Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.

What is the comparative effectiveness of different models of survivorship care and sets of services on late and long-term net health outcomes (e.g., for breast cancer)?

Does your question include a comparison of different health care approaches? (If no, your topic will still be considered.)

yes

If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:

A comparison of the impact on net health outcomes and patient satisfaction of different models of survivorship care. Potential models to be examined (Hewitt et al. 2006; Gilbert et al. 2011), depending on the literature base, include

• The use of patient survival care plans, developed by oncologists or other specialists coordinating primary cancer treament, e.g. urologists, gynecologists, or their staff and implemented by primary care physicians
• A community-based, shared cared model including treating oncologists and referring physicians
• Risk-based follow-up care, which focuses services on patients at elevated risk of negative health consequences from their cancer and its treatment. Cancer-specific survivorship clinics, which provide a range of services in a single clinical setting for defined populations, e.g., childhood cancer survivors
• Institution-based survivorship programs, which provide comprehensive care to all cancer survivors in a single setting such as an academic cancer center.

Hewitt M, Greenfield S, Stovall E., eds. Committee on Cancer Survivorship: Improving Care and Quality of Life. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: Institute of Medicine and National Research Council.

Gilbert SM, Miller DC, Hollenbeck BK et al. 2008. Cancer survivorship: Challenges and changing paradigms. J Urol 179:431-8.

What patients or group(s) of patients does your question apply to? (Please include specific details such as age range, gender, coexisting diagnoses, and indications for therapy.)

Cancer patients completing primary treatment (Hewitt et al. 2006).

Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)

Of particular interest may be children, given the potentially longer time in which downstream effects may become evident and the possibility that cancer therapies may have a different impact on a developing body.

Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.)

According to the Institute of Medicine report on survivorship (Hewitt et al. 2006), the essential components of survivorship care are as follows:

• Prevention of recurrent and new cancers, and of other late effects;
• Surveillance for cancer spread, recurrence, or second cancers; assessment of medical and psychosocial late effects;
• Intervention for consequences of cancer and its treatment, for example: medical problems such as lymphedema and sexual dysfunction; symptoms, including pain and fatigue; psychological distress experienced by cancer survivors and their caregivers; and concerns related to employment, insurance, and disability; and
• Coordination between specialists and primary care providers to ensure that all of the survivor’s health needs are met.

The potential health-related benefits of survivorship care therefore include earlier

detection and treatment of recurrence or new primary cancers, with the potential for

improved survival; improvement in quality of life and health due to treatment of late or

continuous treatment side-effects or psychosocial effects of having cancer; and greater

patient satisfaction.

Describe any health-related risks, side effects, or harms that you are concerned about.

Potential risks, side effects, or harms of survivorship care generally focus on quality of

life. They may include earlier initiation of treatment for cancer progression that does

not increase survival (thereby shortening the asymptomatic period with no side effects

of treatment); more frequent screening with the potential for false positive results and

further downstream testing or treatment; negative psychological effects; and

inconvenience.

Appropriateness for EHC Program

Does your question include a health care drug, intervention, device, or technology available (or likely to be available) in the U.S.?

yes

Which priority area(s) and population(s) does this topic apply to? (check all that apply)

EHC Priority Conditions (updated in 2008)

• Cancer

AHRQ Priority Populations

• Low income groups
• Minority groups
• Women
• Children
• Elderly
• Individuals with special health care needs, including individuals with disabilities or who need chronic care or end-of-life health care

Federal Health Care Program

• Medicaid
• Medicare
• State Children's Health Insurance Program (SCHIP)

Importance

Describe why this topic is important.

Cancer survivors generally face the risk of recurrence, often higher risks of new

primary cancers (depending on the treatment regimen), potential for long-term adverse

effects of cancer treatments, and the psychosocial and cognitive effects of both cancer

and its treatment. Given the often fragmented system of health care in the United States and historical underuse of preventive services, there is concern that cancer survivors and their primary care physicians may not fully understand the risks these patients face and the services they need. The focus on survivorship as a distinct phase of the cancer continuum is important to ensure that these patients receive the coordinated healthcare they need and thereby optimize outcomes once the primary cancer care is completed.

What specifically motivated you to ask this question? (For example, you are developing a clinical guideline, working with a policy with large uncertainty about the appropriate approach, costly intervention, new research you have read, items in the media you may have seen, a clinical practice dilemma you know of, etc.)

This topic was given high priority by a multi-disciplinary stakeholder panel (including patient advocates/representatives) convened to identify and select research questions on cancer of importance for systematic review. Particular interest was expressed by the consumer, business, and nursing representatives on the panel, as well as a number of clinicians.

Does your question represent uncertainty for clinicians and/or policy-makers? (For example, variations in clinical care, controversy in what constitutes appropriate clinical care, or a policy decision.)

yes

If yes, please explain:

Although the importance of this topic was emphasized throughout the discussions of the stakeholder panel, as well as in calls with other cancer experts, there was agreement that the most effective way(s) of providing such services has not been identified. The Institute of Medicine report (Hewitt et al. 2006) recommends increased support for survivorship research from the Agency for Healthcare Research and Quality, among other federal agencies and other entities. Topics mentioned included “the cost-effectiveness of alternative models of survivorship care and community-based psychosocial services; and interventions to improve the quality of life of cancer survivors, their families, and caregivers.”

Potential Impact

How will an answer to your research question be used or help inform decisions for you or your group?

A report would inform clinical decision-making for patients, payers and providers.

Describe the timeframe in which an answer to your question is needed.

Although this is a topic for which many would like to have a definitive answer, there

was general agreement among stakeholders consulted that this field is in a fairly early

stage of development, in terms of rigorous trials or evaluations of which models

perform best. It is therefore recommended that this topic be addressed in 2 to 3 years,

by which time additional research will have been completed.

Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.

It is premature to speculate on which survivorship models are more effective for

different patient populations. It is certainly possible that usefulness or applicability of

models will vary in accordance with patients’ mobility, access to healthcare more

generally, living situation, etc. This topic should be explored to the extent possible

given available data.

Nominator Information

Other Information About You: (optional)

Please choose a description that best describes your role or perspective: (you may select more than one category if appropriate)

A report would inform clinical decision-making for patients, payers and providers.

Are you making a suggestion as an individual or on behalf of an organization?

Organization

Please tell us how you heard about the Effective Health Care Program

The BlueCross BlueShield Association Technology Evaluation Center is an Evidence-based Practice Center of AHRQ.