- Email: [email protected]
Survivorship Care: Models and Programs
202
Seminars in Oncology Nursing, Vol 24, No 3 (August), 2008: pp 202-207
OBJECTIVES: To review models of care for adult cancer survivors and the challenges in program development.
DATA SOURCES: Review of the literature.
CONCLUSION: As the number of cancer survivors continues to grow, so does the need to develop unique evidence-based programs and services for this population. Survivorship should become a distinct phase of care and include: surveillance for recurrence, evaluation of and treatment for medical and psychosocial consequences of treatment, recommendations for screening for new primary cancers, health promotion recommendations, and provision of a written care plan to the patient and other health professionals.
IMPLICATIONS FOR NURSING PRACTICE: Many challenges remain to evaluating care models and actualizing clinical services nationally, but oncology nurses are uniquely positioned to take the lead in the care of cancer survivors of all ages.
KEYWORDS: Survivorship, care model, nurse practitioner, care plan
Mary S. McCabe, RN, MA: Director, Cancer Survivorship Program, Memorial Sloan-Kettering Cancer Center, New York, NY Linda Jacobs, PhD, RN, Clinical Associate Professor, Director, LIVESTRONG Survivorship Center of Excellence, Living Well After Cancer Program, Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA. Address correspondence to Mary S. McCabe, RN, MA, Memorial SloanKettering Cancer Center, 1275 York Ave, Room 2001K, New York, NY 10021; e-mail: [email protected]
Ó 2008 Elsevier Inc. All rights reserved. 0749-2081/08/2403-$30.00/0 doi:10.1016/j.soncn.2008.05.008
SURVIVORSHIP CARE: MODELS AND PROGRAMS MARY S. MCCABE AND LINDA JACOBS
T
HE ONCOLOGY nurse’s day is often filled with complex clinical decisions, managing a broad range of symptoms, discussing end-of-life care, and assisting patients and families with finding needed community resources. Thus, it is no surprise that we all look forward to seeing, and remember fondly, our successfully treated patients who return for followup visits. These individuals are among the 12 million cancer survivors in the United States and 22.4 million individuals worldwide.1,2 However, along with these optimistic results come new challenges for the cancer survivor, requiring the need for ongoing medical care and psychosocial services. We now know that survivors face a variety of ongoing health risks that are dependent on a number of factors: the type of cancer, treatment exposures, genetic predisposition, comorbid health conditions, and lifestyle behaviors.3-7 This information leads to important questions nationally: How should we care for this large number of individuals? What systems will be most efficient and effective? Where do we start? Fortunately, a significant body of knowledge already exists about the long-term and late effects of treatment for pediatric cancer survivors. Based on treatment exposures, these individuals are at significantly increased risk for premature mortality and serious morbidity as adults.4,5,8,9 For this reason, the pediatric oncology community has established follow-up clinics, developed consensus-based guidelines, implemented systematic plans of care to assure a formal approach to modifying, identifying, and treating late effects and made survivorship research an integral part of the clinical care programs. For survivors of adult cancers the story to date is quite different and it is time for us to catch up with our pediatric oncology colleagues. Although the negative effects of cancer treatment have been recognized for many years, knowledge about the specific consequences of cancer and its treatment is still evolving. The identified problems span the medical, psychosocial, and economic domains and may impact both quality of life and survival (Table 1). Even as we continue to identify the negative effects of treatment and better understand who is at risk for these problems, there is a need
SURVIVORSHIP CARE: MODELS AND PROGRAMS
203
TABLE 1. The Cancer Control Continuum Prevention
Early Detection
Diagnosis
Treatment
Survivorship
Tobacco control Diet Physical activity Sun exposure Virus exposure Alcohol use Chemoprevention
Cancer screening Awareness of cancer signs and symptoms
Oncology consultations Tumor staging Patient counseling and decisionmaking
Chemotherapy Surgery Radiation therapy Adjuvant therapy Symptom management Psychosocial care
Long-term follow-up/ surveillance Late-effects management Rehabilitation Coping Health promotion
End-of-Life Care Palliation Spiritual issues Hospice
Source: From Cancer Patient to Cancer Survivor: Lost in Transition; page 24, Box 2-2.1
to begin to develop and evaluate models for the long-term follow-up of adult survivors (a programmed approach utilizing the evidence as it evolves), but also incorporates health promotion strategies that are already known and can be tailored to the unique needs of particular survivor populations.1
ONGOING CARE AFTER TREATMENT
A
long the cancer care continuum, the greatest attention is paid to the diagnostic and treatment periods of care, but afterwards, the plan for ‘‘usual’’ follow-up is not systematic and often is only focused on a periodic assessment for cancer recurrence. Given the growing number of cancer survivors and the identification of their post-treatment needs, it is time to formalize a set of posttreatment services into a distinct phase of care, even as we acknowledge that our current knowledge about the long-term and late effects of treatment is limited and requires additional research (Table 2). A place to begin in developing models of care for adult survivors is the valuable 2005 Institute of Medicine report, ‘‘From Cancer Patient to Cancer Survivor: Lost in Transition.’’ 1 It provides a comprehensive review of the long-term risks from treatment that cancer survivors face accompanied by recommendations for how survivors should be followed, including models of care that, if implemented, would provide a seamless coordination between health care providers. Also, in considering how to plan, implement, and evaluate follow-up care models for adults
who have completed treatment, it is important to understand that there is no one model that will be successful in all settings. Rather, it is important to focus on the essential components of care that should be addressed whether the survivor is being followed in a community oncology office, community hospital, academic medical center, or cancer center. Included in such a visit should be: surveillance for recurrence, evaluation of and treatment for medical and psychosocial consequences of treatment, recommendations for screening for new primary cancers, health promotion recommendations, such as smoking cessation, diet and exercise, and provision of a written care plan to the patient (see Ganz article elsewhere in this issue).
SHARING CARE BETWEEN PROVIDERS
I
n addition to developing a systematic approach to follow-up, improved communication between the oncology specialist and other groups
TABLE 2. Models of Care Essential Components Surveillance for recurrence Screening for new cancers Identification and interventions for consequences of cancer and its treatment Health promotion strategies Coordination between oncology specialists and primary care providers
204
M.S. MCCABE AND L. JACOBS
providing care needs to occur. Cancer survivors (especially individuals over age 65), who may face lifetime risks of future health problems, receive care not only from the oncology care providers but also from primary care providers for their comorbid diseases, yet there is little clear delineation of roles and expectations for who is responsible for what issues. The opportunity and challenge then is to develop, implement, and evaluate a system of ‘‘shared care’’ between providers for cancer similar to the models that already exist for other chronic diseases, such as diabetes and chronic renal disease.10-12 In both these examples, the care of the patient is shared between two providers of different specialties where roles are clearly delineated and ongoing communication is established. This model is well established in the United States (US) and internationally as a standard for chronic disease care, but there are not yet any published US studies formally evaluating the shared-care model for cancer survivors. The one US study that looked at follow-up care delivered by multiple providers was conducted by Earle and Neville.13 They showed that 5-year survivors of colorectal cancer were more likely to receive recommended care if they saw both oncology and primary care providers. To date, most of the information about sharing the care of cancer survivors comes from studies conducted in Canada and Europe.14-19 Grunfeld, a leader in this research area, has compared outcomes in early stage breast cancer survivors who were followed by either an oncology provider or a primary care provider and found no difference in rate of recurrence or quality of life.15-18 A similar randomized study of colorectal cancer survivors (follow-up after colorectal surgery; FACS) is currently being conducted in the United Kingdom by the National Cancer Research Network.20 As more outcome studies are undertaken, we will better understand the ideal way of assuring quality care for cancer survivors as they are cared for by both specialist and generalist physicians and nurses. For shared-care of the oncology patient to be successful, this model requires, at a minimum, an ongoing communication link between the providers, as well as periodic knowledge transfer so that the primary care providers are knowledgeable about the long-term and late effects of cancer treatment.21 For example, when treatment ends, a formal follow-up plan should be developed by the oncology specialist and shared with both the survivor and the primary care physician. This plan
should include a summary of cancer treatment; a summary of the follow-up plan, including the frequency of visits and types of testing to be done for recurrence; contact information for questions; and where applicable, a list of potential late effects. But this follow-up plan is not a static document or a one-time communication, rather it should serve as the basis for periodic communication so that, as our knowledge about late effects improves, updates are provided. In addition, this communication is not intended to be unilateral. The primary care provider should feel comfortable getting in touch with the oncology provider with questions and concerns, especially if there is a suspicion that the patient’s cancer has recurred.
MODELS OF CARE FOR ADULT SURVIVORS
A
s more and more attention is being paid to the post-treatment period of cancer care, a number of models are being developed for both the adult survivors of pediatric cancer and for the very large group of individuals who have been diagnosed with adult onset cancers. These follow-up programs differ in focus and organization, but all of them include as key providers of care, nurses, and nurse practitioners. Pediatric Long-Term Follow-Up Models As a continuation of the pediatric follow-up programs that were initiated in the 1980s, a number of long-term follow-up programs for the adult and young adult survivors of pediatric cancers are being initiated. 22,23 Because of the success in treating cancers of childhood and adolescence and a greater understanding of the late effects of these treatments (including second cancers), it became apparent that continued follow-up is needed. Thus, clinics have been established for this survivor population that follow the pediatric model; they are not disease-specific, but rather include adult survivors of all pediatric cancers. They are generally a multidisciplinary team that includes an oncologist, nurse practitioner, social worker, and clinical psychologist. The follow-up visit includes all of the essential elements of the survivorship visit that has been previously outlined. Adult Follow-Up Clinic Models For all the adult clinic models that are being instituted nationally, the nurse practitioner is the key
SURVIVORSHIP CARE: MODELS AND PROGRAMS
provider of care; sometimes practicing in an independent role and in other situations, working as part of a multidisciplinary team. Either way, although these clinics vary in focus, complexity, and structure, they all are designed to meet the needs of the particular survivor population, as well as to fit into the institution culture where care is being delivered. Disease-specific model. Among the earliest survivorship clinics were those established to meet the post-treatment needs of breast cancer survivors. Oncology nurses and physicians identified early on the problems of lymphedema, fatigue, psychological distress, and weight gain and organized a set of services to assess and address these problems. These clinics often have served as a model for the expansion of survivorship services in an institution and may remain as a separate clinic or have been incorporated into institutionwide survivorship program. Comprehensive survivor clinic model. As more and more cancer centers, hospitals, and practices are developing survivorship clinics, a number of unique models are evolving. Some institutions offer a consultative service where the survivor is referred to the survivorship staff for a one-time visit while ongoing care continues to be provided by the original treatment team. Here a multidisciplinary team develops a treatment summary and follow-up care plan for the survivor, reviewing surveillance for late effect as well as health promotion recommendations. This type of program is simple, requires few additional resources, and demonstrates the value of survivorship services. The second type of clinic is a multidisciplinary clinic that follows the pediatric survivorship model. Here the survivor is seen by the survivorship team on an ongoing basis. Because this model is complex and resource intense, it is most often established to provide care for the adult survivors of pediatric cancer. The third model of care is the nurse practitioner-led clinic where the nurse may be embedded with the treatment team and manage the survivor as an extension of the care continuum. The handoff to the nurse practitioner occurs at a predetermined time after the completion of therapy once the immediate effects of treatment have resolved. At this point, it is premature to state or even consider that we know how best to develop survivorship programs or to deliver survivorship ser-
205
vices. It is time, however, for all of us, each in our own oncology programs and practices, to pilot new and novel ways of managing this period of care–all with a focus on assuring an excellent quality of life for our cancer survivors.
CHALLENGES TO PROGRAM DEVELOPMENT Willingness to Transition Care Although the pediatric oncology community has explored numerous models for transitioning the care of survivors of childhood cancer from the pediatric to adult health care setting for close to 20 years, challenges still exist. In a 2001 article in Seminars in Oncology Nursing, Hobbie and Ogle24 discussed four models of transitional care: disease-specific, generic, primary, and single-site care. Variations of these models are used in numerous settings caring for survivors of childhood cancer and many adult survivorship initiatives have used the experience in pediatric oncology as a model for the development of clinical programs; however, not without difficulty. Despite the growing numbers of pediatric cancer survivors and the years of experience with this population of survivors, the debate continues regarding the process, outcome, and the best approach to care for adults who have survived childhood cancer. ‘‘Barriers to transition’’ have been identified by clinicians and researchers including Schidlow and Fiel in 1990,25 and continue to be documented, studied, and clung to as the rationale for continuing to care for adult survivors of childhood cancer in pediatric oncology settings. This issue is noteworthy as adult oncology looks to their pediatric oncology colleagues for guidance regarding the challenges in developing models of care for adult cancer survivors. Lack of Follow-Up Guidelines The Children’s Oncology Group thoughtfully developed consensus-based guidelines that cannot, for a variety of reasons, be an appropriate guide for follow-up care in adult oncology settings.26 At the same time, oncology groups caring for adult survivors have developed only a limited number of surveillance guidelines because of the lack of research evidence and refusal to develop and sanction consensus guidelines.27 Consequently, it is impossible to recommend specific tests as standard of care for follow-up of adult oncology
206
M.S. MCCABE AND L. JACOBS
patients. This leaves providers and patients uncertain regarding an appropriate surveillance schedule and studies that should be done to monitor for late effects of treatment or recurrences. As mentioned, the number of cancer survivors of all ages is growing and it is critical that we begin to formalize methods for providing post-treatment care and recommendations despite the lack of evidence-based guidelines. Several models of care have been discussed in this article and it is evident that there is no model that can be completely duplicated and translated from the pediatric experience to adult oncology. In addition, the models developed and discussed that focus on the care of adult cancer survivors are limited, institutionspecific, reach a relatively small proportion of cancer survivors, and to a large extent, rely on the frequently unstable and inconsistent financial and philosophical commitment of an individual institution. A few centers across the country, primarily LIVESTRONG Survivorship Center of Excellence Network members, have developed adult survivorship programs, followed the Institute of Medicine guidelines, and agreed on the components of care that are essential for a comprehensive oncology follow-up visit outlined earlier. It is broadly recognized that given the complexity of and diversity among health care systems, the provision of adequate, comprehensive follow-up care to adult cancer survivors poses a significant challenge that requires a multidisciplinary and diverse effort. Most cancer patients are not treated at large comprehensive cancer centers and consequently, as survivors, they are followed in community-based oncology practices, general family practice settings, and by specialty providers. No Follow-Up Care Plans We would not consider caring for an oncology patient in active treatment without a plan and schedule for the treatment that is being provided. Therefore, it is imperative that we recognize that an important component of care for cancer survivors is the development of a personalized treatment summary and follow-up care plan. Oncology nurses have a unique opportunity to lead this initiative for a variety of reasons. A fourth and final model of care for cancer survivors that will be described here is a variation of the models outlined but one that can be implemented in every oncology practice with minimal added
cost or time commitment. This model can be led by the oncology nurse practitioner or oncology staff nurse in an oncology practice. It requires that the oncology nurse initiate the development of an end-of-treatment summary and care plan for each patient when the patient completes treatment using a standardized treatment summary form. The end-of-treatment summary form can be developed by and for an individual oncology practice or for institutional use. It can also be one of several templates that are currently in development by a few groups, including the Lance Armstrong Foundation or the American Society of Clinical Oncology, or one that is currently in use at a number of comprehensive cancer centers across the country.28,29 There are several issues that must be considered when exploring the model of care that is best for cancer survivors in a particular care setting. This model is unique in that the primary oncology practice, whether or not they will continue to follow patients post-treatment, are responsible for providing the patient with a summary of the care they received and some guidance for their survivorship experience. The process is dynamic and the care plan can and will change over time. It is important to keep in mind that this model addresses a very long overdue issue and provides us an opportunity to take the responsibility for patients who have been treated in our practices but subsequently followed with less than adequate attention and guidance. This model will allow the primary oncology practices to continue to follow these patients in a more organized fashion with a specific care plan or transition patients to other providers more smoothly. Ideally, nurse practitioners and staff nurses in oncology practices could assume responsibility for a post-treatment follow-up visit and take that opportunity to review the care plan, provide symptom management, and refer for supportive care in consultation with the oncologist. There are many models of care that can be developed and implemented with cancer survivors across the country, and as stated, there are many factors that influence the development of an appropriate model for each setting. Oncology nurses are clearly in a position to take the lead in the care of cancer survivors of all ages. Although practices are diverse and pose different challenges, the goals are the same across disciplines and the country, providing seamless quality care to our patients along the trajectory of care continuum.
SURVIVORSHIP CARE: MODELS AND PROGRAMS
207
REFERENCES 1. Hewitt M, Greenfield S, Stovall E. From cancer patient to cancer survivor: lost in transition. Washington, DC: The National Academies Press; 2006. 2. President’s Cancer Panel. Living beyond cancer. A European dialogue. Bethesda, MD: National Cancer Institute NIH Publication; 2004. 3. Mertens AC, Yasui Y, Neglia JP, et al. Late mortality experience in five-year survivors of childhood and adolescent cancer: the childhood cancer survivor study. J Clin Oncol 2001; 19:3163-3172. 4. Oeffinger KC, Hudson MM. Long-term complications following childhood and adolescent cancer: foundations for providing risk-based health care for survivors. CA Cancer J Clin 2004;54:208-236. 5. Hudson MM, Mertens AC, Yasui Y, et al. Health status of adult long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor study. JAMA 2003;290:1583-1592. 6. Rowland JH, Aziz N, Tesauro G, et al. The changing face of cancer survivorship. Semin Oncol Nurs 2001;17:236-240. 7. Hewitt M, Rowland JH, Yancik R. Cancer survivors in the United States: age, health, and disability. J Gerontol A Biol Sci Med Sci 2003;58:82-91. 8. Hewitt M, Weiner SL, Simone JV. Childhood cancer survivorship: improving care and quality of life. Washington, DC: The National Academies Press; 2003. 9. Oeffinger KC. Longitudinal risk-based health care for adult survivors of childhood cancer. Curr Probl Cancer 2003; 27:143-167. 10. Ciardullo AV, Daghio MM, Brunetti M, et al. Changes in long-term glycemic control and performance indicators in a cohort of type 2 diabetic patients cared for by general practitioners: findings from the ‘‘Modena Diabetes Project.’’ Nutr Metab Cardiovasc Dis 2003;13:372-376. 11. Renders CM, Valk GD, de Sonnaville JJ, et al. Quality of care for patients with type 2 diabetes mellitus–a long-term comparison of two quality improvement programmes in the Netherlands. Diabet Med 2003;20:846-852. 12. Jones C, Roderick P, Harris S, et al. An evaluation of a shared primary and secondary care nephrology service for managing patients with moderate to advanced CKD. Am J Kidney Dis 2006;47:103-114. 13. Earle CC, Neville BA. Under use of necessary care among cancer survivors. Cancer 2004;101:1712-1719. 14. Braun TC, Hagen NA, Smith C, et al. Oncologists and family physicians. Using a standardized letter to improve communication. Can Fam Physician 2003;49:882-886. 15. Grunfeld E, Fitzpatrick R, Mant D, et al. Comparison of breast cancer patient satisfaction with follow-up in primary
care versus specialist care: results from a randomized controlled trial. Br J Gen Pract 1999;49:705-710. 16. Grunfeld E, Gray A, Mant D, et al. Follow-up of breast cancer in primary care vs specialist care: results of an economic evaluation. Br J Cancer 1999;79:1227-1233. 17. Grunfeld E, Levine MN, Julian JA, et al. Randomized trial of long-term follow-up for early-stage breast cancer: a comparison of family physician versus specialist care. J Clin Oncol 2006;24:848-855. 18. Grunfeld E, Mant D, Yudkin P, et al. Routine follow up of breast cancer in primary care: randomised trial. BMJ 1996;313: 665-669. 19. Nielsen JD, Palshof T, Mainz J, et al. Randomised controlled trial of a shared care programme for newly referred cancer patients: bridging the gap between general practice and hospital. Qual Saf Health Care 2003;12:63-272. 20. National Cancer Research Network. UK Clinical Research Network Portfolio Database. Available at: http://www.ncrn. org.uk/portfolio/index (accessed November, 27, 2007). 21. Oeffinger KC, McCabe MS. Models for delivering survivorship care. J Clin Oncol 2006;24:5117-5124. 22. Oeffinger KC, Eshelman DA, Tomlinson GE, et al. Programs for adult survivors of childhood cancer. J Clin Oncol 1998;16:2864-2867. 23. Friedman DL, Freyer DR, Levitt GA. Models of care for survivors of childhood cancer. Pediatr Blood Cancer 2006;46: 159-168. 24. Hobbie WL, Ogle S. Transitional care for young adult survivors of childhood cancer. Semin Oncol Nurs 2001;17:268273. 25. Schidlow DV, Fiel SB. Transition of chronically ill adolescents from pediatric to adult health care systems. Med Clin North Am 1990;74:1113-1120. 26. Children’s Oncology Group. Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. Available at: http://www.survivorshipguidelines.org (accessed December, 19, 2007). 27. American Society of Clinical Oncology. Clinical practice guidelines. Available at: http://www.asco.org/ASCO/Qualityþ Careþ%26þGuidelines/PracticeþGuidelines/ClinicalþPractice þGuidelines (accessed December 19, 2007). 28. Haylock PJ, Mitchell SA, Cox T, et al. The cancer survivor’s prescription for living. Am J Nurs 2007;107:58-70. 29. American Society of Clinical Oncology. Chemotherapy treatment plan and summary. Available at: http://www.asco.org/ ASCO/QualityþCareþ%26þGuidelines/QualityþMeasurement þ%26þImprovement/ChemotherapyþTreatmentþPlanþandþ Summary (accessed December 20, 2007).
Seminars in Oncology Nursing, Vol 24, No 3 (August), 2008: pp 202-207
OBJECTIVES: To review models of care for adult cancer survivors and the challenges in program development.
DATA SOURCES: Review of the literature.
CONCLUSION: As the number of cancer survivors continues to grow, so does the need to develop unique evidence-based programs and services for this population. Survivorship should become a distinct phase of care and include: surveillance for recurrence, evaluation of and treatment for medical and psychosocial consequences of treatment, recommendations for screening for new primary cancers, health promotion recommendations, and provision of a written care plan to the patient and other health professionals.
IMPLICATIONS FOR NURSING PRACTICE: Many challenges remain to evaluating care models and actualizing clinical services nationally, but oncology nurses are uniquely positioned to take the lead in the care of cancer survivors of all ages.
KEYWORDS: Survivorship, care model, nurse practitioner, care plan
Mary S. McCabe, RN, MA: Director, Cancer Survivorship Program, Memorial Sloan-Kettering Cancer Center, New York, NY Linda Jacobs, PhD, RN, Clinical Associate Professor, Director, LIVESTRONG Survivorship Center of Excellence, Living Well After Cancer Program, Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA. Address correspondence to Mary S. McCabe, RN, MA, Memorial SloanKettering Cancer Center, 1275 York Ave, Room 2001K, New York, NY 10021; e-mail: [email protected]
Ó 2008 Elsevier Inc. All rights reserved. 0749-2081/08/2403-$30.00/0 doi:10.1016/j.soncn.2008.05.008
SURVIVORSHIP CARE: MODELS AND PROGRAMS MARY S. MCCABE AND LINDA JACOBS
T
HE ONCOLOGY nurse’s day is often filled with complex clinical decisions, managing a broad range of symptoms, discussing end-of-life care, and assisting patients and families with finding needed community resources. Thus, it is no surprise that we all look forward to seeing, and remember fondly, our successfully treated patients who return for followup visits. These individuals are among the 12 million cancer survivors in the United States and 22.4 million individuals worldwide.1,2 However, along with these optimistic results come new challenges for the cancer survivor, requiring the need for ongoing medical care and psychosocial services. We now know that survivors face a variety of ongoing health risks that are dependent on a number of factors: the type of cancer, treatment exposures, genetic predisposition, comorbid health conditions, and lifestyle behaviors.3-7 This information leads to important questions nationally: How should we care for this large number of individuals? What systems will be most efficient and effective? Where do we start? Fortunately, a significant body of knowledge already exists about the long-term and late effects of treatment for pediatric cancer survivors. Based on treatment exposures, these individuals are at significantly increased risk for premature mortality and serious morbidity as adults.4,5,8,9 For this reason, the pediatric oncology community has established follow-up clinics, developed consensus-based guidelines, implemented systematic plans of care to assure a formal approach to modifying, identifying, and treating late effects and made survivorship research an integral part of the clinical care programs. For survivors of adult cancers the story to date is quite different and it is time for us to catch up with our pediatric oncology colleagues. Although the negative effects of cancer treatment have been recognized for many years, knowledge about the specific consequences of cancer and its treatment is still evolving. The identified problems span the medical, psychosocial, and economic domains and may impact both quality of life and survival (Table 1). Even as we continue to identify the negative effects of treatment and better understand who is at risk for these problems, there is a need
SURVIVORSHIP CARE: MODELS AND PROGRAMS
203
TABLE 1. The Cancer Control Continuum Prevention
Early Detection
Diagnosis
Treatment
Survivorship
Tobacco control Diet Physical activity Sun exposure Virus exposure Alcohol use Chemoprevention
Cancer screening Awareness of cancer signs and symptoms
Oncology consultations Tumor staging Patient counseling and decisionmaking
Chemotherapy Surgery Radiation therapy Adjuvant therapy Symptom management Psychosocial care
Long-term follow-up/ surveillance Late-effects management Rehabilitation Coping Health promotion
End-of-Life Care Palliation Spiritual issues Hospice
Source: From Cancer Patient to Cancer Survivor: Lost in Transition; page 24, Box 2-2.1
to begin to develop and evaluate models for the long-term follow-up of adult survivors (a programmed approach utilizing the evidence as it evolves), but also incorporates health promotion strategies that are already known and can be tailored to the unique needs of particular survivor populations.1
ONGOING CARE AFTER TREATMENT
A
long the cancer care continuum, the greatest attention is paid to the diagnostic and treatment periods of care, but afterwards, the plan for ‘‘usual’’ follow-up is not systematic and often is only focused on a periodic assessment for cancer recurrence. Given the growing number of cancer survivors and the identification of their post-treatment needs, it is time to formalize a set of posttreatment services into a distinct phase of care, even as we acknowledge that our current knowledge about the long-term and late effects of treatment is limited and requires additional research (Table 2). A place to begin in developing models of care for adult survivors is the valuable 2005 Institute of Medicine report, ‘‘From Cancer Patient to Cancer Survivor: Lost in Transition.’’ 1 It provides a comprehensive review of the long-term risks from treatment that cancer survivors face accompanied by recommendations for how survivors should be followed, including models of care that, if implemented, would provide a seamless coordination between health care providers. Also, in considering how to plan, implement, and evaluate follow-up care models for adults
who have completed treatment, it is important to understand that there is no one model that will be successful in all settings. Rather, it is important to focus on the essential components of care that should be addressed whether the survivor is being followed in a community oncology office, community hospital, academic medical center, or cancer center. Included in such a visit should be: surveillance for recurrence, evaluation of and treatment for medical and psychosocial consequences of treatment, recommendations for screening for new primary cancers, health promotion recommendations, such as smoking cessation, diet and exercise, and provision of a written care plan to the patient (see Ganz article elsewhere in this issue).
SHARING CARE BETWEEN PROVIDERS
I
n addition to developing a systematic approach to follow-up, improved communication between the oncology specialist and other groups
TABLE 2. Models of Care Essential Components Surveillance for recurrence Screening for new cancers Identification and interventions for consequences of cancer and its treatment Health promotion strategies Coordination between oncology specialists and primary care providers
204
M.S. MCCABE AND L. JACOBS
providing care needs to occur. Cancer survivors (especially individuals over age 65), who may face lifetime risks of future health problems, receive care not only from the oncology care providers but also from primary care providers for their comorbid diseases, yet there is little clear delineation of roles and expectations for who is responsible for what issues. The opportunity and challenge then is to develop, implement, and evaluate a system of ‘‘shared care’’ between providers for cancer similar to the models that already exist for other chronic diseases, such as diabetes and chronic renal disease.10-12 In both these examples, the care of the patient is shared between two providers of different specialties where roles are clearly delineated and ongoing communication is established. This model is well established in the United States (US) and internationally as a standard for chronic disease care, but there are not yet any published US studies formally evaluating the shared-care model for cancer survivors. The one US study that looked at follow-up care delivered by multiple providers was conducted by Earle and Neville.13 They showed that 5-year survivors of colorectal cancer were more likely to receive recommended care if they saw both oncology and primary care providers. To date, most of the information about sharing the care of cancer survivors comes from studies conducted in Canada and Europe.14-19 Grunfeld, a leader in this research area, has compared outcomes in early stage breast cancer survivors who were followed by either an oncology provider or a primary care provider and found no difference in rate of recurrence or quality of life.15-18 A similar randomized study of colorectal cancer survivors (follow-up after colorectal surgery; FACS) is currently being conducted in the United Kingdom by the National Cancer Research Network.20 As more outcome studies are undertaken, we will better understand the ideal way of assuring quality care for cancer survivors as they are cared for by both specialist and generalist physicians and nurses. For shared-care of the oncology patient to be successful, this model requires, at a minimum, an ongoing communication link between the providers, as well as periodic knowledge transfer so that the primary care providers are knowledgeable about the long-term and late effects of cancer treatment.21 For example, when treatment ends, a formal follow-up plan should be developed by the oncology specialist and shared with both the survivor and the primary care physician. This plan
should include a summary of cancer treatment; a summary of the follow-up plan, including the frequency of visits and types of testing to be done for recurrence; contact information for questions; and where applicable, a list of potential late effects. But this follow-up plan is not a static document or a one-time communication, rather it should serve as the basis for periodic communication so that, as our knowledge about late effects improves, updates are provided. In addition, this communication is not intended to be unilateral. The primary care provider should feel comfortable getting in touch with the oncology provider with questions and concerns, especially if there is a suspicion that the patient’s cancer has recurred.
MODELS OF CARE FOR ADULT SURVIVORS
A
s more and more attention is being paid to the post-treatment period of cancer care, a number of models are being developed for both the adult survivors of pediatric cancer and for the very large group of individuals who have been diagnosed with adult onset cancers. These follow-up programs differ in focus and organization, but all of them include as key providers of care, nurses, and nurse practitioners. Pediatric Long-Term Follow-Up Models As a continuation of the pediatric follow-up programs that were initiated in the 1980s, a number of long-term follow-up programs for the adult and young adult survivors of pediatric cancers are being initiated. 22,23 Because of the success in treating cancers of childhood and adolescence and a greater understanding of the late effects of these treatments (including second cancers), it became apparent that continued follow-up is needed. Thus, clinics have been established for this survivor population that follow the pediatric model; they are not disease-specific, but rather include adult survivors of all pediatric cancers. They are generally a multidisciplinary team that includes an oncologist, nurse practitioner, social worker, and clinical psychologist. The follow-up visit includes all of the essential elements of the survivorship visit that has been previously outlined. Adult Follow-Up Clinic Models For all the adult clinic models that are being instituted nationally, the nurse practitioner is the key
SURVIVORSHIP CARE: MODELS AND PROGRAMS
provider of care; sometimes practicing in an independent role and in other situations, working as part of a multidisciplinary team. Either way, although these clinics vary in focus, complexity, and structure, they all are designed to meet the needs of the particular survivor population, as well as to fit into the institution culture where care is being delivered. Disease-specific model. Among the earliest survivorship clinics were those established to meet the post-treatment needs of breast cancer survivors. Oncology nurses and physicians identified early on the problems of lymphedema, fatigue, psychological distress, and weight gain and organized a set of services to assess and address these problems. These clinics often have served as a model for the expansion of survivorship services in an institution and may remain as a separate clinic or have been incorporated into institutionwide survivorship program. Comprehensive survivor clinic model. As more and more cancer centers, hospitals, and practices are developing survivorship clinics, a number of unique models are evolving. Some institutions offer a consultative service where the survivor is referred to the survivorship staff for a one-time visit while ongoing care continues to be provided by the original treatment team. Here a multidisciplinary team develops a treatment summary and follow-up care plan for the survivor, reviewing surveillance for late effect as well as health promotion recommendations. This type of program is simple, requires few additional resources, and demonstrates the value of survivorship services. The second type of clinic is a multidisciplinary clinic that follows the pediatric survivorship model. Here the survivor is seen by the survivorship team on an ongoing basis. Because this model is complex and resource intense, it is most often established to provide care for the adult survivors of pediatric cancer. The third model of care is the nurse practitioner-led clinic where the nurse may be embedded with the treatment team and manage the survivor as an extension of the care continuum. The handoff to the nurse practitioner occurs at a predetermined time after the completion of therapy once the immediate effects of treatment have resolved. At this point, it is premature to state or even consider that we know how best to develop survivorship programs or to deliver survivorship ser-
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vices. It is time, however, for all of us, each in our own oncology programs and practices, to pilot new and novel ways of managing this period of care–all with a focus on assuring an excellent quality of life for our cancer survivors.
CHALLENGES TO PROGRAM DEVELOPMENT Willingness to Transition Care Although the pediatric oncology community has explored numerous models for transitioning the care of survivors of childhood cancer from the pediatric to adult health care setting for close to 20 years, challenges still exist. In a 2001 article in Seminars in Oncology Nursing, Hobbie and Ogle24 discussed four models of transitional care: disease-specific, generic, primary, and single-site care. Variations of these models are used in numerous settings caring for survivors of childhood cancer and many adult survivorship initiatives have used the experience in pediatric oncology as a model for the development of clinical programs; however, not without difficulty. Despite the growing numbers of pediatric cancer survivors and the years of experience with this population of survivors, the debate continues regarding the process, outcome, and the best approach to care for adults who have survived childhood cancer. ‘‘Barriers to transition’’ have been identified by clinicians and researchers including Schidlow and Fiel in 1990,25 and continue to be documented, studied, and clung to as the rationale for continuing to care for adult survivors of childhood cancer in pediatric oncology settings. This issue is noteworthy as adult oncology looks to their pediatric oncology colleagues for guidance regarding the challenges in developing models of care for adult cancer survivors. Lack of Follow-Up Guidelines The Children’s Oncology Group thoughtfully developed consensus-based guidelines that cannot, for a variety of reasons, be an appropriate guide for follow-up care in adult oncology settings.26 At the same time, oncology groups caring for adult survivors have developed only a limited number of surveillance guidelines because of the lack of research evidence and refusal to develop and sanction consensus guidelines.27 Consequently, it is impossible to recommend specific tests as standard of care for follow-up of adult oncology
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patients. This leaves providers and patients uncertain regarding an appropriate surveillance schedule and studies that should be done to monitor for late effects of treatment or recurrences. As mentioned, the number of cancer survivors of all ages is growing and it is critical that we begin to formalize methods for providing post-treatment care and recommendations despite the lack of evidence-based guidelines. Several models of care have been discussed in this article and it is evident that there is no model that can be completely duplicated and translated from the pediatric experience to adult oncology. In addition, the models developed and discussed that focus on the care of adult cancer survivors are limited, institutionspecific, reach a relatively small proportion of cancer survivors, and to a large extent, rely on the frequently unstable and inconsistent financial and philosophical commitment of an individual institution. A few centers across the country, primarily LIVESTRONG Survivorship Center of Excellence Network members, have developed adult survivorship programs, followed the Institute of Medicine guidelines, and agreed on the components of care that are essential for a comprehensive oncology follow-up visit outlined earlier. It is broadly recognized that given the complexity of and diversity among health care systems, the provision of adequate, comprehensive follow-up care to adult cancer survivors poses a significant challenge that requires a multidisciplinary and diverse effort. Most cancer patients are not treated at large comprehensive cancer centers and consequently, as survivors, they are followed in community-based oncology practices, general family practice settings, and by specialty providers. No Follow-Up Care Plans We would not consider caring for an oncology patient in active treatment without a plan and schedule for the treatment that is being provided. Therefore, it is imperative that we recognize that an important component of care for cancer survivors is the development of a personalized treatment summary and follow-up care plan. Oncology nurses have a unique opportunity to lead this initiative for a variety of reasons. A fourth and final model of care for cancer survivors that will be described here is a variation of the models outlined but one that can be implemented in every oncology practice with minimal added
cost or time commitment. This model can be led by the oncology nurse practitioner or oncology staff nurse in an oncology practice. It requires that the oncology nurse initiate the development of an end-of-treatment summary and care plan for each patient when the patient completes treatment using a standardized treatment summary form. The end-of-treatment summary form can be developed by and for an individual oncology practice or for institutional use. It can also be one of several templates that are currently in development by a few groups, including the Lance Armstrong Foundation or the American Society of Clinical Oncology, or one that is currently in use at a number of comprehensive cancer centers across the country.28,29 There are several issues that must be considered when exploring the model of care that is best for cancer survivors in a particular care setting. This model is unique in that the primary oncology practice, whether or not they will continue to follow patients post-treatment, are responsible for providing the patient with a summary of the care they received and some guidance for their survivorship experience. The process is dynamic and the care plan can and will change over time. It is important to keep in mind that this model addresses a very long overdue issue and provides us an opportunity to take the responsibility for patients who have been treated in our practices but subsequently followed with less than adequate attention and guidance. This model will allow the primary oncology practices to continue to follow these patients in a more organized fashion with a specific care plan or transition patients to other providers more smoothly. Ideally, nurse practitioners and staff nurses in oncology practices could assume responsibility for a post-treatment follow-up visit and take that opportunity to review the care plan, provide symptom management, and refer for supportive care in consultation with the oncologist. There are many models of care that can be developed and implemented with cancer survivors across the country, and as stated, there are many factors that influence the development of an appropriate model for each setting. Oncology nurses are clearly in a position to take the lead in the care of cancer survivors of all ages. Although practices are diverse and pose different challenges, the goals are the same across disciplines and the country, providing seamless quality care to our patients along the trajectory of care continuum.
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