Journey Forward is a program created by a collaboration between the National Coalition for Cancer Survivorship, the University of California at Los Angeles Cancer Survivorship Center, WellPoint, Inc., and Genentech Inc., with the common goal of improving survivorship care. The Journey Forward plan has a simple treatment summary format and guidelines for monitoring future care based on the ASCO treatment guidelines.
Passport for Care is an Internet-based care plan in development by a group from the Texas Children’s Hospital and Baylor College of Medicine. It uses the Children’s Oncology Group guidelines for the care of pediatric cancer survivors. Passport for Care is currently undergoing clinical application evaluation.
Implementation of the survivorship care plan
Successful commitment to providing survivorship care plans requires a great many steps. The first step is to select an available template or create a unique design that fits with workload and institutional medical record systems. The following questions will need consideration: How will the treatment data be collected and from where? Who will be responsible for collecting and entering the data? What resources will be needed? What will be the services included in the follow-up care? What guidelines will be followed for surveillance? What patient groups will be included? When is the most appropriate time to review the survivorship care plan with patients––at the end of treatment or some time later? Should there be a formal transition visit? Will the care plan be stored electronically, and will it be sent to other providers?
All of these decisions necessarily rely on multidisciplinary collaboration. In view of the identified barriers and considerable variation in practice settings and clinical resources, simplification can prove to be an effective strategy for implementation. The short templates such as those developed by ASCO provide a simple, quick approach to the care plan while covering the core elements (see Figure 2, “ASCO Breast Cancer Survivorship Care Plan”). A more comprehensive plan that includes comorbidities and specialty care requirements is more resource-intensive, but is especially important for survivors who have undergone complex treatments and for childhood cancer survivors.
The following is an example of one institution’s experience with implementation of a survivorship care plan: In 2005, Memorial Sloan-Kettering Cancer Center initiated nurse practitioner–led survivorship clinics and the provision of a care plan was incorporated into the comprehensive set of services. Plans for follow-up surveillance were developed based on the consensus of each disease-specific service or were based on published guidelines, such as the colorectal cancer follow-up guidelines from NCCN, where they exist. The survivorship nurse practitioners (NPs) incorporate these guidelines into a plan for each survivor, along with cancer screening guidelines and general health recommendations by age.
Evidence-based recommendations and resources for dietary modifications and physical activity are included. Individualized needs are also identified in the plan, particularly for patients with late effects and comorbidities, with clear identification of the needs attended to by the NP vs the primary care or other specialty providers. The care plan is reviewed with the patient and family at the first survivorship visit and a copy is provided to the patient. In addition, the NP sends a copy of the care plan and a letter summarizing the visit to the primary care provider and other providers identified by the patient. The care plan then becomes part of the survivor’s medical record and can be updated as needed. Current initiatives are under way to assess patient and provider satisfaction with the care plan.
The Nurse’s role in survivorship care planning
Nurses are key participants in the successful integration of survivorship as a distinct phase in the cancer care trajectory proposed by the Institute of Medicine report. Among the defining elements of oncology nursing are the provision of guidance and support to patients during cancer treatment. Oncology nurses routinely provide patients with a plan to ensure the best possible treatment outcomes with a focus on prevention and management strategies for safety, comfort, and control over the quality of their lives. As patients complete cancer treatment, nurses can extend their role by preparing patients for a transition from the safety net of their oncology care providers and for achieving a lifetime of good health.
Nurses can participate in the formal provision of care plans in a variety of ways, depending on institutional resources and support. Again, multidisciplinary collaboration on development of surveillance guidelines and screening schedules is essential. Support for the time to prepare and review the plan with patients also is necessary for sustaining such an initiative.