Objectives: Quality of Life

Quality of Life 1

Increase the number of sustainable information and educational resources across the full spectrum of cancer survivorship, from diagnosis to treatment to cancer survivorship post-treatment, including rehabilitation as well as palliative and end-of-life care.

Identify available and recommended information and educational resources to promote informed treatment decision-making, to facilitate access to state-of-the-science cancer treatment and IRB-approved clinical trials, and to promote improved quality of life post-treatment. Such resources should include print materials, websites, telephone information systems and other resources provided by the National Cancer Institute, the American Cancer Society, the National Coalition for Cancer Survivorship, the Lance Armstrong Foundation and other recommended and authoritative sources.
Where gaps exist in available information and educational resources for cancer survivors, develop new information and educational resources to fill these gaps.
Conduct professional educational programs and other outreach efforts to increase the number of cancer resource centers at hospitals, medical centers and clinics.
Form partnerships with public libraries, work sites and other community-based organizations to make these information and educational resources available to cancer survivors in their local communities.
Continue to support and expand interactive decision-making support tools available on the CCC website and other vetted websites.
Efforts by the CCC to increase the number of information and education resources for cancer survivors should include, as a high priority, resources that will effectively respond to the needs of low literacy and culturally diverse populations. Such efforts should include developing partnerships with organizations and other intermediaries that can provide access to under-served communities.
CCC should include, as a high priority, increasing the number of information and educational resources that specifically focus on the critically important and distinct areas of rehabilitation, palliative care and end-of-life care.

Quality of Life 2

Increase the use of these information and educational resources for cancer survivors across the full spectrum of cancer survivorship, from diagnosis to treatment to cancer survivorship post-treatment, including rehabilitation as well as palliative and end-of-life care.

Create a centralized resource directory and clearinghouse of information and educational resources that can be accessed by the diverse populations of cancer survivors in Colorado (e.g., print, electronic and telephone; low literacy and non-English speaking cancer survivors).
Expand the Colorado Coalition website to include links to other authoritative and approved websites that provide information and educational resources for cancer survivors.
For newly diagnosed patients or patients with a recurrence, provide an oncology practice locator service to help match the patient to the provider organization most appropriate to treat the patient based on the patient's medical profile and geographic proximity to the patient.
For newly diagnosed patients or patients with a recurrence, provide a locator service for IRB-approved clinical trials based on the patient's medical profile and geographic proximity of the trial to the patient.
Conduct professional educational programs, including CME-accredited courses, to increase awareness of these information and educational resources by physicians, nurses, community and clinical navigators and other health professionals, and to encourage referrals to these resources for cancer survivors.
Conduct cancer summits, educational seminars, workshops and other outreach efforts in the community to promote use of these information and educational resources by cancer survivors.
Develop and implement a systematic and on-going campaign to promote use of these information and educational resources by cancer survivors using both traditional media and new social media technology.
Drawing upon the substantial expertise that already exists in Colorado, conduct training workshops to promote the development and implementation of cancer resource centers in hospitals, medical centers and clinics statewide, as well as in public libraries, work sites and other community venues.
Form a "Colorado Association of Cancer Survivorship Information Programs" to continue strategic planning, implementation and dissemination of community-based information and educational programs for cancer survivors statewide.

Quality of Life 3

Increase the number of sustainable service programs across the full spectrum of cancer survivorship, from diagnosis to treatment to cancer survivorship post-treatment, including rehabilitation as well as palliative and end-of-life care.

Identify available and recommended service programs for cancer survivors, including patient navigator programs, cancer support groups, behavioral programs for cancer survivors, cancer survivorship clinics, rehabilitation programs, and palliative care and end-of-life programs.
Where gaps in geography exist in access to these programs and services, conduct workshops and training programs to either implement such programs at hospitals, medical centers and clinics to minimize or eliminate these gaps, and/or to promote referral patterns that would likewise minimize or eliminate these gaps for cancer survivors.
Efforts by the CCC to increase the number of sustainable service programs for cancer survivors should include, as a high priority, efforts to develop and extend the reach of effective and sustainable evidence-based programs for low literacy and culturally diverse populations.
Similar efforts by CCC should likewise include, as a high priority, efforts to develop and extend the reach of effective and sustainable evidence-based programs in the critically important areas of rehabilitation, palliative care and end-of-life care.

Quality of Life 4

Increase the number of cancer survivors who participate in recommended service programs for cancer survivors, including patient navigator programs, cancer support groups, behavioral programs for cancer survivors, cancer survivorship clinics, rehabilitation programs, and palliative care and end-of-life programs.

Create a centralized resource directory and clearinghouse of cancer survivor programs that can be accessed by the diverse populations of cancer survivors in Colorado (e.g., print, electronic and telephone; low literacy and non-English speaking cancer survivors).
Conduct professional educational programs targeting physicians, nurses, clinical and community navigators and other health professionals, including CME-accredited courses, to increase awareness of these service programs and to promote referrals and access to these programs.
Conduct cancer summits, educational seminars, workshops and other outreach efforts in the community to promote use of these service programs by cancer survivors.
Develop and implement a systematic and on-going campaign to promote use of these programs by cancer survivors using both traditional media and new social media technology.

Quality of Life 5

Increase the number of cancer survivors in Colorado who receive treatment summaries and care plans post-treatment. Encouraging coordination of follow-up care between oncology specialists and primary care practitioners (physicians and/or nurses) should be a fundamental consideration when formulating these survivorship care plans.

Identify available treatment summaries and care plans or tools to create such documents that are either currently being used in Colorado or are recommended for use by authoritative sources in cancer survivorship.
Create a centralized resource or clearinghouse of these treatment summaries and care plans, and promote the use of this clearinghouse by oncology specialists, primary care physicians, navigators and cancer survivors.
Provide an evaluation tool for treatment summaries and care plans that will assess their comprehensiveness based on recommendations of the IOM. For those treatment summaries and care plans that do not adequately address all components, encourage oncology specialists to include this information, and primary care physicians and cancer survivors to request this information.
Encourage, facilitate and collaborate in an expert review of existing treatment summaries and care plan templates regarding their utility for low literacy and culturally diverse populations. Based on this review, promote and collaborate in efforts to revise or develop new treatment summary and care plan templates as appropriate for low literacy and culturally diverse populations that address all key components recommended by the IOM.
Conduct professional educational programs targeting physicians, nurses, clinical and community navigators and other health professionals, including CME-accredited courses, to increase awareness of the importance of treatment summaries and coordinated care plans with primary care practitioners, and to provide these summaries and care plans to cancer survivors post-treatment. These professional education efforts should include, as a high priority, promoting the use of cancer treatment summaries and care plans that are vetted and approved by CCC for low literacy and culturally diverse populations.
Conduct cancer summits, educational seminars, workshops and other outreach efforts in the community to encourage and empower cancer survivors to request and receive a treatment summary and a coordinated care plan post-treatment. These outreach efforts should also include, as a high priority, promoting the use of cancer treatment summaries and care plans that are vetted and approved by CCC for low literacy and culturally diverse populations.
Develop and implement a systematic and on-going campaign, using traditional media and new social media technology, to encourage cancer survivors to request and receive a treatment summary and a coordinated care plan post-treatment.

Quality of Life 6

Facilitate and engage in on-going efforts nationwide to develop and disseminate evidence-based or consensus-approved clinical practice guidelines for use within post-treatment care plans for cancer survivors, including guidelines for medical surveillance and follow-up, as well as referrals to psychosocial and behavioral programs for cancer survivors.

Conduct workshops and summits involving oncology specialists, primary care practitioners as well as psychosocial and behavioral experts in oncology to recommend state-of-the-science clinical practice guidelines for cancer survivors in Colorado, informed by corresponding efforts that are occurring nationwide. These clinical practice guidelines should systematically encompass the full spectrum of care provided to cancer survivors, including medical surveillance and follow-up, behavioral and psychosocial programs, as well as rehabilitation, palliative care and end-of-life care.
Monitor the on-going development of clinical practice guidelines for cancer survivors at the state, regional and national levels and provide a centralized resource and clearinghouse for disseminating clinical practice guidelines for use in post-treatment care plans for cancer survivors.
Monitor the on-going development of assessment tools to determine the need for services consistent with these clinical practice guidelines (e.g., practice guidelines related to psychosocial morbidity or non-adherence to behavioral recommendations for cancer survivors), and include these assessment tools in the centralized resource to facilitate dissemination and use of clinical practice guidelines in post-treatment care plans for cancer survivors.
Conduct workshops, community summits and engage in other promotion activities, including CME-accredited courses, to promote awareness and use of this centralized resource containing recommended clinical practice guidelines and assessment tools for cancer survivors. These workshops and summits should target academic and community-based hospitals and medical centers, as well as oncology specialists, primary care practitioners, cancer survivors and other advocates and stakeholders.
Develop and implement a systematic and on-going campaign, using traditional media and new social media technology, to encourage cancer survivors to become more aware of these clinical practice guidelines and request that they be assessed and included in their care plans post-treatment.

QOL 7

Increase program evaluation and outcomes research in cancer survivorship, with the former assessing cancer survivorship resources and programs in terms of reach, implementation fidelity, perceived utility, satisfaction and sustainability, with the latter assessing efficacy with respect to improving cancer survivorship care and/or survivorship outcomes relevant to the different phases of cancer survivorship (e.g., during treatment, post-treatment, palliative and end-of-life care).

Identify available reports and publications involving evaluations of cancer survivorship programs in Colorado as well as nationwide.
Create a clearinghouse of these reports and publications, and promote the use of this clearinghouse as a resource for program administrators, oncology specialists and other health care professionals, as well as for researchers, program evaluators, cancer survivors and other advocates and constituencies in cancer survivorship.
Conduct educational programs and training workshops targeting physicians, nurses and other service providers, including CME-accredited courses, on the importance of program evaluation and outcomes research and the methodologies that can be used in such research.
For cancer survivorship programs approved and/or promoted by CCC, encourage systematic program evaluation, and when appropriate and feasible, outcomes and efficacy research, and provide a centralized resource where summaries of these evaluations can be accessed by program administrators, oncology specialists and other health care providers, as well as by researchers, program evaluators, and other stakeholders and constituencies.
Create a centralized resource and clearinghouse of frequently used assessments in cancer survivorship research, including coding manuals and representative studies that have used these assessments.
Create a centralized resource and clearinghouse of potential funding opportunities and announcements that could promote cancer survivorship research collaborations in Colorado.
Ensure that the Behavioral Risk Factor Surveillance System (BRFSS) includes on a regular basis both the core and supplemental cancer survivorship modules developed by the Centers for Disease Control and Prevention.
Develop quantitative benchmarks using the BRFSS and other sources to monitor progress in cancer survivorship in Colorado, and publish these findings on a regular basis under the auspices of the CCC.
Enhance the utility of the BRFSS to serve as a resource for monitoring progess in cancer survivorship by adding new questions to assess unmet needs and access to appropriate information and educational resources and service programs across the full spectrum of cancer survivorship, including rehabilitation, palliative care and end-of-life care.
Promote research efforts that specifically focus on evaluating cancer survivorship programs, resources and materials for low literacy and culturally diverse populations in Colorado.
Create and maintain a network of volunteer advisors who can assist and partner with community-based cancer survivorship programs to facilitate program evaluation and/or pursue additional opportunities for cancer survivorship research. Such advisors should include oncology specialists and other health professionals, researchers, survivor advocates and survivorship program experts, as well as experts in under-served and culturally diverse populations.

QOL 8

Increase advocacy for cancer survivorship programs and resources at the local, state, regional and national levels.

Identify key organizations and individuals who are actively engaged in advocacy efforts for cancer survivors, and secure their permission to include them in a clearinghouse or registry with their contact information and areas of interest in cancer survivorship.
Develop and implement a systematic and on-going campaign, using traditional media and emerging new social media, to increase the number of organizations and individuals included in this clearinghouse or registry for cancer survivorship advocacy in Colorado.
Promote the use of this clearinghouse or registry to leverage support as well as to broaden and intensify cancer survivorship advocacy in Colorado.
Create and promote a "Cancer Survivorship Advocacy Working Group" to continue strategic planning for cancer survivorship advocacy efforts, and to coordinate and implement such efforts at the local, state, regional and national levels. Members of this working group should include representatives of the advocacy community, health professionals, survivorship experts, researchers, as well as members from other CCC Task Forces. This working group should coordinate their efforts with the existing Policy and Advocacy Task Force of the CCC.
Within the organizational structure of the CCC, designate one person to serve as the key contact point and coordinator for cancer survivorship advocacy efforts conducted under the auspices of the CCC.
Intensify and expand partnerships with the American Cancer Society, the National Coalition for Cancer Survivorship, the Lance Armstrong Foundation and other cancer advocacy groups and constituencies to leverage their support and expertise in advocating for resources, programs and legislation to improve cancer survivorship in Colorado and beyond.
Target a broad spectrum of organizations, agencies and other constituencies to improve cancer survivorship in Colorado, including legislators, policy makers and program administrators, health care organizations and foundations, the mass media and the insurance industry, as well as other organizations and constituencies that can facilitate or enable such improvements in cancer survivorship resources, programs and initiatives.
Conduct cancer summits and training workshops to recruit new cancer advocates, and to educate, train and encourage cancer advocates to become more active and effective in advocating for cancer survivorship at the local, state, regional and national levels.
Include among the high priority areas for advocacy efforts in cancer survivorship:
- Increased funding and other sources of support to sustain, update and expand information and educational resources across the full spectrum of cancer survivorship, and to eliminate health literacy, sociocultural, communication technology and other barriers that can impede the utility of such resources as well as their accessibility.
- Increased funding and other sources of support to sustain, update and expand service programs across the full spectrum of cancer survivorship, and to eliminate economic, health literacy, sociocultural, geographic and other barriers that can impede both the utility and accessibility of these service programs. Such programs should include decision-support programs and tools for making informed treatment decisions, patient navigation programs, programs to help patients and survivors manage short and longer term treatment side effects and encourage recommended medical follow-up, psychosocial and behavioral programs, as well as rehabilitation, palliative care and end-of-life programs and resources.
- Improved access to state-of-the-science cancer treatments, regardless of ability to pay.
- Improved access to IRB-approved clinical trials, regardless of ability to pay.
- Legislation, quality assurance directives and reimbursement incentives for oncologists that will enable cancer survivors to receive treatment summaries and care plans post-treatment, including care plans that incorporate coordination of care between oncologists and primary care physicians.
- Increased efforts to develop and promote the use of clinical practice guidelines for managing cancer survivorship care post-treatment.
- Increased statutory and other legal protections for cancer survivors involving return to work and family leave policies, both during and after completion of primary therapy.
- Increased funding for program evaluation and outcomes research across the full spectrum of cancer survivorship.