This past June 18-20, I had the opportunity to attend the 7th Biennial Cancer Survivorship Research Conference: Advancing Survivorship through Multilevel Collaborations in Atlanta, GA, as part of the Survivor Advocate Program. This conference brought together researchers, clinicians, cancer survivors, advocates, program coordinators, and public health experts to discuss current cancer survivorship research. The conference also highlighted the role of collaboration between and across individuals and agencies to improve cancer survivorship outcomes and was co-sponsored by the American Cancer Society, LIVESTRONG Foundation, National Cancer Institute’s Office of Cancer Survivorship, and Centers for Disease Control and Prevention.
The Survivor Advocate Program provided travel scholarships for 20 advocates to attend the conference to learn about moving cancer survivorship advances from early-stage research to survivor care, interact with other advocate leaders and researchers, and develop tools to educate communities about key survivorship issues. This group included cancer survivors and advocates, for example there were survivors of breast cancer, ovarian cancer, mesothelioma and Non-Hodgkin’s Lymphoma. Additionally, program coordinators, oncology nurse navigators and parents of childhood cancer survivors were also represented. At a pre-meeting workshop program members had the opportunity to meet experts in cancer survivorship research during a speed networking session. These included experts in areas such as health disparities, caregiving, palliative medicine, cancer prevention and control, patient navigation, and patient reported outcomes.
Survivorship Care Plans
With approximately 13.4 million cancer survivors in the United States, understanding and planning for cancer survivorship is critical. A major focus during one plenary session was on implementation of survivorship care plans. In 2005 the Institute of Medicine (IOM) issued a report, From Cancer Patient to Cancer Survivor: Lost in Translation, which recommended that all patients completing treatment should receive a survivorship care plan to provide guidelines for maintaining their health life after acute treatment. In addition to the IOM recommendations, the American College of Surgeons Commission on Cancer released new accreditation standards for cancer centers requiring the facilities to provide survivorship care plans to all patients by 2015. Despite these recommendations and requirements, many survivors don’t receive a plan currently. Additionally, there is no consensus on what should be part of a survivorship care plan. However, there are four main survivorship guidelines targeted to different audiences that were discussed during a plenary session:
- LIVESTRONG Foundation: Essential Elements of Survivorship Care
- The National Comprehensive Cancer Network (NCCN) guidelines are designed for health professionals and cover: anxiety and depression, cognitive function, exercise, fatigue, immunizations and infections, pain, sexual function, and sleep disorders.
- The American Society of Clinical oncology (ASCO) recently published the first of its Survivorship Guidelines which cover anxiety and depression, neuropathy, fatigue and fertility preservation and are designed for medical professionals.
- The American Cancer Society (ACS) has survivorship guidelines intended for primary care physicians. The first guidelines on prostate cancer are now available here. Guidelines for other cancer will be developed in the future.
Panelists noted lack of awareness and training as barriers to providing survivorship care, noting that many doctors don’t have training on survivorship care. Additionally, one survey found that 89 percent of primary care physicians had never heard of survivorship care plans. Speakers suggested empowering the patient to ask for a survivorship care plan or use apps on mobile devices like “My Cancer Plan” They also recommended designating a member of the medical professional team to take responsibility for the survivorship care plan, potentially the last person to see the patient during treatment.
Caring for the Caregiver
During the opening plenary session, Ellen Stovall, Senior Health Policy Advisor, National Coalition for Cancer Survivorship said, “When someone in the family has cancer, the whole family has cancer.” As a cancer diagnosis affects those other than the patient, it’s important to examine the role of caregivers. In the breakout session titled “Caring for the Caregiver” panelists discussed caregiver-specific research findings. One-third of households in the United States have a caregiver. This person is typically a female caregiver looking after a parent. Often cancer caregivers are also cancer survivors. The National Alliance for Caregivers and AARP, estimate that the third most common reason for caregiving is a cancer diagnosis, behind aging and dementia in first and second, respectively. There are four kinds of caregivers: those who are a caregiver now, those who have been a caregiver, those will be a caregiver, and those who will need a caregiver, according to Shelby Langer, Research Associate Professor, University of Washington, who said during the session that nearly everyone is impacted by caregiving. Another speaker, Sharon Manne, resident member, Rutgers University, examined caregiving among spouses and found that if either the patient or the caregiver holds back communication from their spouse the result is decreased intimacy and decreased relationship satisfaction. Additionally, Allison Applebaum, Caregiver Clinic Director, Memorial Sloan Kettering Cancer Center, spoke about how the fear of recurrence, also known as scanxiety is equal if not greater among caregivers than patients.
Smoking Cessation and Cancer
Another breakout session focused on smoking and cancer. In this session titled “A 360 degree view: Examining cancer survivors and smoking” panelists shared that 30% of all cancer deaths are due to tobacco. Professor and Chair of the Department of Behavioral Science, at MD Anderson Cancer Center Ellen Gritz presented current smoking statistics. For example, approximately 70 percent of smokers say they want to quit although less than 6 percent of all smokers quit each year and 42 percent have attempted to quit in the last 12 months. Up to 30-50 percent of patients smoking when diagnosed with cancer either do not quit or relapse despite the fact that smoking has a negative impact on cancer treatment and outcomes. According to Robert Schnoll, Research Associate Professor of Psychology at the University of Pennsylvania, clinicians ask their patients whether they smoke, but don’t consistently provide smoking cessation treatment, information or referrals. Vani Nath Simmons, Associate Member at Moffitt Cancer Center, discussed video interventions and stressed that while providers often emphasize long-term risks, patients want a balance of hearing about the risks of smoking and the benefits of cessation.