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Diagnosis, Treatment, and Survivorship

Diagnosis, treatment, and survivorship includes providing support and services to cancer patients, survivors, and their caregivers to address social, emotional, and financial challenges they may face to increase quality of life.

Promoting awareness and access to different supports and services includes navigation, ongoing care coordination, genetic counseling, and telehealth or outreach programs.

Most measures in this priority area will be used based on the organization implementing the objective to reach the goal. Most objectives in this area do not have a data source due to the data on these objectives not being collected or not existing currently regarding cancer survivorship issues in Illinois.

The diagnosis, treatment, and survivorship goals are:

  1. Promote awareness and access to navigation services, including financial navigation and care navigation, to reduce disparities in cancer health outcomes
  2. Increase diagnosis of high-risk patients with familial or genetic risk factors
  3. Increase awareness of ongoing care coordination for monitoring, follow-up, and recurrence screening
  4. Raise awareness of the need for increased quality of life for enhanced recovery and survivorship and available resources
  5. Support the availability of telehealth and outreach programs

Promote awareness and access to navigation services, including financial navigation and care navigation, to reduce disparities in cancer health outcomes

  • Objective 1: Promote four educational opportunities for patient navigators per year.
    Measure: Distribution of patient navigator educational opportunities per year.
  • Objective 2: Develop a resource document of supportive services.
    Measure: Completion and distribution of the resource document.

Strategies

Policy Strategies

  • Educate decision-makers about economic and insurance barriers related to health care for cancer survivors
  • Educate policy- and decision-makers about the role and value of long-term follow-up care for cancer survivors
  • Establish policies that create an environment conducive to program implementation and other cancer survivorship changes
  • Promote policy changes that support addressing cancer as a long-term, chronic disease

System Strategies

  • Make intentional efforts/generate opportunities to build collaboration with and to leverage existing patient navigation platforms
  • Focus educational opportunities to increase navigation in communities that experience disparities in diagnosis, treatment, and cancer outcomes
  • Develop a catalogue of hospital-based and community-based cancer support resources for organizations that have limited navigation services on-site
  • Promote patient navigation and community health worker programs
  • Develop, test, maintain, and promote patient navigation or case management programs that facilitate optimum care
  • Develop, test, maintain, and promote patient navigation systems for people living with cancer
  • Increase community-clinical linkages to community support services
  • Set up programs to help individual cancer survivors (e.g., provide transportation to treatment, meals, respite care for caregivers, child care, etc.)
  • Develop and disseminate public education programs that empower survivors to make informed decisions
  • Teach survivors how to access and evaluate available information
  • The Illinois Cancer Partnership (ICP) Survivorship Subcommittee will develop a roadmap for navigating through treatment and support services

Environmental Changes Strategies

Health Equity Strategies

  • Identify resources for cancer survivors in communities that experience disparities in diagnosis, treatment, and cancer outcomes
  • Provide cultural competency training for health care providers to promote health equity
  • Encourage culturally specific health care settings to promote health equity
  • Use linguistically and culturally appropriate health education materials to promote health equity

Increase diagnosis of high-risk patients with familial or genetic risk factors

  • Objective 1: Improve awareness of guidelines for surveillance, diagnosis and appropriate treatment based on tumor characteristics (i.e., Lynch syndrome).
    Measure: Compare the percentage of Microsatellite Unstable (MSI-H) cancers reported to the National Cancer Data Base before and after providing resources.
  • Objective 2: Increase referrals to genetic testing.
    Measure: Survey genetic counselors about referral pattern before and after resources are provided.

Strategies

Policy Strategies

  • Providers follow USPSTF recommendation to recommend genetic counseling for potentially high-risk people

System Strategies

  • Provide resources about guidelines of cancer screening
  • Promote genetic testing referral resources for people diagnosed with cancer
  • Educate providers to engage in dialogue around genetic counseling and testing
  • Promote the addition of accredited genetic counselor programs

Environmental Changes Strategies

  • Educate and promote awareness of genetic counseling and testing

Health Equity Strategies

  • Develop and disseminate culturally and linguistically appropriate patient education materials (print and online)
  • Encourage new cancer genetic services in underserved areas, such as satellite clinics, telemedicine, cancer genetic clinic partners with local public health departments and/or primary care providers in rural areas

Increase awareness of ongoing care coordination for monitoring, follow-up, and recurrence screening

  • Objective 1: Promote awareness among health care providers of guidelines for surveillance and follow-up.
    Measure: Promote guidelines to four organizations with health care providers per year.
  • Objective 2: Promote existing resources to share with associations to educate providers on the elements of navigation.
    Measure: Identify five associations each year to distribute materials to their constituency (25 total over five years).
  • Objective 3: Increase patient and provider awareness of survivorship care coordination and guidelines by directing patients and providers to survivorship resources.
    Measure: Distribute materials to at least five patient advocacy organizations per year.

Strategies

Policy Strategies

  • Establish and/or disseminate guidelines that support quality and timely service provision to cancer survivors
  • Encourage integrated multidisciplinary teams of health care providers
  • Educate policy- and decision-makers about economic and insurance barriers related to health care for cancer survivors
  • Promote policy changes that support addressing cancer as a long-term, chronic disease

System Strategies

  • Promote utilization of survivorship care programs
  • Promote awareness of the importance of advance care planning
  • Improve accessibility of advance care planning documents within and across health systems
  • Create health system strategies to routinely assess and to review advance care plans throughout the cancer experience, including diagnosis, treatment, survivorship, and end of life
  • Increase community-clinical linkages to community support services
  • Promote the benefits and use of survivorship care plans with cancer survivors and their caregivers
  • Promote systems change to integrate survivorship care plans into systems of care
  • Identify a list of organizations for materials to be used for distribution
  • Share resources with the Illinois Breast and Cervical Cancer Program (IBCCP), WiseWoman, and other state and local health programs for distribution within their programs
  • The ICP Survivorship Subcommittee will create and disseminate a survey to collect baseline data on what types of care coordination is currently provided

Environmental Changes Strategies

  • Develop and disseminate public education programs that empower survivors to make informed decisions
  • Educate the public that some cancers are curable, some are a chronic disease, and that people can live with and do survive

Health Equity Strategies

  • Provide cultural competency training for health care providers to promote health equity
  • Promote culturally specific health care settings to promote health equity
  • Use interpreter services or bilingual providers to promote health equity
  • Use linguistically and culturally appropriate health education materials to promote health equity

Raise awareness of the need for increased quality of life for enhanced recovery and survivorship and available resources

Healthy People 2030 Objective – Increase quality of life for cancer survivors. Status: Research.

  • Objective 1: Decrease the percentage of days (8-30 days) where cancer patients’ and survivors’ mental health was not good from 9.7% to 8.7% by 2027 (BRFSS 2019).
  • Objective 2: Decrease the percentage of days (8-30 days) cancer patients and survivors were kept from doing their usual activities due to their health from 15.4% to 13.9% by 2027 (BRFSS 2019).
  • Objective 3: Decrease the percentage of cancer patients and survivors who are overweight or obese from 11.3% to 10.2% by 2027 (BRFSS 2019).
  • Objective 4: Decrease the percentage of cancer patients and survivors who binge drink alcohol from 4.8% to 4.3% by 2027 (BRFSS 2019).
  • Objective 5: Promote clinical trials to current cancer patients.
    Measure: Promote clinical trials in two educational documents each year (newsletter, brochure, flyer, etc.).
  • Objective 6: Increase the number of Illinois providers certified in hospice and palliative medicine from 207 to 228 by 2027.

Strategies

Policy Strategies

  • Promote the use of integrated multidisciplinary teams of health care providers
  • Promote policy changes that support addressing cancer as a long-term, chronic disease

System Strategies

  • Provide education to cancer survivors and caregivers on the impact of continued tobacco use and refer to tobacco cessation resources to decrease reoccurrences and secondary cancers
  • Provide education to cancer survivors and caregivers on national nutrition and physical activity guidelines to decrease reoccurrences and secondary cancers
  • Promote disease self-management workshops or classes to cancer survivors and to caregivers
  • Partner with collaborating organizations to assess palliative care needs
  • Assess and enhance provision of palliative services to cancer survivors
  • Provide education to patients and to caregivers on comprehensive information regarding legal and ethical end-of-life care options, such as advance directives and living wills
  • Promote earlier hospice care transitions for qualifying cancer patients
  • Disseminate resources to educate providers on physical quality of life assessment and resources to address reduced quality of life
  • Promote the use of existing lifestyle change programs
  • Utilize community health workers (CHWs) or patient navigators to recommend patients and survivors to a lifestyle change program
  • Promote or provide educational resources on alcohol misuse to providers and to patients
  • Implement the utilization of established provider reminder systems that identify patients eligible for available clinical trials
  • Promote participation by diverse populations in clinical trials to help ensure research conducted is relevant and serves the needs of diverse communities
  • Discuss available clinical trials in multi-disciplinary tumor board meetings
  • Develop methods to encourage referral for appropriate clinical trials when not available in the local community/practice
  • Utilize the electronic medical record as a mechanism to increase enrollment in clinical trials

Environmental Changes Strategies

  • Develop and disseminate public education programs that empower survivors to make informed decisions
  • Educate health care providers about cancer survivorship issues from diagnosis through long-term treatment effects and end-of-life care
  • Implement evidence-based cancer plans that include all stages of cancer survivorship
  • Provide information to cancer survivors, health care providers, and the public about cancer survivorship

Health Equity Strategies

  • Promote resources and webinars to educate providers on a trauma-informed, health equity approach to cancer survivorship
  • Promote access to quality treatment and to clinical trials
  • Ensure culturally specific health care settings to promote health equity
  • Use interpreter services or bilingual providers to promote health equity
  • Use linguistically and culturally appropriate health education materials to promote health equity

Support the availability of telehealth and outreach programs

Healthy People 2030 Objective: Increase the use of telehealth to improve access to health services. Status: Research.

  • Objective 1: Promote continued availability of telehealth for patients.
    Measure: Further research needs to be done for data sources that collect this information in Illinois.
  • Objective 2: Promote educating patients on how to utilize telehealth platforms and other technology.
    Measure: Availability of curriculum or training resources for clinic staff and CBOs to support patient use of telehealth platforms. Organizations assess the patient’s ability to access internet from home.

Strategies

Policy Strategies

  • Promote policy changes that support addressing cancer as a long-term, chronic disease

System Strategies

  • Utilize comprehensive telehealth interventions to help adults who have chronic diseases that are affected by dietary behaviors
  • Share best practices from patient telehealth experiences
  • Monitor changes in payor policies for telehealth
  • Utilize staff (office assistants or CHWs) to educate patients on how to use these platforms when checking in for an appointment

Environmental Changes Strategies

  • Provide information to cancer survivors, health care providers, and the public about cancer survivorship and meeting their needs

Health Equity Strategies

  • Ensure culturally specific health care settings to promote health equity
  • Use interpreter services or bilingual providers to promote health equity
  • Use linguistically and culturally appropriate health education materials to promote health equity