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Department of Clinical Cancer Prevention, The University of Texas MD Anderson Cancer Center, Houston, TX, USA
Chapter Overview
The number of cancer survivors in the United States continues to grow and is approaching 14 million. Cancer survivorship care varies by disease type, but the primary components of care include surveillance for recurrence, screening for second primary cancers, and primary prevention involving lifestyle interventions and improving psychosocial functioning. The goal of survivorship care is to maximize disease-free survival while maintaining optimal quality of life. Optimal care can be provided by primary care physicians in addition to cancer specialists; however, delivery of high-quality care for cancer survivors can be hindered by poor coordination of care, limitations in knowledge and skills related to survivorship care, gaps in evidence-based recommendations for prevention and other areas of survivorship care beyond the first few years, and communication issues. Coordination of care and communication may be improved by the use of a “survivorship care plan” document that provides a concise summary of the patient’s treatment and a plan for follow-up care. In addition, variations across ethnic groups in the impact of cancer during the survivorship phase of care have been documented in several areas of study, and cultural, social, and ethnic considerations are important factors in delivering optimal care to cancer survivors.
Number of Cancer Survivors Increasing
The number of cancer survivors has grown steadily from 3.0 million in 1971 to 13.7 million in 2012. As the US population ages and the major risk factors of tobacco exposure and obesity persist, the growth trend is expected to continue. In addition, the effectiveness of cancer treatment has improved dramatically as the products of research and better understanding of disease processes have broadened the armamentarium of oncologists. With improvements in treatment, prevention, and early detection, almost two-thirds of cancer patients are living 5 years or longer after diagnosis. Thus, the number of cancer survivors in primary care as well as in community-based oncology practices will continue to increase.
Despite the progress that has been made, many cancer survivors are not taking advantage of evidence-based strategies that can maximize the duration and quality of life after completion of active treatment. Several barriers to the delivery of high-quality care for cancer survivors were highlighted in the Institute of Medicine report, From Cancer Patient to Cancer Survivor: Lost in Transition (Committee on Cancer Survivorship 2005). These include poor coordination of care, limitations in knowledge and skills related to survivorship care, gaps in evidence-based recommendations for prevention and other areas of survivor care beyond the first few years, and challenges related to communication issues. Communication barriers center especially on management of handoffs between cancer treatment specialists and primary care physicians. To highlight this problem area, the Institute of Medicine report is subtitled Lost in Transition.
Gaining a thorough understanding of the history of the patient’s cancer experience, working together as a coordinated medical team, sharing information among members of the team, and including the patient in a central way in the decision-making process are strategies that can promote the best outcomes for patients. Improving the clinical care of cancer survivors brings the promise of maximizing the benefits of cancer treatment and potentially gaining the longest possible survival duration after diagnosis while optimizing quality of life for each survivor.
Roles of Physicians and Other Health Professionals in Survivorship Care
The roles and responsibilities of physicians and other health care professionals during the patient’s long-term survivorship phase, after active treatment is completed, may and often do change. The survivor population is heterogeneous in terms of risk of recurrence and potential complications from treatment. Patients who are free of any evidence of disease after the initial follow-up period and at low risk for recurrence can successfully receive care in the primary care setting alone. Some patients will experience persistent long-term side effects or eventually develop late-onset effects of treatment. However, many of these patients can also receive the majority of their care in the primary care setting alone or in collaboration with oncologists or other specialists. Those who are at high risk for recurrence, have persistent but stable disease, or have substantial treatment-related or other comorbidities should receive follow-up care in a center specializing in care for high-risk patients.
Long-term follow-up care of cancer survivors can be successfully delivered by oncology specialists or by primary care physicians. Several studies have demonstrated the interest and effectiveness of primary care physicians in this role (Earle 2006). Other studies showed no differences in outcome for patients with commonly occurring cancers whether they received care from primary care physicians or cancer specialists. However, primary care physicians have expressed concern about their limited level of training and a perceived lack of adequate office time related to survivorship care, and some have noted problems communicating with oncologists. In addition, oncologists find it difficult to relinquish care of patients with whom they have had long, nurturing relationships.
Multiple models of delivery of survivorship care services have been described and are being implemented (Committee on Cancer Survivorship 2005). Continued follow-up care by the oncology specialists that delivered the patient’s initial treatment is common. Oncologists and patients have a high level of trust and familiarity that has made this approach desirable for many patients. Survivors have expressed expectations that oncologists have the best training and skills to provide surveillance for recurrence. Primary care physicians are also willing to take the lead in providing follow-up care and are cited by patients as being able to provide better screening for second primary cancers and delivery of primary preventive services than other types of physicians. However, some patients express concern about primary care physicians’ expertise and about whether they have adequate time to address the full range of issues that may arise during follow-up care. This discordance may contribute to a failure in delivery of active follow-up care for cancer survivors. Patients may be hesitant to seek the additional services they need from another clinician. Further discordance is found between opinions of primary care physicians and oncologists concerning their respective knowledge, skills, and practices (Potosky et al. 2011).
A cancer survivor’s medical needs may change as the clinical course evolves over time. Some patients will remain disease-free after treatment but others will develop recurrence of the initial cancer. A second primary cancer may be diagnosed and require treatment. The patient may struggle with persistent adverse effects of treatment or complications may develop some time after treatment and require additional management interventions. Psychosocial functioning can be impaired owing to the impact of the disease process on the patient or caregivers and family members. In these various scenarios, patient and physician expectations for survivorship care vary and may at times be discordant. Open discussion of the patient’s concerns and the delivery of anticipatory guidance are important at the various junctures in the patient’s cancer journey. Clear, proactive communication can result in better alignment of expectations and enhance the likelihood that the patient will receive recommended care in a patient-centered fashion. More research is needed in the techniques and different models of delivering survivorship care and in teaching effective communication skills related to patient preferences and cultural contexts.
Projected shortages in the medical workforce raise concern for the advancement of quality cancer survivorship care. Although the number of survivors is continuing to grow, concerns have also been voiced concerning the projected shortage of both oncologists and primary care physicians.
Risk Assessment and Risk Reduction
Risk assessment and personalized risk reduction interventions through primary and secondary prevention strategies are an important adjunct to surveillance for recurrence of disease in cancer survivors. In addition to implementing active behavioral interventions to reduce major risk factors, survivors must increase screening for second primary cancers because second primary cancers are a substantial proportion of all newly diagnosed cancers (Vogle 2006).
Cancer survivors more often make positive than negative health-related behavioral changes after completion of treatment. Young patients who have attained postsecondary education, have survived several years since the diagnosis, and have expressed spiritual well-being and fear of recurrence are most likely to act in a positive fashion (Hawkins et al. 2010). However, young patients who are young at diagnosis are also more likely to make negative behavioral changes. In addition, increased risk of negative behavioral change is associated with Hispanic origin, African-American origin, non-married status, and reduced self-perceived state of physical and emotional health (Hawkins et al. 2010).
Regardless of the type of clinician delivering the follow-up care, the primary and secondary preventive services must be delivered effectively and all clinicians should be involved in the patient’s care. In addition, the patient should understand who is responsible for assuring that the patient is receiving the recommended preventive services. In addition to receiving information about the recommended surveillance measures for recurrent cancer, the patient should understand areas of health risk and be given anticipatory guidance regarding risk reduction strategies. Additional guidance should be given regarding management of long-term and late complications of treatment, as well as psychosocial functioning. Preventive or follow-up services are missed as a result of poor communication between multiple physicians who may have differing understandings of each other’s roles (Earle and Neville 2004). Research is needed to elucidate the relationship between the clinical setting used and the optimal delivery of preventive services to and clinical outcomes of survivors.
Coordination of Care for Survivors
Coordination of medical service delivery among health care professionals and patients, their families, and caregivers is a critical component of providing optimal clinical preventive services to cancer survivors, as highlighted in the Institute of Medicine report (Committee on Cancer Survivorship 2005). Conversely, fragmentation of care and lack of coordination lead to suboptimal quality of care (Earle and Neville 2004). Integration of care for cancer survivors into the practice of primary care physicians and coordination of care among primary care physicians, oncologists, and other specialty clinicians is a key aspect of successful delivery of preventive and treatment services for survivors. The transition from active treatment to survivorship is an important process that appears to benefit greatly from active coordination among service providers and clear communication between patients and health care professionals. Patients with cancer may be cared for by a variety of specialists during the active treatment phase of their disease. The primary care physician may also continue to see the patient during active treatment, but more frequently cancer specialists have the lead responsibility during this phase of the disease process.
Coordination of care and communication may be improved by the use of a “survivorship care plan” document that provides a concise summary of the course of the patient’s disease and treatment and a plan for follow-up care, including surveillance and preventive interventions. This is an important recommendation from the Institute of Medicine survivorship report (Committee on Cancer Survivorship 2005). This care plan document is recommended to be used with each cancer survivor.
The survivorship care plan document is intended to serve as a summary of the patient’s cancer experience that includes the treatments completed and any adverse effects encountered. Importantly, it should also describe a follow-up care plan that includes surveillance for recurrence of the primary cancer, screening for second primary cancers, preventive services, counseling and immunizations related to general risks to the patient’s health, identification and management of long-term persistent adverse effects of the cancer or its treatment, and interventions to support psychosocial functioning. The document should also provide direction to the patient as to which clinician will deliver the various services and interventions needed. Communication between members of the health care team and a focus centered on the patient should lead to a better understanding of the services that are recommended, the schedule for delivery, and the source of care that will be provided.
The survivorship care plan is a resource that is needed but frequently missing from many patients’ records. Both those who have provided active treatment and those who will provide long-term follow-up care should understand their respective roles in managing care for cancer survivors. The patient should also be involved in a proactive fashion and needs to understand the plan and the benefits of follow-up, as well as the roles of the health care team members involved in providing that care. Although little evidence currently suggests that regular use of this document will result in improved outcomes for survivors, the Institute of Medicine suggests that use of such a document has “face validity” and should be used until there is evidence to the contrary.
Several versions of care plans have been developed and placed in use, including web-based versions. Locating and abstracting the data necessary to complete a care summary and plan can be time-consuming, and these tasks are not usually covered by health insurance plans. Additionally, the time needed to explain the plan to survivors is not a covered benefit in most health care plans. This may be perceived as a burden by clinicians and serve as a barrier to use.
Communication Skills
Communication among health care professionals related to management of patients is a practice behavior that both primary care and specialty physicians think they do well. However, both primary care and specialty physicians have been shown to have opportunities for improvement in this practice (O’Malley and Reschovsky 2011). Clinicians demonstrate critical elements of communication, including careful listening, providing clear explanations, giving enough time to patients, and behaving respectfully only 60% of the time. Patients report unmet needs for cancer information across many areas of survivorship. In addition to treatment-related concerns, patients have reported information needs in the areas of health promotion, long-term treatment effects, and interpersonal and psychological problems. Communication skills, especially those targeting the most difficult management issues in survivorship, are critical tools for all clinicians. Addressing the difficult transitions of recurrence, diagnosis of a second primary cancer, and end-of-life care are often areas of communication that create anxiety and discomfort for clinicians as well as patients. Resources providing focused training in these areas are available and may be used to improve the quality of communication in these challenging situations. In addition, research regarding the effects of the quality of communication among the members of the medical team on the patient is needed.