Global perspectives on cancer survivorship: From lost in transition to leading into the future

Abstract

In the decade since the Institute of Medicine’s 2006 landmark report, entitled From cancer patient to cancer survivor: 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 international 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 presentations 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 provide future leadership in shaping survivorship care to be more person centered and equity oriented.

INTRODUCTION

In the decade since the Institute of Medicine’s 2006 landmark report, From cancer patient to cancer survivor: Lost in transition (Hewitt, Greenfield, & Stovall, 2006), cancer survivorship has increasingly become a distinct phase in the cancer journey. Although much progress has been made toward creating a system of care that optimally addresses survivors’ needs, significant gaps remain. An international 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 presentations from that symposium, exploring cancer survivorship care from Canadian, American, and International perspectives, describing challenges, issues and gaps. To begin, Dr. Margaret Fitch lays the foundation for examining survivorship care by providing an overview of survivor definitional issues, unmet needs, models of care, and opportunities 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 nurses, individually and collectively, to provide leadership into the future to shape survivorship care to be more person centred 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 diagnosed with the disease and are now living 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 survivors 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 differ based on the type of cancer and the course of treatment. Some individuals live many years after treatment without evidence of disease while others experience intermittent periods of disease or may develop a second primary cancer. Others may experience unremitting disease that is controlled. It is rather widely accepted that an individual is considered a cancer survivor from the time of diagnosis, and throughout the balance of his or her life, despite the traditional medical 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.

Survivorship has been conceptualized 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 treatment can be especially challenging, as individuals recover from the impact of their treatment. It can also be a time when individuals are no longer visiting the specialty cancer centres with the same frequency and feeling a sense of 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 cancer 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 number of years (Hewitt, Greenfield & Stovall, 2006). Clearly, the cancer survivor population is a vulnerable group.

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.

Despite the emerging understanding about the needs of cancer survivors, there are challenges in providing appropriate care and support for this population: a general a lack of awareness about survivor needs on the part of cancer healthcare professionals, as well as the general public; scare funding for research, education, 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 individuals with hematologic cancer?

Oncology nurses are in an ideal position 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 challenged 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 normal’. 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.

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 projects. Engaging survivors in these types of initiatives can help to ensure relevant approaches are implemented. The ‘nursing voice’ can play a strong advocacy role drawing attention to survivorship 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 survivorship and how it varies from individual to individual. However, we do know that the population of cancer survivors is growing and they are not a homogeneous 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.

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 unfolding is increasingly complex. Although there are pockets of excellence, a variety 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 organizations 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 discussed in moving the cancer survivorship agenda forward.

The current landscape

In general, Canada has a patchy, disjointed, non-system of survivorship care. Survivors must self-negotiate specialty, primary care, prevention and complementary 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 models 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, emotional, practical, spiritual, informational needs). Growing evidence indicates that survivors’ psychosocial, informational, supportive care, and health promotion 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 survivorship 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, immigrant status, and socioeconomic status. Strategies have been implemented, such as nurse navigators, to increase access and support survivors to move through the system, which, without consideration 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 minimally included in the development of survivorship care models and resources, and these voices are often over-represented by those with socioeconomic advantage and other positions of privilege (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 survivorship care system to be more equitable 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 mention 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 survivorship models and programs are being developed, stimulated by overcrowding and fiscal restraints in the treatment-focused setting.

The Canadian Partnership Against Cancer (CPAC), Canada’s national cancer control strategy organization, is the major organizational umbrella under which many national survivorship initiatives and resources are housed (see www.partnershipagainstcancer.ca). In partnership with a host of local, provincial, 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 country, to developing resources such as the Cancer and Work website (Maheu & Parkinson, n.d.). Other important resources, such as guidelines to direct the organization and structure of survivorship 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 nursing excellence through practice, education, research and leadership for the benefit of all Canadians, has an important role to play in the survivorship landscape 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 survivorship 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 cancer); and e) articulating CANO/ACIO’s participation in the international arena to support oncology nurses globally to improve cancer survivorship.

Currently, CANO/ACIO’s Survivorship 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).

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

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 contribution to high quality survivorship care. Foundations for oncology nursing practice, 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 survivorship across the cancer trajectory, nursing 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 nursing 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 expertise to inform the development of practice 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 promote opportunities for synergy and knowledge translation across projects, wherever possible. Engaging survivors on research teams, and measuring outcomes that are important to survivors (e.g., Patient reported experience measures [PREMs] and Patient reported outcome measures [PROMs]) will be an important contribution by oncology nurses to the growing body of knowledge 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 influencing 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 advocating 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.

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 cancer 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 living longer than five years after diagnosis, 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 provides a plethora of information for persons 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 understanding recurrence. ACS also offers a variety of resources pertaining to survivorship including several templates for survivorship 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), including coping with late effects, managing fear of recurrence, and making lifestyle changes. They also have a workbook created for patients to help them prepare for life after cancer treatment and provide 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 caregiver information, ASCO also provides several resources for providers ranging from survivorship and treatment guidelines 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 living with cancer through and beyond treatment (Centers for Disease Control, 2016). Through their efforts to frame survivorship 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 surveillance and applied research; communication, 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 implemented. Five leading agencies were reviewed in each of the four focus areas. Results indicated that, on a whole, strategies 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 survivors and translating research into practice. 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 infrastructure showed that 83% of strategies were being implemented with only two areas (establishing criteria to determine which programs were using best practices and identifying and ranking programs according to best practice) not implemented. In the area of access to quality care and services, 56% of strategies were implemented. Those areas not implemented included providing training to providers about substance abuse in order to increase acceptance of prescribing pain medications, developing mechanisms to allow survivors to have ongoing follow-up with care team after primary treatment and providing professional education on cancer survivorship (Smith et al., 2013).

The CDC also provides programs regarding cancer survivorship including comprehensive cancer control initiatives, a national cancer survivorship resource centre and a focus on improving breast cancer survivors’ health and quality of life. The CDC conducts several surveys including a behavioral risk factor surveillance survey that is state specific, a national health interview to determine how people use healthcare, and a medical expenditures survey. This organization provides national reports on cancer survivorship in journal 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 provides 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 makers 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 encouraging patients to advocate themselves for policy changes. The widely accepted statement from the NCCS, “An individual is considered a cancer survivor from the time of diagnosis, through the balance 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 survivorship definitions (National Coalition for Cancer Survivorship, 2016).

The NCCN is an alliance of 27 leading 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 guidelines (National Comprehensive Cancer Network, 2016). NCCN programs offer access to expert physicians, cutting- 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 programs and treatment information, ONS advocates improving quality of life and outcomes for patients with cancer and their families while providing opportunities 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/podcasts such as Review of Complementary and Alternative Medicine Practices Among Cancer Survivors. Nurses can gain continuing nursing education credits for Women’s Educational Needs and Perceptions Regarding Survivorship Following Bilateral Mastectomy and Breast Cancer and Survivorship Quality Measures Project. ONS published standards for survivorship care for accreditation and has several books available on a variety of survivorship topics. There is an ONS community on survivorship, quality of life and rehabilitation where members 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 pertinent to cancer survivors including 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 ability 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, quality care to cancer survivors and providers.

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 maximize 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 accountability, 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 worldwide), associate members (oncology institutions or organizations) and individual members including cancer nurse practitioners, researchers and educators. ISNCC has a corporate structure that includes key portfolio including Corporate and Philanthropic Development, Membership Development, Conference Management, Communications, Finance/Audit, Nominations and Awards, Policy and Advocacy Knowledge Development and Dissemination. Each of these has goals/objectives focused on cancer survivorship.

ISNCC has a unique position, as it represents both high- and low/middle- income (LMIC) countries. There is a lot of activity with a survivorship theme in high-income countries focused on the large number of individuals who have been successfully treated for cancer. In LMIC countries, the focus of survivorship is on prevention, screening and palliative care. ISNCC is heavily focused on three prevention priorities: primary prevention including tobacco control, reduction 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 diagnosed at an advanced stage and the only options available are pain relief and palliative care. Unfortunately, according to the Global Access to Pain Relief Initiative (GAPRI), 83% of the global population lives in LMICs and they consume 8% of the medical morphine consumed 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 generous 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 organization on the implementation of recommendations around how health and educational systems can be used to strengthen and expand the role of oncology nurses in LMICs. As an initial step towards implementation of the recommendations the ISNCC has developed key position statements and will be using this report to guide the development of the next strategic plan (2017– 2020) for the organization.

ISNCC has developed a number of position statements that support survivorship work globally including a position 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 capacity 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 cancer survivorship, and enhancing the education of nurses), the ISNCC developed the Nursing and the World Cancer Declaration (ISNCC, 2016). This position statement offers direction to nurses working in cancer care worldwide, to address the targets through strategies for health policy influence, enhancing cancer prevention and early detection efforts, and enhancing access to high-quality cancer treatment. Through these efforts, cancer survivorship in LMICs may be enhanced. There are many opportunities identified in this declaration for oncology nursing organizations 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 chemotherapy administration and safe radiation therapy, models for palliative care, and cancer nursing education. ISNCC also has recently developed a guidance document for countries setting up national oncology nursing organizations. Finally, ISNCC has numerous online tools for oncology nursing education and practice support (see Table 3).

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

Although the global burden of cancer is great, and opportunities for survivorship 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 organizations to build capacity and synergy among LMIC and high-income countries. It is through our collective global efforts that we may begin to address the disparities between LMIC and high-income countries, to ensure high-quality survivorship care for all.

CONCLUSION

Globally, survivorship care is in its nascent stages, and in LMICs, opportunities for survivorship care are limited. Oncology nurses have a significant role to play in delivering high quality survivorship care as well as shaping survivorship care systems to be more equitable, person centred, and responsive to survivors’ needs. Through our global partnerships across oncology nursing organizations, we must take every opportunity to share resources, develop synergies, and use our collective nursing voice to promote high quality survivorship care for all.