This is the second in a series of two communications that addresses clarifications made by the CoC Accreditation Committee for the phase in standards in Chapter 3 of Cancer Program Standards, 2012: Ensuring Patient-Centered Care, v. 1.2.1. This communication addresses Standard 3.3 Survivorship Care Plan.
In late summer of 2013, the CoC Member Organizations conducted a readiness survey that asked CoC-accredited programs to report their implementation activities for Standards 3.1 Patient Navigation process, 3.2 Distress Screening, and 3.3 Survivorship Care Plan. The published implementation date for Standard 3.3 is January 1, 2015.
The survey results indicated that only 37 percent of responding cancer programs felt "completely confident" that their program would be able to implement Standard 3.3 by 2015; only 40 percent of respondents are addressing the entire Standard; of the 60 percent not addressing the entire standard help was needed in the following areas: information about how to evaluate survivorship care plan processes, tools that could be used for a comprehensive care plan and follow-up plan, additional information about what is required to successfully implement [the Standard], and recommendations for organizations that could help them implement the Standard. Furthermore, only 21 percent indicated that a survivorship care plan process has been developed. Finally, 63 percent believed that Standard 3.3 is the most difficult to implement, compared to Standard 3.1 and 3.2.
The Accreditation Committee is providing additional clarifications to assist with comprehension of Standard 3.3 in order to meet compliance.
1. Who is a cancer survivor?
The definition of "survivor" in the Institute of Medicine (IOM) Report, From Cancer Patient to Cancer Survivor: Lost in Transition, states that "an individual is considered a cancer survivor from the time of cancer diagnosis through the balance of his or her life, according to the National Coalition for Cancer Survivorship and the NCI Office of Cancer Survivorship".
Standard 3.3, though, is focused on the subset of survivors who are treated with curative intent, and have completed active therapy (other than long-term hormonal therapy). This includes patients with cancer from all disease sites.
Patients with metastatic disease, though survivors by some definitions, are not targeted for delivery of comprehensive care summaries and follow-up plans under Standard 3.3.
2. What data elements are to be included in the treatment summary and survivorship care plan?
The standard requires that the survivors be "provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained" however, debate remains on what data fields should populate such a document.
The American Society of Clinical Oncology (ASCO) has concluded a process, with broad-based input from multiple stakeholders, including patients, that has defined what they believe are the minimal data elements to be included in a treatment summary and survivorship care plan. It is anticipated that this document will be published shortly.
The Accreditation Committee determined that the ASCO data set will be the minimal content for the treatment summary and survivorship care plans required by Standard 3.3. This does not preclude programs from adding additional data elements.
The core set of data elements, as recommended by ASCO, are:
Contact information of the treating institutions and providers
Specific diagnosis (e.g. breast cancer), including histologic subtype (e.g. non-small cell lung cancer) when relevant
Stage of disease at diagnosis (e.g. I-III)
Surgery (yes/no). If yes,
a. Surgical procedure with location on the body
b. Date(s) of surgery (year required, month optional, day not required)
Chemotherapy (yes/no). If yes,
a. Names of systemic therapy agents administered (listing individual names rather than regimens)
b. End date(s) of chemotherapy treatment (year required, month optional, day not required)
Radiation (yes/no). If yes,
c. Anatomical area treated by radiation
d. End date(s) of radiation treatment (year required, month optional, day not required)
Ongoing toxicity or side-effects of all treatments received (including those from surgery, systemic therapy and/or radiation) at the completion of treatment. Any information concerning the likely course of recovery from these toxicities should also be covered.
For selected cancers, genetic/hereditary risk factor(s) or predisposing conditions and genetic testing results if performed
FOLLOW-UP CARE PLAN
Oncology team member contacts with location of the treatment facility [repeat if separate document]
Need for ongoing adjuvant therapy for cancer
a. Adjuvant therapy name
b. Planned duration
c. Expected side effects
Schedule of follow up related clinical visits (to be presented in table format to include who will provide the follow-up visit and how often and where this will take place)
Cancer surveillance tests for recurrence (to be presented in table format to include who is responsible for ordering/carrying out the test, the frequency of testing, and where this will take place)
Cancer screening for early detection of new primaries – to be included only if different from the general population (presented in table format to include who is responsible for carrying out, the frequency of testing, and where this will take place)
Other periodic testing and examinations (rather than outlining specific testing, the group suggested an inclusion of a general statement to "continue all standard non-cancer related health care with your primary care provider, with the following exceptions: [if there are any]")
Possible symptoms of cancer recurrence (rather than including a list of possible symptoms, the group suggested inclusion of a general statement, "Any new, unusual and/or persistent symptoms should be brought to the attention of your provider.")
A list of likely or rare but clinically significant late- and/or long-term effects that a survivor may experience based on his or her individual diagnosis and treatment if known (including symptoms that may indicate the presence of such conditions).
A list of items (e.g. emotional or mental health, parenting, work/employment, financial issues, and insurance) should be covered with standard language stating that survivors have experienced issues in these areas and that the patient should speak with his or her oncologist and/or PCP if having related concerns. Include a list of local and national resources to assist the patient obtain proper services.
A general statement emphasizing the importance of healthy diet, exercise, smoking cessation and alcohol use reduction may be included. Statements may be tailored if particularly pertinent to the individual.
3. Which health care provider(s) should gather the requisite information and which health care provider(s) should deliver the information to the patient?
The verbiage in the Standard currently states, "A survivorship care plan is prepared by the principal provider(s) who coordinated the oncology treatment for the patient with input from the patient's other care providers."
It is well-recognized that models of health care delivery vary across the nation and often within institutions. In some instances, for example, programs have established APRN-led, multidisciplinary clinics to serve their cancer survivor cohorts. Although existing guidelines do not unequivocally endorse a singular "best practice" that would fit all programs, there appears to be consensus that the treating physician(s) is central to the process.
In the context of multidisciplinary care teams it would appear reasonable that the cancer committee develop a policy of identifying a physician team member or advanced practice partner (such as an APRN member of the treatment team) who would be responsible for discussing the care plan with a patient.
An overarching goal is to allow each cancer program some flexibility in the formulation and implementation of their own policies and procedures in this regard.
4. When is standard 3.3 to be implemented?
The Accreditation Committee made the following changes to the established time frame and scope of implementation for Standard 3.3.
January 1, 2015 – Implement a pilot survivorship care plan process involving 10% of eligible patients.
January 1, 2016 – Provide survivorship care plans to 25% of eligible patients.
January 1, 2017 – Provide survivorship care plans to 50% of eligible patients.
January 1, 2018 – Provide survivorship care plans to 75% of eligible patients.
January 1, 2019 – Provide survivorship care plans to all eligible patients.
During the implementation period, cancer programs should initially concentrate on their most common disease sites, such as breast, colorectal, prostate, early-stage bronchogenic, and lymphoma.
Cancer Programs that have fully implemented the Standard by the time of their on-site visit during the 2015, 2016, 2017 survey cycle, will receive special recognition in their Performance Reports at the time of their next survey.
Questions about this and other standards are to be submitted to the CAnswer Forum.
Linda W. Ferris, PhD
Chair, Accreditation Committee
Danny Takanishi, MD, FACS
Vice Chair, Accreditation Committee
Lawrence Shulman, MD, FACS
Chair, Quality Integration Committee
Member Organization Representative, American Society of Clinical Oncology (ASCO)