There are over 14 million cancer survivors in the United States, a number that is expected to grow exponentially due to an aging population and improved methods for early detection and treatment [1]. The term “cancer survivor” has evolved over the years. The National Coalition for Cancer Survivorship (NCCS) had originally defined the survival period as the time period from diagnosis through the balance of life, but has recently expanded its definition to include family, friends, and caregivers [2]. In the pivotal Institute of Medicine (IOM) report “From Cancer Patient to Cancer Survivor: Lost in Transition,” the importance of addressing the ongoing physical and psychosocial challenges of cancer survivors was emphasized to encourage the multidisciplinary approach to survivorship as a distinct phase of the cancer continuum [3]. The report recommended that essential components of survivorship care include prevention and detection of new cancers, surveillance for recurrence, genetic evaluation, addressing the physical and psychosocial consequences of cancer and its treatment, and the coordination of care between specialists and primary care providers (PCPs).

The American Society of Clinical Oncology (ASCO) has described the stages of survivorship as acute, extended, and permanent [4]. The acute phase describes the time frame from diagnosis through initial treatment. The extended time frame is the period immediately after treatment is completed. The permanent phase is described as a longer time frame usually in years [4]. Each of these time frames presents its own set of unique challenges as survivors continue to recover from the late effects of treatment, begin to discover their new “normal,” and transition to less frequent visits with their healthcare providers. Much of what is evolving in adult cancer survivorship care can be learned from pediatric cancer research [5, 6]. Evidence-based surveillance and follow-up guidelines for pediatric cancer survivors were first published in 2004 by the Children’s Oncology Group [7]. Although evidence-based guidelines exist for some common adult cancers such as breast and colon cancer, most others are lacking. One barrier to providing standardized care to adult cancer survivors is the variability between survivors with the same type of cancer who may also present with comorbidities along with the use of personalized treatment plans [6].

In addition to the lack of guidelines for survivorship care planning, a gap exists in the provision of care provided to survivors leading to a potential deficit in the access to high-quality survivorship care. Howell et al. [8] reviewed models of survivorship care in an effort to evaluate the efficacy of current survivorship planning. The authors concluded that further research is needed on how to best structure survivorship care. This lends support to the theory that there is not a “one-size-fits-all” approach to survivorship program planning. Regardless of the practice setting, all models of survivorship care share a common goal, improving the quality of care provided to cancer survivors [9–11]. While the definition of a cancer survivor is broad, unless otherwise specified in this chapter, a survivor will be defined as an adult with a history of cancer. This chapter will examine the various models utilized to provide survivorship care to adults, discuss implementing survivorship treatment summaries into clinical practice, review surveillance guidelines and health promotion strategies, and conclude with considerations for the healthcare provider to help improve the care provided to cancer survivors in the future.

Cancer survivors often experience physical and psychosocial long-term and late effects after treatment ends [12]. Long-term effects include fatigue, peripheral neuropathy, pain, and cognitive changes that can occur during treatment and continue well beyond the end of treatment [13]. Late effects of therapy, such as cardiac dysfunction, pulmonary fibrosis, lymphedema, and secondary malignancies, can occur as late as 20 years after treatment [13]. Multiple other physical effects of cancer treatment that may appear are related to the disease-specific treatment regimen provided in addition to the individual’s underlying comorbidities. With the discovery of newer chemotherapeutic agents, unanticipated side effects may also emerge [5].

In addition to physical challenges, research has shown that survivors have an increased risk for psychosocial distress as a result of a cancer diagnosis. Studies have shown an increased risk of psychosocial distress in survivors who are younger, those with inadequate socioeconomic resources, limited access to care, communication barriers, underlying comorbid illness, and a history of psychiatric disorders [14, 15]. Psychosocial adjustments to life after cancer can include difficulty concentrating, anxiety, insomnia, depression, and post-traumatic stress disorder [14, 15]. Vachon [14] reported that even though approximately one-third of individuals with cancer experience some psychosocial distress, only about 10 % of these individuals receive therapy to address it. In a survey of over 3000 survivors, 98 % of respondents indicated that they experienced continued concerns as a result of cancer treatment [15]. Of these same respondents, 75 % indicated a fear of recurrence, followed by depression/sadness (65 %), while 53 % reported low-energy, sleep disturbance, and difficulty concentrating. Ness et al. [12] identified the following top five concerns of cancer survivors as fear of recurrence, fatigue, living with uncertainty, managing stress, and sleep disturbance. Social isolation, intimacy issues, spiritual distress, alterations in body image, and sexuality concerns were also identified by survivors as causes of distress [12, 16].

The literature is replete with articles that address the process for implementing survivorship care planning into clinical practice [6, 8, 11, 17–19]. Multiple models have been proposed for survivorship programs as there is no “one-size-fits-all” model of delivering survivorship care, and these programs are still evolving. Adult follow-up programs traditionally focus on a medical model. In this model, survivors are usually seen by a mid-level provider of their primary oncology team who performs a physical examination and assesses survivors for long-term and late effects of treatment. Referrals for additional services are made by the provider to programs within the facility or to resources in their community [9]. A consultative model employs a one-time comprehensive visit for survivors at the end of treatment which includes a review of therapy received as well as recommendations for health promotion and surveillance [9, 17]. Additional consultations with ancillary support services such as rehabilitation and psychosocial counseling can be recommended, and the ongoing care continues to be provided by the survivor’s oncology team [9, 17]. Earle and Ganz [20] reported that several hours are required outside of the survivorship visit to adequately prepare for this appointment.

In a multidisciplinary clinic model, multiple providers are available during the survivor’s scheduled appointment time. This type of model was the first developed and is still in use today in pediatric survivorship programs [9]. This model is usually costly, resource intensive, and may not be feasible for adult survivorship programs.

In an integrated care model, survivors remain under the care of their primary oncology team; however, care is usually provided by a mid-level provider in the same practice. Care may then be transitioned to the survivor’s primary care provider at a specific interval [9]. In order for the transition to primary care to be successful, primary care providers must be given the necessary information to provide ongoing surveillance for long-term and late effects of treatment. With each of the models noted above, however, survivors will need an additional posttreatment appointment to review long-term and late effects of treatment, health promotion, and surveillance recommendations.

In some practice settings, oncology nurse navigators are being utilized to provide survivorship counseling. In this model, navigators present evidence-based information on potential long-term and late effects of treatment and educate patients on the resources available to them and their families during this phase of the cancer continuum. In this author’s clinical experience, a survivorship nurse navigator is embedded in the department of radiation oncology and meets with survivors during the last week of treatment and again at their initial follow-up appointment to assess for unmet physical and psychosocial needs, making referrals to resources based on assessment results. In addition, the survivorship nurse navigator prepares the survivorship treatment summary and care plan and reviews it individually with each survivor [21].

When developing a survivorship program, it is important to take into account the individual practice settings along with available resources (financial as well as personnel), the survivor population, and optimal time for implementation [9, 20, 22]. Maintaining flexibility and open communication are also essential components of the program development process.

Trotter et al. [23] implemented a multidisciplinary clinic for breast cancer survivors that utilized a group visit medical model. In this pilot program, six breast cancer survivors who were at least 3 years beyond diagnosis and without evidence of metastatic disease were eligible to participate. A nurse practitioner facilitated the group with an oncology-certified licensed clinical social worker, dietitian, and physical therapist with lymphedema certification, who were available for brief consultations free of charge for each survivor as requested. At the time of publication, the cost-benefit analysis for this type of program was still being determined [23].

Mayer et al. [18] explored breast cancer survivors’ preferences of providing survivorship care. Survivors completed a questionnaire to evaluate their comfort level with follow-up care provided by their PCP, medical oncologist, radiation oncologist, surgeon, nurse practitioner (NP), and a virtual visit. Patients were then asked how visiting each provider would affect their stress, cancer-related worry, and survival outcomes. The greatest decreases in stress and cancer-related worry were found by visiting the medical oncologist followed by statistically equivalent results noted by visiting the radiation oncologist, surgeon, NP, or PCP [18]. When questioned about the effect of follow-up visits on improving survival outcomes, once again, a large percentage of survivors indicated that visiting the medical oncologist was likely to improve their survival outcomes. In each response, the virtual visit was ranked last for decreasing stress and cancer-related worry and the least likely to improve survival.

According to Grunfield and Earle [24] after cancer treatment is completed, some patients expect that their oncologist will become their primary care provider, which can lead to inconsistencies and confusion for the patient, oncologist, and primary care provider. Although some oncologists are willing to take on this role, the majority are not [24]. The reverse is also true as some primary care providers are willing to take responsibility for providing survivorship care to their patients while others are not. Survivorship care includes not only surveillance for recurrence; it also includes the management of long-term and late effects of treatment such as the increased risk of cardiac dysfunction along with continued neuropathy from certain chemotherapeutic agents. Psychosocial issues such as fear of recurrence, depression, and anxiety may occur at any point in the survivorship continuum. The National Comprehensive Cancer Network (NCCN) along with the American Society of Clinical Oncology (ASCO) is beginning to develop evidence-based survivorship guidelines to address these issues.

The need for survivorship education and care planning also extends to other healthcare providers. In one study, Lester et al. [25] surveyed over 200 oncology nurses at one comprehensive cancer center in the Midwest and found that gaps exist in the knowledge of survivorship care planning. Even though results from this study cannot be generalized to other practice settings due its small sample size, the findings warrant further research and increased education to oncology nurses. The Oncology Nursing Society (ONS) provides conferences, online courses, books, peer-reviewed journals, and a survivorship, quality of life, and rehabilitation special interest group to help educate nurses on the unique challenges faced by cancer survivors.

Regardless of the type of survivorship model or program that is implemented, the importance of communication and coordination of care between oncologists and primary care providers cannot be understated [24]. One mechanism to assist in the communication and coordination of care is the survivorship treatment summary and care plan.

One of the recommendations made in the IOM report to improve communication between oncologists and primary care providers is the utilization of a survivorship treatment summary and care plan [3]. Because of the IOM’s recommendation, the American College of Surgeon’s Commission on Cancer standards released in 2012 also called for the implementation of a survivorship care plan (SCP) by accredited programs by 2015 [26]. Standard 3.3 of the Commission on Cancer (CoC) requires that:

Although the Commission on Cancer [26] sets the survivorship care plan as a standard and several cancer advocacy groups recommend that survivors receive a summary of the treatment they received, implementation has been inconsistent [27]. Reasons cited for this inconsistency include the length of time needed to complete the treatment summary, the inability of current electronic health record systems to streamline the process, and a lack of reimbursement [22, 27]. In addition to these concerns, multiple templates have been developed by professional and patient advocacy organizations as well as those created by individual institutions to address recommendations from the IOM [22, 28]. Despite some commonalities, the content and length of the templates vary. There is also limited evidence documenting their effectiveness in improving clinical outcomes and compliance with follow-up recommendations [22]. Salz et al. [29] surveyed principal investigators at 14 NCI Community Cancer Centers Program (NCCCP) hospitals regarding the use of SCPs: specifically, the use and perceived value of SCPs, along with barriers to its implementation. Although 87–89 % of providers believed it was important for PCPs to receive the information, only 58–65 % believed it was important for survivors to receive this information, while fewer than half actually provided a SCP to their survivors [29]. In addition, a lack of personnel and time were also identified as barriers to implementation. However, among those utilizing an SCP, the providers found the use of a template to be very helpful. Since the survivorship care plan implementation standard is not required until 2015, the literature is limited to a few randomized control studies evaluating the survivorship care plan for its usefulness and effectiveness for survivors and healthcare providers. In one study of breast and colorectal survivors, survivors indicated that although the survivorship care plan was helpful in understanding the care they received, confusion remained as to which provider was responsible for the coordination of their care [30]. In another study by Grunfield et al. [31], breast cancer survivors who received a survivorship care plan experienced no benefit in quality of life, distress, or satisfaction as compared to survivors who received a traditional discharge visit. Mayer, Gerstel, Leak, and Smith [28] conducted focus groups with both survivors and primary care providers to evaluate their experiences and preferences in the content, format, and the delivery of a survivorship care plan. Results revealed that both survivors and PCPs found the SCP helpful. However, the survivors wanted information earlier on in their diagnosis and treatment in addition to surveillance and health promotion information after completing treatment, while the providers wanted a condensed version of the SCP at the end of treatment with an overview of treatment received, symptoms of recurrence, surveillance information, and responsible clinician [28].

Ashing-Giwa et al. [32] studied SCPs in African-American breast cancer survivors. It is a known statistic that African-American breast cancer survivors tend to experience greater morbidity and overall mortality as compared to Caucasian breast cancer survivors [1]. In this study, three structured focus groups were conducted to evaluate current knowledge of SCPs, review components recommended by the IOM, provide feedback, and draft a culturally relevant SCP template. Participants in this study raised concerns that the higher morbidity and mortality in African-American breast cancer survivors may be a result of more comorbidities and inadequate surveillance. Results from this study suggested that African-American breast cancer survivors wanted the SCP to be inclusive of other medical comorbidities that may have an impact on their overall survival [32]. This study provides an important and relevant aspect in providing individualized and culturally competent care to survivors. In another study, Pedro and Schmiege [33] found that survivors in rural areas reported lower social function and increased financial challenges and number of symptoms and concluded that health-related quality of life outcomes may be diminished posttreatment. Additional challenges in the rural setting include access to care, including transportation issues and health literacy [11]. Just as there is not a “one-size-fits-all” approach to survivorship models of care, there also needs to be individualization of the survivorship care plan itself to meet the needs of survivors in diverse populations.