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Rationale and Design of a Telehealth Self-Management, Shared Care Intervention for Post-treatment Survivors of Lung and Colorectal Cancer

Rationale and Design of a Telehealth Self-Management, Shared Care Intervention for Post-treatment... Survivors of lung and colorectal cancer have high post-treatment needs; the majority are older and suffer from greater comor- bidities and poor quality of life (QOL). They remain underrepresented in research, leading to significant disparities in post- treatment outcomes. Personalized post-treatment follow-up care and care coordination among healthcare teams is a priority for survivors of lung and colorectal cancer. However, there are few evidence-based interventions that address survivors’ post- treatment needs beyond the use of a follow-up care plan. This paper describes the rationale and design of an evidence- informed telehealth intervention that integrates shared care coordination between oncology/primary care and self-management skills building to empower post-treatment survivors of lung and colorectal cancer. The intervention design was informed by (1) contemporary published evidence on cancer survivorship, (2) our previous research in lung and colorectal cancer survivorship, (3) the chronic care self-management model (CCM), and (4) shared post-treatment follow-up care between oncology and primary care. A two-arm, parallel randomized controlled trial will determine the efficacy of the telehealth intervention to improve cancer care delivery and survivor-specific outcomes. ClinicalTrials.gov Identifier: NCT04428905 . . . . . . Keywords Cancer survivorship Lung cancer Colorectal cancer Self-management Shared care Self-efficacy Primary care Introduction Lung cancer is the second most common cancer diagnosis in the USA, and more than 570,000 Americans are living with More than 16 million Americans, most over age 65, are living a history of lung cancer [9]. Median age at diagnosis is 70. with a history of cancer [1]. Post-treatment unmet healthcare Due to advances in early detection and treatment, lung cancer needs are common, particularly for survivors of lung and co- survivors are living longer [10]. Treatment-induced late and lorectal cancer. Our previous research and those from the pub- long-term effects are common and include radiation pneumo- lished literature suggest that lung and colorectal cancer survi- nitis, pulmonary fibrosis, post-thoracotomy pain syndrome, vors suffer from persistent long-term effects of treatment, such chemotherapy-induced peripheral neuropathy, fatigue, dys- as dyspnea, fatigue, pain/neuropathy, bowel dysfunction, os- pnea, cough, and immune-related adverse events [11, 12]. tomy care, anxiety, depression, and distress. These symptoms Up to 50% of survivors experience impaired pulmonary func- contribute to a dramatic deterioration in post-primary treat- tion [13]. Between 11 and 44% of survivors report psycholog- ment quality of life (QOL) [2–8]. ical distress and depression post-treatment, and these are often severe enough to require intervention [14]. As a result of to- bacco exposure, survivors of lung cancer have an increased * Virginia Sun risk for smoking-related comorbidities, including chronic ob- vsun@coh.org structive pulmonary disease and cardiovascular disease [15]. Survivors who are current and former smokers are at risk for Department of Population Sciences, City of Hope, Duarte, CA, USA developing a second lung cancer and other smoking-related Department of Surgery, City of Hope, Duarte, CA, USA cancers, particularly in the head and neck and urinary tract [16]. Department of Family Medicine, University of California, Riverside, CA, USA An estimated 1.5 million Americans are living with a his- tory of colorectal cancer, and three-quarters (76%) are 65 Department of Medical Oncology and Therapeutics Research, City of Hope, Duarte, CA, USA years and older [17]. Recent trends suggest that rates of J Canc Educ (2021) 36:414–420 415 colorectal cancer are increasing in adults 55 years and younger systematically and consistently addressed through productive [18]. These trends suggest that the number of younger survi- interactions between survivors and the healthcare team [29]. A vors of colorectal cancer will continue to increase in the years central construct of self-management is self-efficacy, defined to come. Common late and long-term effects of treatment as confidence to carry out behaviors necessary to achieve a include oxaliplatin-induced peripheral neuropathy, bladder desired goal [30]. Self-efficacy is enhanced when survivors dysfunction, sexual dysfunction, and chronic diarrhea [19, succeed in building confidence in their ability to manage their 20]. Bowel dysfunction is common among survivors of rectal follow-up care. cancer and is associated with frequent and erratic bowel Several well-established behavioral approaches are includ- movements, fecal incontinence, soiling, gas, bloating, and os- ed in the intervention. Survivors are coached to identify and cillations between diarrhea and constipation [21, 22]. set short- and long-term goals in relation to their post- Persistent bowel symptoms lead to reduced social activities, treatment care. Specific, measurable, attainable, realistic, and poor emotional well-being, and decrements in QOL [23]. A time-bound (SMART) goal setting provides clarity for survi- permanent colostomy may be required in 29% of survivors of vors and APRNs in terms of structure and expected outcomes rectal cancer [24. Permanent colostomies represent a major [31]. Goal setting is combined with self-monitoring of late and life adjustment and often result in financial toxicity due to long-term effects to promote self-efficacy in symptom man- lifelong need to pay for ostomy supplies [25]. Negative body agement, comorbidity management, and maintenance of image leads to social isolation, psychological distress, and physical functioning [31]. The APRNs work with survivors depression [20]. Survivors’ adherence to healthy lifestyle be- to identify potential challenges and problems to self- haviors (diet, physical activity) is inadequate and leads to in- management; it is key that survivors identify the challenges creased risk of cancer recurrence and obesity-related comor- as well as potential solutions rather than the APRN. bidities [24]. Ultimately, the survivor and the APRN define new realistic In addition to QOL concerns, post-treatment care chal- and adoptable strategies to achieve the best post-treatment lenges are compounded by the growing complexity of cancer follow-up care and QOL possible. care and fragmented follow-up. A potential solution to the The interventionisalsoguidedbyNekhlyudovand col- post-treatment care challenge is through advanced practice leagues’ quality of cancer survivorship care framework [32]. nurse (APRN)-led follow-up care that promotes survivor There are five quality survivorship care domains within the self-management skills training. In addition, the APRN-led framework, and these include surveillance/management of follow-up care includes care coordination between oncology physical effects, psychosocial effects, comorbidities, preven- and primary care to address surveillance, comorbidity man- tion and surveillance for recurrence and new cancers, and agement, and healthy living/preventive care. The purpose of health promotion/disease prevention. These domains are the key content for self-management skills building component of this paper is to describe the rationale, development, and design of a telehealth self-management, shared care intervention for the intervention. The clinical care structure for the intervention post-treatment survivors of stages I–III lung and colorectal is APRN-driven and disease-specific (lung, colorectal). This cancer. structure was selected because APRNs have adequate training and skills to address follow-up care issues [33]. In follow-up care, APRNs often serve as care coordinators and the commu- Intervention Overview nication bridge between multiple specialties. In addition, APRNs are heavily embedded within oncology care struc- Conceptual Frameworks tures, practicing alongside oncologists in all settings. The shared care approach focuses on the collaboration between Intervention design is guided by the chronic care self- oncology and primary care and leverage the expertise of each management model (CCM) [26–28]. Self-management is de- specialty to address the survivor’s needs within the five qual- fined as “the systematic provision of education and supportive ity domains. The technology platform leverages telehealth interventions to increase survivors’ skills and confidence in (videoconferencing) for intervention delivery, which can po- managing their health problems, including goal setting and tentially decrease travel burden, increase scalability/sustain- problem-solving” [29]. The CCM transforms a reactive health ability, and reduce burden on institutional clinic space. system into one that improves survivor outcomes through proactive planning and building self-efficacy. Central to self- Intervention Content management is the concept that chronic illness management is a partnership between survivor and the healthcare team. The intervention is an evidence-informed, APRN-driven, self- Together, the partners identify goals that are important to management shared care model of personalized cancer post-treatment follow-up care and develop realistic action follow-up care. It includes the following components: (1) care plans to meet those goals [29]. Needs and goals are coordination and communication between oncology and 416 J Canc Educ (2021) 36:414–420 primary care on health promotion, cancer prevention, and co- through email and telephone. A brief, two-page clinician morbidity management; (2) provision of a clinician care plan follow-up care plan is emailed or mailed to the PCP. The brief for PCPs; (3) comprehensive patient/geriatric assessment; (4) clinician-focused care plan contains information on the PCP’s personalized follow-up care plan for survivors; and (5) survi- care responsibilities, which includes (1) health promotion (di- vor self-management skills building for surveillance/follow- et, physical activity, alcohol use, sun protection, etc.); (2) up, late and long-term effects of treatment, and comorbidities. vaccinations/other cancer screening; and (3) comorbidity The intervention is delivered through five telehealth, vid- management. The APRN reviews the clinician care plan with eoconferencing sessions over a 4-month period, followed by the PCP and discusses shared care responsibilities by tele- three monthly maintenance telehealth sessions (see Table 1). phone. Secure exchange of oncology and PCP clinic visit Each session lasts approximately 30–60 min. Prior to initiat- notes is coordinated by the APRN and entered into the cancer ing the telehealth sessions, the APRN collaborates with the center’s electronic health record (EHR). All survivors receive oncology team and generates a personalized surveillance/ a comprehensive resource manual that contains session con- follow-up plan for each participant. Using baseline patient- tent and additional resources. reported outcomes (PROs) on QOL and patient/geriatric as- In telehealth session 1, the APRN reviews the personalized sessment, the APRN develops a personalized follow-up care follow-up care plan with the survivor to tailor the follow-up plan. The geriatric assessment is administered to survivors of care plan based on needs and preferences. SMART goals of all ages because many of the constructs (social support, func- follow-up care are identified. In sessions 2 and 3, late/long- tional status) are relevant regardless of age. term effects of treatment and comorbidity management are For survivors with an identified PCP, the APRN initiates discussed. The APRN coaches survivors on managing physi- communication and care coordination with the PCP team cal (including signs and symptoms of recurrence), emotional, Table 1 Intervention content Component Content Before sessions � APRN and oncologist generate personalized surveillance/follow-up plan � APRN complete personalized survivorship care plan/resource manual using baseline PROs and patient/geriatric assessment Session 1 � APRN finalize and review care plan/resource manual with survivors � SMART goal setting � PCP identification � APRN complete brief (2 page) clinician survivorship care plan and send to PCP � Review shared care responsibilities with PCP � Clinic encounter notes exchange between oncology and primary care Sessions 2 and 3 � Review care plan/resource manual Late/long-term effects and comorbidity � Discuss physical, emotional, social, and spiritual well-being concerns management � Discuss signs and symptoms of recurrence � Discuss comorbidity management � Identify challenges; discuss strategies to overcome challenges through problem-solving � Review institutional/community resources � Initiate referrals as needed � Review and assess SMART goals � PCP engagement on shared care responsibilities Sessions 4 and 5 � Review care plan/resource manual Physical functioning and healthy living � Discuss maintaining physical functioning � Discuss healthy living recommendations � Identify challenges; discuss strategies to overcome challenges through problem-solving � Provide institutional/community resources � Initiate referrals as needed � Review and assess SMART goals � PCP engagement on shared care Monthly maintenance sessions � Review self-management skills, SMART goals, and care plan/resource manual � PCP engagement on shared care � APRN recommendation on possible full transition of care to PCP, or continue with shared care � Discussion with survivors on preference for full transition or continued shared care APRN � Communication and care coordination between oncologist and PCP (throughout the study) J Canc Educ (2021) 36:414–420 417 social, and spiritual well-being issues. Comorbidities are cardiovascular, pulmonary) [38]. Multimorbidity is associated reviewed, and self-management strategies are discussed; this with treatment-related adverse events, poorer outcomes, and includes a focus on the care responsibility of different challenges in care coordination due to complexity of care [15]. healthcare teams (oncologist versus PCP). Survivors identify For older cancer survivors, comprehensive geriatric assess- unique and relevant challenges related to late/long-term ef- ment can improve the quality of follow-up care. Geriatric as- fects and comorbidity management and develop an action plan sessment is used to understand the heterogeneity of the aging to overcome the challenges. Together, the APRN and survivor process through an evaluation of a survivor’s (1) functional identify potential institutional and community resources. status, (2) comorbidities, (3) cognition, (4) psychological sta- SMART goals are reviewed and revised. tus, (5) social functioning and support, (6) medication review, Sessions 4 and 5 focus on physical functioning and healthy and (7) nutritional status [39]. Each of these domains is an living. Specifically, survivors are coached on strategies to independent predictor of morbidity and/or mortality in the maintain physical functioning. Healthy living recommenda- geriatric population. The comprehensive assessment can im- tions (diet, physical activity, tobacco cessation) are introduced prove outcomes for older survivors by identifying areas of and discussed. This includes (1) identification of perceived vulnerability in need of targeted interventions [40]. barriers to behavior change, (2) prior plans or strategies to In most cancer care settings, survivor follow-up care is overcome these barriers, and (3) identification of new strate- largely provided by oncologists. Survivors prefer to be follow- gies that are adoptable to promote health behaviors. ed by oncologists due in part to the lack of follow-up care Functional capacity (falls prevention, gait, balance) is expertise in non-oncology providers (i.e., PCPs). Survivors reviewed. Institutional and community resources are identi- also have a higher level of emotional trust with oncologists fied, and referrals initiated (i.e., rehabilitation services) as that was developed during treatment [41]. From the oncolo- needed. SMART goals are reviewed and revised as needed. gist’s perspective, seeing patients that are doing well after Three monthly telehealth maintenance sessions are admin- treatment may reduce work-related stress and burnout and istered following the completion of session 5. In these ses- contribute to higher job satisfaction [36]. Full transition of sions, the APRN reviews progress on the survivors’ self- all survivors to PCP care is also impossible and likely inap- management skills building and provides additional coaching propriate, due to a lack of formal training on follow-up cancer as needed. SMART goals and personalized follow-up care care and lack of time [42]. The anticipated shortage of the plans are reviewed and revised as needed. Care coordination oncology workforce has resulted in greater delegation of com- and communication with PCPs continue regularly during the plex cancer care to oncology advanced practice nurses maintenance session months. (APRNs), who are also experiencing workforce shortages [43]. Robust evidence suggests that improved health out- comes are associated with oncology APRN-led care Discussion [44–46]. Hence, oncology APRNs are in an optimal position to support cancer survivors’ self-management skills building, A recent National Academy of Science Workshop found that coordinate care with a PCPs, and use telehealth effectively for current models of follow-up care fail in meeting the needs of post-treatment follow-up. survivors, despite decades of progress in research [34]. The shared care model can free up busy oncology clinics, Limited evidence exists on the efficacy of follow-up care ap- eliminate the need to transition all survivors to busy PCPs, proaches. Focused efforts are needed to improve care delivery provide efficient and timely care coordination with the oncol- and increase adherence to long-term treatment and follow-up ogists when needed, and promote personalized survivor- care guidelines. Hybrid approaches may facilitate communi- centered follow-up care [36]. Shared care is likely most ap- cation and care coordination among primary care, oncology, propriate for lung and colorectal cancer survivors with multi- and survivors [35]. ple complex needs and low to moderate levels of risk for The anticipated aging of the US population will increase recurrence, secondary cancers, symptom burden, functional the complexity of cancer care, because older adults are more declines, and comorbidities. Evidence from other countries likely to have higher non-cancer specific needs (functional suggests that in breast cancer survivors, the personalized ap- declines, comorbidities) in addition to cancer-specific needs proach improves receipt of timely follow-up screening, de- [36]. Nearly 64% of cancer survivors are 65 years and older, creased waiting time to receive oncology care, and freed up and this number is estimated to rise to 73% by 2040 [17]. The clinician time by shifting resources to survivors with more presence of comorbidities, decline in organ function or phys- complex needs [47]. Implementation of the shared care model iologic reserves, and increased need for assistance with daily and a personalized follow-up approach will likely be more function complicates the care of older survivors [37]. complex in the USA due to diverse care delivery systems. Multimorbidity is one of the greatest challenges in caring for The APRN-led care coordination and communication can po- tentially reduce care fragmentation. older survivors; > 50% have three or more comorbidities (e.g., 418 J Canc Educ (2021) 36:414–420 For cancer survivors, treatment completion does not indi- randomized controlled trial of an APRN-driven telehealth in- cate an end to their cancer experience [48]. Ongoing relation- tervention on healthcare team knowledge of follow-up care, ships with the healthcare system are needed to manage post- care coordination between oncologist/PCP, communication treatment care and require long-term planning rather than across medical disciplines, and survivor-specific outcomes acute, prescriptive relationships [29]. Being adequately pre- (confidence in follow-up care, QOL). pared for post-treatment self-management can empower can- Authors’ Contributions All authors contributed to the study conception cer survivors and improve their confidence in managing their and design. All authors commented on previous versions of the manu- overall healthcare [49, 50]. For cancer survivors, self- script. All authors read and approved the final manuscript. management skills building should include coaching patients on signs and symptoms of recurrence, cancer prevention, post- Funding Research reported in this paper is supported by the National treatment symptoms, and comorbidities [36]. The National Cancer Institute of the National Institutes of Health under award number R01CA249501-01 (PI: Sun). The statements presented in this article are Academy of Medicine (formerly the Institute of Medicine) solely the responsibility of the author(s) and do not necessarily represent defines self-management support as the “systematic provision the official views of the National Institutes of Health. of interventions to increase skills and self-efficacy in manag- ing health problems, including regular assessment of prob- Data Availability NA lems, goal-setting, and problem-solving support” [51]. Current evidence suggests that cancer survivors with low Compliance with Ethical Standards self-efficacy report worse physical and psychological well- being [50]. This suggests that interventions targeted at increas- Conflict of interest The authors declare that they have no conflict of interest. ing self-efficacy and self-management may be beneficial for this population. Two randomized trials of self-management Ethics Approval Study protocol is reviewed and approved by the interventions reported trends toward greater self-efficacy, im- Institutional Review Board. proved general health, and greater provider implementation of recommended care in breast cancer survivors [52, 53]. Consent to Participate All participants provide informed consent. Effective self-management interventions can transform a re- active healthcare system into one that improves survivor out- Consent for Publication All authors provided consent for publication. comes through proactive planning [54]. In addition to addressing survivor needs, self-management Code Availability NA skills building is a key component of personalized cancer Open Access This article is licensed under a Creative Commons follow-up care [49]. In the UK and Australia, where survivor- Attribution 4.0 International License, which permits use, sharing, adap- ship care is a national initiative, preliminary evidence points to tation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, pro- self-management skills training as the driving factor for per- vide a link to the Creative Commons licence, and indicate if changes were sonalized follow-up based on risk [55]. The evidence shows made. The images or other third party material in this article are included that up to 50% of colorectal cancer survivors who were treated in the article's Creative Commons licence, unless indicated otherwise in a with curative intent were able to self-manage after treatment credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by completion [56]. Supporting survivors’ self-management statutory regulation or exceeds the permitted use, you will need to obtain skills may free up oncology clinic space and time and reduce permission directly from the copyright holder. To view a copy of this burden on the healthcare system [36, 55]. There is a need to licence, visit http://creativecommons.org/licenses/by/4.0/. test full-scale post-treatment self-management interventions and evaluate similar outcomes in the US healthcare system. Conclusions References 1. 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Accessed 12 Sept 2020 for adult cancer survivors after treatment: a systematic review and meta-analysis. Oncol Nurs Forum 44(6):719–728 49. Howell D, Mayer DK, Fielding R, Eicher M, Verdonck-de Leeuw Publisher’sNote Springer Nature remains neutral with regard to jurisdic- IM, Johansen C, Soto-Perez-de-Celis E, Foster C, Chan R, Alfano tional claims in published maps and institutional affiliations. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of Cancer Education Springer Journals

Rationale and Design of a Telehealth Self-Management, Shared Care Intervention for Post-treatment Survivors of Lung and Colorectal Cancer

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Springer Journals
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Copyright © The Author(s) 2021. corrected publication February 2021
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0885-8195
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10.1007/s13187-021-01958-8
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Abstract

Survivors of lung and colorectal cancer have high post-treatment needs; the majority are older and suffer from greater comor- bidities and poor quality of life (QOL). They remain underrepresented in research, leading to significant disparities in post- treatment outcomes. Personalized post-treatment follow-up care and care coordination among healthcare teams is a priority for survivors of lung and colorectal cancer. However, there are few evidence-based interventions that address survivors’ post- treatment needs beyond the use of a follow-up care plan. This paper describes the rationale and design of an evidence- informed telehealth intervention that integrates shared care coordination between oncology/primary care and self-management skills building to empower post-treatment survivors of lung and colorectal cancer. The intervention design was informed by (1) contemporary published evidence on cancer survivorship, (2) our previous research in lung and colorectal cancer survivorship, (3) the chronic care self-management model (CCM), and (4) shared post-treatment follow-up care between oncology and primary care. A two-arm, parallel randomized controlled trial will determine the efficacy of the telehealth intervention to improve cancer care delivery and survivor-specific outcomes. ClinicalTrials.gov Identifier: NCT04428905 . . . . . . Keywords Cancer survivorship Lung cancer Colorectal cancer Self-management Shared care Self-efficacy Primary care Introduction Lung cancer is the second most common cancer diagnosis in the USA, and more than 570,000 Americans are living with More than 16 million Americans, most over age 65, are living a history of lung cancer [9]. Median age at diagnosis is 70. with a history of cancer [1]. Post-treatment unmet healthcare Due to advances in early detection and treatment, lung cancer needs are common, particularly for survivors of lung and co- survivors are living longer [10]. Treatment-induced late and lorectal cancer. Our previous research and those from the pub- long-term effects are common and include radiation pneumo- lished literature suggest that lung and colorectal cancer survi- nitis, pulmonary fibrosis, post-thoracotomy pain syndrome, vors suffer from persistent long-term effects of treatment, such chemotherapy-induced peripheral neuropathy, fatigue, dys- as dyspnea, fatigue, pain/neuropathy, bowel dysfunction, os- pnea, cough, and immune-related adverse events [11, 12]. tomy care, anxiety, depression, and distress. These symptoms Up to 50% of survivors experience impaired pulmonary func- contribute to a dramatic deterioration in post-primary treat- tion [13]. Between 11 and 44% of survivors report psycholog- ment quality of life (QOL) [2–8]. ical distress and depression post-treatment, and these are often severe enough to require intervention [14]. As a result of to- bacco exposure, survivors of lung cancer have an increased * Virginia Sun risk for smoking-related comorbidities, including chronic ob- vsun@coh.org structive pulmonary disease and cardiovascular disease [15]. Survivors who are current and former smokers are at risk for Department of Population Sciences, City of Hope, Duarte, CA, USA developing a second lung cancer and other smoking-related Department of Surgery, City of Hope, Duarte, CA, USA cancers, particularly in the head and neck and urinary tract [16]. Department of Family Medicine, University of California, Riverside, CA, USA An estimated 1.5 million Americans are living with a his- tory of colorectal cancer, and three-quarters (76%) are 65 Department of Medical Oncology and Therapeutics Research, City of Hope, Duarte, CA, USA years and older [17]. Recent trends suggest that rates of J Canc Educ (2021) 36:414–420 415 colorectal cancer are increasing in adults 55 years and younger systematically and consistently addressed through productive [18]. These trends suggest that the number of younger survi- interactions between survivors and the healthcare team [29]. A vors of colorectal cancer will continue to increase in the years central construct of self-management is self-efficacy, defined to come. Common late and long-term effects of treatment as confidence to carry out behaviors necessary to achieve a include oxaliplatin-induced peripheral neuropathy, bladder desired goal [30]. Self-efficacy is enhanced when survivors dysfunction, sexual dysfunction, and chronic diarrhea [19, succeed in building confidence in their ability to manage their 20]. Bowel dysfunction is common among survivors of rectal follow-up care. cancer and is associated with frequent and erratic bowel Several well-established behavioral approaches are includ- movements, fecal incontinence, soiling, gas, bloating, and os- ed in the intervention. Survivors are coached to identify and cillations between diarrhea and constipation [21, 22]. set short- and long-term goals in relation to their post- Persistent bowel symptoms lead to reduced social activities, treatment care. Specific, measurable, attainable, realistic, and poor emotional well-being, and decrements in QOL [23]. A time-bound (SMART) goal setting provides clarity for survi- permanent colostomy may be required in 29% of survivors of vors and APRNs in terms of structure and expected outcomes rectal cancer [24. Permanent colostomies represent a major [31]. Goal setting is combined with self-monitoring of late and life adjustment and often result in financial toxicity due to long-term effects to promote self-efficacy in symptom man- lifelong need to pay for ostomy supplies [25]. Negative body agement, comorbidity management, and maintenance of image leads to social isolation, psychological distress, and physical functioning [31]. The APRNs work with survivors depression [20]. Survivors’ adherence to healthy lifestyle be- to identify potential challenges and problems to self- haviors (diet, physical activity) is inadequate and leads to in- management; it is key that survivors identify the challenges creased risk of cancer recurrence and obesity-related comor- as well as potential solutions rather than the APRN. bidities [24]. Ultimately, the survivor and the APRN define new realistic In addition to QOL concerns, post-treatment care chal- and adoptable strategies to achieve the best post-treatment lenges are compounded by the growing complexity of cancer follow-up care and QOL possible. care and fragmented follow-up. A potential solution to the The interventionisalsoguidedbyNekhlyudovand col- post-treatment care challenge is through advanced practice leagues’ quality of cancer survivorship care framework [32]. nurse (APRN)-led follow-up care that promotes survivor There are five quality survivorship care domains within the self-management skills training. In addition, the APRN-led framework, and these include surveillance/management of follow-up care includes care coordination between oncology physical effects, psychosocial effects, comorbidities, preven- and primary care to address surveillance, comorbidity man- tion and surveillance for recurrence and new cancers, and agement, and healthy living/preventive care. The purpose of health promotion/disease prevention. These domains are the key content for self-management skills building component of this paper is to describe the rationale, development, and design of a telehealth self-management, shared care intervention for the intervention. The clinical care structure for the intervention post-treatment survivors of stages I–III lung and colorectal is APRN-driven and disease-specific (lung, colorectal). This cancer. structure was selected because APRNs have adequate training and skills to address follow-up care issues [33]. In follow-up care, APRNs often serve as care coordinators and the commu- Intervention Overview nication bridge between multiple specialties. In addition, APRNs are heavily embedded within oncology care struc- Conceptual Frameworks tures, practicing alongside oncologists in all settings. The shared care approach focuses on the collaboration between Intervention design is guided by the chronic care self- oncology and primary care and leverage the expertise of each management model (CCM) [26–28]. Self-management is de- specialty to address the survivor’s needs within the five qual- fined as “the systematic provision of education and supportive ity domains. The technology platform leverages telehealth interventions to increase survivors’ skills and confidence in (videoconferencing) for intervention delivery, which can po- managing their health problems, including goal setting and tentially decrease travel burden, increase scalability/sustain- problem-solving” [29]. The CCM transforms a reactive health ability, and reduce burden on institutional clinic space. system into one that improves survivor outcomes through proactive planning and building self-efficacy. Central to self- Intervention Content management is the concept that chronic illness management is a partnership between survivor and the healthcare team. The intervention is an evidence-informed, APRN-driven, self- Together, the partners identify goals that are important to management shared care model of personalized cancer post-treatment follow-up care and develop realistic action follow-up care. It includes the following components: (1) care plans to meet those goals [29]. Needs and goals are coordination and communication between oncology and 416 J Canc Educ (2021) 36:414–420 primary care on health promotion, cancer prevention, and co- through email and telephone. A brief, two-page clinician morbidity management; (2) provision of a clinician care plan follow-up care plan is emailed or mailed to the PCP. The brief for PCPs; (3) comprehensive patient/geriatric assessment; (4) clinician-focused care plan contains information on the PCP’s personalized follow-up care plan for survivors; and (5) survi- care responsibilities, which includes (1) health promotion (di- vor self-management skills building for surveillance/follow- et, physical activity, alcohol use, sun protection, etc.); (2) up, late and long-term effects of treatment, and comorbidities. vaccinations/other cancer screening; and (3) comorbidity The intervention is delivered through five telehealth, vid- management. The APRN reviews the clinician care plan with eoconferencing sessions over a 4-month period, followed by the PCP and discusses shared care responsibilities by tele- three monthly maintenance telehealth sessions (see Table 1). phone. Secure exchange of oncology and PCP clinic visit Each session lasts approximately 30–60 min. Prior to initiat- notes is coordinated by the APRN and entered into the cancer ing the telehealth sessions, the APRN collaborates with the center’s electronic health record (EHR). All survivors receive oncology team and generates a personalized surveillance/ a comprehensive resource manual that contains session con- follow-up plan for each participant. Using baseline patient- tent and additional resources. reported outcomes (PROs) on QOL and patient/geriatric as- In telehealth session 1, the APRN reviews the personalized sessment, the APRN develops a personalized follow-up care follow-up care plan with the survivor to tailor the follow-up plan. The geriatric assessment is administered to survivors of care plan based on needs and preferences. SMART goals of all ages because many of the constructs (social support, func- follow-up care are identified. In sessions 2 and 3, late/long- tional status) are relevant regardless of age. term effects of treatment and comorbidity management are For survivors with an identified PCP, the APRN initiates discussed. The APRN coaches survivors on managing physi- communication and care coordination with the PCP team cal (including signs and symptoms of recurrence), emotional, Table 1 Intervention content Component Content Before sessions � APRN and oncologist generate personalized surveillance/follow-up plan � APRN complete personalized survivorship care plan/resource manual using baseline PROs and patient/geriatric assessment Session 1 � APRN finalize and review care plan/resource manual with survivors � SMART goal setting � PCP identification � APRN complete brief (2 page) clinician survivorship care plan and send to PCP � Review shared care responsibilities with PCP � Clinic encounter notes exchange between oncology and primary care Sessions 2 and 3 � Review care plan/resource manual Late/long-term effects and comorbidity � Discuss physical, emotional, social, and spiritual well-being concerns management � Discuss signs and symptoms of recurrence � Discuss comorbidity management � Identify challenges; discuss strategies to overcome challenges through problem-solving � Review institutional/community resources � Initiate referrals as needed � Review and assess SMART goals � PCP engagement on shared care responsibilities Sessions 4 and 5 � Review care plan/resource manual Physical functioning and healthy living � Discuss maintaining physical functioning � Discuss healthy living recommendations � Identify challenges; discuss strategies to overcome challenges through problem-solving � Provide institutional/community resources � Initiate referrals as needed � Review and assess SMART goals � PCP engagement on shared care Monthly maintenance sessions � Review self-management skills, SMART goals, and care plan/resource manual � PCP engagement on shared care � APRN recommendation on possible full transition of care to PCP, or continue with shared care � Discussion with survivors on preference for full transition or continued shared care APRN � Communication and care coordination between oncologist and PCP (throughout the study) J Canc Educ (2021) 36:414–420 417 social, and spiritual well-being issues. Comorbidities are cardiovascular, pulmonary) [38]. Multimorbidity is associated reviewed, and self-management strategies are discussed; this with treatment-related adverse events, poorer outcomes, and includes a focus on the care responsibility of different challenges in care coordination due to complexity of care [15]. healthcare teams (oncologist versus PCP). Survivors identify For older cancer survivors, comprehensive geriatric assess- unique and relevant challenges related to late/long-term ef- ment can improve the quality of follow-up care. Geriatric as- fects and comorbidity management and develop an action plan sessment is used to understand the heterogeneity of the aging to overcome the challenges. Together, the APRN and survivor process through an evaluation of a survivor’s (1) functional identify potential institutional and community resources. status, (2) comorbidities, (3) cognition, (4) psychological sta- SMART goals are reviewed and revised. tus, (5) social functioning and support, (6) medication review, Sessions 4 and 5 focus on physical functioning and healthy and (7) nutritional status [39]. Each of these domains is an living. Specifically, survivors are coached on strategies to independent predictor of morbidity and/or mortality in the maintain physical functioning. Healthy living recommenda- geriatric population. The comprehensive assessment can im- tions (diet, physical activity, tobacco cessation) are introduced prove outcomes for older survivors by identifying areas of and discussed. This includes (1) identification of perceived vulnerability in need of targeted interventions [40]. barriers to behavior change, (2) prior plans or strategies to In most cancer care settings, survivor follow-up care is overcome these barriers, and (3) identification of new strate- largely provided by oncologists. Survivors prefer to be follow- gies that are adoptable to promote health behaviors. ed by oncologists due in part to the lack of follow-up care Functional capacity (falls prevention, gait, balance) is expertise in non-oncology providers (i.e., PCPs). Survivors reviewed. Institutional and community resources are identi- also have a higher level of emotional trust with oncologists fied, and referrals initiated (i.e., rehabilitation services) as that was developed during treatment [41]. From the oncolo- needed. SMART goals are reviewed and revised as needed. gist’s perspective, seeing patients that are doing well after Three monthly telehealth maintenance sessions are admin- treatment may reduce work-related stress and burnout and istered following the completion of session 5. In these ses- contribute to higher job satisfaction [36]. Full transition of sions, the APRN reviews progress on the survivors’ self- all survivors to PCP care is also impossible and likely inap- management skills building and provides additional coaching propriate, due to a lack of formal training on follow-up cancer as needed. SMART goals and personalized follow-up care care and lack of time [42]. The anticipated shortage of the plans are reviewed and revised as needed. Care coordination oncology workforce has resulted in greater delegation of com- and communication with PCPs continue regularly during the plex cancer care to oncology advanced practice nurses maintenance session months. (APRNs), who are also experiencing workforce shortages [43]. Robust evidence suggests that improved health out- comes are associated with oncology APRN-led care Discussion [44–46]. Hence, oncology APRNs are in an optimal position to support cancer survivors’ self-management skills building, A recent National Academy of Science Workshop found that coordinate care with a PCPs, and use telehealth effectively for current models of follow-up care fail in meeting the needs of post-treatment follow-up. survivors, despite decades of progress in research [34]. The shared care model can free up busy oncology clinics, Limited evidence exists on the efficacy of follow-up care ap- eliminate the need to transition all survivors to busy PCPs, proaches. Focused efforts are needed to improve care delivery provide efficient and timely care coordination with the oncol- and increase adherence to long-term treatment and follow-up ogists when needed, and promote personalized survivor- care guidelines. Hybrid approaches may facilitate communi- centered follow-up care [36]. Shared care is likely most ap- cation and care coordination among primary care, oncology, propriate for lung and colorectal cancer survivors with multi- and survivors [35]. ple complex needs and low to moderate levels of risk for The anticipated aging of the US population will increase recurrence, secondary cancers, symptom burden, functional the complexity of cancer care, because older adults are more declines, and comorbidities. Evidence from other countries likely to have higher non-cancer specific needs (functional suggests that in breast cancer survivors, the personalized ap- declines, comorbidities) in addition to cancer-specific needs proach improves receipt of timely follow-up screening, de- [36]. Nearly 64% of cancer survivors are 65 years and older, creased waiting time to receive oncology care, and freed up and this number is estimated to rise to 73% by 2040 [17]. The clinician time by shifting resources to survivors with more presence of comorbidities, decline in organ function or phys- complex needs [47]. Implementation of the shared care model iologic reserves, and increased need for assistance with daily and a personalized follow-up approach will likely be more function complicates the care of older survivors [37]. complex in the USA due to diverse care delivery systems. Multimorbidity is one of the greatest challenges in caring for The APRN-led care coordination and communication can po- tentially reduce care fragmentation. older survivors; > 50% have three or more comorbidities (e.g., 418 J Canc Educ (2021) 36:414–420 For cancer survivors, treatment completion does not indi- randomized controlled trial of an APRN-driven telehealth in- cate an end to their cancer experience [48]. Ongoing relation- tervention on healthcare team knowledge of follow-up care, ships with the healthcare system are needed to manage post- care coordination between oncologist/PCP, communication treatment care and require long-term planning rather than across medical disciplines, and survivor-specific outcomes acute, prescriptive relationships [29]. Being adequately pre- (confidence in follow-up care, QOL). pared for post-treatment self-management can empower can- Authors’ Contributions All authors contributed to the study conception cer survivors and improve their confidence in managing their and design. All authors commented on previous versions of the manu- overall healthcare [49, 50]. For cancer survivors, self- script. All authors read and approved the final manuscript. management skills building should include coaching patients on signs and symptoms of recurrence, cancer prevention, post- Funding Research reported in this paper is supported by the National treatment symptoms, and comorbidities [36]. The National Cancer Institute of the National Institutes of Health under award number R01CA249501-01 (PI: Sun). The statements presented in this article are Academy of Medicine (formerly the Institute of Medicine) solely the responsibility of the author(s) and do not necessarily represent defines self-management support as the “systematic provision the official views of the National Institutes of Health. of interventions to increase skills and self-efficacy in manag- ing health problems, including regular assessment of prob- Data Availability NA lems, goal-setting, and problem-solving support” [51]. Current evidence suggests that cancer survivors with low Compliance with Ethical Standards self-efficacy report worse physical and psychological well- being [50]. This suggests that interventions targeted at increas- Conflict of interest The authors declare that they have no conflict of interest. ing self-efficacy and self-management may be beneficial for this population. Two randomized trials of self-management Ethics Approval Study protocol is reviewed and approved by the interventions reported trends toward greater self-efficacy, im- Institutional Review Board. proved general health, and greater provider implementation of recommended care in breast cancer survivors [52, 53]. Consent to Participate All participants provide informed consent. Effective self-management interventions can transform a re- active healthcare system into one that improves survivor out- Consent for Publication All authors provided consent for publication. comes through proactive planning [54]. In addition to addressing survivor needs, self-management Code Availability NA skills building is a key component of personalized cancer Open Access This article is licensed under a Creative Commons follow-up care [49]. In the UK and Australia, where survivor- Attribution 4.0 International License, which permits use, sharing, adap- ship care is a national initiative, preliminary evidence points to tation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, pro- self-management skills training as the driving factor for per- vide a link to the Creative Commons licence, and indicate if changes were sonalized follow-up based on risk [55]. The evidence shows made. The images or other third party material in this article are included that up to 50% of colorectal cancer survivors who were treated in the article's Creative Commons licence, unless indicated otherwise in a with curative intent were able to self-manage after treatment credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by completion [56]. Supporting survivors’ self-management statutory regulation or exceeds the permitted use, you will need to obtain skills may free up oncology clinic space and time and reduce permission directly from the copyright holder. To view a copy of this burden on the healthcare system [36, 55]. There is a need to licence, visit http://creativecommons.org/licenses/by/4.0/. test full-scale post-treatment self-management interventions and evaluate similar outcomes in the US healthcare system. Conclusions References 1. 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Accessed 12 Sept 2020 for adult cancer survivors after treatment: a systematic review and meta-analysis. Oncol Nurs Forum 44(6):719–728 49. Howell D, Mayer DK, Fielding R, Eicher M, Verdonck-de Leeuw Publisher’sNote Springer Nature remains neutral with regard to jurisdic- IM, Johansen C, Soto-Perez-de-Celis E, Foster C, Chan R, Alfano tional claims in published maps and institutional affiliations.

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