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.
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.
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.
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.
Consider that only 43 percent of National Cancer Institute-designated cancer centers deliver SCPs to their breast or colorectal cancer survivors, the two areas used for a study reported in the March/April 2012 issue of CA: A Cancer Journal for Clinicians. Of that 43 percent, none had plans that included all of the components recommended by the IOM. Moreover, a survey of 399 members of the Oncology Nursing Society showed only 27 percent were employed in a setting that had a formal, structured cancer survivorship program.
NCI-designated cancer centers are considered by many to set the standard for care, but treat only around 15 percent of cancer patients in the U.S., which leaves the remaining 85 percent of patients to be treated at community cancer centers. Some patients may get care at the level offered by nurses such as Pelusi, others may get nothing and still others may be referred to some sort of survivorship program.
Take Suzan Bruce, a Dallas school administrator who received a diagnosis of stage 3C breast cancer in 2010. At her last meeting with her oncologist, when treatment was over, Bruce asked what was next. “Well, I’ll see you in three months,” the doctor replied. Bruce was clearly panicked, so the doctor called in a social worker, who told the 48-year-old mother about a newly formed breast cancer support group and upcoming speakers on end-of-life care and Medicare coverage. “Great,” Bruce said, sarcastically. “Just what I need.”
She ended treatment without a real sense of her next step. Except for good online medical records that allowed her to see what drugs she had taken, there was no care plan. She had no idea what those drugs meant for her future, no idea how to deal with the fact that she carried a BRCA2 mutation, and no one to help her figure out how to restart her life.
Since then she has paid out of pocket for a consultation with an integrative oncologist at another cancer center across town, as well as a therapist to help her cope with her fears of recurrence.
Public awareness and scholarly interest has drawn attention to the needs of survivors from organizations such as the Livestrong Foundation and American Society of Clinical Oncology (ASCO), all of which developed some form of SCP and made it available to survivors and professionals.
Add to these the SCPs developed individually by nurses and cancer centers and the result is little consistency in what survivors are getting. In May 2011, Lillie Shockney, RN, administrative director of Johns Hopkins cancer survivorship programs in Baltimore, began providing what she calls “transitional consultations” for a nurse practitioner and patients two to four months after completion of acute treatment.
“The nurse practitioner compiles the treatment summary and creates the care plan,” Shockney says. “The patient is assessed for distress, and they talk about it, ‘Tell me your story.’”
In many instances, women who are on hormone treatment need education on why they should finish it, Shockney says “We have patients complete a side effects chart,” she says. “Each potential side effect is listed, including psychosocial stress, and the patient grades the severity she is experiencing with each side effect. Those with higher scores are given priority discussion time to develop ways to relieve that side effect.”
Shockney says Johns Hopkins began using the ASCO survivorship care plan but then created its own breast cancer SCP. An important component in the effectiveness and goal of an SCP is working with both patient and oncologist on separating surveillance into cancer-appropriate visits and those that should be handled by the patient’s primary care physician.
In addition to an SCP, Johns Hopkins created three tumor-specific survivorship clinics and is transitioning survivors for follow-up, a hard sell, she says, for both patients and oncologists, because the doctors form a strong bond with patients. “I had one physician who put a patient with a urinary tract infection on an antibiotic, and three years out from treatment the patient was still calling the oncologist for the same thing,” she says. “This was enabling behavior that had to stop.”
Barriers to implementing SCPs include lack of physicians and staff for time-consuming data collection, inadequate systems such as electronic medical records not yet in place, insufficient funding or reimbursement for work that generates no revenue and inadequate training about survivorship issues. In addition, time billed for working on SCPs must be taken into consideration.
In the meantime, patients must gather the information they need for their own SCP and choose a primary care physician who will follow their health care with an understanding of their cancer history.
In this article, there is information to help survivors create their own SCPs. At their next oncology appointment, patients should ask for missing information or explanations of anything that is not clearly understood. They may have to ask for copies of pathology reports and treatment drugs and dosages. Patients should ask medical personnel to translate medical terminology into understandable language. After the SCP is completed, patients may want to make copies and have them available for other healthcare providers and family members.
As time progresses, survivors should ask for updates at followup oncology appointments. If their cancer center implements its own SCP, they should ask for a copy. Awareness of long-term and late effects of treatment is evolving, and survivors must help their healthcare team understand how cancer treatment may impact their health for the rest of their lives. Guidelines for surveillance and monitoring for cancer recurrence vary depending on cancer type and stage, and should be specified clearly.
In addition, survivors should:
> Be sure their family members understand any genetic implications cancer has in their lives.
> Ask if any new information should be added, especially concerning late effects of the drugs or radiation that were part of treatment.
> Ask if any new information is available that may change plans for surveillance or prevention of cancer recurrence.