Overview: Quality of Life

 As shown in Figure 1, recent estimates indicate that there are in excess of 11 million people living with a history of cancer in the United States, reflecting nearly a four-fold increase from the early 1970s.  Given this extraordinary growth in the number of cancer survivors, combined with the many daunting challenges faced by cancer patients and survivors at the time of diagnosis, during treatment and beyond, comprehensive state-level cancer control plans must include cancer survivorship as recommended in a recent report from the Institute of Medicine (IOM). 

 

This landmark report, titled From Cancer Patient to Cancer Survivor: Lost in Transition [1], contained 10 key recommendations, one of which recommended that: 

“Congress . . . support [the] Centers for Disease Control and Prevention, other collaborating institutions, and the states in developing comprehensive cancer control plans that include consideration of survivorship care, and promoting the implementation, evaluation and refinement of existing state cancer control plans” [Recommendation 6, Executive Summary, page 8].

The Colorado Cancer Coalition (CCC) has been at the forefront nationally in recognizing cancer survivorship as a priority.  In the previous Colorado Cancer Plan for 2005-2010, an entire chapter was devoted to this topic, which has now been updated for 2010-2015.  Although many of the key objectives and strategies included in the previous Colorado Cancer Plan have been retained, several new developments and challenges in cancer survivorship, also identified in the IOM report, have likewise been included in this chapter.  Especially noteworthy in this regard is the need to provide cancer patients and survivors with treatment summaries and care plans post-treatment.  As described in the IOM report as another key recommendation:

“Patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained.  This ‘Survivorship Care Plan’ should be written by the principal provider(s) who coordinated oncology treatment.  This service should be reimbursed by third-party payors of health care” [Recommendation 2, Executive Summary, page 4].

A consensus is now emerging on the essential elements that should be included in these care plans (see Table 1).  Recommended components include diagnostic information, a comprehensive summary of treatments received and their toxicities, potential short- and longer-term effects of treatment, surveillance recommendations for toxicity, recurrence and second cancers, and recommendations and referrals to address psychosocial, vocational and behavioral needs.  The need to provide cancer survivors with this essential information is so compelling that it has now been elevated to one of the key objectives in this chapter.  As others have noted [1-4], these treatment summaries and care plans will need to be understandable and usable for cancer survivors, and they should be accompanied by a conversation to help survivors extract meaning and guidance for managing their survivorship care post-treatment.  Also of note is that this chapter specifically acknowledges the challenge and need to provide follow-up care to cancer survivors that includes coordination of care between oncology specialists and primary care physicians.  This fundamental challenge must be addressed,

given that the number of cancer survivors in this country requiring follow-up care related to their survivorship far surpasses what the oncology workforce can provide.

 Concurrent with this recognized need to provide cancer survivors with care plans post-treatment is the corresponding need to develop either evidence-based or consensus-approved clinical practice guidelines that would be incorporated into these care plans, including guidelines for medical surveillance and follow-up and need-based referrals for psychosocial and behavioral programs for cancer survivors.  This need was also highlighted in the IOM Lost in Transition report as one of its 10 key recommendations as follows:

 “Health care providers should use systematically developed evidence-based clinical practice guidelines, assessment tools, and screening instruments to help identify and manage late effects of cancer and its treatment.  Existing guidelines should be refined and new evidence-based guidelines should be developed through public- and private-sector efforts” [Recommendation 3, Executive Summary, page 5].

 Although formulating these clinical practice guidelines must involve a national effort that would transcend any state-level cancer control plan for cancer survivors, the development of a comprehensive state-level plan for cancer survivors must acknowledge this need and promote the development and utilization of such guidelines at every opportunity.  For this reason, another main objective highlighted in this plan focuses on this key challenge.  This challenge is especially evident for cancer survivors post-treatment, where evidence-based programs and clinical practice guidelines are lacking, especially in the areas of psychosocial and behavioral oncology.  As noted recently by Jacobsen [5] when discussing the selection of such programs as referral resources within cancer survivorship care plans:

 

“Ideally, the interventions(s) selected should have been evaluated and found to be efficacious in RCTs conducted with post-treatment cancer survivors.  In the likely absence of such evidence, it may be necessary to rely on RCTs or lower level evidence from research conducted with patients undergoing primary cancer treatment or patients with other chronic conditions (page 4425)” [italics added]. 

 

Clearly, we can and should do better than relying on “lower level evidence” to make these referrals to community-based psychosocial and behavioral programs for cancer survivors, or to refer cancer survivors post-treatment to programs where the evidence base comes from “other chronic conditions” or “patients undergoing primary cancer treatment."  Accordingly, another key objective included in this plan is to promote more intervention research and program evaluation that could contribute to the development of evidence-based clinical practice guidelines and program referrals for cancer survivors.

 

Also noteworthy is that many organizations and advocacy groups now acknowledge that cancer survivorship begins at the time of diagnosis, and that the definition of a cancer survivor should include family members, friends and the caregivers of a cancer patient or survivor.  The Colorado Cancer Coaltion (CCC) also embraces this definition of cancer survivorship, which is shared by the National Cancer Institute, the American Cancer Society, the Lance Armstrong Foundation, the Centers for Disease Control and Prevention and the National Coalition for Cancer Survivorship.  Thus, when we refer to “cancer survivors” in this chapter, it is always within the context of this broader definition of cancer survivorship.

 

While the CCC does indeed embrace this more encompassing definition of cancer survivorship, we are also acutely aware of the need to target resources and programs across this continuum of cancer survivorship, including targeted resources and programs for newly diagnosed cancer patients, those who are in active treatment, cancer survivors post-treatment, as well as the caregivers and family members of cancer patients and survivors.  As a case in point, newly diagnosed cancer patients need resources in the moment to help them make informed treatment decisions (e.g., treatment efficacy, treatment side-effects, complimentary and alternative medicine).  Patients in active treatment require resources and programs to help them navigate the health care system and manage treatment side effects, economic or insurance issues, and psychosocial sequelae during treatment.  Cancer survivors post-treatment may require similar but also different resources and programs to help them prepare for life beyond cancer treatment, including medical surveillance and coordination of care post-treatment, managing longer-term physical, emotional and social functioning, late effects of cancer treatment, return to work issues, genetic counseling services, reproductive health programs and services and behavioral programs for cancer survivors (e.g., diet, nutrition and physical activity).  In contrast, while caregivers and family members of cancer patients and survivors can be impacted by many of these same issues and concerns, they may also benefit from additional resources and programs to help them protect their own health and well-being and to regain or maintain a sense of balance in their lives.  We acknowledge here that these differences exist to emphasize the key point that when information and educational resources and service programs are being recommended in this chapter, it is with the understanding that we are also recommending that these resources and programs be targeted and made available across the full spectrum of the cancer care continuum for survivors.

 

 

 

In addition to the above, we also acknowledge that within each phase of the cancer care continuum, programs and resources for cancer survivors should embrace several concurrent and complementary goals, including helping cancer patients prepare for their journey as cancer survivors, beginning at the time of diagnosis and beyond, and improving survivorship care across multiple domains (medical, psychosocial and behavioral).  Ultimately, the long range goal should be to enhance the quality of life (QOL) of cancer survivors, which is likewise recognized as having multiple domains (see Figure 2) that encompass physical, psychological, social and spiritual health and well-being [6].  When viewed from this perspective, the array of programs and resources that derive either directly or indirectly from a state-level plan for cancer survivors must also be multidisciplinary, drawing upon the expertise and contributions of oncology specialists, primary care practitioners, psychosocial and behavioral experts, program administrators, legislators and funding agencies, as well as cancer survivors and other advocates, stakeholders and constituencies that share this fundamental commitment to improving cancer survivorship in Colorado.

 

By way of summary, Table 2 lists the eight key objectives that have been identified to improve cancer survivorship in Colorado, including increasing the number of available information and educational resources (Objective 1) and service programs (Objective 3) for cancer survivors and promoting their use (Objectives 2 and 4); increasing the number of cancer survivors who receive treatment summaries and care plans (Objective 5); assisting in the development and/or dissemination of clinical practice guidelines for cancer survivors (Objective 6); promoting more program evaluation and cancer outcomes and intervention research in cancer survivorship (Objective 7); and finally, enhancing advocacy efforts for cancer survivors in Colorado (Objective 8).  To achieve these eight main objectives, 56 different strategies have been identified.  However, there are fundamental commonalities across all of these strategies that encompass multiple objectives and unfold in logical fashion.  As shown in Table 2, these common strategies include assessing available resources or programs relevant to each objective; expanding or developing new resources and programs where gaps exist; creating a centralized resource or clearinghouse to facilitate access to these resources and programs; and conducting professional educational programs, community summits and other outreach efforts to help promote the use and extend the reach of these resources and programs.  Taken together, these key objectives and strategies highlight the many significant opportunities that exist for improving cancer survivorship in Colorado as a major priority of the CCC.

Finally, two cross-cutting themes have also been emphasized in this chapter.  The first involves the fundamental need to develop and promote use of information and educational resources and service programs that will be responsive to Colorado's underserved and diverse population of cancer survivors.  The second involves the parallel need to develop and promote use of information and educational resources and service programs that specifically target rehabilitation, palliative care and end-of-life care.  The Task Force was unanimous in its recommendation that these two themes receive special emphasis to underscore the pressing need to make significant and sustainable progress in both of these high priority areas.