Most navigators are familiar with the large national patient advocacy organizations that provide various resources for patients that can expedite our ability to reduce barriers impeding diagnosis and treatment, but [ Read More ]
April 2013 VOL 4, NO 2
Survivorship Plans: The Devil Is in the Details
Although planning for survivorship care is recognized as an important part of the continuum of cancer care, end-of-treatment summaries (TSs) and survivorship care plans (SCPs) are not universally provided to cancer patients, even at centers of excellence. That situation is about to change over the next few years, however, because the Commission on Cancer (CoC) says that these plans will be mandatory by 2015.
The CoC recommends that the plan be given to the patient on completion of treatment. It should include a record of the care received, important disease characteristics, and a written follow-up plan. TSs and SCPs should facilitate shared care coordination between oncology specialists and primary care providers (PCPs).
The details of SCPs still need to be worked out, according to Deborah K. Mayer, PhD, RN, AOCN, FAAN, associate professor at UNC-Chapel Hill School of Nursing in North Carolina. Speaking at the 38th Annual Congress of the Oncology Nursing Society, Mayer said, “The development and implementation of survivorship plans cannot be done by nurses alone. It requires teamwork.”
The end of treatment is the best opportunity for providing an SCP, she said. “At that time, I map out what is next for the patient. Often I have to review the treatment they received and why they got it. After the treatment is over, they are hit with the reality and may seem depressed. I use this as a transition visit,” she said.
Mayer advised making a special appointment to present the treatment summary and survivorship plan, with a written copy for the patient and spouse or caregiver. One must also make sure that the PCP receives the summary and the plan. It does not matter which template is used for the summary, but the information should be simple and clear to both the patient and the PCP, especially avoiding “oncospeak” with abbreviations that others may not understand, Mayer continued.
“Studies suggest that patients only retain about 10% of what you tell them at visits, so it is important to have a written plan about what treatments they have had and what will happen next, as well as the order of what will happen next,” she explained.
Even though randomized controlled trials have yet to show significantly improved outcomes with survivorship plans, the results of smaller studies suggest that end-of- treatment visits with SCPs lead to high patient satisfaction, reduced patient anxiety/unmet needs, and improved preparedness to manage healthcare. PCPs like them too, she said.
“Survivorship planning makes good common and clinical sense,” Mayer said.
The treatment summary and SCP should be simplified and should include the diagnosis, the basics of treatment received, and the potential side effects and complications. “I would discourage you from making the plan longer and more complex than it needs to be,” she told listeners.
Templates are available from several organizations, including the American Society of Clinical Oncology and Journey Forward, but these templates may be too complicated or long for practical utility, she continued. “The template should be patient- and primary care provider-friendly and no longer than 2 pages for the treatment summary if possible,” Mayer added.
Overly detailed technical information is not helpful, she said. In the template Mayer developed for breast cancer patients, she spells out relevant medical terms and explains what they mean; for example, that “ER-positive” means that the tumor is sensitive to hormones.
Mayer predicted that, as experience is gained with SCPs, templates for survivorship plans will eventually become more simplified and standardized and integrated into electronic health records.
“Surgical oncologists and radiation oncologists typically provide summary notes at the end of treatment, but medical oncologists rarely do this. If they did, your survivorship care plan would take about 15 minutes to prepare,” she said.
Taking care of a cancer patient after treatment can become a bit of a turf war between the oncologist and the PCP. “Tumor groups at your hospital need to decide when survivors should move on to the PCP,” she said. “We need to prevent the gap between oncology and primary care from developing.”
Mayer suggested up-front partnering with the PCP when the patient begins treatment and when he or she ends it.
“This could avoid the need for specialists to treat hypertension or other common conditions that the PCP can manage,” she explained. “All forms should include the name and contact information of the PCP, and the nurse should make sure that the PCP gets the notes on the patient.”
Survivorship plans for advanced metastatic cancer patients are a neglected topic thus far. The CoC has not provided any recommendations for this group of patients. “The needs of the advanced cancer patient will be different,” she predicted.
However, at some centers hospice and palliative care specialists are called in earlier in the course of the disease. “We can facilitate those discussions, and this could affect their planning,” she said.
Remaining issues regarding implementation of SCPs that need to be addressed in each practice setting are:
- Which patients will receive a treatment summary and an SCP?
- When will they receive it?
- Who will develop it?
- Who will deliver it?
- Who will get a copy of it?
- Where will the plan be filed, how will it be updated, how will it be tracked?
Remaining challenges include implementation issues, educating patients and providers about survivorship care, and evaluating effectiveness.
“Many are preparing to meet the CoC 2015 standard and will need to address these challenges,” Mayer noted.