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Identifying Optimal Program Models and Clinical Tools for Follow-Up Care

Identifying Optimal Program Models and Clinical Tools for Follow-Up Care Abstract Fifteen years ago, the Institute of Medicine (IOM) issued a report that defined Survivorship Care as a distinct phase of the cancer care continuum. The required domains to meet the health needs of cancer survivors were outlined in the report: cancer surveillance and screening, cancer prevention and lifestyle counseling, management of treatment related persistent or late effects, coordination of care, and psychosocial support services. In response to that report, The University of Texas MD Anderson Cancer Center implemented a tiered survivorship care model that is risk based. The core principle is that cancer survivors’ health needs will depend on the cancer treatment and disease-specific risks. We here describe this model for low-, intermediate-, and high-risk cancer survivors, in which comanagement between oncology and primary care providers is risk dependent. Our clinical model defines transition as appropriate when there is a minimal risk of primary cancer relapse, which is specific to each cancer type and disease stage. This model is embedded into disease-specific clinical practice algorithms, aligned with the IOM domains of care. Over the past 10 years, we have successfully transitioned nearly 25 000 patients to disease-specific survivorship clinics, providing care based on the IOM domains. We have learned from our process that expansion of survivorship care into established clinical settings requires engagement of champions and key clinical stakeholders. Future directions for survivorship care should explore the application and potential benefits of telemedicine as a care delivery system to meet the needs of cancer survivors. The Institute of Medicine (IOM)’s 2006 Report “From Cancer Patient to Cancer Survivor: Lost in Transition” issued 10 recommendations to address major gaps in the health care of cancer survivors in the United States (1). The first of its 10 recommendations states health-care providers should “raise awareness of the needs of cancer survivors, establish cancer survivorship as a distinct phase of cancer care, and act to ensure the delivery of appropriate survivorship care.” The report stresses that survivorship care is a distinct and critical phase of the cancer care continuum that ensures survivors’ health and well-being after cancer. Currently, 15 years after the publication of that report, there is a persistent debate about survivorship care. When are cancer patients identified to be in the survivorship phase of care, and how should this be determined? Who should deliver survivorship care, and what is the ideal mode of delivery? More importantly, what is “appropriate survivorship care”? Appropriate Patient-Centered Survivorship Care In patient-centered care delivery, each patient’s unique circumstances define the most appropriate care. According to the principles of safe and effective care, survivorship care should deliver the right treatment to the right patient at the right time. However, the right treatment for each unique cancer survivor may be unclear. Active cancer treatment is a well-designed process. Each patient’s treatment is planned and delivered according to the malignancy type, the disease stage, and the patient’s unique risk factors due to comorbid illness or age, as well as other considerations, such as sociocultural preferences. The same factors that are taken into consideration in active cancer treatment should come into play in a patient-centered cancer survivorship care model: risk factors that are specific to the cancer itself (eg, the risk of late recurrence or of secondary or concurrent malignancies); risk factors that are specific to the treatment type (ie, anticipated secondary toxicities of the treatment modality); risks that are associated with chronic health conditions that can increase vulnerability to secondary complications; and social risk factors, including lifestyle risks. According to the IOM report, the comprehensive survivorship care domains should include surveillance for primary malignancy relapse or other secondary malignancies; cancer screening, prevention, and lifestyle counseling; management of persistent or late toxicities; and psychosocial health and well-being. To support the development of our own disease-specific survivorship clinics, structured clinical algorithms that align with these 4 domains and include evidence-based guidelines (eg, colon cancer screening) (2,3) have been developed by clinicians within each clinic. These tools have been invaluable in standardizing care practice across teams (4). This manuscript serves as a case study and review of the implementation of risk-based model of survivorship care over the course of more than a decade. Risk Models for Survivorship Care Delivery As in the active cancer treatment phase, the most optimal survivorship care plan should be multi- and inter-disciplinary and designed in a risk-based framework that is dependent on the complexity of the patient’s needs. Thus, in a risk-based model, multidisciplinary comanagement is most suited to patients who are anticipated to experience sequela from treatment, have risks related to the malignancy itself, or have complex comorbidities. Figure 1 illustrates the risk-based model that we established in 2008 based on input from multi-disciplinary stakeholder focus groups that we held at the outset of our program development, as we have previously described (5,6). More recently, risk-based survivorship care has been affirmed by others as optimal (7,8). Our model integrates the 4 IOM domains of care across 3 risk levels. Risk level 1 has minimal potential for late sequela, and we consider it appropriate to transition patients at this risk level to cancer screening and prevention under the oversight of their primary care physicians. Risk level 2 is more challenging in that patients need both primary care and more focused and expert survivorship care, depending on their risk factors, especially if they experience or are at high risk for treatment-related late effects. Risk level 3 patients require comanagement of ongoing or potentially recurrent oncologic care as well as subspecialty management of late effects from treatment as well as preventive health measures. Figure 1. Open in new tabDownload slide Model of risk-based survivorship care components (The University of Texas MD Anderson Cancer Center, 2020). After completion of acute cancer therapy, all survivors should have access to psychosocial support services as well as cancer prevention and screening services. Survivors who have persistent symptoms or health problems related to treatment toxicities should also have access to specialty experts based on toxicity effects (eg, those with persistent or late-onset cardiac toxicities should have consultation and if possible comanagement by an onco-cardiologist). Patients with an anticipated high risk of recurrence of their primary cancer, or secondary malignancies, will need ongoing comanagement by their oncologist in addition to previously mentioned services. Figure 1. Open in new tabDownload slide Model of risk-based survivorship care components (The University of Texas MD Anderson Cancer Center, 2020). After completion of acute cancer therapy, all survivors should have access to psychosocial support services as well as cancer prevention and screening services. Survivors who have persistent symptoms or health problems related to treatment toxicities should also have access to specialty experts based on toxicity effects (eg, those with persistent or late-onset cardiac toxicities should have consultation and if possible comanagement by an onco-cardiologist). Patients with an anticipated high risk of recurrence of their primary cancer, or secondary malignancies, will need ongoing comanagement by their oncologist in addition to previously mentioned services. Survivorship Phase Transition There is still much debate regarding when it is the appropriate time of transition from oncologic to survivorship phase care and which patients should be receiving survivorship care. Although the National Cancer Institute’s Office of Cancer Survivorship defines cancer survivors very broadly (ie, as any person who is diagnosed with cancer), the new Commission on Cancer Survivorship Standard (4.8) narrows the requirement of survivorship care to only patients who have undergone curative treatment (9,10). Our clinical model defines transition as appropriate when there is a minimal risk of primary cancer relapse, which is specific to each cancer type and disease stage. Patients transition to a cancer prevention specialist, a primary care specialist, or an advanced practice provider team who have expertise and training in cancer survivorship care; multidisciplinary referrals and consultations are coordinated as needed. However, other models advocate a transition to the survivorship phase of care immediately on the completion of active cancer treatment. This latter situation, similar to our stem cell transplant survivorship care process, most optimally requires an oncology specialist to perform surveillance during the period of the highest risk for disease recurrence and an advanced care provider, primary care provider, or other clinical team member to deliver survivorship care. The structure of different clinical transitions is summarized in Table 1. Table 1. Models of survivorship care in a comprehensive cancer centera Survivorship care model . Target population . Special considerations for program development . Disease based Solid tumor survivors, lymphoma survivors Risk-based inclusion criteria; transition from oncology care to survivorship; clinic at point of low risk of recurrence; APP or prevention specialists coordinate multi-modal care Treatment based Stem cell survivors Comanaged survivorship care by APP and transplant physician; patients enter survivorship care early in post-stem cell transplantation period Comprehensive stand-alone Childhood survivors, AYA survivors Risk-based transition to or comanagement care by APP; survivorship care for all tumor types; integration of psychological and social (particularly age-specific issues) care, preventive and age-appropriate multispecialty care Survivorship care model . Target population . Special considerations for program development . Disease based Solid tumor survivors, lymphoma survivors Risk-based inclusion criteria; transition from oncology care to survivorship; clinic at point of low risk of recurrence; APP or prevention specialists coordinate multi-modal care Treatment based Stem cell survivors Comanaged survivorship care by APP and transplant physician; patients enter survivorship care early in post-stem cell transplantation period Comprehensive stand-alone Childhood survivors, AYA survivors Risk-based transition to or comanagement care by APP; survivorship care for all tumor types; integration of psychological and social (particularly age-specific issues) care, preventive and age-appropriate multispecialty care a APP = advanced practice provider; AYA = adolescents and young adulst. Open in new tab Table 1. Models of survivorship care in a comprehensive cancer centera Survivorship care model . Target population . Special considerations for program development . Disease based Solid tumor survivors, lymphoma survivors Risk-based inclusion criteria; transition from oncology care to survivorship; clinic at point of low risk of recurrence; APP or prevention specialists coordinate multi-modal care Treatment based Stem cell survivors Comanaged survivorship care by APP and transplant physician; patients enter survivorship care early in post-stem cell transplantation period Comprehensive stand-alone Childhood survivors, AYA survivors Risk-based transition to or comanagement care by APP; survivorship care for all tumor types; integration of psychological and social (particularly age-specific issues) care, preventive and age-appropriate multispecialty care Survivorship care model . Target population . Special considerations for program development . Disease based Solid tumor survivors, lymphoma survivors Risk-based inclusion criteria; transition from oncology care to survivorship; clinic at point of low risk of recurrence; APP or prevention specialists coordinate multi-modal care Treatment based Stem cell survivors Comanaged survivorship care by APP and transplant physician; patients enter survivorship care early in post-stem cell transplantation period Comprehensive stand-alone Childhood survivors, AYA survivors Risk-based transition to or comanagement care by APP; survivorship care for all tumor types; integration of psychological and social (particularly age-specific issues) care, preventive and age-appropriate multispecialty care a APP = advanced practice provider; AYA = adolescents and young adulst. Open in new tab Developing Survivorship Care Tools to Guide Practice Algorithms (Pathways) for Practice Following the release of the IOM report in 2006, MD Anderson began developing its survivorship program. A key step was building practice algorithms, based on the results of evidence-based literature reviews regarding outcomes specific to each disease, and the consensus of a disease-specific, multi-disciplinary medical provider panel (4). These clinical pathways describe patient eligibility and the necessary components of survivorship care related to the IOM 4 practice domains. Patients are considered eligible when they are past the period of the highest risk of recurrence. This time for transition may vary by stage (eg, noninvasive breast cancer transitions at 6 months post treatment compared with invasive breast cancer transitioning care at 5 years or stage I colon cancer at 3 years compared with stage II-IV at 5 years). Frequency of surveillance follow-up may differ based on stage (eg, prostate-specific antigen test obtained every 6 months beginning at 2 years post prostatectomy with or without radiation for prostate cancer survivors with T2 tumors and a Gleason score of 7 or less compared with every 4 months beginning 2 years post treatment for patients with T3 tumors and Gleason scores of 8-10). Late-effects monitoring is also risk dependent and specified in each algorithm (eg, TSH/T4 monitoring for head and neck cancer patients receiving radiation therapy, or cardiac monitoring for patients receiving anthracycline-based chemotherapy). In daily practice, these algorithms are available online for reference in the clinic (4). Since 2008, based on these principles of practice, we have developed 12 unique survivorship clinics (11). Over 25 000 unique patients have transitioned to our survivorship model of care and have had nearly 97 000 visits. As shown in Figure 2, the numbers of visits have been consistently increasing, with the exception of 2020, when visits dropped due to the COVID pandemic. Figure 2. Open in new tabDownload slide Total number of arrived appointments across all MD Anderson Cancer Center Survivorship clinics from fiscal year 2009 to fiscal year 2020A. Figure 2. Open in new tabDownload slide Total number of arrived appointments across all MD Anderson Cancer Center Survivorship clinics from fiscal year 2009 to fiscal year 2020A. Treatment Summaries and Passports for Health We have built 25 treatment summary templates in the electronic health record to align with each of the disease-specific clinics. These templates follow the American Society of Clinical Oncology template for treatment summaries and use SmartText (when available) or SmartLink to automatically pull structured data from various documents in the electronic health record (12). Over time, additional elements have been automatically linked to the treatment summaries. Tumor staging and demographic factors are automatically imported. Treatment history is more complex and pulls data from Oncology Treatment Plans, Orders, and Radiation Treatment Plan, with the latter interfacing from a separate system. Cancer-related surgeries are difficult to separate from the more general surgical history. Therefore, depending on how much information is entered into the surgical history, this SmartLink may not be accurate. Given the complexity of oncologic care, reducing the need for manual chart abstraction is vital to achieving compliance with treatment summary completion. Successful development and dissemination of treatment summaries can be a challenge and requires extensive buy-in from both clinical champions and information technology leaders to ensure tools are friendly for both patients and end-users. Algorithm elements are integrated in the Passport Plan for Health, the institution’s survivorship care plan, a separate document from the Treatment Plan. There are 11 unique passports, 1 for each individual adult survivorship clinic. Each component of the disease-specific algorithm is entered in the survivorship care plan to serve as a decision aid for the provider during the clinical encounter. Data fields prompt the provider to enter details regarding disease-specific late effects, surveillance, and cancer-screening recommendations. These data elements export from the electronic health record to track how frequently the clinicians make recommendations in concordance with the algorithms’ guidelines. Concordance reviews of our providers have found high compliance (85%-100%) with providing recommendations across all elements of the algorithm (13,14). An updated survivorship care plan is completed at each visit. Telemedicine Visits A new opportunity for expansion of services is through telemedicine. Because of the COVID-19 pandemic, our institution rapidly expanded and implemented infrastructure to provide telemedicine visits. Our program providers evaluated the utility of virtual care on a clinic-by-clinic basis. Virtual care can be optimal for some types of cancer survivors, particularly those who require surveillance monitoring through laboratory testing (eg, prostate, thyroid). However, it is not ideal for patients who require extensive physical examinations as part of their surveillance care (eg, breast, lymphoma). In the 5 months of clinical activity following the outset of the pandemic, 39% of 2995 visits were delivered via telemedicine modalities. We have worked across our program to share best practices for telemedicine for survivorship providers through monthly meetings. We are gathering feedback from patients on their experience during their tele-visits. Educational Outreach: Lessons Learned With funding from the Cancer Prevention and Research Institute of Texas, we conducted a program with 3 academic postgraduate family medicine training programs located in different regions of the state. These academic centers primarily worked with underserved patient populations (15). The program goals were to increase the knowledge, self-confidence, and efficacy of the family medicine clinicians in providing survivorship care to patients in their practice who were cancer survivors and improve cancer prevention services for their patients. Training was provided with tele-mentoring didactic sessions and consultations through case presentations by the residents using the Project ECHO™ (Extension for Community Healthcare Outcomes) method (15). The results from the pre- and posttraining surveys were administered to residents and faculty members who participated in the program. Results indicated an increase in their self-confidence and efficacy regarding screening services targeting breast and colon cancer survivors. Results also indicated relatively little improvement in their self-confidence regarding management of late effects in long-term cancer survivors. These data suggest that transitioning all components of survivorship care to primary care practices may not be feasible or appropriate for higher risk survivors who need care that is more comprehensive. Future Directions for Novel Survivorship Care Models Specialties needed for complex survivorship care are usually accessible within a comprehensive cancer care environment. However, in community care settings, a care coordinator, or navigator, may be needed to set up appropriate referrals or consultations for patients. In rural environments, where access to these services may be difficult to obtain or are nonexistent, online resources for virtual navigation and telemedicine consultations may be necessary. Even within 1 institution, different models of care can be implemented based on the patient risk levels and the follow-up needs of the survivors. Truly tailoring care to patients’ needs requires thoughtful consideration and creative solutions. The wide variations in care delivery systems and settings make it difficult to direct or dictate “how” care is delivered, but the IOM (now National Academy of Medicine) principles of appropriate care domains should be foundational to whatever delivery process is implemented. Furthermore, not all survivors have the same after-treatment complication risks, and thus not all have the same risk profile. Therefore, survivorship care plans are unique and need to be tailored to patients’ specific diagnoses, treatments, and underlying health and psychosocial conditions. In the 15 years since the IOM report, various models of survivorship care have been proposed; however, challenges still persist in maintaining seamless coordination of care, particularly given the multi-disciplinary team care that is required for complex survivorship issues. Moving forward, efforts should be centered on harnessing the potential of telemedicine models, either for peer-to-peer support and coordination of care or for the virtual support of survivors who are not able to return to or directly access survivorship services after active cancer treatment. Reimbursement models must make survivorship telemedicine visits sustainable so that well-trained survivorship clinicians can provide this type of care. In addition, to truly embed awareness of survivorship as a distinct phase of care along the cancer continuum, it will be necessary to educate primary care specialists and other clinicians about the needs of cancer survivors and include this information and survivorship care clinical experiences in the curriculum of medical school and residency training programs. Funding This work was supported by the Cancer Prevention Research Institute in Texas (CPRIT)-funded project titled “Improving Service Delivery to Cancer Survivors in Primary Care Settings” (grant number PP 160027 to M.A.R.). Notes Role of the funder: Support of data collection. Disclosures: M. Alma Rodriguez—Cancer Prevention Research Institute in Texas (CPRIT) funded project titled “Improving Service Delivery to Cancer Survivors in Primary Care Settings”. Grant Number PP 160027. Katherine R. Gilmore—No conflicts to disclose. Author contributions: KG- Conceptualization, project administration, writing-original draft, writing-review &editing. AR—Conceptualization, funding acquisition, project administration, supervision, validation, writing-original draft, writing-review and editing. Acknowledgements: We wish to acknowledge the contributions of the staff of University of Texas MD Anderson Cancer Center Office of Cancer Survivorship for their efforts and administrative support, which have made the progress described in this manuscript possible. Disclaimers: None. Prior presentations: None. Data Availability The data underlying this article will be shared on reasonable request to the corresponding author. References 1 Hewitt M , Greenfield S, Stovall E. From Cancer Patient to Cancer Survivors: Lost in Transition . Washington, DC : National Academies Press ; 2005 . Google Scholar Google Preview OpenURL Placeholder Text WorldCat COPAC 2 American Society of Clinical Oncology. American Society of Clinical Oncology clinical practice guidelines on survivorship care. 2020. https://www.asco.org/practice-policy/cancer-care-initiatives/prevention-survivorship/survivorship-compendium-0. Accessed April 11, 2021. 3 Denlinger CS , Sanft T, Baker KS, et al. Survivorship. version 2.2018, NCCN clinical practice guidelines in oncology . J Natl Compr Canc Netw . 2018 ; 16 ( 10 ): 1216 – 1247 . Google Scholar Crossref Search ADS PubMed WorldCat 4 The University of Texas MD Anderson Cancer Center cancer survivorship algorithms. https://www.mdanderson.org/for-physicians/clinical-tools-resources/clinical-practice-algorithms/survivorship-algorithms.html. Accessed on April 11, 2021. 5 Foxhall LE , Rodriguez MA. Advances in Cancer Survivorship Management . New York : Springer ; 2015 . Google Scholar Crossref Search ADS Google Preview WorldCat COPAC 6 Rodriguez MA , Foxhall LE. Handbook of Cancer Survivorship Care . New York : DemoMedical, an imprint of Springer Publishing ; 2018 . Google Scholar Crossref Search ADS Google Preview WorldCat COPAC 7 Jacobs LA , Shulman LN. Follow-up care of cancer survivors: challenges and solutions . Lancet Oncol . 2017 ; 18 ( 1 ): e19 – e29 . Google Scholar Crossref Search ADS PubMed WorldCat 8 Mayer DK , Alfano CM. Personalized risk-stratified cancer follow-up care: its potential for healthier survivors, happier clinicians, and lower costs . J Natl Cancer Inst . 2019 ; 111 ( 5 ): 442 – 448 . Google Scholar Crossref Search ADS PubMed WorldCat 9 National Cancer Institute. NCI dictionary of cancer terms: survivorship. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/survivor. Accessed April 11, 2021. 10 Shulman L , et al. American College of Surgeons. Phase-in-standard 4.8 survivorship program. In: Commission on Cancer. Optimal Resources for Cancer Care. 2020 Standards . Chicago, IL : American College of Surgeons ; 2019 : 36 . Google Scholar Google Preview OpenURL Placeholder Text WorldCat COPAC 11 Palos G , Gilmore KR, Bi W, et al. Abstract 5747: a single center's ten-year experience in sustaining a cancer survivorship program . Cancer Res . 2020 ; 80 (16 Supplement): 5747 . Google Scholar OpenURL Placeholder Text WorldCat 12 American Society of Clinical Oncology. ASCO cancer treatment and survivorship care plans. 2021. https://www.cancer.net/survivorship/follow-care-after-cancer-treatment/asco-cancer-treatment-and-survivorship-care-plans. Accessed April 11, 2021. 13 Gilmore KR , Palos GR, Chapman P, et al. Patterns of concordance with clinical algorithms for survivors of head and neck cancers . J Clin Oncol . 2018 ; 36(7_suppl ): 26 . Google Scholar OpenURL Placeholder Text WorldCat 14 Palos GR , Lewis-Patterson PA, Gilmore KR, et al. Providers’ adherence to surveillance recommendations for colon and rectal cancer survivors . J Clin Oncol . 2016 ; 34 (15_suppl ): e21571 . Google Scholar OpenURL Placeholder Text WorldCat 15 Rodriguez MA , Palos GR, Foxhall L, et al. A state wide telementoring medical education program to improve survivorship care. In: 2nd Victorian Conference. Melbourne, Australia; 2016 ; © The Author(s) 2021. Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JNCI Monographs Oxford University Press

Identifying Optimal Program Models and Clinical Tools for Follow-Up Care

Gilmore, Katherine R; Rodriguez, M Alma
JNCI Monographs , Volume 2021 (57) – Sep 3, 2021
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Oxford University Press
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Copyright © 2021 Oxford University Press
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1052-6773
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10.1093/jncimonographs/lgab002
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Abstract

Abstract Fifteen years ago, the Institute of Medicine (IOM) issued a report that defined Survivorship Care as a distinct phase of the cancer care continuum. The required domains to meet the health needs of cancer survivors were outlined in the report: cancer surveillance and screening, cancer prevention and lifestyle counseling, management of treatment related persistent or late effects, coordination of care, and psychosocial support services. In response to that report, The University of Texas MD Anderson Cancer Center implemented a tiered survivorship care model that is risk based. The core principle is that cancer survivors’ health needs will depend on the cancer treatment and disease-specific risks. We here describe this model for low-, intermediate-, and high-risk cancer survivors, in which comanagement between oncology and primary care providers is risk dependent. Our clinical model defines transition as appropriate when there is a minimal risk of primary cancer relapse, which is specific to each cancer type and disease stage. This model is embedded into disease-specific clinical practice algorithms, aligned with the IOM domains of care. Over the past 10 years, we have successfully transitioned nearly 25 000 patients to disease-specific survivorship clinics, providing care based on the IOM domains. We have learned from our process that expansion of survivorship care into established clinical settings requires engagement of champions and key clinical stakeholders. Future directions for survivorship care should explore the application and potential benefits of telemedicine as a care delivery system to meet the needs of cancer survivors. The Institute of Medicine (IOM)’s 2006 Report “From Cancer Patient to Cancer Survivor: Lost in Transition” issued 10 recommendations to address major gaps in the health care of cancer survivors in the United States (1). The first of its 10 recommendations states health-care providers should “raise awareness of the needs of cancer survivors, establish cancer survivorship as a distinct phase of cancer care, and act to ensure the delivery of appropriate survivorship care.” The report stresses that survivorship care is a distinct and critical phase of the cancer care continuum that ensures survivors’ health and well-being after cancer. Currently, 15 years after the publication of that report, there is a persistent debate about survivorship care. When are cancer patients identified to be in the survivorship phase of care, and how should this be determined? Who should deliver survivorship care, and what is the ideal mode of delivery? More importantly, what is “appropriate survivorship care”? Appropriate Patient-Centered Survivorship Care In patient-centered care delivery, each patient’s unique circumstances define the most appropriate care. According to the principles of safe and effective care, survivorship care should deliver the right treatment to the right patient at the right time. However, the right treatment for each unique cancer survivor may be unclear. Active cancer treatment is a well-designed process. Each patient’s treatment is planned and delivered according to the malignancy type, the disease stage, and the patient’s unique risk factors due to comorbid illness or age, as well as other considerations, such as sociocultural preferences. The same factors that are taken into consideration in active cancer treatment should come into play in a patient-centered cancer survivorship care model: risk factors that are specific to the cancer itself (eg, the risk of late recurrence or of secondary or concurrent malignancies); risk factors that are specific to the treatment type (ie, anticipated secondary toxicities of the treatment modality); risks that are associated with chronic health conditions that can increase vulnerability to secondary complications; and social risk factors, including lifestyle risks. According to the IOM report, the comprehensive survivorship care domains should include surveillance for primary malignancy relapse or other secondary malignancies; cancer screening, prevention, and lifestyle counseling; management of persistent or late toxicities; and psychosocial health and well-being. To support the development of our own disease-specific survivorship clinics, structured clinical algorithms that align with these 4 domains and include evidence-based guidelines (eg, colon cancer screening) (2,3) have been developed by clinicians within each clinic. These tools have been invaluable in standardizing care practice across teams (4). This manuscript serves as a case study and review of the implementation of risk-based model of survivorship care over the course of more than a decade. Risk Models for Survivorship Care Delivery As in the active cancer treatment phase, the most optimal survivorship care plan should be multi- and inter-disciplinary and designed in a risk-based framework that is dependent on the complexity of the patient’s needs. Thus, in a risk-based model, multidisciplinary comanagement is most suited to patients who are anticipated to experience sequela from treatment, have risks related to the malignancy itself, or have complex comorbidities. Figure 1 illustrates the risk-based model that we established in 2008 based on input from multi-disciplinary stakeholder focus groups that we held at the outset of our program development, as we have previously described (5,6). More recently, risk-based survivorship care has been affirmed by others as optimal (7,8). Our model integrates the 4 IOM domains of care across 3 risk levels. Risk level 1 has minimal potential for late sequela, and we consider it appropriate to transition patients at this risk level to cancer screening and prevention under the oversight of their primary care physicians. Risk level 2 is more challenging in that patients need both primary care and more focused and expert survivorship care, depending on their risk factors, especially if they experience or are at high risk for treatment-related late effects. Risk level 3 patients require comanagement of ongoing or potentially recurrent oncologic care as well as subspecialty management of late effects from treatment as well as preventive health measures. Figure 1. Open in new tabDownload slide Model of risk-based survivorship care components (The University of Texas MD Anderson Cancer Center, 2020). After completion of acute cancer therapy, all survivors should have access to psychosocial support services as well as cancer prevention and screening services. Survivors who have persistent symptoms or health problems related to treatment toxicities should also have access to specialty experts based on toxicity effects (eg, those with persistent or late-onset cardiac toxicities should have consultation and if possible comanagement by an onco-cardiologist). Patients with an anticipated high risk of recurrence of their primary cancer, or secondary malignancies, will need ongoing comanagement by their oncologist in addition to previously mentioned services. Figure 1. Open in new tabDownload slide Model of risk-based survivorship care components (The University of Texas MD Anderson Cancer Center, 2020). After completion of acute cancer therapy, all survivors should have access to psychosocial support services as well as cancer prevention and screening services. Survivors who have persistent symptoms or health problems related to treatment toxicities should also have access to specialty experts based on toxicity effects (eg, those with persistent or late-onset cardiac toxicities should have consultation and if possible comanagement by an onco-cardiologist). Patients with an anticipated high risk of recurrence of their primary cancer, or secondary malignancies, will need ongoing comanagement by their oncologist in addition to previously mentioned services. Survivorship Phase Transition There is still much debate regarding when it is the appropriate time of transition from oncologic to survivorship phase care and which patients should be receiving survivorship care. Although the National Cancer Institute’s Office of Cancer Survivorship defines cancer survivors very broadly (ie, as any person who is diagnosed with cancer), the new Commission on Cancer Survivorship Standard (4.8) narrows the requirement of survivorship care to only patients who have undergone curative treatment (9,10). Our clinical model defines transition as appropriate when there is a minimal risk of primary cancer relapse, which is specific to each cancer type and disease stage. Patients transition to a cancer prevention specialist, a primary care specialist, or an advanced practice provider team who have expertise and training in cancer survivorship care; multidisciplinary referrals and consultations are coordinated as needed. However, other models advocate a transition to the survivorship phase of care immediately on the completion of active cancer treatment. This latter situation, similar to our stem cell transplant survivorship care process, most optimally requires an oncology specialist to perform surveillance during the period of the highest risk for disease recurrence and an advanced care provider, primary care provider, or other clinical team member to deliver survivorship care. The structure of different clinical transitions is summarized in Table 1. Table 1. Models of survivorship care in a comprehensive cancer centera Survivorship care model . Target population . Special considerations for program development . Disease based Solid tumor survivors, lymphoma survivors Risk-based inclusion criteria; transition from oncology care to survivorship; clinic at point of low risk of recurrence; APP or prevention specialists coordinate multi-modal care Treatment based Stem cell survivors Comanaged survivorship care by APP and transplant physician; patients enter survivorship care early in post-stem cell transplantation period Comprehensive stand-alone Childhood survivors, AYA survivors Risk-based transition to or comanagement care by APP; survivorship care for all tumor types; integration of psychological and social (particularly age-specific issues) care, preventive and age-appropriate multispecialty care Survivorship care model . Target population . Special considerations for program development . Disease based Solid tumor survivors, lymphoma survivors Risk-based inclusion criteria; transition from oncology care to survivorship; clinic at point of low risk of recurrence; APP or prevention specialists coordinate multi-modal care Treatment based Stem cell survivors Comanaged survivorship care by APP and transplant physician; patients enter survivorship care early in post-stem cell transplantation period Comprehensive stand-alone Childhood survivors, AYA survivors Risk-based transition to or comanagement care by APP; survivorship care for all tumor types; integration of psychological and social (particularly age-specific issues) care, preventive and age-appropriate multispecialty care a APP = advanced practice provider; AYA = adolescents and young adulst. Open in new tab Table 1. Models of survivorship care in a comprehensive cancer centera Survivorship care model . Target population . Special considerations for program development . Disease based Solid tumor survivors, lymphoma survivors Risk-based inclusion criteria; transition from oncology care to survivorship; clinic at point of low risk of recurrence; APP or prevention specialists coordinate multi-modal care Treatment based Stem cell survivors Comanaged survivorship care by APP and transplant physician; patients enter survivorship care early in post-stem cell transplantation period Comprehensive stand-alone Childhood survivors, AYA survivors Risk-based transition to or comanagement care by APP; survivorship care for all tumor types; integration of psychological and social (particularly age-specific issues) care, preventive and age-appropriate multispecialty care Survivorship care model . Target population . Special considerations for program development . Disease based Solid tumor survivors, lymphoma survivors Risk-based inclusion criteria; transition from oncology care to survivorship; clinic at point of low risk of recurrence; APP or prevention specialists coordinate multi-modal care Treatment based Stem cell survivors Comanaged survivorship care by APP and transplant physician; patients enter survivorship care early in post-stem cell transplantation period Comprehensive stand-alone Childhood survivors, AYA survivors Risk-based transition to or comanagement care by APP; survivorship care for all tumor types; integration of psychological and social (particularly age-specific issues) care, preventive and age-appropriate multispecialty care a APP = advanced practice provider; AYA = adolescents and young adulst. Open in new tab Developing Survivorship Care Tools to Guide Practice Algorithms (Pathways) for Practice Following the release of the IOM report in 2006, MD Anderson began developing its survivorship program. A key step was building practice algorithms, based on the results of evidence-based literature reviews regarding outcomes specific to each disease, and the consensus of a disease-specific, multi-disciplinary medical provider panel (4). These clinical pathways describe patient eligibility and the necessary components of survivorship care related to the IOM 4 practice domains. Patients are considered eligible when they are past the period of the highest risk of recurrence. This time for transition may vary by stage (eg, noninvasive breast cancer transitions at 6 months post treatment compared with invasive breast cancer transitioning care at 5 years or stage I colon cancer at 3 years compared with stage II-IV at 5 years). Frequency of surveillance follow-up may differ based on stage (eg, prostate-specific antigen test obtained every 6 months beginning at 2 years post prostatectomy with or without radiation for prostate cancer survivors with T2 tumors and a Gleason score of 7 or less compared with every 4 months beginning 2 years post treatment for patients with T3 tumors and Gleason scores of 8-10). Late-effects monitoring is also risk dependent and specified in each algorithm (eg, TSH/T4 monitoring for head and neck cancer patients receiving radiation therapy, or cardiac monitoring for patients receiving anthracycline-based chemotherapy). In daily practice, these algorithms are available online for reference in the clinic (4). Since 2008, based on these principles of practice, we have developed 12 unique survivorship clinics (11). Over 25 000 unique patients have transitioned to our survivorship model of care and have had nearly 97 000 visits. As shown in Figure 2, the numbers of visits have been consistently increasing, with the exception of 2020, when visits dropped due to the COVID pandemic. Figure 2. Open in new tabDownload slide Total number of arrived appointments across all MD Anderson Cancer Center Survivorship clinics from fiscal year 2009 to fiscal year 2020A. Figure 2. Open in new tabDownload slide Total number of arrived appointments across all MD Anderson Cancer Center Survivorship clinics from fiscal year 2009 to fiscal year 2020A. Treatment Summaries and Passports for Health We have built 25 treatment summary templates in the electronic health record to align with each of the disease-specific clinics. These templates follow the American Society of Clinical Oncology template for treatment summaries and use SmartText (when available) or SmartLink to automatically pull structured data from various documents in the electronic health record (12). Over time, additional elements have been automatically linked to the treatment summaries. Tumor staging and demographic factors are automatically imported. Treatment history is more complex and pulls data from Oncology Treatment Plans, Orders, and Radiation Treatment Plan, with the latter interfacing from a separate system. Cancer-related surgeries are difficult to separate from the more general surgical history. Therefore, depending on how much information is entered into the surgical history, this SmartLink may not be accurate. Given the complexity of oncologic care, reducing the need for manual chart abstraction is vital to achieving compliance with treatment summary completion. Successful development and dissemination of treatment summaries can be a challenge and requires extensive buy-in from both clinical champions and information technology leaders to ensure tools are friendly for both patients and end-users. Algorithm elements are integrated in the Passport Plan for Health, the institution’s survivorship care plan, a separate document from the Treatment Plan. There are 11 unique passports, 1 for each individual adult survivorship clinic. Each component of the disease-specific algorithm is entered in the survivorship care plan to serve as a decision aid for the provider during the clinical encounter. Data fields prompt the provider to enter details regarding disease-specific late effects, surveillance, and cancer-screening recommendations. These data elements export from the electronic health record to track how frequently the clinicians make recommendations in concordance with the algorithms’ guidelines. Concordance reviews of our providers have found high compliance (85%-100%) with providing recommendations across all elements of the algorithm (13,14). An updated survivorship care plan is completed at each visit. Telemedicine Visits A new opportunity for expansion of services is through telemedicine. Because of the COVID-19 pandemic, our institution rapidly expanded and implemented infrastructure to provide telemedicine visits. Our program providers evaluated the utility of virtual care on a clinic-by-clinic basis. Virtual care can be optimal for some types of cancer survivors, particularly those who require surveillance monitoring through laboratory testing (eg, prostate, thyroid). However, it is not ideal for patients who require extensive physical examinations as part of their surveillance care (eg, breast, lymphoma). In the 5 months of clinical activity following the outset of the pandemic, 39% of 2995 visits were delivered via telemedicine modalities. We have worked across our program to share best practices for telemedicine for survivorship providers through monthly meetings. We are gathering feedback from patients on their experience during their tele-visits. Educational Outreach: Lessons Learned With funding from the Cancer Prevention and Research Institute of Texas, we conducted a program with 3 academic postgraduate family medicine training programs located in different regions of the state. These academic centers primarily worked with underserved patient populations (15). The program goals were to increase the knowledge, self-confidence, and efficacy of the family medicine clinicians in providing survivorship care to patients in their practice who were cancer survivors and improve cancer prevention services for their patients. Training was provided with tele-mentoring didactic sessions and consultations through case presentations by the residents using the Project ECHO™ (Extension for Community Healthcare Outcomes) method (15). The results from the pre- and posttraining surveys were administered to residents and faculty members who participated in the program. Results indicated an increase in their self-confidence and efficacy regarding screening services targeting breast and colon cancer survivors. Results also indicated relatively little improvement in their self-confidence regarding management of late effects in long-term cancer survivors. These data suggest that transitioning all components of survivorship care to primary care practices may not be feasible or appropriate for higher risk survivors who need care that is more comprehensive. Future Directions for Novel Survivorship Care Models Specialties needed for complex survivorship care are usually accessible within a comprehensive cancer care environment. However, in community care settings, a care coordinator, or navigator, may be needed to set up appropriate referrals or consultations for patients. In rural environments, where access to these services may be difficult to obtain or are nonexistent, online resources for virtual navigation and telemedicine consultations may be necessary. Even within 1 institution, different models of care can be implemented based on the patient risk levels and the follow-up needs of the survivors. Truly tailoring care to patients’ needs requires thoughtful consideration and creative solutions. The wide variations in care delivery systems and settings make it difficult to direct or dictate “how” care is delivered, but the IOM (now National Academy of Medicine) principles of appropriate care domains should be foundational to whatever delivery process is implemented. Furthermore, not all survivors have the same after-treatment complication risks, and thus not all have the same risk profile. Therefore, survivorship care plans are unique and need to be tailored to patients’ specific diagnoses, treatments, and underlying health and psychosocial conditions. In the 15 years since the IOM report, various models of survivorship care have been proposed; however, challenges still persist in maintaining seamless coordination of care, particularly given the multi-disciplinary team care that is required for complex survivorship issues. Moving forward, efforts should be centered on harnessing the potential of telemedicine models, either for peer-to-peer support and coordination of care or for the virtual support of survivors who are not able to return to or directly access survivorship services after active cancer treatment. Reimbursement models must make survivorship telemedicine visits sustainable so that well-trained survivorship clinicians can provide this type of care. In addition, to truly embed awareness of survivorship as a distinct phase of care along the cancer continuum, it will be necessary to educate primary care specialists and other clinicians about the needs of cancer survivors and include this information and survivorship care clinical experiences in the curriculum of medical school and residency training programs. Funding This work was supported by the Cancer Prevention Research Institute in Texas (CPRIT)-funded project titled “Improving Service Delivery to Cancer Survivors in Primary Care Settings” (grant number PP 160027 to M.A.R.). Notes Role of the funder: Support of data collection. Disclosures: M. Alma Rodriguez—Cancer Prevention Research Institute in Texas (CPRIT) funded project titled “Improving Service Delivery to Cancer Survivors in Primary Care Settings”. Grant Number PP 160027. Katherine R. Gilmore—No conflicts to disclose. Author contributions: KG- Conceptualization, project administration, writing-original draft, writing-review &editing. AR—Conceptualization, funding acquisition, project administration, supervision, validation, writing-original draft, writing-review and editing. Acknowledgements: We wish to acknowledge the contributions of the staff of University of Texas MD Anderson Cancer Center Office of Cancer Survivorship for their efforts and administrative support, which have made the progress described in this manuscript possible. Disclaimers: None. Prior presentations: None. Data Availability The data underlying this article will be shared on reasonable request to the corresponding author. References 1 Hewitt M , Greenfield S, Stovall E. From Cancer Patient to Cancer Survivors: Lost in Transition . Washington, DC : National Academies Press ; 2005 . Google Scholar Google Preview OpenURL Placeholder Text WorldCat COPAC 2 American Society of Clinical Oncology. American Society of Clinical Oncology clinical practice guidelines on survivorship care. 2020. https://www.asco.org/practice-policy/cancer-care-initiatives/prevention-survivorship/survivorship-compendium-0. Accessed April 11, 2021. 3 Denlinger CS , Sanft T, Baker KS, et al. Survivorship. version 2.2018, NCCN clinical practice guidelines in oncology . J Natl Compr Canc Netw . 2018 ; 16 ( 10 ): 1216 – 1247 . Google Scholar Crossref Search ADS PubMed WorldCat 4 The University of Texas MD Anderson Cancer Center cancer survivorship algorithms. https://www.mdanderson.org/for-physicians/clinical-tools-resources/clinical-practice-algorithms/survivorship-algorithms.html. Accessed on April 11, 2021. 5 Foxhall LE , Rodriguez MA. Advances in Cancer Survivorship Management . New York : Springer ; 2015 . Google Scholar Crossref Search ADS Google Preview WorldCat COPAC 6 Rodriguez MA , Foxhall LE. Handbook of Cancer Survivorship Care . New York : DemoMedical, an imprint of Springer Publishing ; 2018 . Google Scholar Crossref Search ADS Google Preview WorldCat COPAC 7 Jacobs LA , Shulman LN. Follow-up care of cancer survivors: challenges and solutions . Lancet Oncol . 2017 ; 18 ( 1 ): e19 – e29 . Google Scholar Crossref Search ADS PubMed WorldCat 8 Mayer DK , Alfano CM. Personalized risk-stratified cancer follow-up care: its potential for healthier survivors, happier clinicians, and lower costs . J Natl Cancer Inst . 2019 ; 111 ( 5 ): 442 – 448 . Google Scholar Crossref Search ADS PubMed WorldCat 9 National Cancer Institute. NCI dictionary of cancer terms: survivorship. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/survivor. Accessed April 11, 2021. 10 Shulman L , et al. American College of Surgeons. Phase-in-standard 4.8 survivorship program. In: Commission on Cancer. Optimal Resources for Cancer Care. 2020 Standards . Chicago, IL : American College of Surgeons ; 2019 : 36 . Google Scholar Google Preview OpenURL Placeholder Text WorldCat COPAC 11 Palos G , Gilmore KR, Bi W, et al. Abstract 5747: a single center's ten-year experience in sustaining a cancer survivorship program . Cancer Res . 2020 ; 80 (16 Supplement): 5747 . Google Scholar OpenURL Placeholder Text WorldCat 12 American Society of Clinical Oncology. ASCO cancer treatment and survivorship care plans. 2021. https://www.cancer.net/survivorship/follow-care-after-cancer-treatment/asco-cancer-treatment-and-survivorship-care-plans. Accessed April 11, 2021. 13 Gilmore KR , Palos GR, Chapman P, et al. Patterns of concordance with clinical algorithms for survivors of head and neck cancers . J Clin Oncol . 2018 ; 36(7_suppl ): 26 . Google Scholar OpenURL Placeholder Text WorldCat 14 Palos GR , Lewis-Patterson PA, Gilmore KR, et al. Providers’ adherence to surveillance recommendations for colon and rectal cancer survivors . J Clin Oncol . 2016 ; 34 (15_suppl ): e21571 . Google Scholar OpenURL Placeholder Text WorldCat 15 Rodriguez MA , Palos GR, Foxhall L, et al. A state wide telementoring medical education program to improve survivorship care. In: 2nd Victorian Conference. Melbourne, Australia; 2016 ; © The Author(s) 2021. Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model)

Journal

JNCI Monographs – Oxford University Press

Published: Sep 3, 2021

Keywords: cancer; cancer care facilities; continuity of patient care; delivery of health care; follow-up; institute of medicine (u.s.); medical oncology; telemedicine; persistence; cancer therapy; clinical diagnostic instrument; cancer screening; coordination of care; primary care provider; collaborative care; cancer surveillance; prevention; psychosocial care; lifestyle education; psychosocial support systems; cancer survivors

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