Kathy LaTour is a breast cancer survivor, author of The Breast Cancer Companion and co-founder of CURE magazine. While cancer did not take her life, she has given it willingly to educate, empower and enlighten the newly diagnosed and those who care for them.
As the needs of cancer survivors have been determined and researched, there is still confusion about which medical professional cares for what part of their survival.
Through research the needs of cancer survivors have been identified, but questions about who and how survivors will be followed remains.
Anna Meadows, M.D., professor Emeritus at the Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, addressed the issue of avoidance in her morning presentation at the Cancer Survivorship Symposium: Advancing Care and Research.
She has found that few childhood survivors or their parents want to be reminded of their cancer experience by going in for checkups or filling out surveys. The medical community sees many follow up areas that can easily be followed by primary care physicians (PCP), many of whom understand they are the logical provider, while reminding the cancer community that their training didn't include the specifics of caring for cancer survivors.
Who is the best person to provide patient centered care? This was a question that this morning’s research showed is confusing for not only survivors, but also oncologists, survivor care specialists affiliated with cancer centers and PCPs.
Researchers presenting from the University of Michigan at Ann Arbor based their discussion on a statement from the 2013 IOM report Delivering High Quality Cancer Care, which called for coordinated care among the cancer care team, primary care providers and geriatric providers. The researchers accrued 5,200 women cancer survivors and asked them a number of questions about who they would prefer to follow them in a number of areas. The results showed a number of challenges for this team-based approach — primarily that most women want their oncologist to follow them for cancer related issues and their PCPs to follow them for other health concerns.
There could be many reasons for this, including not wanting to replace the relationships forged while going through cancer. Trust is a hard thing to replace, particularly when fear of recurrence follows you for years. And, while many of the follow up specifics are clearly areas that can be monitored by PCPs, many see themselves as unprepared.
Between speakers I struck up a conversation with the young woman sitting next to me. She is a PCP who has recently had a number of cancer survivors added to her practice. As we talked briefly she said her attendance at the meeting was to learn as much as possible about what her survivor patients need since she knew very little about their concerns. I recommended she subscibe to CURE and Heal to help with her education.
The sessions that followed looked at designs for PCP education, as well as outreach to patients including community based clinics, designs for primary care physicians, telemedicine and even a renovated 18-wheeler that covers rural communities in northeast Texas.
No matter who is assigned the tasks of following survivors, you have to remember to ask: If we build it, will they come?