White Paper to CoC regarding Standard 3.3 Survivorship Care Plan
The Connecticut Cancer Partnership is the coalition recognized by the US Centers for Disease Control and Prevention (CDC) to implement the concepts of comprehensive cancer control, through collaborative planning and prioritized activities with its member organizations. It has developed a series of multi-year state cancer plans. The Partnership has membership representing over 150 organizations in Connecticut with cancer control as their common interest.
We are at the mid-point of the 2014 – 2017 Plan, which has prioritized adoption of survivorship care plans as a key objective. The Partnership’s Survivorship Committee is instrumental in the implementation strategies addressing this objective. The Survivorship Committee (see attached membership list with organizational affiliations) which comprises representatives of most of the cancer centers in the state, has carried out successful programs in the area of survivorship. Funding was directed to a large cancer center for programming designed to reduce disparities in survivorship care and a large survivorship conference was held, featuring nationally recognized speakers and drawing over 150 cancer professionals to address the topic. Activities are now underway to work with a partner organization that serves the underinsured to promote the use of survivorship care plans.
It has become clear that the cancer centers represented by the Survivorship Committee members are struggling to ensure compliance and meet the SCP standard in their programs. Informal surveys and focus group meetings of these representatives have led the Connecticut Cancer Partnership to make a decision to address this issue through this White Paper, in which we hope to summarize the obstacles experienced by cancer centers, and to suggest some solutions. We are working with Connecticut’s State Liaison Physician, who is a member of the Board of the Connecticut Cancer Partnership, as well as the medical director of Adult Survivorship at the Yale Cancer Center Survivorship Clinic, who is also a member of the Board and Co-Chair of the Survivorship Committee.
While there is general consensus that SCPs lead to some improvement in patient satisfaction, the lack of an evidence base for measurably improved outcomes is a drawback in universal adoption of a gold standard. Cancer centers, large or small, urban or rural, well-resourced or struggling, all express frustration in the time and resource demands required of a survivorship care plan development process. There is little agreement in approach on who should create the plan, how it should be delivered to the patient or primary care practitioner, what the format should be, how the electronic medical record could facilitate the process, when the plan should be created, how multidisciplinary care teams should work together to combine the treatment modalities into one summary, or how survivorship care should be delivered. Striking differences emerged in the recent survey of 20 Connecticut hospital cancer programs. For instance, in 20 hospitals, there were five different types of professionals involved in the plan creation. Fifteen respondents registered 25 separate comments describing frustrations mainly relating to data collection both with and without EMR, and the amount of time dedicated to these activities. Of the five respondents who did not identify frustrations, three were too early in establishment of a process to have had experience to comment on.
Cancer programs may choose to focus on survivors of one type of cancer at the beginning of their SCP development process, recognizing their ability to capture all patients who complete one type of therapy, for example radiation for breast cancer. CoC clarification language indicates that for patients who also received surgical and medical treatment, the principal provider who coordinated the oncology treatment should prepare the SCP. The language suggests that a reasonable approach would be for the cancer committee to have a policy to identify who would present the plan to the patient.
The intent of the CoC as stated in the clarification article is that given that models of care differ, there should be flexibility in the formulation and implementation of the SCP process.
Even so, cancer center clinicians have expressed anxiety about the pressure they feel they are under from administrators who are focusing on attaining compliance, while they themselves are trying to do what works best for patients wrapping up treatment.
Questions persist about how the percentage requirement will be calculated, over what period of time. The September 2014 CoC clarification (and now codified in the January 2016 edition of the CoC standards) states that this standard is to be focused on the subset of survivors, with any type of cancer, who are treated with curative intent and have finished active treatment. Patients with metastatic disease are not targeted for delivery of SCPs.
- Are patients who receive a radiation oncology SCP to be counted in the numerator?
- Is the numerator the number of patients who received care plans in a set period, for example, one year?
- Is the denominator the number of patients diagnosed with non-metastatic cancer in that same calendar year minus those still receiving treatments? (Clearly that formula would capture patients from two different cohorts.)
September 2014 clarification language from CoC states also provides the following implementation time frame.
- Jan. 1, 2016, provide SCPs to 25% of eligible patients (these records would be from 2015)
- Jan. 1, 2017, (records would be from 2016)—provide SCPs to 50% of eligible patients
- Jan. 1, 2018, 75%
- Jan. 1, 2019, 100%
- Centers should start with most common disease sites: breast, colorectal, prostate, early stage bronchogenic, lymphoma
To attain these goals, the Survivorship Committee offers the following suggestions to assist cancer programs in meeting the standard.
We feel that the CoC is in a position to help cancer centers achieve the original and laudable goals as expressed by the Institute of Medicine report in 2005, From Cancer Patient to Cancer Survivor: Lost in Transition. Survivorship care plans were envisioned “to address unmet needs to educate survivors, improve communications between oncologists and primary care providers, and to facilitate the coordination of care after cancer treatment has ended.” The effect that Standard 3.3 can have on the work of cancer centers can be salutary. We suggest the following may help to ensure the cancer centers meet certification and maintain accreditation, while not undergoing undue, time -consuming and unproductive efforts:
- Communications from CoC and NAPBC: Case studies/best practices reflecting positive progress towards standard compliance from recently surveyed institutions.
- Dissemination of templates or protocols specific to certain situations: cancer center type, cancer type by site or stage, electronic medical record or manual formats.
- Educational materials for personnel involved in the creation of SCPs, specific to their roles. For example, educational materials geared specifically to tumor registrars, medical records staff, navigators, nurses, or MDs or APRNs.