Child and Adolescent Survivorship Transition (CAST) Model - A Children’s Cancer Cause Survivorship Proposal
Overview
Authorize the Center for Medicare and Medicaid Innovation Center to create a new demonstration program under the authority of section 1115A of the Social Security Act – the Child and Adolescent Survivorship Transition CAST Model (CAST). The model is a local service delivery and state payment model for children and young adults up to age 211 diagnosed with cancer who are in the survivorship phase of their treatment, for children covered by Medicaid through the testing of models that create a survivorship plan for these individuals and disseminate the plan to individuals, families and their providers. The model will offer states and local providers support to develop and implement different survivorship care planning models.
Why develop a model?
Americans are living longer with cancer, resulting in larger numbers of cancer survivors in the United States. Pediatric survivors of cancer are uniquely affected because of long-term and late effects of cancer treatment. Today there are over 500,000 childhood cancer survivors in the U.S. Over 80% of childhood cancer survivors will have at least one severe, disabling, or life-threatening late effect of their disease or treatment by the time they reach 45 years of age. Over one third of these individuals will suffer severe and chronic health impairments.
Despite the increase in survivors, however primary care physicians (pediatricians, internists, family medicine physicians, osteopaths, etc.) often are not familiar with the consequences of cancer and its treatment. Survivors seldom receive explicit guidance – a survivorship care plan – from oncologists on how to treat cancer survivors. Patients are generally not educated about ongoing and future needs and thus lack the information to anticipate and manage their survivorship care. Often there is no formal transition from the oncologist to a primary care physician, and there is minimal care coordination where follow up occurs. Establishing best practices in caring for patients with a history of cancer will minimize wide variation in care. Finally, lack of reimbursement for the transition from active cancer care to survivorship care is a major barrier to care delivery. Reimbursement limits exist around provider communications, treatment plan development, and information transfers to the primary care setting.
The proposed model would establish survivorship care planning delivered both in a hand-off from an oncologist and over a 6-month period, delivered in both a survivorship clinic and a primary care setting. Plans will summarize information critical to the individual's long-term care, such as the cancer diagnosis, treatment, and potential consequences; the timing and content of follow-up visits; tips on maintaining a healthy lifestyle and preventing recurrent or new cancers; and the availability of psychological and support services.
What are the goals of the model?
The goals of the CAST model are to educate childhood cancer survivors and their families, primary care providers and others on survivors’ unique and specific clinical and non-clinical needs at the time their immediate cancer care ends. The CAST model creates a six-month survivorship care plan benefit with payment to providers dependent on where the patient is treated. The model will provide survivors with a care transition visit, which includes survivorship care planning, a concrete plan to follow and the tools to receive appropriate care in the survivorship care phase using a Center for Medicare and Medicaid Innovation (CMMI) demonstration approach.
The CAST Model will support providers to conduct identification and treatment of pediatric survivors across care settings. Through the APM developed through this model, providers will use a shared care approach which will allot payments where the patients are during a given 6-month period following the end of active cancer care.
The model will attempt to address the current gaps in care for pediatric cancer survivors. It will:
Start survivorship care planning once active cancer treatment ends and encourage communication between the oncologist, pediatrician and primary care provider.
Develop a survivorship care plan document that is helpful and accessible to both the patient and provider.
Develop and reimburse a survivorship care planning/transition/handoff visit during which primary care providers can review the plan and update the record about cancer history and recommended follow up care.
Educate patients, families, and providers regarding the unique needs of survivors.
Create a standard of care where all childhood cancer patients receive a transition care visit analogous to a hospital discharge summary, which leads to a post admission primary care visit.
Determine whether different levels of survivorship care planning are appropriate for patients based on stratification of risk of severity of late effects following active cancer treatment.
Utilize electronic health records to assist the survivorship care transition process.
Areas of Special Interest/Barriers
All model participants will address areas of special interest to establishing comprehensive survivorship models. These areas represent components which are considered burdensome, present a barrier to entry, are costly or vary by region. Therefore, CMS will consider models favorably that address these issues.
Staff capacity. Models will explore whether adequately providing survivorship care to childhood cancer patients requires a team of providers such as nurses, physician assistants, patient navigators, or scribes.
EHR. Models must utilize electronic health care records including how to populate treatment plans and roadmaps early.
Methods to obtain medical records from different providers and institutions.
Legal issues involving confidentiality.
What are the key elements of the survivorship care model?
Every childhood cancer survivor should have a comprehensive care summary and follow-up plan once they complete their primary cancer care. The plan should specify their treatment history and address various individual post-treatment needs to improve their health and quality of life. The model will include reference to and incorporation of, as appropriate, the Children’s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers as a resource for healthcare professionals as well as the Passport for Care model. CAST models must develop and incorporate an easily understood version of the care summary for patients and families.
Record of Care
Upon discharge from active cancer treatment, patients should be given a record of their disease history and treatment regimens. The pilot would use the Children’s Oncology Group record – the Summary of Cancer Treatment (Comprehensive). The record will go to both the patient and their primary care provider.
This should include, at a minimum:
Diagnostic tests performed and results.
Tumor characteristics (e.g., site(s), stage and grade, hormonal status, genomic characterization, biomarker data).
Dates of treatment initiation and completion.
Surgery, chemotherapy, radiotherapy, transplant, hormonal therapy, gene or other therapies provided, including agents used, treatment protocols identifying number and title of clinical trials (if any), indicators of treatment responses and toxicities.
Psychosocial, nutritional, and other supportive services provided.
Full contact information on treating institutions and key individual providers.
Identification of a key point of contact and coordinator of continuing care.
Survivorship Care Plan Components
Upon completion of cancer treatment, every childhood cancer patient and their primary health care provider should receive a written follow-up survivorship care plan incorporating available evidence-based standards of care. The discharge plan would include information about cancer type, treatment, and long term/late effects. The survivorship care plan differs from the patient’s medical record. This should include, at a minimum:
The likely course of recovery from treatment toxicities, as well as need for ongoing health maintenance
A description of recommended surveillance, cancer screening and other periodic testing and examinations, and the schedule on which they should be performed (and who should provide them).
Information on possible late and long-term effects and symptoms of treatment exposure • Information on possible signs of cancer recurrence and second primary tumors.
Information on the possible effects of cancer on growth and development, including sexual maturation and functioning, marital/partner relationships, school or employment, and fertility and parenting, and the potential need for psychosocial support.
Specific recommendations for healthy behaviors (e.g., diet, exercise, healthy weight, sunscreen use, virus protection, smoking cessation, osteoporosis prevention).
Referrals to specific follow-up care providers, support groups, and/or the patient’s primary care provider
Allow follow up care the flexibility to cover surveillance modalities that are needed (but atypical) for childhood cancer survivorship such as diagnostic testing.
A listing of cancer-related resources and information (Internet-based sources and telephone listings for major cancer support organizations).
Development of Record of Care
The models must describe who completes the treatment plan – nurses, nurse practitioners, physician assistants, scribes etc.
Benefit Periods
The childhood cancer survivorship benefit or transition period would run for six months. During this time, the patient would receive a transition visit, plan of care, care dissemination to the patient and/or family and physician or clinic. Providers would participate in a shared care model which would allow for payment for services both to the referring oncologist and primary care provider or clinic. The payments would follow the patient.
Electronic Portability and Operability
For purposes of electronic health records, models must meet the requirements of a Medicaid program for use of certified electronic health record technology (CEHRT). This requirement will benefit the survivorship model by better supporting the interoperable exchange of health information. Demonstrating EHR capacity is a minimal requirement of the model. Survivorship care summaries must be electronic and portable. Specifically, CMS will favor models that can use EHRs to more easily pull information from the chart and summarize the data. Web portal-based models are of specific interest.
Models must meet confidentiality requirements under HIPPA.
Payment Models
Under the model, physician practices will enter into payment arrangements that include financial and performance accountability for 6-month episodes of care. The two forms of payment include a per-beneficiary payment for the duration of the episode and the potential for a performance-based payment for episodes of care. The payment assists participating practices in effectively managing and coordinating care for oncology patients during the survivorship episodes of care, while the potential for performance-based payment incentivizes practices to lower the total cost of care and improve care for beneficiaries during treatment episodes. Models will evaluate whether different payments are required for the summary of past treatments versus the development of the survivorship care plan for the future. The goals of the APM are to 1) to improve outcomes, such as decreased costs and improved quality of life; 2) ensure long-term model sustainability; and 3) develop a mechanism to reimburse a survivorship transition visit.
Measure Development
Public and private entities have addressed cancer treatment rather than survivorship through measure development. Insurers and health care delivery systems do not appear to be measuring cancer survivorship quality. The program will identify and develop clinically relevant measures of cancer survivorship and quality of life and function as well as measures of survivors’ care experiences. The program will include quality measures and outcomes, such as health care utilization and quality of life metrics. Functional outcomes will be important.
Data
Basic data about childhood cancer survivorship is lacking. As appropriate, the model would gather data about the number of childhood cancer survivors in each demonstration program region. CMS would work with other entities such as CDC on broader data assembling.
How will funding be awarded?
CMS would award cooperative agreements to eligible entities (states) to support care redesign efforts within their state. The new funding will cover upfront personnel, infrastructure, and training costs, would help eligible entities provide high-quality, person-and family-centered care to childhood and adolescent cancer survivors.
Who will participate in the model?
The key participants of the CAST model will be the state Medicaid agency. State Medicaid agencies will provide population-level data for the geographic service area, support development of information sharing arrangements and infrastructure, work to align support for the model across entities and help to develop the survivorship APM. CMS will award up to 8 grants to States.
One of the grantees would be the Passport for Care. The Passport for Care is widely used with childhood cancer treatment survivors across the nation and especially in Texas. The survivorship model is run through a late effect algorithm created by Children’s Oncology Group. Based on the individual’s history, Passport for Care indicates in user friendly terminology potential late-effects patients may experience, and treatments or tests they should undergo. Patients can share their information both digitally and through a hard copy. Patients also have the option to allow their information to be entered in a database for future research. The clinician side of the Passport for Care provides explanations to the comprehensive guidelines for their patient’s survivorship care, the potential side effects to those treatments, evaluations that should be performed, and the list of health care providers who have treated their patient. Of note, the Passport for Care provides clinical and non-clinical information including local psychosocial support resources with explanations of each to compensate for primary physicians’ lack of knowledge in surveillance protocols.
Whom will the model serve?
The CAST Model will serve all children and adolescents under the Medicaid program starting with the prenatal period through age 21. These individuals will receive care for a six-month period following their active cancer treatment. Through a demonstration, model, the CAST model will explore the creation of a similar category for survivors of childhood cancer which would last for the 6-month period after they finish active cancer care who can participate in the demonstration based on their Medicaid eligibility as a childhood cancer survivor.
Risk Stratification Approach and Tiered Service Delivery:
An important element of the program is a focus on the services provided and associated payment rates. The CAST structure is based on population-wide late effect risk-stratification according to level of need. Service Integration Levels (SILs) consist of integrated care coordination levels of increasing intensity appropriate for individual needs. The goal of stratification is to ensure that survivors receive the individualized care they need. Specifically, the model will consider individuals at low, middle and high risk of occurrence and use different services and follow up depending on risk after active therapy. Even within the category of those who have completed curative care differing levels or tiers of care might be merited based on need. The creation of tiers will dictate whether individuals are treated by oncologists for life, go into primary care with five year follow ups or receive other modes of follow up. States should associate payment levels with tiers of coverage.
Models
The model will require participating states to develop for supporting an initial physician/nurse practitioner handoff or transition visit, subsequent information dissemination of a survivor care plan, follow up by the designated provider, and coverage of diagnostic testing and imaging which may be outside the typical benefit package for an insured via existing state authorities available under Medicaid. The goals of the program are to 1) increase access to survivorship care at the end of active treatment for childhood cancer survivors, 2) ensure the model’s sustainability long-term, and (3) develop a mechanism to reimburse a cancer care transition visit.
The model would create a hand off/transition visit per monthly payment that would be available for the six-month period from the patient hand off until they are settled in a clinic or primary care setting.
How will funding be awarded?
CMS will release a Notice of Funding Opportunity to solicit applications for up to eight cooperative agreements that will implement the CAST Model. Each cooperative agreement will be up to $16 million for the five-year model period. Applicants will be required to describe how their existing funding sources will be used to deliver services to beneficiaries since model funding may be used only to support model planning and implementation activities. The Notice of Funding Opportunity will specify additional model requirements and eligibility criteria for state applicants.
What is the model timeline?
The CAST Model will include a two-year pre-implementation period in which CMS will work with state Medicaid authorities to develop the infrastructure and procedures necessary for model implementation. A five-year model implementation period will follow in which states will implement their models and report required data to CMS.
Report to Congress
CMMI will report to Congress annually on the demonstration and will provide final recommendations on standards and payments for a survivorship care model at the end of the program.