When cancer treatment ends, many survivors aren’t clear about who will provide their care going forward and wind up feeling a bit lost as they try to navigate their way back to their normal lives. In 2006, the Institute of Medicine published a report titled, “From Cancer Patient to Cancer Survivor: Lost in Transition.” It recommended that all survivors – in conjunction with primary care providers – receive a “survivor care plan” as they leave active treatment. It recommended that each survivor receive information about their diagnosis and treatment, recommended follow-ups, preventive practices, legal protections, and availability of psychosocial services.
In the United States, The American College of Surgeon’s Commission on Cancer intends to mandate that all accredited institutions provide care plans to survivors by 2015. A number of organizations provide access to online care plan templates, so survivors can fill out the details of their diagnosis and treatment and receive a printout of recommendations. For example, LIVESTRONG™ has a web-based tool allowing survivors to generate care plans. The American Society of Clinical Oncology’s (ASCO) care plan templates integrate their recommendations to guide care. Journey Forward’s templates tailor educational materials and resources to the survivor. Our group at CancerBridges reviewed these templates and found that, while they had some great information for survivors, they are oriented to the American health system.
In Canada, although we have no similar mandate and no easily accessible web-based templates, most provinces are beginning to facilitate some form of cancer survivor care plans. In Alberta, CancerBridges was fortunate to receive money through the Canadian Partnership Against Cancer to create and deliver care plans to a pilot group of breast and head-and-neck survivors. Based on the success of the pilot, we’ve proposed to extend the delivery of care plans to all survivors across the province. (See “Good Planning,”)
These individualized care plans would be printed and handed to survivors, faxed to the family physician, and scanned into the oncology record so that each of these people, important in the care of the survivor, is on the same page at the end of active treatment.
Research demonstrates that longer survival, higher quality of life, and faster return to work are possible for cancer survivors who adhere to treatment and follow-up, commit to lifestyle changes such as an active lifestyle, healthy eating and stress reduction, receive psychosocial support, and reduce their depression levels and symptom burden.
At CancerBridges we are advocating for survivor care plans and consistent messages to survivors during and following active treatment. We hope to improve communication with care plans and to address these changes in recommended programs during this critical post-treatment phase.
In Alberta, we included templates in our care plan for breast and head-and-neck cancer survivors. We found several items that we considered to be crucial to the document.
- Diagnosis and treatment
- A brief medical history including chronic diseases and allergies
- A list of current prescribed and over-the-counter medications, vitamins, and other therapies
- Guidelines for survivors’ follow-up care, a list of next follow-up appointments and who will provide surveillance within the health system,
- List of the survivors’ family physician, surgeon, medical and radiation oncologist, nurses, social workers, psychologists, dieticians, and others, along with their locations and phone numbers
- Signs of possible recurrence and cancer spread
- Management of physical and psychosocial treatment-related side effects
- A list of the survivors’ side effects and treatment plan
- An interactive section on coping and adjustment that allows survivors to indicate their levels of distress so nurses could refer them appropriately
- Interactive section on managing health after treatment allowing survivors to prioritize goals and action plans for physical activity, diet, weight, alcohol, and smoking
- Interactive section on managing the transition: goals, and action plans for relationships and support, intimacy and sexuality, spirituality, finances, employment, and retirement
- A section to highlight other strengths and needs