout their lives, much as they care for patients following heart attacks or strokes.
The investigators reported no relevant financial disclosures.