Katherine Sharpe, MTS
Managing Director, Prevention and Survivorship Strategy, American Cancer Society, Atlanta, Georgia
Mandi Pratt-Chapman, MA
Associate Director, Community Programs, George Washington University Cancer Institute, Washington, DC
Ms Sharpe discussed the role of the American Cancer Society in developing survivorship guidelines and how efforts of the National Cancer Survivorship Resource Center address gaps in clinical survivorship guidelines. She reviewed the evolution of cancer survivorship and the factors that are leading to projected increases in patients with cancer and in survivors. She also reviewed studies showing both the high incidence of secondary health problems and nonmedical issues that are not being managed and the survivors’ continuing information needs that are not being met.
The Survivorship Center’s goals include improving the quality of life of cancer survivors and their caregivers and reducing morbidity and mortality related to cancer. Achieving these goals requires identifying and developing solutions for gaps in current resources, which include a lack of survivorship care guidelines for most cancers and a lack of guidance aimed at primary care providers in the community. The initiative was to use any available resources, fill the identified gaps, and remove barriers at the levels of the individual patient, healthcare system, and national policies. Work groups were set up based on policy, advocacy, and quality-of-life issues, among others. The lack of clinical survivorship care guidelines was a significant gap identified at the healthcare systems level, and the recommendations included developing survivorship care guidelines for clinical and psychosocial needs. Specific gaps included:
- Few existing follow-up care guidelines for most cancers, especially for the US-based healthcare system
- When available, follow-up care is embedded in large treatment guidelines and mostly addresses surveillance
- Lack of comprehensive, patient-centered guidelines beyond treatment
- Little, if any, cancer care guidance is geared to primary care providers
- Lack of a definitive model for care delivery
- Difficulties with reimbursement of survivorship follow- up care (eg, survivorship care plan)
Ms Sharpe presented the steps involved in guideline development, with primary care providers as the target audience. The prephase in - volved gathering recommendations and was followed by phase 1, drafting clinical care grids of common issues and recommended follow-up based on clinical provider experience. Phase 1A involved development of psychosocial guidance. This has led to a more robust development process.
Ms Pratt-Chapman continued the discussion by describing where her institution is in the development process. Guidelines are tested in draft form, then reviewed by experts and refined, after which they are sent to the American Cancer Society for review. The guidelines will be going through several more rounds of review and refinement in line with guideline development processes. She offered a “sneak peek” at some of the breast cancer guidelines, which are still in development, noting that the navigator role resides to a great extent in the care coordination and practice implication section of the guidelines. She also showed a summary of surveillance activities recommended for primary care providers. Ms Pratt-Chapman’s group is also focusing on provider education, because without that, dissemination of the guidelines will not be effective. Education will include an online training workbook for guidelines, webinars about survivorship, and initiatives concerning healthcare systems and policy. Rollout will begin next year. There are also patient and family education programs planned.
Ms Pratt-Chapman observed that although the end users of the guidelines are primary care physicians, navigators provide the link between practitioners and patients. She presented the content outline for guidelines manuscripts that will be published and a template for a guidelines summary. She hopes cancer survivors will be educated to request a treatment summary and survivorship care plan. Patients should also receive routine counseling on general health promotion as well as specific cancer screening. Ms Pratt-Chapman described a conceptual model of survivorship navigation revolving around patient quality of life and how the navigator is an expert on the patient, taking into account factors internal and external to the patient. This allows the navigator to help remove barriers to care, improve the self-efficacy of the survivor, and provide a liaison to the healthcare team.
Resources include:
- The Survivorship Center at www.cancer.org/survivorshipcenter
- Life After Treatment Guide at www.cancer.org/survivorshipguide
- Prescription for Cancer Information at www.cancer.org/survivorshipprescription
- Navigator Training Webinar and Patient Resources Compendium at www.gwumc.edu/gwci/survivorship.html
Other resources are or will be available from the Survivorship Center Web site.
Ms Shockney said that some survivors have no relation with their primary care providers, so navigators must foster it or help patients find a new provider with whom they can develop a trusting relationship. She pointed out that over the course of cancer from diagnosis through treatment, patients’ tolerance for side effects change, and this should be studied. Patients don’t necessarily understand the long-term effects of treatment when they are diagnosed.
A navigator said he has difficulty working with some primary care providers. The Survivorship Center is involving primary care physicians in the guideline process to address their needs, as well as how to implement solutions and what tools might be needed, eg, integration with electronic medical records, or apps. The American Cancer Society also has a primary care advisory committee, and primary care will be represented in the expert review of the guidelines.
Another navigator said that the primary care physicians in her setting are aware of survivorship plans but do not want to own them. Ms Pratt-Chapman thought they might want to care for these patients but not feel empowered to do so. At her institution, there is an educational program to help implement this care. Ms Sharpe added that a lot of survivorship care—lifestyle issues, managing comorbidities— should occur in the primary care setting, even if that aspect of care is not part of a formal guideline. Ms Sharpe’s group is trying to establish the appropriate time for transition, and what care is best delivered by the oncologist and what by the primary care physician. Ms Gentry says she sees this in her community setting, and navigators need to train patients about which provider should see the patient depending on current symptoms, eg, to see the primary care physician if the patient has the flu.
Ms Shockney divided primary care physicians into 3 groups: the oldest ones who refuse to care for patients with cancer once they are diagnosed, the “adolescents” who are planning to retire and may or may not provide care for survivors, and the younger physicians who will treat cancer as a chronic disease. Patients also need to be trained for self-management at diagnosis.
