The Cancer Survivorship Movement: From Idealism to Reality

TON - September 2010, Vol 3, No 6 — October 11, 2010

Over the past three decades, there has been a gradual yet steady increase in survivorship awareness, resources, and services. Although none of this has happened easily or rapidly, there is no doubt that the concept of cancer survivorship is here to stay. If this concept or social movement could be superimposed onto Erikson’s Stages of Development,1 it could be said that survivorship has grown from the stage of infancy (drive and hopefulness), through adolescence (idealism and search for identity), and into middle adulthood (meaningful work and stability). The challenge now is to continue the cycle of growth. This continued growth will happen by recognizing the multiple dimensions of survivorship and adapting to its complexities.

Concepts and definitions

Although numerous reports have been published about different aspects of survivorship, inconsistencies remain around semantics, time frames, and issues. Who is or who is not a cancer survivor? What is and what is not survivorship? When does survivorship begin, and when does it end? Who is responsible for survivorship care, and who pays for it? And does any of this really matter? The questions go on and on. Maybe these arguments surrounding the semantics and issues of survivorship could actually be viewed as progress. Rowland writes: “Arguably, without substantial numbers of survivors, issues of survivorship would never have become of interest; the focus of research would have remained, as it had in the past, largely on trying simply to enable an individual to become a survivor, not what the future of that person’s life might be like.”2 Thus, as the numbers of survivors increase, so does the need for different models of care. Attention to survivorship is no longer a luxury but a responsibility, and this certainly could be perceived as progress.

Progress can be seen among survivors, as they struggle with new identities. Individuals diagnosed and treated for cancer tend to adopt labels that have specific meaning to themselves as individuals. Take the term survivor. Those who like the term survivor really love it. Those who dislike this label really hate it. So other labels are used, such as advocate, thriver, veteran, exceptional cancer patient, sufferer, warrior, cancer conqueror, or cancer killer. Many of these descriptions illustrate a philosophic and qualitative approach to survival and are defined within the context of a continuum: According to the National Coalition for Cancer Survivorship

(NCCS), “From the time of its discovery and for the balance of life, an individual with cancer is a survivor.”3 Other definitions of survivor, for example, a cured patient or one who has completed treatment, are more often used by researchers and clinicians who are defining a specific population for specialized care.

Rather than defining the person, one can also describe the experience. Survivors, advocates, researchers, and clinicians regularly focus on the concept of survivorship in their work. Survivorship is often more about how one survives rather than if one is considered cured. The original definition created by the NCCS, “living with, through, and beyond cancer,”4 is seen more as an individual, dynamic progression of events rather than a static clinical stage. In addition, it encompasses physical, psychological, social, and spiritual domains, and includes “secondary survivors,” that is, personal and professional caregivers.2,6,7 For many healthcare providers, these definitions seem too nebulous and all encompassing to be useful when directing research or delivering clinical care. Thus, from a more pragmatic and quantitative perspective, survivorship can also be defined in more concrete terms, such as5:

  • A time frame (eg, 2, 5, or 10 years after diagnosis)
  • A stage or phase that usually begins after initial treatment ends
  • An outcome of treatment (ie, no evidence of disease).
  • Practical applications

Although opinions differ surrounding semantics and priorities, there are still many opportunities to introduce survivorship care into clinical practice. The important factor is to get started and do something. Whether you are in an academic setting, community hospital, freestanding cancer center, or rural clinic, a survivorship program is possible.

Grant and Economou provided helpful hints to get started in their article, “Cancer Survivorship: Current Issues in Providing Survivorship Care.”7 They suggested starting small, doing a needs assessment, defining simple goals, and re-evaluating existing programs. An additional suggestion would be finding champions in your practice setting who will support your goals and are in positions of power to help make them happen.

Because survivorship is a relatively new concept with few guidelines, a good place to begin is with existing resources. Just looking at the physiologic fallout from cancer treatment is a huge area by itself, taking up entire articles and textbooks. Resources for healthcare professionals and cancer patients and survivors are listed in the Resource Guide (page 34). In addition, several professional publications provide further information (Table).

The newest model of delivering survivorship care is to establish a follow-up clinic. Those involved in care of pediatric oncology patients were the first to identify the need for continual followup of their young population and developed the idea of survivor clinics. Their areas of concern included long-term or lingering effects of treatment, such as fatigue, neuropathies, and pain, along with late or delayed effects, including recurrence, second cancers, and premature onset of organ or system failures. Those in adult oncology are now recognizing the need for this type of care. The LIVESTRONG Survivorship Centers of Excellence Network is currently exploring methods to advance the field of survivorship care by supporting collaboration among comprehensive cancer centers and community partners. High priority is given to the development of models of care that will enhance post-treatment follow-up. Examples of these models include8:

  • Multidisciplinary clinics where the survivor is seen by many different providers during the same clinic visit
  • Disease- or treatment-specific clinics where all survivors with a single type of cancer (lymphoma) or a special type of treatment (transplant) are seen
  • Consultative services where survivors are seen during a one-time consultation to assess survivorship issues and develop a survivorship care plan
  • Integrated-care models where long-term care is an extension of the survivors’ care with their original oncology team
  • Shared-care models where any combination of providers—oncologists, surgeons, primary care providers, nurse practitioners, physician assistants—develop methods to share responsibilities for long-term follow-up.

Each model has advantages and disadvantages for successful implementation. The challenge is to select the right model for the specific type of institution or program.

Remaining questions

Whether providers are counseling one-on-one, facilitating support groups, developing educational opportunities, creating survivorship care plans, or monitoring for long-term and late effects of treatment, all are contributing pieces to the overall care of cancer survivors and their loved ones. Yet, many questions remain: Who will care for survivors and who will pay? What models of care will work best in various clinical environments and with available resources? While we continue to wait for evidence-based guidelines and standards for survivorship care, we must remember that time is of the essence for our survivor population. We have come a long way over the past three decades, but we still have a long way to go.

References

  1. Harder AF. The developmental stages of Erik Erikson. 2009. www.learningplaceonline.com/stages/organize/Erikson.htm. Accessed July 28, 2010.
  2. Rowland JH. Survivorship research: past, present, and future. In: Ganz PA, ed. Cancer Survivorship: Today and Tomorrow. New York, NY: Springer; 2007.
  3. NCCS Charter. Silver Spring, MD: National Coalition for Cancer Survivorship; 1986.
  4. Leigh S. Myths, monsters, and magic: personal perspectives and professional challenges of survival. Oncol Nurs Forum. 1992;19:1475-1480.
  5. Leigh S. Cancer survivorship: a nursing perspective. In: Ganz PA, ed. Cancer Survivorship: Today and Tomorrow. New York, NY: Springer; 2007.
  6. Grant M, Economou D, Ferrell B, Bhatia S. Preparing professional staff to care for cancer survivors. J Cancer Surviv. 2007;1:98-106.
  7. Grant M, Economou D. Cancer survivorship: current issues in providing survivorship care. The Oncology Nurse. Sep/Oct 2009;2:1,14,16.
  8. Baker S, Jacobs L, McCabe M. Models of cancer survivorship care. Presented at: Lance Armstrong Foundation Cancer Survivorship Training Institute: Excellence in Cancer Survivorship Care: Developing Sustainable Programs; December 2009; Austin, TX.

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