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ABstrAct
In the decade since the Institute of Medicine’s 2006 landmark report, enti- tled From cancer patient to cancer survi- vor: Lost in transition, cancer survivorship increasingly has become a distinct phase in the cancer journey. While much progress has been made toward creating a system of care that optimally addresses survivors’
needs, significant gaps remain. An inter- national symposium to discuss and explore global challenges in cancer survivorship care was held at the Canadian Association of Nurses in Oncology (CANO/ACIO) conference in Calgary, Alberta, in October 2016. In this paper, we summarize presen- tations from that symposium, exploring cancer survivorship care from Canadian, American, and International perspectives, and describing challenges, issues and gaps.
Strategies are also discussed for oncology nurses, individually and collectively, to pro- vide future leadership in shaping survivor- ship care to be more person centered and equity oriented.
iNtrODuctiON
In the decade since the Institute of Med- icine’s 2006 landmark report, From cancer patient to cancer survivor: Lost in transition (Hewitt, Greenfield, & Stovall, 2006), cancer survivorship has increas-
ingly become a distinct phase in the can- cer journey. Although much progress has been made toward creating a system of care that optimally addresses survivors’
needs, significant gaps remain. An in- ternational symposium to discuss and explore global challenges in cancer survi- vorship care was held at the Canadian As- sociation of Nurses in Oncology (CANO/
ACIO) conference in Calgary Alberta, in October 2016. In this paper, we summa- rize presentations from that symposium, exploring cancer survivorship care from Canadian, American, and International perspectives, describing challenges, is- sues and gaps. To begin, Dr. Margaret Fitch lays the foundation for examining survivorship care by providing an over- view of survivor definitional issues, un- met needs, models of care, and oppor-
tunities for oncology nurses to enhance survivorship care. Canadian, American, and international perspectives are then discussed, each providing insights into some of gaps and resources available to move the survivorship agenda forward.
Finally, opportunities for oncology nurs- es, individually and collectively, to pro- vide leadership into the future to shape survivorship care to be more person cen- tred and equity oriented are discussed.
cANcer surViVOrsHiP
Margaret I. Fitch, RN, PhD
Advances in science and technology in cancer care have resulted in a growing cadre of individuals who have been diag- nosed with the disease and are now liv- ing longer after treatment, with controlled disease or no clinical evidence of disease, than in previous decades. It is estimated there are more than a million cancer survi- vors in Canada (Canadian Cancer Society, 2016). This cadre is expected to continue to grow, as the Canadian population ages and the numbers of individuals diagnosed with cancer escalate over the next 20 years.
The word ‘cancer’ reflects more than 200 diseases, each with its own trajectory of experiences. Survival pathways dif- fer based on the type of cancer and the course of treatment. Some individuals live many years after treatment without evidence of disease while others experi- ence intermittent periods of disease or may develop a second primary cancer.
Others may experience unremitting dis- ease that is controlled. It is rather widely accepted that an individual is considered a cancer survivor from the time of diag- nosis, and throughout the balance of his or her life, despite the traditional medi- cal view of survivorship beginning five years after treatment ends. Additionally, family members, friends and caregivers are effected by the experience and are included in the definition.
cANO-AciO/ONs/isNcc JOiNt sYMPOsiuM At tHe cANO-AciO cONFereNce iN cAlGArY AlBertA
Global perspectives on cancer survivorship: From lost in transition to leading into the future
by Tracy L. Truant, Margaret I. Fitch, Colleen O’Leary, Jan Stewart
ABOut tHe AutHOrs
Tracy L. Truant, RN, MSN, PhD(c), Doctoral Candidate, University of British Columbia School of Nursing, T201-2211-Wesbrook Mall, Vancouver, BC V6T 2B5
Margaret I. Fitch, RN, PhD, Professor (Adjunct), Lawrence Bloomberg Faculty of Nursing, University of Toronto, 155 College Street, Toronto, ON M5T 1P8
Colleen O’Leary MSN, RN, AOCNS®, Associate Director Nursing Education James Cancer Hospital, Associate Director Evidence-Based Practice Ohio State University Wexner Medical Center, 660 Ackerman Rd., Suite 574, Columbus, Ohio 43202
Jan Stewart, BScN, MHS, CON(c), Director of Operations Oncology, Sunnybrook Health Science Centre, 2075 Bayview Ave., Toronto, ON M4N 3M5
Corresponding author: Tracy Truant, RN, MSN, PhD(c), T201-2211-Wesbrook Mall, Vancouver, BC V6T 2B5
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Survivorship has been conceptual- ized as having phases (e.g., early, late, long-term; active, extended, permanent) and demanding transitions on the part of the individual over time. The period immediately after primary cancer treat- ment can be especially challenging, as individuals recover from the impact of their treatment. It can also be a time when individuals are no longer visit- ing the specialty cancer centres with the same frequency and feeling a senseof being on their own, uncertain about what to do regarding follow-up care and support. For some, the realities of having had cancer and now needing to carry on with their lives begins to have an impact in new and different ways than when they were going through the actual course of treatment.
Side effects from treatment may affect the individual after treatment is finished in both the short term as well as the long term. Examples of these effects include
fatigue, lymphedema, pain, cognitive alterations, and gastrointestinal changes.
Research studies are being conducted with greater frequency describing the impact of these late and long-term effects on quality of life and living after a can- cer diagnosis. (Quotes from qualitative work by the author are shown in Table 1.) Dealing with side effects can influence relationships, return to work, and one’s sense of self. For some, the issues are resolved in the short term, while others carry the burden of the impact for a num- ber of years (Hewitt, Greenfield & Stovall, 2006). Clearly, the cancer survivor popu- lation is a vulnerable group.
Despite the emerging understanding about the needs of cancer survivors, there are challenges in providing appropri- ate care and support for this population:
a general a lack of awareness about sur- vivor needs on the part of cancer health- care professionals, as well as the general public; scare funding for research, edu- cation, and survivor programs; lack of clarity regarding who is responsible for follow-up or what is the best model for providing survivorship care. A number of models are emerging that range from special clinics in cancer centres to shared care approaches between specialists and general practitioners in the community.
There is a need for additional evaluation of these approaches to determine what best practices are and whether these would differ depending on the disease type. Is the same model going to work for individuals with breast cancer as for indi- viduals with hematologic cancer?
Oncology nurses are in an ideal posi- tion to enhance survivorship care. Nurses in cancer centres are able to assess the needs of individuals as they approach the end of their treatment period and help anticipate the requirements for follow-up care and recovery. Individuals can be chal- lenged in their search to return to normal life and find their bodies and attitudes are different than before they had cancer; in reality, they will need to find a ‘new nor- mal’. Nurses are able to offer emotional support to individuals, as they transition from the cancer centre to the community, helping them to anticipate some of the psychosocial issues ahead, and provide the education necessary for the person to engage in relevant self-care practices.
Table 1: In the words of survivors: quotes taken from various qualitative studies conducted by the author
Types of challenges experienced by survivors
Illustrative quotes
Facing
survivorship Had someone told me, I wouldn’t have believed that life after cancer could be more difficult in many ways than life with cancer. I thought I was done with cancer, but I have been dealing with the side effects of cancer and its treatment for over a year now.
Emotional
distress I was devastated by the surgery. I just wanted to shrink inside myself. I needed to regain my physical balance so I could get back my emotional balance… I had a really hard time emotionally after treatment. Everything fell apart on me. I think it was really hard for the family and for my husband.
Here I’d gone through so much, but now something else was going on.
Sense of self I felt like a broken tea cup. All the pieces were lying on the floor and I know I could glue them back together, but I also knew that the cup would be fragile and never quite the same again.
Fatigue ...It does get frustrating when you look back over a year and you have accomplished nothing and you’re still in the same state, you know. I would just love to feel normal again... you just don’t have the normal energy. It gets very, very frustrating and it can get you down. Because it’s stopping you socially, mentally, and physically from being who you really are...
Persistent or
chronic pain Dealing with my pain occupied my whole day. I had to adjust my work schedule and the time I spent with friends to accommodate the amount of pain I was feeling… I wasn’t able to tolerate the many hours needed to work full-time, and I missed many social events because I couldn’t count on feeling well enough for the entire outing.
Roles relationships and sexuality
My husband and I only made love a few times since my mastectomy. I felt uneasy about the scars and worry he’s not comfortable with them either. I don’t feel as sexy as I used to; it’s going to take time to get there again. If I don’t feel at ease with my new body, how will he?
You know, I don’t think a man can [find this attractive]… if it was your husband and he loves you before, I understand, yes, you know, he’ll still love you. But you know, I don’t think a man will go out with a woman who had a hole in her stomach and, you know, a bag on her leg.
Return to work Going back to work was challenging. I worried about going back because I was not thinking entirely correctly and I was tired… and it was a challenge to actually go back… no one really understood how I was feeling and why I was not functioning like I used to. I was always the one with the energy and the ideas.
Fear of
recurrence It fades into the background after a while, but never goes away completely…
and when something happens, like a story in the newspaper or a friend gets diagnosed, it comes right back in front of me.
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Nurses can also provide leadership for survivorship care both in cancer centres and in the wider community by engaging in program development, research, and quality improvement proj- ects. Engaging survivors in these types of initiatives can help to ensure rele- vant approaches are implemented. The
‘nursing voice’ can play a strong advo- cacy role drawing attention to survivor- ship issues and relevant solutions for providing care and support.
Cancer is a journey of transitions and change; and that change does not stop at the end of treatment. We are still learning about the journey of survi- vorship and how it varies from individ- ual to individual. However, we do know that the population of cancer survivors is growing and they are not a homoge- neous group. Their needs vary and they are most likely going to benefit from a tailored approach to care and support.
We also know that they have a lived experience to share from which we can learn to improve care delivery.
reFereNces
Canadian Cancer Society (2016). Canadian Cancer Statistics. Toronto: author.
Hewitt, M. E., Greenfield, S., & Stovall, E.
(2006). From cancer patient to cancer survivor: Lost in transition. Washington, D.C: National Academies Press, Institute of Medicine.
cANcer surViVOrsHiP cAre iN cANADA:
OPPOrtuNities FOr ONcOlOGY NursiNG leADersHiP
Tracy L. Truant, RN, MSN, PhD(c) The backdrop against which cancer survivorship care in Canada is unfold- ing is increasingly complex. Although there are pockets of excellence, a vari- ety of factors is at play, creating gaps in cancer survivorship systems of care to optimally meet the broad spectrum of survivors’ needs. It is important to understand what is shaping these gaps, to ensure our efforts also address the root causes of the issues, rather than simple “work-arounds” or patches.
In this section, I offer perspectives on some of the gaps in survivorship
care, as well as key national organiza- tions and initiatives working to bridge these gaps in Canada. The current and future role of oncology nurses and the Canadian Association of Nurses in Oncology (CANO/ACIO) is also dis- cussed in moving the cancer survivor- ship agenda forward.
The current landscape. In gen- eral, Canada has a patchy, disjointed, non-system of survivorship care.
Survivors must self-negotiate specialty, primary care, prevention and comple- mentary medicine systems of care to meet their holistic needs. For many, the non-system of care is one more barrier to negotiate after primary treatment ends (Hewitt et al., 2006; Sofaer, 2009).
Within existing survivorship care mod- els and resources, the dominant focus is on disease surveillance (e.g., recurrence monitoring, addressing physical late effects), often at the expense of whole person care (e.g., psychosocial, emo- tional, practical, spiritual, informational needs). Growing evidence indicates that survivors’ psychosocial, informa- tional, supportive care, and health pro- motion needs rarely are met (Campbell et al., 2011; Canadian Partnership Against Cancer, 2008; Grunfeld & Earle, 2010; Hewitt et al. 2006; Hodgkinson, Butow, Hobbs, & Wain, 2007; Park &
Rosenstein, 2014; Willems et al., 2016).
Efforts to extend the reach of survi- vorship services across the country have focused on increasing access to care without consistently considering the structural factors that underlie access issues, such as poverty, rural/remote setting, racialization, gender, immi- grant status, and socioeconomic sta- tus. Strategies have been implemented, such as nurse navigators, to increase access and support survivors to move through the system, which, without con- sideration of what is causing the lack of access to care for survivors, will remain a patch for a broken system. The social determinants of health (SDH) rarely are considered in designing survivorship models of care and resources. We see the effects of this in growing inequities among survivors, particularly in rural and remote settings, socio-economically disadvantaged, older, advanced disease at diagnosis, aboriginal groups, ethnic
minorities and immigrants (Ahmed &
Shahid, 2012; Blinder & Griggs, 2013;
CPAC, 2014; Casillas & Ayanian, 2011;
Maddison, Asada & Urquhart, 2011;
Palaty, 2008).
Survivors’ voices have been mini- mally included in the development of survivorship care models and resources, and these voices are often over-repre- sented by those with socioeconomic advantage and other positions of priv- ilege (Brooks, 2009; Gould et al., 2009;
Palaty, 2008; Skinner, 2012). Further, despite nearly a decade of progress in developing survivorship care systems and models, we do not yet have a good understanding of how survivors access and use health care resources, nor what they envision an optimal system of care should look like. It is important to more fully understand this before we design or evolve survivorship care models and resources. It is apparent that much work is yet needed to develop our sur- vivorship care system to be more equita- ble and high quality for all.
National initiatives. The good news is that significant work is in progress to address these and other gaps at local and national levels. There are many organizations addressing survivorship in Canada. Although too many to men- tion here, they generally range from survivor advocacy groups lobbying for political and financial attention for the survivorship phase, to major cancer treatment centres, where local survivor- ship models and programs are being developed, stimulated by overcrowding and fiscal restraints in the treatment-fo- cused setting.
The Canadian Partnership Against Cancer (CPAC), Canada’s national can- cer control strategy organization, is the major organizational umbrella under which many national survivorship ini- tiatives and resources are housed (see www.partnershipagainstcancer.ca). In partnership with a host of local, provin- cial, and national organizations, CPAC’s survivorship initiatives range from setting a pan-Canadian survivorship agenda (CPAC, 2008), to testing of a range of models of care across the coun- try, to developing resources such as the Cancer and Work website (Maheu
& Parkinson, n.d.). Other important
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resources, such as guidelines to direct the organization and structure of survi- vorship services, and the psychosocial best care practices for survivors (Howell et al., 2011), are important contributions to addressing survivorship care gaps.Survivorship research also has been leveraged, including the creation of a national survivorship research agenda and a consortium (Kazanjian, Doll, &
Smillie, 2010) that brings together an inter-professional multi-stakeholder community to address key survivorship research priorities (see www.ccsrc.ca).
CANO/ACIO and survivorship. The Canadian Association of Nurses in Oncology (CANO/ACIO), the national organization to advance oncology nurs- ing excellence through practice, edu- cation, research and leadership for the benefit of all Canadians, has an import- ant role to play in the survivorship land- scape in Canada. Currently, CANO/
ACIO supports high quality survivorship care through a number of key initiatives.
These initiatives include, a) enhancing oncology nurses’ survivorship expertise through on-line education programs, webinars, and conference abstracts; b) embedding oncology nursing survi- vorship competencies across various standards and the national oncology nursing certification exam blueprint;
c) establishing a survivorship special interest group (SIG); d) influencing
policy though positioning members on key advisory and/or working groups that impact survivorship (e.g., distress screening, navigation, work and can- cer); and e) articulating CANO/ACIO’s participation in the international arena to support oncology nurses globally to improve cancer survivorship.
Currently, CANO/ACIO’s Survivor- ship SIG is taking a leadership role to move the survivorship agenda forward by identifying key priorities for nursing action over the next three to five years (see Table 2).
Looking to the future. To support the priorities for action identified by the survivorship SIG, CANO/ACIO is working to strengthen additional areas that will support nursing’s contribu- tion to high quality survivorship care.
Foundations for oncology nursing prac- tice, such as CANO/ACIO’s Standards of Care (CANO, 2001) and Specialized Oncology Nursing Practice Standards and Competencies (CANO, 2006) are being modernized to embed survivor- ship across the cancer trajectory, nurs- ing roles (i.e., RN, RPN/LPN, NP), and settings (e.g., specialty cancer treatment, primary care, home care). Critically examining the nurse navigator role, and developing a position statement that embeds navigation across all nurs- ing roles also will add clarity and future direction.
To enhance nurses’ survivorship knowledge and skills, partnerships will be enhanced with organizations to access and/or co-develop educational resources (e.g., The de Souza Institute, The Canadian Cancer Society, Survivor advocacy groups). CANO/ACIO’s Survivorship SIG may function as a community of practice for ongoing mentoring and sharing of knowledge, and members may share their exper- tise to inform the development of prac- tice and education resources by partner organizations.
Survivorship research by CANO/
ACIO members should be linked into existing structures, such as the Canadian Cancer Survivorship Research Consortium (CCSRC) to pro- mote opportunities for synergy and knowledge translation across projects, wherever possible. Engaging survivors on research teams, and measuring out- comes that are important to survivors (e.g., Patient reported experience mea- sures [PREMs] and Patient reported outcome measures [PROMs]) will be an important contribution by oncology nurses to the growing body of knowl- edge about survivorship.
To influence policy and promote advocacy efforts, it will be important for CANO/ACIO to strategically place members at policy decision-making tables, in particular, those influenc- ing survivorship models of care design.
Having a nursing voice at these tables will ensure initiatives are tailored to address survivors’ holistic needs, and that an equity lens is applied by advocat- ing for attention to the SDH and other factors that are shaping survivorship care systems. Finally, moving forward to enact CANO/ACIO’s International framework will engage CANO/ACIO members in projects and partnerships to optimize oncology nurses’ capacity to optimize survivorship care globally.
reFereNces
Ahmed, S. & Shahid, R.K. (2012).
Disparity in cancer care: A Canadian perspective. Current Oncology, 19(6), e376.
Blinder, V.S. & Griggs, J.J. (2013). Health disparities and the cancer survivor.
Seminars in Oncology, 40(6), 796–803.
http://dx.doi.org.ezproxy.library.ubc.
ca/10.1053/j.seminoncol.2013.09.003 Table 2: CANO/ACIO Survivorship special interest group: Priorities for action
Focus Examples
Practice: Identify and address key survivor/family needs
• Unique needs, such as fear of recurrence, return to work, sexual health, late/long term effects
• Unique populations (e.g., adolescent and young adult)
• Self-care and empowerment Education and
mentorship • Reaching across care silos (e.g., community, others caring for survivors)
• Networking for nurses in survivorship care, across silos Research and
knowledge translation
• Guidelines, models of care, resources for practice, interventions to address survivor needs
Advocacy and
communication • Early integration of survivorship care
• Survivorship across all nursing roles
• Align nursing roles with survivor needs across trajectory
• Interprofessional survivorship care models, collaborate with community partners
• Position oncology nurses at key national policy decision-making tables
• CANO/ACIO survivorship position statement
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Brooks, C.M. (2009). Aboriginal women’s visions of breast cancer survivorship:
Intersections of race(ism)/Class/Gender and “...diversity as we define it”. ProQuest, UMI Dissertations Publishing.
Campbell, H.S., Sanson-Fisher, R., Turner, D., Hayward, L., Wang, X.S., & Taylor-Brown, J. (2011). Psychometric properties of cancer survivors’ unmet needs survey. Supportive Care in Cancer, 19(2), 221–230.
Canadian Association of Nurses in Oncology (2001). Standards of care, roles in oncology nursing and role competencies. Retrieved from http://c.ymcdn.com/sites/cano.
m a l a c h i t e - m g m t. c o m / r e s o u r c e / resmgr/standards/Oncology_Nursing_
Standards_o.pdf
Canadian Association of Nurses in Oncology (2006). Practice standards and competencies for the specialized oncology nurse. Retrieved from http://c.ymcdn.
com/sites/cano.malachite-mgmt.com/
resource/resmgr/standards/CONEP_
Standards2006September.pdf
Canadian Partnership Against Cancer (n.d.). The Canadian Partnership Against Cancer. Accessed at http://www.
partnershipagainstcancer.ca/
Canadian Partnership Against Cancer (2014). Examining Disparities in Cancer Control: A System Performance Special Focus Report. Toronto, ON: Author.
Retrieved from www.cancerview.ca/
systemperformancereport
Canadian Partnership Against Cancer, Cancer Journey Action Group (2008).
Canadian invitational cancer survivorship workshop: Creating an agenda for cancer survivorship: Final report. Toronto, ON: Author. Retrieved from http://
www.partnershipagainstcancer.ca/
wp-content/uploads/2.4.0.2.6-CPAC_CJ_
Survivorship_0308_Final_E.pdf
Casillas, J, & Ayanian, J. Z. (2011).
Disparities in care for cancer survivors.
In M. Feuerstein & P.A. Ganz (Eds.), Health Services for Cancer Survivors (pp.153–168). Bethesda, MD: Springer.
doi:10.1007/978-1-4419-1348-7_7
Gould, J., Sinding, C., Mitchell, T.L., Gustafson, D.L., Peng, I., McGillicuddy, P., … Burhansstipanov, L. (2009).
“Below their notice”: Exploring women’s subjective experiences of cancer system exclusion. Journal of Cancer Education, 24(4), 308–314.
doi:10.1080/08858190902997324
Grunfeld, E. & Earle, C.C. (2010). The interface between primary and oncology specialty care: Treatment through survivorship. Journal of the National Cancer Institute Monographs, 40, 25–30.
Hewitt, M.E., Greenfield, S., & Stovall, E.
(2006). From cancer patient to cancer
survivor: Lost in transition. Washington, D.C: National Academies Press, Institute of Medicine.
Hodgkinson, K., Butow, P., Hobbs, K.M., &
Wain, G. (2007). After cancer: The unmet supportive care needs of survivors and their partners. Journal of Psychosocial Oncology, 25(4), 89–104.
Howell, D., Hack, T.F., Oliver, T.K., Chulak, T., Mayo, S., Aubin, M., …Tompson, M.
(2011). A Pan-Canadian Practice Guideline Pan-Canadian Guidance on Organization and Structure of Survivorship Services and Psychosocial-Supportive Care Best Practices
for Adult Cancer Survivors. Toronto, Canada: Canadian Partnership Against Cancer (Cancer Journey Action Group) and the Canadian Association of Psychosocial Oncology. Accessed at http://www.
capo.ca/pdf/ENGLISH_Survivorship_
Guideline_Sept2011.pdf
Kazanjian, A., Doll, R., & Smillie, K. (2010).
Fostering Cancer Survivorship Research in Canada—Proceedings from National Consortium. Vancouver, Canada: Canadian Partnership Against Cancer/British Columbia Cancer Agency. Accessed at http://med-fom-spph.sites.olt.ubc.ca/
files/2013/11/Consortium_Proceedings.pdf Maddison, A R., Asada, Y., & Urquhart, R.
(2011). Inequity in access to cancer care: A review of the Canadian literature. Cancer Causes & Control, 22(3), 359–366.
Maheu, C., & Parkinson, M. (n.d.). Cancer and Work. Toronto, Canada: Canadian Partnership Against Cancer/The British Columbia Cancer Agency. Retrieved from https://www.cancerandwork.ca/
Palaty, C. (2008). The national forum on cancer care for all Canadians: Improving access and minimizing disparities for vulnerable populations in Canada. Forum proceedings. Vancouver, Canada: British Columbia Cancer Agency/Canadian Partnership Against Cancer. Accessed at http://www.partnershipagainstcancer.ca/
wp-content/uploads/2.4.0.2.8.1-National_
Forum_Proceedings_Part1_Final_E.pdf Park, E.M. & Rosenstein, D.L. (2014).
Living with advanced cancer: Unmet survivorship needs. North Carolina Medical Journal, 75(4), 279.
Skinner, D. (2012). The gendering of cancer survivorship. Health, Culture and Society, 3(1), 63–76.
Sofaer, S. (2009). Navigating poorly charted territory: Patient dilemmas in health care
“non-systems”. Medical Care Research and Review, 66(1), 75S–93S.
Willems, R.A., Bolman, C.A. W., Mesters, I., Kanera, I. M., Beaulen, A.A.J.M., &
Lechner, L. (2016). Cancer survivors in the first year after treatment: The prevalence and correlates of unmet needs in different domains. Psycho‐oncology, 25(1), 51–57.
doi:10.1002/pon.3870
surViVOrsHiP iN tHe uNiteD stAtes
Colleen O’Leary, MSN, RN, AOCNS®
In the United States, the National Cancer Act of 1937 established the National Cancer Institute (NCI) as the federal government’s primary agency to address research and training needs for the cause, diagnosis, and treatment of cancer. The NCI provides resources for patients, families and providers.
The Office of Cancer Survivorship at the NCI provides statistics regarding cancer in the United States. According to the NCI, as of January 2016, there are 15.5 million cancer survivors in the U.S., which is 48% of the can- cer population. This is estimated to increase to 20 million by 2026 (National Cancer Institute Division of Cancer Control and Population Sciences, 2016).
Furthermore, 68% of survivors are liv- ing longer than five years after diag- nosis, 44% longer than 10 years after diagnosis, and 20% longer than 20 years after diagnosis (National Cancer Institute, 2016).
There are several organizations in the United States that offer support and education regarding survivorship.
These include the American Cancer Society (ACS), the American Society of Clinical Oncology (ASCO), the Centers for Disease Control (CDC), the National Cancer Institute, the National Coalition for Cancer Survivorship (NCCS), the National Comprehensive Cancer Network (NCCN), and the Oncology Nursing Society (ONS).
The American Cancer Society pro- vides a plethora of information for per- sons faced with cancer (American Cancer Society, n.d.). Their survivorship resources include information on living well during treatment, finding support during treatment, moving on and being healthy after treatment, and understand- ing recurrence. ACS also offers a variety of resources pertaining to survivorship including several templates for survivor- ship care plans. In addition, people can view videos of other cancer survivors talking about their cancer journeys.
ASCO provides a number of resources for patients and families at their online site (www.Cancer.Net),
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including coping with late effects, man- aging fear of recurrence, and making life- style changes. They also have a workbook created for patients to help them prepare for life after cancer treatment and pro- vide care plan templates for patients and doctors to complete together. Another resource available is a video-based series for young adults with cancer on unique survivorship challenges for this age group. In addition to patient and care- giver information, ASCO also provides several resources for providers ranging from survivorship and treatment guide- lines to educational symposiums focused on survivorship and tools for setting up survivorship clinics (American Society of Clinical Oncology, n.d.).The CDC works with a number of non-profit, public and private groups to develop strategies to assist people liv- ing with cancer through and beyond treatment (Centers for Disease Control, 2016). Through their efforts to frame sur- vivorship as a public health priority, the CDC has created a National Action Plan for Cancer Survivorship and developed a public health action model for cancer survivorship. The National Action Plan for Cancer Survivorship focuses on sur- veillance and applied research; com- munication, education and training;
programs, policies and infrastructure;
and access to quality care and services.
The Department of Health and Human Services conducted a review in 2013 to determine how successfully the National Action Plan was being imple- mented. Five leading agencies were reviewed in each of the four focus areas.
Results indicated that, on a whole, strat- egies were being implemented in all areas. In the area of surveillance and applied research, 76% of strategies were being implemented with the major gaps in implementation being that of conducting research on cancer control and prevention interventions for survi- vors and translating research into prac- tice. For communication, education and training, 94% of strategies were being implemented. However, the strategy of partnering with advocacy groups to visit community practices and observe or educate local providers had not been started. Programs, policies and infra- structure showed that 83% of strategies
were being implemented with only two areas (establishing criteria to determine which programs were using best prac- tices and identifying and ranking pro- grams according to best practice) not implemented. In the area of access to quality care and services, 56% of strat- egies were implemented. Those areas not implemented included providing training to providers about substance abuse in order to increase acceptance of prescribing pain medications, devel- oping mechanisms to allow survivors to have ongoing follow-up with care team after primary treatment and providing professional education on cancer survi- vorship (Smith et al., 2013).
The CDC also provides programs regarding cancer survivorship includ- ing comprehensive cancer control ini- tiatives, a national cancer survivorship resource centre and a focus on improv- ing breast cancer survivors’ health and quality of life. The CDC conducts sev- eral surveys including a behavioral risk factor surveillance survey that is state specific, a national health interview to determine how people use health- care, and a medical expenditures sur- vey. This organization provides national reports on cancer survivorship in jour- nal articles and supplements dedicated to cancer survivorship. In their efforts surrounding surveillance, the CDC supports cancer registries in 45 states, the District of Columbia, Puerto Rico, and U.S. Pacific Islands to track cancer cases, deaths, and types of treatments.
The Web Plus Survivorship Model pro- vides templates for breast, colorectal, and general care plans with resource on general cancer information, physical activity, nutrition, stress management, sexual health, and smoking cessation (Centers for Disease Control, 2016).
The mission of the National Coalition for Cancer Survivorship is to advocate for quality cancer care for all people touched by cancer. They work with legislators and policy mak- ers to promote policy changes that ensure quality care (National Coalition for Cancer Survivorship, n.d.). They provide resources for patients with cancer and providers as well as encour- aging patients to advocate themselves for policy changes. The widely accepted
statement from the NCCS, “An individ- ual is considered a cancer survivor from the time of diagnosis, through the bal- ance of his or her life. Family members, friends and caregivers are also impacted by the survivorship experience and are therefore included in the definition”, serves as a cornerstone of survivor- ship definitions (National Coalition for Cancer Survivorship, 2016).
The NCCN is an alliance of 27 lead- ing cancer centres across the United States devoted to patient care, research, and education. The NCCN provides guidelines for treatment of cancers by site; detection, prevention and risk reduction; supportive care; age-related recommendations and patient guide- lines (National Comprehensive Cancer Network, 2016). NCCN programs offer access to expert physicians, cut- ting-edge treatments, and quality and safety initiatives that strive to improve the effectiveness of cancer care.
The Oncology Nursing Society is a professional community of more than 39,000 oncology members who strive to
promote excellence in oncology nursing.
Through evidence-based education pro- grams and treatment information, ONS advocates improving quality of life and outcomes for patients with cancer and their families while providing oppor- tunities for education and advocacy for cancer survivorship (Oncology Nursing Society, n.d.). There are courses available such as the Breast Cancer Survivors and Quality of Life course and articles/pod- casts such as Review of Complementary and Alternative Medicine Practices Among Cancer Survivors. Nurses can
gain continuing nursing education cred- its for Women’s Educational Needs and Perceptions Regarding Survivorship Following Bilateral Mastectomy and Breast Cancer and Survivorship Quality Measures Project. ONS published stan- dards for survivorship care for accredita- tion and has several books available on a variety of survivorship topics. There is an ONS community on survivorship, qual- ity of life and rehabilitation where mem- bers can discuss survivorship issues, share best practices and gain insight regarding survivorship. There are also several position statements and health policy coalitions that address issues per- tinent to cancer survivors including
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being the voice of oncology nursing for the Cancer Moonshot. The goal of the NCI National Cancer Moonshot is to accelerate cancer research and aims to make more therapies available to more patients, while also improving our abil- ity to prevent cancer and detect it at an early stage. Survivorship issues and best practices are addressed in all eight of the oncology nursing certifications, as well.
ONS works closely with the other leading agencies to provide comprehensive, qual- ity care to cancer survivors and providers.
reFereNces
American Cancer Society (n.d.). Survivorship during and after treatment. Retrieved from http://www.cancer.org/treatment/
survivorshipduringandaftertreatment/
index
American Society of Clinical Oncology (n.d.).
Survivorship resources. Retrieved from http://www.asco.org/
American Society of Clinical Oncology (2016).
Survivorship. Retrieved from http://www.
cancer.net/survivorship
Centers for Disease Control. (2016). Cancer Survivorship. Retrieved from https://www.
cdc.gov/cancer/survivorship/
National Cancer Institute. (2016). Statistics.
Retrieved from https://cancercontrol.
cancer.gov/ocs/statistics/statistics.html National Coalition for Cancer Survivorship
(n.d.). Our Mission. Retrieved from h t t p s : // w w w. c a n c e r a d v o c a c y. o r g / about-us/our-mission/
National Comprehensive Cancer Network (2016). About NCCN. Retrieved from https://www.nccn.org/about/default.aspx Oncology Nursing Society (n.d.). About ONS.
Retrieved from https://ons.org/about Smith, J.L., Pollack, L.A., Rodriguez, J.L.,
Hawkins, N.A., Smith, T., Rechis, R., … Stone-Wiggins, B. (2013). Assessment of the status of a National Action Plan for cancer survivorship in the U.S.A. Journal of Cancer Survivorship, 7(3), 425–438.
cANcer surViVOrsHiP:
tHe iNterNAtiONAl sOcietY OF Nurses iN cANcer cAre PersPectiVe
Jan Stewart, BScN, MHS, CON(c) Nurses are uniquely positioned to be vital and central leaders in cancer care and control. Nurses’ leadership role extends from the patient’s bedside to include the broader community, health
system and global initiatives. The International Society of Nurses in Cancer Care (ISNCC) is a not-for-profit organization whose mission is to maxi- mize the influence of nursing to reduce the global burden of cancer. The vision is to lead the global nursing community in cancer control, and the values that underpin the organization are account- ability, equity, excellence, inclusivity, integrity, and respect.
Globally, ISNCC represents more than 60,000 cancer nursing members.
The ISNCC has a number of member types including full members (from national cancer nursing societies world- wide), associate members (oncology institutions or organizations) and indi- vidual members including cancer nurse practitioners, researchers and educa- tors. ISNCC has a corporate structure that includes key portfolio including Corporate and Philanthropic Devel- opment, Membership Development, Conference Management, Communica- tions, Finance/Audit, Nominations and Awards, Policy and Advocacy Knowl-
edge Development and Dissemina- tion. Each of these has goals/objectives focused on cancer survivorship.
ISNCC has a unique position, as it represents both high- and low/mid- dle-income (LMIC) countries. There is a lot of activity with a survivor- ship theme in high-income coun- tries focused on the large number of individuals who have been success- fully treated for cancer. In LMIC coun- tries, the focus of survivorship is on prevention, screening and palliative care. ISNCC is heavily focused on three prevention priorities: primary preven- tion including tobacco control, reduc- tion of sun exposure, and occupational carcinogens. With early detection, the focus is on screening for breast, colon and cervix cancer. Palliative care is the focus in LMIC, as most cancer is diag- nosed at an advanced stage and the only options available are pain relief and palliative care. Unfortunately, accord- ing to the Global Access to Pain Relief Initiative (GAPRI), 83% of the global population lives in LMICs and they con- sume 8% of the medical morphine con- sumed globally (Union for International Cancer Control, 2014). The World
Health Organization (WHO) estimates annually 5.5 million terminal cancer patients suffer moderate to severe pain with no management (World Health Organization/World Palliative Care Alliance, 2014).
In partnership and with gener- ous support of the National Cancer Institute’s Centre for Global Health Policy, ISNCC led the development of a white paper entitled, Strengthening the Oncology Nursing Workforce in Low-and Middle- Income Countries to Address the Growing Cancer Burden (Galassi et al., 2012). This paper has been key to focusing the organiza- tion on the implementation of rec- ommendations around how health and educational systems can be used to strengthen and expand the role of oncology nurses in LMICs. As an ini- tial step towards implementation of the recommendations the ISNCC has devel- oped key position statements and will be using this report to guide the devel- opment of the next strategic plan (2017–
2020) for the organization.
ISNCC has developed a number of position statements that support survi- vorship work globally including a posi- tion statement to support World No Tobacco Day 2015 (ISNCC, 2015). This position statement was developed in conjunction with the Asian Oncology Nursing Society (AONS), Canadian Association of Nurses in Oncology (CANO), European Oncology Nursing Society (EONS), and Oncology Nursing Society (ONS), demonstrating the capac- ity and reach of global collaboration among oncology nursing organizations.
In response to the World Cancer Declaration (Union for International Cancer Control, 2013), which sets out targets to improve the global burden of cancer (including improving can- cer survivorship, and enhancing the education of nurses), the ISNCC devel- oped the Nursing and the World Cancer Declaration (ISNCC, 2016). This posi- tion statement offers direction to nurses working in cancer care worldwide, to address the targets through strategies for health policy influence, enhanc- ing cancer prevention and early detec- tion efforts, and enhancing access to high-quality cancer treatment. Through
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these efforts, cancer survivorship in LMICs may be enhanced. There are many opportunities identified in this declaration for oncology nursing organi- zations around the world to collaborate and advance many of these targets.
As well, ISNCC has developed a variety of position statements on pain control, cervical screening, safe chemo- therapy administration and safe radia- tion therapy, models for palliative care, and cancer nursing education. ISNCC also has recently developed a guid- ance document for countries setting up national oncology nursing organi- zations. Finally, ISNCC has numerous online tools for oncology nursing educa- tion and practice support (see Table 3).
Although the global burden of can- cer is great, and opportunities for sur- vivorship in LMIC’s remain limited at this time, the ISNCC has an important role in influencing policy, developing
resources, and bringing together national oncology nursing organiza- tions to build capacity and synergy among LMIC and high-income coun- tries. It is through our collective global efforts that we may begin to address the disparities between LMIC and high-in- come countries, to ensure high-quality survivorship care for all.
reFereNces
Galassi, A., Al-Ruzzieh, M.A., Ayala de Calvo, L.E, Bigirimana, J.B., Burg, A., Buswell, L., … Williams, M. (2012). Strengthening the Oncology Nursing Workforce in Low- and Middle-Income Countries to Address the Growing Cancer Burden. Vancouver, Canada: International Society for Nurses in Cancer Care. Retrieved from http://c.
ymcdn.com/sit es/www.isncc.org/
resource/resmgr/publications/White_
Paper_Final_Revisions_.pdf
International Society of Nurses in Cancer Care (2016). Nursing and the World Cancer
Declaration. Vancouver, Canada: Author.
Retrieved from http://c.ymcdn.com/
sites/www.isncc.org/resource/resmgr/
publications/Nursing_and_World_
Cancer_Dec.pdf
International Society of Nurses in Cancer Care (2015). World No Tobacco Day 2015.
Vancouver, Canada: Author. Retrieved from http://c.ymcdn.com/sites/www.
isncc.org/resource/resmgr/Position_
Statements/World_No_Tobacco_Day_
Joint_S.pdf
Union for International Cancer Control (2014). Global access to pain relief initiative (GAPRI). Geneva, Switzerland: Author.
Retrieved from http://www.uicc.org/
sites/main/files/atoms/files/UICC_
OnePager_GAPRI.pdf
Union for International Cancer Control (2013). World cancer declaration.
Geneva, Switzerland: author. Retrieved from http://www.uicc.org/sites/
main/f iles/privat e/131119_UICC_
WorldCancerDeclaration_2013_1.pdf World Health Organization/ World Palliative
Care Alliance (2014). Global Atlas of Palliative Care at the End of Life. Geneva, Switzerland: Author. Retrieved from http://www.who.int/nmh/Global_Atlas_
of_Palliative_Care.pdf?ua=1
cONclusiON
Globally, survivorship care is in its nascent stages, and in LMICs, opportu- nities for survivorship care are limited.
Oncology nurses have a significant role to play in delivering high quality survi- vorship care as well as shaping survivor- ship care systems to be more equitable, person centred, and responsive to sur- vivors’ needs. Through our global part- nerships across oncology nursing organizations, we must take every opportunity to share resources, develop synergies, and use our collective nurs- ing voice to promote high quality survi- vorship care for all.
Table 3: ISNCC’s online practice and education resources Available from http://www.isncc.org
Resource Languages available
Access Device Guidelines Chinese
Recommendations for nursing practice and education Chinese Cancer Patient Safety Framework-Managing
Adherence to Oral Therapies English, Spanish, Portuguese, Czech, Hungarian, Polish Nurse-Led Patient Education for Targeted Therapies English, Spanish
Tobacco Cessation Leadership English, Russian, Romanian, Polish, Hungarian, Czech Nurse Management of Oral Chemotherapy English, Spanish, Portuguese Adverse Event-Solid Tumors and Targeted Agents English, French, Spanish, German,
Portuguese, Japanese, Italian Educational Modules- Multiple Myeloma, Acute
Lymphoblastic Leukaemia, ITP, and Skin Toxicity Treatment
English, Spanish, Portuguese
