Survivorship Issues: Passport to a 'New Country'
Network - Fall 2009
By Sandi Stromberg
When we talk passports, we think of the government document that permits us to cross borders into foreign countries. But now, cancer survivors at M. D. Anderson will get another kind of passport, one that ensures good surveillance of their health as they move into post-treatment territory.
The Passport Plan for Health, which is being rolled out to the institution’s care centers, allows survivors to re-enter their community doctors’ offices with accurate information about their cancer, cancer treatments and future care needs.
Currently, survivors of cancers of the genitourinary system (bladder, prostate, testicular and penile), gynecologic system (cervical, endometrial, ovarian and other rarer gynecologic cancers), thyroid and breast are receiving their passports. In the next few months, plans are to add survivors of head and neck cancers and those who have had stem cell transplants.
Deciding what belongs in a passport
To develop the passport, the institution first established a steering committee of physicians, social workers, dietitians, patient education specialists, patient advocates and other pertinent health care professionals. This group set about to understand what constitutes a long-term survivor in each
- When there is the least risk for recurrence
- What kinds of surveillance and screenings survivors should have
- How to monitor potential late side effects — taking into consideration the type of cancer and treatments a patient received
- What interventions might be needed for symptom management
They also wanted to address the emotional, social, spiritual and economic concerns with which survivors often deal.
The next step was to survey 11 focus groups. Seven were conducted as videoconferences with 34 physicians throughout the southeast United States. Four in-person groups were convened with 44 physicians in Texas and Alabama. There also was a direct-mail survey sent to 2,000 community physicians nationwide in the specialties of family practice, medical oncology, general internal medicine, obstetrics/gynecology and pediatrics.
“This provided us with the qualitative information we were seeking,” says Fran Zandstra, director of M. D. Anderson’s Survivorship Program. “Our next step is to do a quantitative survey that will go deeper into the needs of community physicians and survivors while validating what we’ve already learned.”
Feedback from community physicians, the ones who will ultimately need the information, has been most helpful.
“They told us that so often when a cancer survivor comes to them as a patient, they’re provided 300 pages of medical records that they simply don’t have time to read,” Zandstra says. “What they want is a one- to two-page document that tells what kind of cancer the survivor had, how it was treated, what they should look for and how to look for it. That’s what we’re giving them.”
The beauty of the documentation is that it is available online, so wherever survivors are, they can access their medical history.
“It’s a bit like having the ‘Cliffs Notes of Cancer Care,’” Zandstra adds. “With the new Passport Plan for Health, survivors can re-enter their community better informed and empowered to take an active, informed role in caring for their health.
For more insight into the issues of survivorship, see M. D. Anderson stories on the American Association of Retired Persons (AARP) site, Journey of Cancer Survivorship.