Planning for Cancer Survivorship

The road to long-term health begins with a survivorship care plan.

Oncology nurse practitioner Jody Pelusi, PhD, meets each of her patients at Arizona Oncology in Sedona at the end of adjuvant treatment to complete an individualized survivorship care plan (SCP) with detailed treatment notes. During what may be one or two visits, Pelusi goes over each area listed in the Institute of Medicine (IOM) and National Research Council 2005 report, From Cancer Patient to Cancer Survivor: Lost in Transition, including the patient’s history, diagnosis, unique aspects of the cancer, pathology and total doses of chemotherapy and radiation. If applicable, she discusses genetic implications of the cancer or family history. She addresses the psychological, social, spiritual and sexual issues that may have arisen during treatment and provides resources the patient may need to move forward. It is not uncommon, she says, for patients to have questions concerning their initial diagnosis.

“They were focused on getting through treatment, and now they want to know exactly what they have been through,” Pelusi says. “During treatment, it’s too overwhelming.”

She then discusses possible long-term and late effects. If the patient received a drug with potential cardiac effects, Pelusi focuses a bit more on diet, stress management and the signs and symptoms of heart disease. If the patient hasn’t been back to work, Pelusi discusses that transition. For one young woman just finishing breast cancer treatment, it meant meeting with the whole family about where they were and assuring the woman’s husband that if his wife was expressing her feelings to the support group and not to him, it didn’t mean he didn’t count. It just meant the group members understood because they had been there. Pelusi says she talks with patients about when they will see their oncologist for follow-up and about returning to their primary care physician as they transition from having cancer to having a life.

“The patient gets a copy as well as their primary care provider,” Pelusi says. “This way, there is an organized plan on what needs to be done when, and by whom.”

Pelusi has finessed this process for about 14 years after writing a doctoral dissertation on survivorship in the late ’90s. As a nurse leader in the field of survivorship, she created her own SCP and augmented it with information from electronic medical records used at her practice. Helping about 30 patients a month complete their SCPs keeps her busy, she says, but it’s manageable. She also exemplifies the delivery of an SCP in a perfect world—while the reality for the majority of survivors diverges dramatically.

Lost in Transition made 10 recommendations that focused on increasing the quality of life for the growing number of cancer survivors. Few cancer centers adopted the recommendations, mostly because doing so would have required new staffing and education that few could afford in the midst of increasing demands and shrinking funds. Today, one particular recommendation from that report is garnering new attention with the release of Cancer Program Standards for 2012: Ensuring Patient-Centered Care from the American College of Surgeons Commission on Cancer. To receive or maintain accreditation by the group, more than 1,500 hospitals must meet these standards before the 2015 deadline, which has resulted in a scramble across the country to understand and implement SCPs.

[Timeline: Survivorship Plans Move From Recommendation to Requirement]

While cancer experts may disagree about the format, content and delivery process for SCPs, there is widespread consensus in favor of the document and the benefits it brings to survivors who need and want information about their diagnosis and long-term follow-up.

[Read "Standards of Care"]

Indeed, research shows that many patients absorbed little information about their cancer at the time they received their diagnosis. And, as the number of survivors continues to increase (estimated to be more than 18 million by 2020), the number of oncologists can’t keep pace, meaning fewer oncologists and more primary care physicians will be involved in long-term follow-up care.

It also means survivors must be their own advocates and work with their primary care providers for followup into the future—which may include monitoring for late effects from their treatment or other healthcare issues related to having had cancer.

While most oncology providers view SCPs favorably, they express concern about the feasibility of their implementation.

As the number of survivors continues to increase, the number of oncologists can’t keep pace, meaning fewer oncologists and more primary care physicians will be involved in long-term follow-up care.