Organization and Care Delivery Structure of Survivorship

Written By Funnel Communication

The following recommendations are based on the expert consensus of the Cancer Journey Survivorship Expert Panel, informed by a systematic review of the evidence current to December 2009. The body of evidence includes clinical practice guidelines, systematic reviews and randomized controlled trials. Each recommendation was developed with the consideration of the expected health benefits balanced with the potential harms, side effects or risks associated with the guidance offered. Tactics for guideline implementation across various healthcare jurisdictions or health models are offered and can be used as part of auditing or monitoring of survivorship services. Final and formal approval of the document was obtained through an online vote by the members of the Cancer Journey Survivorship Expert Panel. Where recommendations were taken directly or adapted from any of the identified practice guidelines, the source document is listed after the recommendation. While there is a great volume of data on the topic, unless otherwise stated, recommendations should be considered consensus-based and informed by the evidence.

It is recommended that survivorship services be recognized as a distinct component and standard of cancer care, with access to services to meet a broad range of survivors’ physical, psychosocial, supportive, informational, and rehabilitative needs.

(Adapted from the Institute of Medicine’s (IOM) consensus recommendation #2)

Tactics:
  1. Develop specific programs to establish survivorship services as a distinct component of cancer care and to ensure equitable access to these services taking into consideration needs of survivors from diverse backgrounds and living in remote or rural settings.
  2. Establish outreach programs working in partnership with community groups and assist community providers in providing care that meets a broad range of survivor needs.
  3. Use technology-based or alternative forms of care such as the Internet, health portals or mobile clinics to provide survivors with rapid access to necessary survivorship support services.
  4. Develop and maintain an up-to-date database of local resources available to support cancer survivors, their families and caregivers.
  5. Provide information about accessing a comprehensive range of rehabilitation services including, but not limited to, psychosocial services; nutrition support; spiritual care services; vocational rehabilitation; and physical, occupational and other therapy services including speech pathology, lymphedema services and enterostomal services.

It is recommended that individuals completing cancer treatment and their families receive individualized information and support in consultation with a designated and skilled member of the health care team to prepare them for the life-long monitoring and follow-up care required post-cancer treatment, and to minimize distress in the transition from active treatment to the follow-up phase of the cancer journey.

Tactics:
  1. All cancer treatment team providers should be knowledgeable in the issues facing cancer survivors and skilled in detecting and responding to distress in the weeks leading up to and at the time of discharge from the treatment phase of the cancer journey.
  2. Cancer care organizations should designate at least one specific member of the interdisciplinary team who will provide an end-of-treatment consultation to individuals and family members to counsel and prepare them for the transition to the follow-up phase of the cancer journey.
  3. The end-of-treatment consultation should include linking individuals to psychosocial, rehabilitative, or supportive care services, and employment counselling, in coordination with the primary care provider, depending on the issues or concerns identified.

It is recommended that all individuals completing primary treatment for cancer receive a written treatment summary and follow-up care plan (Survivorship Care Plan) from a designated member of the care team that includes a standard set of core multidimensional elements tailored to the individual’s cancer and treatment experience.

(Recommendation adapted from IOM consensus recommendation #2)

Tactics:
  1. The multidimensional components of the survivorship care plan should include the following core elements and should clearly designate who is accountable for completing the care plan and/or parts of the care plan:
    • Cancer type, treatment received and the potential adverse late and long-term effects of cancer treatment that must be routinely screened for, monitored and managed on an ongoing basis.
    • Goal, frequency and timing of follow-up visits as well as designating a specific coordinator or provider for follow-up care tests and procedures.
    • Specific procedures or tests for ongoing surveillance and detection of recurrence tailored to cancer type and treatment modalities.
    • The need to report new, persistent symptoms promptly without waiting for the next scheduled appointment and the specific provider to notify.
    • Psychosocial, rehabilitative, supportive care and other health care services that are available on-site, in the local community or through the Internet;
    • education on selecting peer support programs and resources that meet standards for best practice.
    • Guidance on strategies to reduce the risk of recurrence and maximize health and well-being (such as lifestyle changes related to nutrition, physical activity, smoking-cessation, etc.).
    • Information about employment, financial and legal issues, and counselling services available in the local community.
  2. Cancer care programs or organizations should designate at least one specific member of the interdisciplinary team to ensure completion of the treatment summary and recommendations regarding specific tests for monitoring for disease recurrence; late and long-term consequences based on current guidelines, where available, or best practices based on consensus where specific guidelines are lacking.
  3. To support the survivor’s use of the plan and to ensure coordination of care, the survivorship care plan should be given to primary care providers and other providers designated for follow-up care.

It is recommended that one or more health care providers be designated as responsible for providing survivorship follow-up services, with integration of primary care physicians in monitoring for late and long term treatment consequences, coordinated access to interdisciplinary specialists as required, with an emphasis on actively engaging and empowering survivors.

Tactics:
  1. Primary care physicians should be integrated into the oncology follow-up plan for monitoring early detection of cancer recurrence and managing late and long-term consequences of treatment as part of survivorship care.
  2. Primary care physicians and other designated providers of follow-up care should have a copy of the survivorship care plan and specific recommendations for required follow-up tests and procedures to monitor for late and long-term complications.
  3. Service configurations should ensure access to services that can meet a broad range of the cancer survivor’s physical, psychosocial, practical and rehabilitation care needs.
  4. A coordinated referral system should be established to ensure quick referral when a specific need for specialist services or interdisciplinary specialists has been identified.
  5. A tiered follow-up care approach or shared-care model between primary care physicians and oncology specialists are advisable for cancer survivors with complex issues and problems to ensure rapid referral back to the specialty centre (high-risk model).
  6. As appropriate, cancer survivors and families should be educated on the accessibility and benefits of follow-up care delivered by either their primary care physicians or oncology nurse specialists.
  7. Nurse-led care delivery models have been shown to be acceptable in delivering survivorship follow-up care services.

It is recommended that survivors be routinely screened for distress using valid tools across a broad range of late and long-term treatment effects: persistent symptoms and functional problems, symptoms of mood disorders (anxiety and depression), and other common problems such as cognitive changes or alterations in sexual health. Screening should be followed by focused assessment and interventions based on recommendations found in evidence-based clinical practice guidelines.

(Recommendation adapted from IOM consensus recommendation #3, and Psychosocial Health Care Needs Assessment Guideline for Adults, 2009).

Tactics:
  1. Develop a team to lead the implementation of evidence-based practice change, including representatives from all key stakeholder groups that would be affected by the proposed practice change (e.g., the inter-professional team, survivors, administrators). This group may prioritize recommendations within the guideline to be implemented, can identify the barriers and facilitators to change in the local environment, and should plan the approaches to be used.
  2. Seek formal commitments from stakeholder organizations, including resources for support strategies (e.g., education sessions, staff involvement), that would further the success and sustainability of implementing the practice change.
  3. Ensure that implementation plans reflect a multifocal approach, targeting change at both the individual (e.g., education, audit and feedback) and organizational (e.g., policy and structural changes) levels.
  4. Promote the development and evaluation of clinical tools specific to the care of survivors in the post-treatment phase.
  5. To achieve and sustain the long-term care effects, the practice change must be effectively managed using a programmatic approach based on the most effective and multifaceted implementation strategies.

It is recommended that using approaches recommended for supporting effective self- management, designated providers of survivorship follow-up care should focus on enabling and empowering individuals and their families by giving them the skills and knowledge they need to be active participants in optimizing their health and well- being.

Tactics:
  1. Organizations providing care for cancer survivors should provide access to tailored education, training and support for the development of self-management skills and strategies, based on personalized assessment and care planning. The assessment should take into consideration the resources available to the survivor, including individual strengths (e.g., resilience) and family support.
  2. Self-management support may be provided through a variety of methods including, but not limited to, peer counselling, psychoeducation, and telephone- or Internet- based support.
  3. Cancer care programs or organizations should encourage cancer survivors to be proactive in their own care by promoting skill development, access to community agencies, and positive decision-making skills for healthy lifestyles.
  4. Self-management programs should be developed that focus on goal-setting and problem-solving strategies, health coaching based on motivational interviewing skills, and health-behaviour change theories.

It is recommended that all clinical staff receive education to increase awareness of the needs of cancer survivors. Specific education programs should be targeted to designated follow-up care providers to ensure effective monitoring for disease recurrence, preventing and managing late and long-term effects of cancer treatment, and to encourage specific strategies that empower survivors to be actively engaged in self-management and adopt healthy lifestyle behaviours.

Tactics:
  1. The curriculum should include the need for cancer surveillance, personal impact of cancer, role of nutrition, role of rehabilitation, management of distress, pain and other symptoms.
  2. At a minimum, health care provider education to support self-management should include assessment skills, motivational interviewing, information sharing, problem solving and goal setting, shared decision-making, self-efficacy assessment and follow-up interventions.
  3. Designated follow-up care providers and family physicians should be knowledgeable and trained in screening for distress and conducting physical assessments, including body weight, waist-to-hip ratio and BMI; physiological assessments; and brief dietary intake assessments.
  4. Partnerships should be formed with survivorship organizations to provide ongoing professional development and skill acquisition for assessing and managing specific survivorship issues.
  5. Technology-based resources (e.g., the Internet) should be used to distribute survivorship information to health care professionals in readily accessible and user- friendly formats.

It is recommended that cancer care organizations, advocacy groups and governments, as part of cancer control initiatives, work in partnership to increase awareness in the broader community (members of the public, decision-makers, policy-makers, and employers) of the physical, emotional, spiritual, social, return-to-work, and rehabilitative needs post-cancer treatment, and any variations depending on cancer type, treatment, individual and support systems (economic support, family, and rehabilitation).

Tactics:
  1. Engage organizations to develop public service announcements to inform the public of the gains being made in survivor rates.
  2. Assist survivor organizations in funding public platforms to share survivor stories.
  3. Keep survivor-driven organizations aware and informed of the latest evidence of effective survivorship care.

It is recommended that cancer care providers, provincial and federal health research organizations, and advocacy groups support the development of new research initiatives focused on post-treatment follow-up care and recovery. In particular, research is needed to examine the late and long-term effects of cancer and its treatments, the effectiveness of survivorship care plans and transition care, interventions to improve quality of life and alternative models of care for cancer survivors.

Tactics:
  1. Create interdisciplinary teams of clinicians and researchers, which would include primary care, oncology, nursing, allied health, and health services researchers.
  2. Use and expand existing research mechanisms and groups (such as the National Cancer Institute’s clinical trials groups, and cancer and population-based registries), and develop new focused research consortiums.
  3. Develop comprehensive electronic databases to collect, summarize, analyze and store clinical data and support survivorship research.

It is recommended that organizations use, and report on, performance measures and indicators that capture self-reported physical, emotional, and social domains to monitor the quality of survivorship services, and demonstrate improvement for a comprehensive range of survivor outcomes, and accelerate quality improvement practices and programs based on these data.

Tactics:
  1. Cancer control and/or provincial organizations should establish an effective and feasible performance measurement plan to evaluate the efficacy of psychosocial and supportive care services in improving the well-being of cancer survivors.
  2. Organizations providing survivorship services should develop or adopt quality- improvement practices to accelerate the process of evaluating and improving psychosocial and supportive care interventions for cancer survivors.
  3. Survivorship care organizations should encourage the engagement of cancer survivors, their families, local community partners, advocacy groups and health agencies in developing performance measurement plans.

It is recommended that health policy and legislation (employment law, insurance and human rights) be enacted to meet the diverse needs of cancer survivors and allow for full survivor access to, and participation in, employment, education and health and community services.

(Recommendation adapted from IOM Recommendation #8)

Tactics:
  1. Advocacy groups, health care providers and stakeholders should:
    • Raise public awareness of survivorship issues and be active in establishing cancer survivorship as a distinct phase of the cancer journey.
    • Educate stakeholder organizations, including employers and insurance companies, on the specific issues faced by cancer survivors, the late and long- term effects of the disease and its treatments, and the importance of delivering and coordinating survivorship care programs.
    • Work with employers and other community organizations to establish vocational rehabilitation programs and other programs to facilitate return to work.
    • Communicate with provincial and federal stakeholders and decision-makers.
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