Accepted Manuscript Survivorship Care Planning: One Size Does Not Fit All Jennifer R. Klemp , PhD, MPH, MA PII:
S0749-2081(14)00094-1
DOI:
10.1016/j.soncn.2014.11.008
Reference:
YSONU 50678
To appear in:
Seminars in Oncology Nursing
Please cite this article as: Klemp JR, Survivorship Care Planning: One Size Does Not Fit All, Seminars in Oncology Nursing (2015), doi: 10.1016/j.soncn.2014.11.008. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
ACCEPTED MANUSCRIPT
Title: Survivorship Care Planning: One Size Does Not Fit All. Jennifer R. Klemp, PhD, MPH, MA
Director, Cancer Survivorship Founder/CEO, Cancer Survivorship Training, Inc
AC C
EP
TE D
M AN U
SC
[email protected]
RI PT
University of Kansas Cancer Center
1
ACCEPTED MANUSCRIPT
risk to support the notion that “one size does not fit all”.
Data Sources:
RI PT
Objective: To describe the delivery of survivorship care and methods to stratify
Published articles between 2007-2014 and original research
SC
findings.
M AN U
Conclusions: The development and implementation of survivorship care into practice provides barriers and opportunities. National mandates are pushing the delivery of a survivorship care plan (SCP), which requires the ability to develop and deliver this tool and the necessary health care delivery model to manage the
TE D
unique needs of each cancer survivor.
Implications for Nursing Practice: Oncology nurses and advanced practice
EP
nurses will play a crucial role in the deployment of survivorship care from
AC C
education and assessment to the delivery of coordinated care.
Keywords: cancer survivorship, models of delivery, survivorship care plan
2
ACCEPTED MANUSCRIPT
With a growing number of cancer survivors and the push to meet national accreditation standards, we have an opportunity to explore methods of delivering survivorship care based on level of risk and need.
One challenge is there are
RI PT
currently few models for stratifying risk of physical and psychosocial effects of cancer and its treatment. This is a crucial gap to fill in order to more effectively
SC
manage survivors and their caregivers and to lower overall health care costs.
Personalized Survivorship Care
M AN U
Currently the diagnosis and treatment of cancer includes imaging, biomarker driven targeted therapies, genetic and genomic tests used to stratify risk of cancer, need and response of treatment, risk of recurrence, and improve survival.
The treatment plan requires careful investigation, discussion, and
TE D
influence of multiple experts and is individualized to the patient. The push to provide this same level of detail and personalization to those who complete planned treatment has been suggested and mandated by experts in the field and
EP
national accrediting organizations such as the American College of Surgeons Commission on Cancer Program Standards for 2012 (implementation by 2015
AC C
and the American Society of Clinical Oncology’s Quality Oncology Practice Initiative (QOPI) Standards. [1,2]
The Survivorship Care Plan (SCP) theoretically has the ability to serve as a document for knowledge transfer and facilitate the delivery of shared care [3,4]. The SCP is the road map for the delivery of survivorship care, which needs to be
3
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individualized and delivered in a health care delivery system that can manage the multidisciplinary physical and psychosocial needs of cancer survivors. Most of the research to date on SCPs has focused on the development, content,
RI PT
implementation, delivery, and theoretical benefit [5]. There is a need for studies evaluating patient centered outcomes and models of health care delivery. This type of research is complicated and requires a high level of organization. In
community based, hospital based, and
SC
addition, the location of delivery also needs further evaluation including rural [6], academic medical centers.
Each
M AN U
location of delivery has differing levels of expertise, access to multidisciplinary care including specialists and primary care providers, and community resource and supportive care organizations.
TE D
Guidelines for surveillance and physical and psychosocial needs are established but not consistently implemented and evaluated. Clinical practice guidelines for cancer survivors have been developed by the American Society of Clinical
EP
Oncology (ASCO) and the Children’s Oncology Group (COG), both providing evidenced based consensus recommendations for certain types of cancer.
AC C
These practice guidelines, along with cancer screening guidelines and health promotion from organizations including the American Cancer Society (ACS), serve as part of a comprehensive framework in the delivery of survivorship care. The National Comprehensive Cancer Network (NCCN) has also released recommendations to assess distress and survivorship (V2.2014) [7].
These
guidelines cover topics including assessment for anxiety and depression,
4
ACCEPTED MANUSCRIPT
cognitive function, exercise, fatigue, immunizations and infections, pain, sexual function, and sleep disorders and are designed to provide a framework for general survivorship care and management and are not intended to provide
RI PT
specific guidelines on the surveillance and follow-up requirements for a survivor’s primary care. Having access to guidelines and recommendations promotes the delivery of patient centered, coordinated care, and requires ongoing evaluation of
SC
outcomes.
M AN U
Lastly, the demands of caring for cancer survivors both with and without active disease, requires time and an understanding of potentially complex issues. With a shrinking oncology work force there is a push to use a shared care delivery model [8]. Unfortunately, there is also a shrinking workforce in primary care and
TE D
pressures for an increased number of patient visits per day [9]. The result is an oncology visit focused on surveillance for recurrence or disease progression and maybe target a specific issue or concern. From the primary care perspective,
EP
they might be unclear of the screening guidelines and managing a complex issues of cancer survivors and also, there might not be a clear delineation of
AC C
which provider is responsible for aspects of follow-up care [10,11].
Models of Care
The delivery of survivorship care may differ within and between health care delivery systems. Table 1 summarizes models of delivery and the likely survivors and providers within each model [3,12-17].
5
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Without evidence supporting outcomes, there is not a standard model that will work even within a single organization. In order to address the individual needs
RI PT
of cancer survivors, there must be flexibility in implementing models of care.
Figure 1 depicts the patient journey where survivorship care begins at the time of
SC
diagnosis and continues during active treatment, into continuity of care for longterm cancer survivors. This figure also highlights the complexity of delivering
for cancer survivors.
M AN U
survivorship care along the cancer continuum and the need for a network to care A focus on earlier implementation of education and
intervention from the time of diagnosis is consistent with the current definition of a cancer survivor, “from the time of diagnosis through the lifespan” [18].
TE D
Organizations should begin development of a survivorship program by first evaluating what aspects of survivorship care already exist within or outside the organization. This inventory will result in many aspects of care that may or may
EP
not be integrated and accessible to cancer survivors and providers. The next step is to identify what elements of survivorship care require process
AC C
improvement or need to be developed.
To make this process easier to conceptualize, cancer survivorship should be regarded as a chronic health condition using the chronic health care model (similar to the management of cardiovascular disease and diabetes) [19], which can provide a necessary framework for the delivery of survivorship care and self-
6
ACCEPTED MANUSCRIPT
management.
This may also include incorporation of the oncology patient
centered medical home [20] and other models of delivery that focus on patient
RI PT
centered, coordinated care.
Barriers and Opportunities
SC
Time and reimbursement are two of the major challenges in the delivery of survivorship care. The development of a SCP has been shown to take up to 45-
M AN U
90 minutes per patient of unreimbursed time [21]. This has been a consistent barrier identified by providers and administrators attempting to implement SCPs. In addition, the integration into the electronic health record (EHR) is essential. Documentation outside of the health record provides challenges for meaningful
TE D
use and clinical integration. To date, there is limited access to EHRs that will auto fill patient information already in the health record and the popular work results in a lack of consistent integration, delivery, and comparison among
EP
organizations.
AC C
Reimbursement codes also do not fully support both the building of the SCP and the delivery of survivorship care. There are procedure codes for clinical services and behavioral interventions associated with the delivery of survivorship care, [22], but just because there is a specific code for a service does not mean that insurance companies will reimburse the care delivered.
7
ACCEPTED MANUSCRIPT
Survivorship care is complicated but provides an opportunity for disciplines, including nursing, to fill a major role in both the development and delivery of
RI PT
survivorship care.
For example, at the University of Kansas Cancer Center [23], the delivery of survivorship care is integrated within the current clinical setting. This includes
SC
disease specific survivorship clinics within the academic medical center and a general survivorship clinic within the community practice setting. The delivery of
M AN U
treatment summaries and care plans, and continuity of care, is primarily delivered by advanced practice providers (primarily nurse practitioners (NPs) and a shared care delivery with primary care. Transition to the survivorship continuity clinic is based on risk stratification, with those at lowest risk of recurrence and late effects
TE D
transitioning earlier than those at highest risk. The use of risk stratification for recurrence and major toxicities was nicely described my McCabe and colleagues [24]. Establishing risk categories of low, moderate, or high risk provides the
EP
basis for surveillance, intervention, and overall need.
AC C
Ongoing management of cancer survivors also needs quality outcomes. Our group recently presented continuity of care data on breast cancer survivors, who were on average 5 years from diagnosis and 57 years old followed in a NP lead survivorship clinic. We evaluated health outcomes including cancer screening (colonoscopy and mammography), update genetic testing, and other screenings including bone density. Results indicated an increase in colonoscopy from 25%
8
ACCEPTED MANUSCRIPT
published rates when oncologist and primary care refer an eligible early state breast cancer survivor to a 77% show rate in our population of breast cancer survivors.
There was a 100% show rate for both mammography and bone
RI PT
mineral density analysis. In addition, an additional 8% of breast cancer survivors now qualified for hereditary breast and ovarian cancer syndrome testing [25]. The role of oncology nurses and nurse practitioners is well suited and within their
SC
scope practice to support the delivery of survivorship care.
M AN U
Continuing education and professional development is required to prepare the current and future work force in the management of cancer survivors [26]. To date online continuing education and in-person conferences by institutions and organizations along with training programs, including the of City of Hope’s Preparing Professional Nurses for Cancer Survivorship Care [27] and the Center
TE D
for the Advancement of Cancer Survivorship], Navigation, and Policy (caSNP) [28], have been methods of professional development. Additional online training include:
ASCO
Survivorship
EP
programs
Compendium
(http://www.asco.org/practice-research/cancer-survivorship)
[29]
and
Tools
and
Cancer
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Survivorship Training, Inc, (www.cancersurvivorshiptraining.com) [30], which provides cancer care providers and collaborating health care professionals with access to expert continuing medical education on topics of cancer survivorship. Initiatives to implement survivorship care into training programs for nurses, physicians, and allied healthcare professionals, need to be a priority in order to care for the growing number of cancer survivors.
9
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Conclusion The development and implementation of survivorship care into practice provides
RI PT
barriers and opportunities. National mandates are pushing the delivery of a SCP, which requires the ability to develop and deliver this tool and the necessary health care delivery model to manage the unique needs of each cancer survivor. We have an opportunity to employ process
SC
This is not an easy task.
improvements and health systems research to determine the best models for
M AN U
delivery and development of improved risk stratification tools to identify those cancer survivors at highest risk and to management skyrocketing health care costs. Nurses and advanced practice nurses will play a crucial role in the deployment of survivorship care from education and assessment to the delivery
AC C
References:
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of coordinated care.
1. American College of Surgeons. Cancer Program Standards 2012, Version 1.1: Ensuring Patient-Centered Care. http://facs.org/cancer/coc/programstandards2012.html. Accessed November 4, 2014.
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2. American Society of Clinical Oncology. Quality Oncology Practice Initiative (QOPI). http://qopi.asco.org/ . Accessed November 4, 2014.
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3. Hewitt M, Greenfield S, Stovall E, eds. From Cancer Patient to Cancer
Survivor: Lost in Transition. Washington, DC: The National Academies Press;
SC
2005.
4. Palmer SP, Jacobs LA DeMichele A, Risendal B, Jones AF, Stricker CT.
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Metrics to evaluate treatment summaries and survivorship care plans: A scorecard Support Care Cancer 2014; 22:1475–1483
5. Mayer DK Birken SA, Check DK, Chen RC. Summing It Up: An Integrative Review of Studies of Cancer Survivorship Care Plans (2006-2013). Cancer.
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2014; epub ahead of print.
6. Pedro LW and Schmiege SJ. Rural Living as Context: A Study of Disparities
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in Long-Term Cancer Survivors. Oncol Nurs Forum 2014; 41(3): E211-19.
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7. National Comprehensive Cancer Network (NCCN) on Survivorship (Version 2.2014). www.nccn.org. Accessed November 4, 2014.
8. American Society of Clinical Oncology. Workforce Initiative. Accessed November 4, 2014. www.asco.org/workforce
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9. Association of American Medical Colleges. https://www.aamc.org/advocacy/campaigns_and_coalitions/fixdocshortage/.
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Accessed November 4, 2014.
10. Suh E, Daugherty CK, Wronblewski K,et al. General Internists’ Preferences and Knowledge About the Care of Adult Survivorship of Childhood Cancer. Ann
SC
Intern Med 2014;160:11-17.
M AN U
11. Del Giudice EM, Grunfeld E, Harvey BJ, Piliotis E, Verma S. Primary Care Physicians’ Views of Routine Follow-Up Care of Cancer Survivors. J Clin Oncol 2009; 27(20): 3338-45.
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12. Klemp JR, Knight CJ, Ranallo LB, Fabian CJ. The Demands of Cancer Survivorship: The Who, What, When, Where, Why, and How. Comm Oncol 2013;10:272-276.
EP
13.Cooper J, Loeb S, Smith C. The primary care nurse practitioner and cancer survivorship care. J Am Acad Nurse Prac, 2010; 22(8), 394-402.
AC C
14. Ganz P, Hahn E. Implementing a survivorship care plan for patients with breast cancer. J Clin Oncol, 2008;26(5), 759-767. 15. Landier W. Survivorship care: Essential components and models of delivery. Oncology, 2009; 23(4), 46-53. 16. McCabe MS, Jacobs LA. Clinical Update: Survivorship Care - Models and Programs. Semin Oncol Nurs, 2012; 28(3), e1-8. 17.
Hewitt M, Ganz P.
Implementing Cancer Survivorship Care Planning.
Washington DC: The national Academies Press, 2007
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18. National Coalition for Cancer Survivorship. Our Mission. http://www.canceradvocacy.org/about-us/our-mission/. Accessed November 4,
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2014.
19. Improving Chronic Illness Care. The Chronic Care Model.
http://www.improvingchroniccare.org/index.php?p=The_Chronic_Care_Model&s
SC
2. Accessed on Oct 21, 2014.
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20. Sprandio JD. Oncology Patient-Centered Medical Home. J Oncol Prac 2012; 8(3S), 47s-49s.
21. Mayer DK, Gerstel A, Walton AL, Triglianos T, Sadiq TE, Hawkins NA,
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Davies JM. Implementing survivorship care plans for colon cancer survivors. Oncol Nurs Forum. 2014;41(3):266-73.
EP
22. Parman C. Billing Challenges for Survivorship Services. http://www.accc-
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cancer.org. Accessed on November 3, 2014.
23.
The
University
of
Kansas
Cancer
Center.
http://www.kucancercenter.org/surviving-cancer. Accessed Oct 21, 2014.
24. McCabe MS, Partridge AH, Grunfeld E, Hudson M. Risk-Based Health Care, the Cancer Survivor, the Oncologist, and the Primary Care Physician.
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Semin Oncol. 2013; 40:804-812.
25. Klemp JR, Ranallo LB, Knight KJ, Fabian CJ. Breast cancer survivorship
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care: A continuity of care model of delivery. J Clin Oncol. 2014; 32 (suppl 26; abstr 116).
SC
26. McCabe M, Bhatia S, Oeffinger KC, Reaman GH, Tyne C, Wollins DS,
Hudson MM. American Society of Clinical Oncology Statement: Achieving
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High-Quality Cancer Survivorship Care. J Clin Oncol 2013; 31(5), 631-40.
27. Grant M, Economou D, Ferrell B, Uman G. Educating Health Care Professionals to Provide Institutional Changes in Cancer Survivorship Care. J
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Cancer Educ 2012; 27(2), 226-232.
28. The George Washington Center for the Advancement of Cancer
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Survivorship, Navigation, and Policy (caSNP).
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http://smhs.gwu.edu/gwci/survivorship/casnp. Accessed November 3, 2014.
29. American Society of Clinical Oncology Cancer Survivorship Compendium. http://www.asco.org/practice-research/asco-cancer-survivorship-compendium. Accessed November 3, 2014.
30. Cancer Survivorship Training, Inc.
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EP
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SC
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http://www.cancersurvivorshiptraining.com. Accessed November 3, 2014.
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Table 1 Models of Survivorship Care Provider
Clinic Character
Common Utilization
Community Based Adult Follow-up Clinic Model
MD, mid-level provider
Independent or part of multidisciplinary team
Meet the needs of a specific survivor population16
Nurse practitioner (primary care, women’s health, pediatric, oncology) Nurse managed health center13 Mid-level provider in collaboration with physician or oncologist Family practice, Internal Medicine, Pediatric
Comprehensive, long-term Rural and research settings17
Survivors of childhood cancers Long-term continuity of care
Nurse-Led Model
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Model
All tumor types16
Referrals to specialists when needed
Young childhood cancer survivors15
Oncologist, mid-level provider
Community cancer center with survivorship clinic
All tumor types
Oncologist, mid-level provider
Academic setting/oncology based15 Can be costly and requires large patient population17
Breast, prostate, survivors of childhood cancers15
Academic setting /oncology based
Any tumor type15
Nurse navigator to coordinate care Complex and resource intense
Pediatric survivorship clinics16 Disease specific
Integrated Survivorship Follow-up Clinics
Specific oncology provider Radiation therapy Transplant Multiple providers survivor sees multiple providers often on same day Expert oncology nurses Mid-level provider
Any tumor type3
Longitudinal Academic Model
Oncologist, mid-level provider
Care provided in one location Holistic and coordinated approach Separation of survivorship care from routine care Academic setting Survivors transitioned 1-5 years after completion of therapy
Consultative Clinic Model
Oncologist, MD, mid-level provider
Any tumor type16
Pediatric Long-Term Follow up clinics
MD, mid-level provider
Tertiary Model of Care/Cancer Survivorship Clinic Model
Oncologist, mid-level provider
One-time comprehensive visit Provider develops treatment summary and care plan, reviews recommended surveillance as well as health promotion and disease prevention Ongoing care provided by original oncology team and/or primary care Late side effects (including second cancers) clinic Children’s hospital setting Survivors transition to an adult medical setting Can be multi-disciplinary Late effects clinic Consultative or ongoing survivorship care Specialized centers/hospitals Hematology/ oncology treatment centers
Shared Care/Primary Care Shared Care
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Multi-disciplinary
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Treatment-Based Model
SC
Referral for services or to specialists
General Survivorship Clinic/Comprehensive Community-Based Survivorship Model Integrated Community Oncology Practice Model Academic Models Disease-based/DiseaseSpecific Model
Shared responsibility among oncologist and primary care provider
Oncologists address oncology related issues17 Provide guidance and treatment in area of expertise and
Any tumor type Lower risk of recurrence
Pediatric cancer16
Any tumor type14
Any tumor type
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Table 1 Models of Survivorship Care
Primary care provider
Oncologist Primary Care
Oncologist
SC
Transition to Primary Care Model
communicate with PCP3 Survivor is seen periodically by oncologist and co-followed by PCP for primary care needs/comorbidities, screening and prevention of other cancers14 Survivor followed by oncology for a set time period then transitions entirely to PCP Survivors transitioned after treatment Transition may be based on risk stratification: low risk of recurrence or late effects transitioned soon after treatment ends Oncologists provide information to PCP regarding late effects management and surveillance Requires effective and ongoing communication with oncologist Oncologist takes on role of PCP Less common
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Each provider has distinct role in care and disease management13 Providers from separate organizations with existing boundaries3
Abbreviations: MLP, midlevel provider, PCP, primary care provider
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Reprinted with permission from reference 12.
Any tumor type Survivors with a low risk for recurrence16
Any tumor type13
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SC
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ACCEPTED MANUSCRIPT
S0749-2081(14)00094-1
DOI:
10.1016/j.soncn.2014.11.008
Reference:
YSONU 50678
To appear in:
Seminars in Oncology Nursing
Please cite this article as: Klemp JR, Survivorship Care Planning: One Size Does Not Fit All, Seminars in Oncology Nursing (2015), doi: 10.1016/j.soncn.2014.11.008. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
ACCEPTED MANUSCRIPT
Title: Survivorship Care Planning: One Size Does Not Fit All. Jennifer R. Klemp, PhD, MPH, MA
Director, Cancer Survivorship Founder/CEO, Cancer Survivorship Training, Inc
AC C
EP
TE D
M AN U
SC
[email protected]
RI PT
University of Kansas Cancer Center
1
ACCEPTED MANUSCRIPT
risk to support the notion that “one size does not fit all”.
Data Sources:
RI PT
Objective: To describe the delivery of survivorship care and methods to stratify
Published articles between 2007-2014 and original research
SC
findings.
M AN U
Conclusions: The development and implementation of survivorship care into practice provides barriers and opportunities. National mandates are pushing the delivery of a survivorship care plan (SCP), which requires the ability to develop and deliver this tool and the necessary health care delivery model to manage the
TE D
unique needs of each cancer survivor.
Implications for Nursing Practice: Oncology nurses and advanced practice
EP
nurses will play a crucial role in the deployment of survivorship care from
AC C
education and assessment to the delivery of coordinated care.
Keywords: cancer survivorship, models of delivery, survivorship care plan
2
ACCEPTED MANUSCRIPT
With a growing number of cancer survivors and the push to meet national accreditation standards, we have an opportunity to explore methods of delivering survivorship care based on level of risk and need.
One challenge is there are
RI PT
currently few models for stratifying risk of physical and psychosocial effects of cancer and its treatment. This is a crucial gap to fill in order to more effectively
SC
manage survivors and their caregivers and to lower overall health care costs.
Personalized Survivorship Care
M AN U
Currently the diagnosis and treatment of cancer includes imaging, biomarker driven targeted therapies, genetic and genomic tests used to stratify risk of cancer, need and response of treatment, risk of recurrence, and improve survival.
The treatment plan requires careful investigation, discussion, and
TE D
influence of multiple experts and is individualized to the patient. The push to provide this same level of detail and personalization to those who complete planned treatment has been suggested and mandated by experts in the field and
EP
national accrediting organizations such as the American College of Surgeons Commission on Cancer Program Standards for 2012 (implementation by 2015
AC C
and the American Society of Clinical Oncology’s Quality Oncology Practice Initiative (QOPI) Standards. [1,2]
The Survivorship Care Plan (SCP) theoretically has the ability to serve as a document for knowledge transfer and facilitate the delivery of shared care [3,4]. The SCP is the road map for the delivery of survivorship care, which needs to be
3
ACCEPTED MANUSCRIPT
individualized and delivered in a health care delivery system that can manage the multidisciplinary physical and psychosocial needs of cancer survivors. Most of the research to date on SCPs has focused on the development, content,
RI PT
implementation, delivery, and theoretical benefit [5]. There is a need for studies evaluating patient centered outcomes and models of health care delivery. This type of research is complicated and requires a high level of organization. In
community based, hospital based, and
SC
addition, the location of delivery also needs further evaluation including rural [6], academic medical centers.
Each
M AN U
location of delivery has differing levels of expertise, access to multidisciplinary care including specialists and primary care providers, and community resource and supportive care organizations.
TE D
Guidelines for surveillance and physical and psychosocial needs are established but not consistently implemented and evaluated. Clinical practice guidelines for cancer survivors have been developed by the American Society of Clinical
EP
Oncology (ASCO) and the Children’s Oncology Group (COG), both providing evidenced based consensus recommendations for certain types of cancer.
AC C
These practice guidelines, along with cancer screening guidelines and health promotion from organizations including the American Cancer Society (ACS), serve as part of a comprehensive framework in the delivery of survivorship care. The National Comprehensive Cancer Network (NCCN) has also released recommendations to assess distress and survivorship (V2.2014) [7].
These
guidelines cover topics including assessment for anxiety and depression,
4
ACCEPTED MANUSCRIPT
cognitive function, exercise, fatigue, immunizations and infections, pain, sexual function, and sleep disorders and are designed to provide a framework for general survivorship care and management and are not intended to provide
RI PT
specific guidelines on the surveillance and follow-up requirements for a survivor’s primary care. Having access to guidelines and recommendations promotes the delivery of patient centered, coordinated care, and requires ongoing evaluation of
SC
outcomes.
M AN U
Lastly, the demands of caring for cancer survivors both with and without active disease, requires time and an understanding of potentially complex issues. With a shrinking oncology work force there is a push to use a shared care delivery model [8]. Unfortunately, there is also a shrinking workforce in primary care and
TE D
pressures for an increased number of patient visits per day [9]. The result is an oncology visit focused on surveillance for recurrence or disease progression and maybe target a specific issue or concern. From the primary care perspective,
EP
they might be unclear of the screening guidelines and managing a complex issues of cancer survivors and also, there might not be a clear delineation of
AC C
which provider is responsible for aspects of follow-up care [10,11].
Models of Care
The delivery of survivorship care may differ within and between health care delivery systems. Table 1 summarizes models of delivery and the likely survivors and providers within each model [3,12-17].
5
ACCEPTED MANUSCRIPT
Without evidence supporting outcomes, there is not a standard model that will work even within a single organization. In order to address the individual needs
RI PT
of cancer survivors, there must be flexibility in implementing models of care.
Figure 1 depicts the patient journey where survivorship care begins at the time of
SC
diagnosis and continues during active treatment, into continuity of care for longterm cancer survivors. This figure also highlights the complexity of delivering
for cancer survivors.
M AN U
survivorship care along the cancer continuum and the need for a network to care A focus on earlier implementation of education and
intervention from the time of diagnosis is consistent with the current definition of a cancer survivor, “from the time of diagnosis through the lifespan” [18].
TE D
Organizations should begin development of a survivorship program by first evaluating what aspects of survivorship care already exist within or outside the organization. This inventory will result in many aspects of care that may or may
EP
not be integrated and accessible to cancer survivors and providers. The next step is to identify what elements of survivorship care require process
AC C
improvement or need to be developed.
To make this process easier to conceptualize, cancer survivorship should be regarded as a chronic health condition using the chronic health care model (similar to the management of cardiovascular disease and diabetes) [19], which can provide a necessary framework for the delivery of survivorship care and self-
6
ACCEPTED MANUSCRIPT
management.
This may also include incorporation of the oncology patient
centered medical home [20] and other models of delivery that focus on patient
RI PT
centered, coordinated care.
Barriers and Opportunities
SC
Time and reimbursement are two of the major challenges in the delivery of survivorship care. The development of a SCP has been shown to take up to 45-
M AN U
90 minutes per patient of unreimbursed time [21]. This has been a consistent barrier identified by providers and administrators attempting to implement SCPs. In addition, the integration into the electronic health record (EHR) is essential. Documentation outside of the health record provides challenges for meaningful
TE D
use and clinical integration. To date, there is limited access to EHRs that will auto fill patient information already in the health record and the popular work results in a lack of consistent integration, delivery, and comparison among
EP
organizations.
AC C
Reimbursement codes also do not fully support both the building of the SCP and the delivery of survivorship care. There are procedure codes for clinical services and behavioral interventions associated with the delivery of survivorship care, [22], but just because there is a specific code for a service does not mean that insurance companies will reimburse the care delivered.
7
ACCEPTED MANUSCRIPT
Survivorship care is complicated but provides an opportunity for disciplines, including nursing, to fill a major role in both the development and delivery of
RI PT
survivorship care.
For example, at the University of Kansas Cancer Center [23], the delivery of survivorship care is integrated within the current clinical setting. This includes
SC
disease specific survivorship clinics within the academic medical center and a general survivorship clinic within the community practice setting. The delivery of
M AN U
treatment summaries and care plans, and continuity of care, is primarily delivered by advanced practice providers (primarily nurse practitioners (NPs) and a shared care delivery with primary care. Transition to the survivorship continuity clinic is based on risk stratification, with those at lowest risk of recurrence and late effects
TE D
transitioning earlier than those at highest risk. The use of risk stratification for recurrence and major toxicities was nicely described my McCabe and colleagues [24]. Establishing risk categories of low, moderate, or high risk provides the
EP
basis for surveillance, intervention, and overall need.
AC C
Ongoing management of cancer survivors also needs quality outcomes. Our group recently presented continuity of care data on breast cancer survivors, who were on average 5 years from diagnosis and 57 years old followed in a NP lead survivorship clinic. We evaluated health outcomes including cancer screening (colonoscopy and mammography), update genetic testing, and other screenings including bone density. Results indicated an increase in colonoscopy from 25%
8
ACCEPTED MANUSCRIPT
published rates when oncologist and primary care refer an eligible early state breast cancer survivor to a 77% show rate in our population of breast cancer survivors.
There was a 100% show rate for both mammography and bone
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mineral density analysis. In addition, an additional 8% of breast cancer survivors now qualified for hereditary breast and ovarian cancer syndrome testing [25]. The role of oncology nurses and nurse practitioners is well suited and within their
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scope practice to support the delivery of survivorship care.
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Continuing education and professional development is required to prepare the current and future work force in the management of cancer survivors [26]. To date online continuing education and in-person conferences by institutions and organizations along with training programs, including the of City of Hope’s Preparing Professional Nurses for Cancer Survivorship Care [27] and the Center
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for the Advancement of Cancer Survivorship], Navigation, and Policy (caSNP) [28], have been methods of professional development. Additional online training include:
ASCO
Survivorship
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programs
Compendium
(http://www.asco.org/practice-research/cancer-survivorship)
[29]
and
Tools
and
Cancer
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Survivorship Training, Inc, (www.cancersurvivorshiptraining.com) [30], which provides cancer care providers and collaborating health care professionals with access to expert continuing medical education on topics of cancer survivorship. Initiatives to implement survivorship care into training programs for nurses, physicians, and allied healthcare professionals, need to be a priority in order to care for the growing number of cancer survivors.
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Conclusion The development and implementation of survivorship care into practice provides
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barriers and opportunities. National mandates are pushing the delivery of a SCP, which requires the ability to develop and deliver this tool and the necessary health care delivery model to manage the unique needs of each cancer survivor. We have an opportunity to employ process
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This is not an easy task.
improvements and health systems research to determine the best models for
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delivery and development of improved risk stratification tools to identify those cancer survivors at highest risk and to management skyrocketing health care costs. Nurses and advanced practice nurses will play a crucial role in the deployment of survivorship care from education and assessment to the delivery
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References:
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2. American Society of Clinical Oncology. Quality Oncology Practice Initiative (QOPI). http://qopi.asco.org/ . Accessed November 4, 2014.
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Table 1 Models of Survivorship Care Provider
Clinic Character
Common Utilization
Community Based Adult Follow-up Clinic Model
MD, mid-level provider
Independent or part of multidisciplinary team
Meet the needs of a specific survivor population16
Nurse practitioner (primary care, women’s health, pediatric, oncology) Nurse managed health center13 Mid-level provider in collaboration with physician or oncologist Family practice, Internal Medicine, Pediatric
Comprehensive, long-term Rural and research settings17
Survivors of childhood cancers Long-term continuity of care
Nurse-Led Model
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Model
All tumor types16
Referrals to specialists when needed
Young childhood cancer survivors15
Oncologist, mid-level provider
Community cancer center with survivorship clinic
All tumor types
Oncologist, mid-level provider
Academic setting/oncology based15 Can be costly and requires large patient population17
Breast, prostate, survivors of childhood cancers15
Academic setting /oncology based
Any tumor type15
Nurse navigator to coordinate care Complex and resource intense
Pediatric survivorship clinics16 Disease specific
Integrated Survivorship Follow-up Clinics
Specific oncology provider Radiation therapy Transplant Multiple providers survivor sees multiple providers often on same day Expert oncology nurses Mid-level provider
Any tumor type3
Longitudinal Academic Model
Oncologist, mid-level provider
Care provided in one location Holistic and coordinated approach Separation of survivorship care from routine care Academic setting Survivors transitioned 1-5 years after completion of therapy
Consultative Clinic Model
Oncologist, MD, mid-level provider
Any tumor type16
Pediatric Long-Term Follow up clinics
MD, mid-level provider
Tertiary Model of Care/Cancer Survivorship Clinic Model
Oncologist, mid-level provider
One-time comprehensive visit Provider develops treatment summary and care plan, reviews recommended surveillance as well as health promotion and disease prevention Ongoing care provided by original oncology team and/or primary care Late side effects (including second cancers) clinic Children’s hospital setting Survivors transition to an adult medical setting Can be multi-disciplinary Late effects clinic Consultative or ongoing survivorship care Specialized centers/hospitals Hematology/ oncology treatment centers
Shared Care/Primary Care Shared Care
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Multi-disciplinary
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Treatment-Based Model
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Referral for services or to specialists
General Survivorship Clinic/Comprehensive Community-Based Survivorship Model Integrated Community Oncology Practice Model Academic Models Disease-based/DiseaseSpecific Model
Shared responsibility among oncologist and primary care provider
Oncologists address oncology related issues17 Provide guidance and treatment in area of expertise and
Any tumor type Lower risk of recurrence
Pediatric cancer16
Any tumor type14
Any tumor type
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Table 1 Models of Survivorship Care
Primary care provider
Oncologist Primary Care
Oncologist
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Transition to Primary Care Model
communicate with PCP3 Survivor is seen periodically by oncologist and co-followed by PCP for primary care needs/comorbidities, screening and prevention of other cancers14 Survivor followed by oncology for a set time period then transitions entirely to PCP Survivors transitioned after treatment Transition may be based on risk stratification: low risk of recurrence or late effects transitioned soon after treatment ends Oncologists provide information to PCP regarding late effects management and surveillance Requires effective and ongoing communication with oncologist Oncologist takes on role of PCP Less common
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Each provider has distinct role in care and disease management13 Providers from separate organizations with existing boundaries3
Abbreviations: MLP, midlevel provider, PCP, primary care provider
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Reprinted with permission from reference 12.
Any tumor type Survivors with a low risk for recurrence16
Any tumor type13
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