Survivorship Care Plan: We’ve Got the Tool—It’s Time to Fix the Process

Survivorship Care Plan: We’ve Got the Tool—It’s Time to Fix the Process Since the release of the Institute of Medicine recommendation for the provision of a survivorship care plan (SCP), considerable emphasis has been placed on the document. While patients report satisfaction in receiving SCPs (1), preparing them is time consuming (2), they are not routinely provided by oncologists (3), and they have little to no effect on outcomes (4,5). Primary care providers (PCPs) find the information useful but want the SCP to be simple, accessible, and timely (6,7). In a national survey, the few PCPs who received SCPs were nine times more likely to discuss survivorship care with their patients (8). Yet despite the proliferation of SCP studies, there is a continuing debate about target populations, measures, and outcomes (9,10). Kadan-Lottick et al. conducted a randomized controlled trial aiming to evaluate the effect of a SCP along with a survivorship clinic (SC) or PCP visit (SCP-PCP) on completion of recommended surveillance testing and identification of late treatment effects. The study, published in this issue of the Journal, randomly assigned 96 survivors of childhood cancer (mean age at intervention [SD] = 15.9 [6.1] years, years since diagnosis [SD] = 6.1 [2.7]) to the SC group or the SCP-PCP group. A clinic coordinator contacted patients in the SC group and scheduled appointments with a specialized clinic provider who conducted a focused history and examination, ordered recommended testing, and offered health promotion education. SCPs were given following the visit. Survivors randomized to the SCP-PCP group were mailed the SCP, called to confirm receipt, and instructed to schedule a visit with their PCP to review the plan. Those without a PCP received help finding one. PCPs were mailed letters stating that their patient was enrolled in a trial and would be scheduling a survivorship care visit. The study found that those randomized to the SCP-PCP group completed fewer recommended surveillance tests and had fewer late effects identified. The investigators should be applauded for this intervention study testing how the SCP coupled with a SC or PCP visit affects survivorship care, thus focusing on the process rather than the SCP alone. The study was conducted at an institution where the standard of care was for all survivors of childhood cancer to have a SC visit, though those in the trial had not previously had SC visits. While this may be considered a study limitation (as these patients may be less engaged, have barriers to care, or not perceive the importance of such care), this selection strategy may also be a strength in that the study targeted a population that may be in greater need of (and derive greater benefit from) a survivorship care intervention. It is notable that both groups had similar adherence to appointments, and though small in number, had similar characteristics. However, limitations must be discussed in order to assess the implications of this study on survivorship care. First, it is not clear that the survivors or the PCPs were adequately prepared to discuss the SCP during the visit. While most patients in the SCP-PCP group made an appointment with their PCP, it is unknown whether they (or their parents) communicated with the office staff or the PCP that the goal of the visit was to address survivorship care. Broadly, primary care visits are often characterized as “sick”—visits addressing urgent concerns, “follow up”—for chronic issues such as diabetes or hypertension, or “preventive care”—such as physicals. While practices may also offer hospital discharge–focused visits, there is not currently a reimbursable visit type for cancer care transitions. Further, it may have taken months for the PCP visit to occur (study required a visit within 12 months), and patients may have forgotten to bring the SCP or to discuss it altogether. Though the PCPs were mailed patient-specific information prior to the appointment (again with possible delay), it is unclear what priority was given to paper mailings. As the authors rightly point out, “simply sending the SCP does not suffice.” Second, the study population was predominately children and adolescents; thus the PCPs targeted in this setting were mostly pediatricians, whose preferences for assuming survivorship care may differ from those in adult medicine (where, eg, chronic medical conditions are quite common). Pediatricians’ comfort level with laboratory and imaging testing may also vary. Interestingly, the study found that there were no statistically significant differences in “routine” laboratory tests ordered (ie, urinalysis, lipid panels, or blood counts), though differences in completion of testing not commonly seen in pediatric clinics (ie, bone density scans and echocardiograms) were found. It is possible that the PCPs felt that these tests warranted consultations to specialists who could interpret and act on the results. Considering that the survivors were still in the early phase of post-treatment care, they may have also expected that oncologists would order “cancer-related” tests. Further, it is noteworthy that while the identification of late effects differed in the two groups, these were primarily grade 1 toxicities (not requiring intervention) and may not have been clinically significant (11). Lastly, this study raises an important implication for survivorship care in the adolescent and young adult population that was not addressed. In addition to providing recommended testing and identifying late effects, it is critical that survivorship care in this population also include guidance about transition of care from pediatrics to adult medicine. Adolescent and young adult survivors should be empowered to assume “ownership” for their health care (a role likely held by a parent) and have support for personal transitions (ie, family planning, school, employment) and practical counseling about finances and health insurance (12). SCPs may help address these issues (13), though a more focused discussion, along with resource specialists, may be optimally provided at a specialized clinic visit. In summary, the negative results of this randomized controlled trial should not end the discussion about the potential benefits of SCPs and the role of PCPs in cancer survivorship care. Similar to hospital discharge summaries, SCPs are tools that aim to enhance communication and coordination of care as patients transition between settings (14). Hospital discharge summaries are required by institutions and are expected by PCPs, but the document alone is insufficient. For effective hospital discharge transition to occur, planning must begin at admission, be revisited during hospitalization, reviewed in detail at discharge, and completed with a scheduled (and incentivized) PCP visit (15). As we strive to improve the transition of cancer survivors, we should focus on the gaps in the survivorship care planning process, not simply the plan. First, we must start survivorship care planning early and revisit often, encouraging ongoing communication with the PCP. Second, SCPs must be timely and relevant to the recipient (eg, a standardized document may be suitable for the survivors, but a concise and educational consultation note that is readily accessible in the medical record may be more suitable for the PCP) (16,17). Third, we need to promote and reimburse a transition visit during which PCPs can review the plan and use the information to improve medical record documentation about the cancer history and recommended follow-up (18). With the implementation of these steps, along with education of patients, PCPs, and oncologists about survivorship, the SCP should rightfully serve as a tool to enhance quality of care and not as a standalone measure of success. Notes Affiliation of author: Department of Medicine, Brigham and Women’s Hospital, Boston MA. The author has no conflicts of interest to disclose. References 1 Keesing S , McNamara B , Rosenwax L. Cancer survivors’ experiences of using survivorship care plans: A systematic review of qualitative studies . J Cancer Surviv. 2015 ; 9 ( 2 ): 260 – 268 . Google Scholar CrossRef Search ADS PubMed 2 Salz T , Oeffinger KC , McCabe MS , Layne TM , Bach PB. Survivorship care plans in research and practice . CA Cancer J Clin. 2012 ; 62 ( 2 ): 101 – 117 . Google Scholar CrossRef Search ADS PubMed 3 Forsythe LP , Parry C , Aflano et al. Use of survivorship care plans in the United States: Associations with survivorship care . J Natl Cancer Inst. 2013 ; 105 ( 20 ): 1579 – 1587 . Google Scholar CrossRef Search ADS PubMed 4 Brennan ME , Gormally JF , Butow P , Boyle FM , Spillane AJ. Survivorship care plans in cancer: A systematic review of care plan outcomes . Br J Cancer. 2014 ; 111 ( 10 ): 1899 – 1908 . Google Scholar CrossRef Search ADS PubMed 5 Mayer DK , Birken SA , Check DK , Chen RC. Summing it up: An integrative review of studies of cancer survivorship care plans (2006-2013) . Cancer. 2015 ; 121 ( 7 ): 978 – 996 . Google Scholar CrossRef Search ADS PubMed 6 Klemanski DL , Browning KK , Kue J. Survivorship care plan preferences of cancer survivors and health care providers: A systematic review and quality appraisal of the evidence . J Cancer Surviv. 2016 ; 10 ( 1 ): 71 – 86 . Google Scholar CrossRef Search ADS PubMed 7 LaGrandeur W , Armin J , Howe CL , Ali-Akbarian L. Survivorship care plan outcomes for primary care physicians, cancer survivors, and systems: A scoping review . J Cancer Surviv . In press. 8 Blanch-Hartigan D , Forsythe LP , Alfano CM et al. , Provision and discussion of survivorship care plans among cancer survivors: Results of a nationally representative survey of oncologists and primary care physicians . J Clin Oncol. 2014 ; 32 ( 15 ): 1578 – 1585 . Google Scholar CrossRef Search ADS PubMed 9 Parry C , Kent EE , Forsythe LP , Alfano CM , Rowland JH. Can’t see the forest for the care plan: A call to revisit the context of care planning . J Clin Oncol. 2013 ; 31 ( 21 ): 2651 – 2653 . Google Scholar CrossRef Search ADS PubMed 10 Smith TJ , Snyder C. Is it time for (survivorship care) plan B? J Clin Oncol. 2011 ; 29 ( 36 ): 4740 – 4742 . Google Scholar CrossRef Search ADS PubMed 11 Landier W , Armenian SH , Lee J et al. , Yield of screening for long-term complications using the children’s oncology group long-term follow-up guidelines . J Clin Oncol. 2012 ; 30 ( 35 ): 4401 – 4408 . Google Scholar CrossRef Search ADS PubMed 12 Patterson P , McDonald FEJ , Zebrack B , Medlow S. Emerging issues among adolescent and young adult cancer survivors . Semin Oncol Nurs. 2015 ; 31 ( 1 ): 53 – 59 . Google Scholar CrossRef Search ADS PubMed 13 Shay LA , Parsons HM , Vernon SW. Survivorship care planning and unmet information and service needs among adolescent and young adult cancer survivors . J Adolesc Young Adult Oncol. 2017 ; 6 ( 2 ): 327 – 332 . Google Scholar CrossRef Search ADS PubMed 14 Nekhlyudov L , Schnipper JL. Cancer survivorship care plans: What can be learned from hospital discharge summaries? J Oncol Pract. 2012 ; 8 ( 1 ): 24 – 29 . Google Scholar CrossRef Search ADS PubMed 15 Agency for Healthcare Research and Quality . Strategy 4: Care transitions from hospital to home: IDEAL discharge planning. https://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy4/index.html. Accessed March 20, 2018. 16 Goldman L , Lee T , Rudd P. Ten commandments for effective consultations . Arch Intern Med. 1983 ; 143 ( 9 ): 1753 – 1755 . Google Scholar CrossRef Search ADS PubMed 17 Boulware DR , Dekarske AS , Filice GA. Physician preferences for elements of effective consultations . J Gen Intern Med. 2010 ; 25 ( 1 ): 25 – 30 . Google Scholar CrossRef Search ADS PubMed 18 Burton J. History of lymphoma . JAMA Oncol. 2018 ; 4 ( 3 ): 292 . Google Scholar CrossRef Search ADS PubMed © The Author(s) 2018. 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/about_us/legal/notices) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JNCI: Journal of the National Cancer Institute Oxford University Press

Survivorship Care Plan: We’ve Got the Tool—It’s Time to Fix the Process

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Abstract

Since the release of the Institute of Medicine recommendation for the provision of a survivorship care plan (SCP), considerable emphasis has been placed on the document. While patients report satisfaction in receiving SCPs (1), preparing them is time consuming (2), they are not routinely provided by oncologists (3), and they have little to no effect on outcomes (4,5). Primary care providers (PCPs) find the information useful but want the SCP to be simple, accessible, and timely (6,7). In a national survey, the few PCPs who received SCPs were nine times more likely to discuss survivorship care with their patients (8). Yet despite the proliferation of SCP studies, there is a continuing debate about target populations, measures, and outcomes (9,10). Kadan-Lottick et al. conducted a randomized controlled trial aiming to evaluate the effect of a SCP along with a survivorship clinic (SC) or PCP visit (SCP-PCP) on completion of recommended surveillance testing and identification of late treatment effects. The study, published in this issue of the Journal, randomly assigned 96 survivors of childhood cancer (mean age at intervention [SD] = 15.9 [6.1] years, years since diagnosis [SD] = 6.1 [2.7]) to the SC group or the SCP-PCP group. A clinic coordinator contacted patients in the SC group and scheduled appointments with a specialized clinic provider who conducted a focused history and examination, ordered recommended testing, and offered health promotion education. SCPs were given following the visit. Survivors randomized to the SCP-PCP group were mailed the SCP, called to confirm receipt, and instructed to schedule a visit with their PCP to review the plan. Those without a PCP received help finding one. PCPs were mailed letters stating that their patient was enrolled in a trial and would be scheduling a survivorship care visit. The study found that those randomized to the SCP-PCP group completed fewer recommended surveillance tests and had fewer late effects identified. The investigators should be applauded for this intervention study testing how the SCP coupled with a SC or PCP visit affects survivorship care, thus focusing on the process rather than the SCP alone. The study was conducted at an institution where the standard of care was for all survivors of childhood cancer to have a SC visit, though those in the trial had not previously had SC visits. While this may be considered a study limitation (as these patients may be less engaged, have barriers to care, or not perceive the importance of such care), this selection strategy may also be a strength in that the study targeted a population that may be in greater need of (and derive greater benefit from) a survivorship care intervention. It is notable that both groups had similar adherence to appointments, and though small in number, had similar characteristics. However, limitations must be discussed in order to assess the implications of this study on survivorship care. First, it is not clear that the survivors or the PCPs were adequately prepared to discuss the SCP during the visit. While most patients in the SCP-PCP group made an appointment with their PCP, it is unknown whether they (or their parents) communicated with the office staff or the PCP that the goal of the visit was to address survivorship care. Broadly, primary care visits are often characterized as “sick”—visits addressing urgent concerns, “follow up”—for chronic issues such as diabetes or hypertension, or “preventive care”—such as physicals. While practices may also offer hospital discharge–focused visits, there is not currently a reimbursable visit type for cancer care transitions. Further, it may have taken months for the PCP visit to occur (study required a visit within 12 months), and patients may have forgotten to bring the SCP or to discuss it altogether. Though the PCPs were mailed patient-specific information prior to the appointment (again with possible delay), it is unclear what priority was given to paper mailings. As the authors rightly point out, “simply sending the SCP does not suffice.” Second, the study population was predominately children and adolescents; thus the PCPs targeted in this setting were mostly pediatricians, whose preferences for assuming survivorship care may differ from those in adult medicine (where, eg, chronic medical conditions are quite common). Pediatricians’ comfort level with laboratory and imaging testing may also vary. Interestingly, the study found that there were no statistically significant differences in “routine” laboratory tests ordered (ie, urinalysis, lipid panels, or blood counts), though differences in completion of testing not commonly seen in pediatric clinics (ie, bone density scans and echocardiograms) were found. It is possible that the PCPs felt that these tests warranted consultations to specialists who could interpret and act on the results. Considering that the survivors were still in the early phase of post-treatment care, they may have also expected that oncologists would order “cancer-related” tests. Further, it is noteworthy that while the identification of late effects differed in the two groups, these were primarily grade 1 toxicities (not requiring intervention) and may not have been clinically significant (11). Lastly, this study raises an important implication for survivorship care in the adolescent and young adult population that was not addressed. In addition to providing recommended testing and identifying late effects, it is critical that survivorship care in this population also include guidance about transition of care from pediatrics to adult medicine. Adolescent and young adult survivors should be empowered to assume “ownership” for their health care (a role likely held by a parent) and have support for personal transitions (ie, family planning, school, employment) and practical counseling about finances and health insurance (12). SCPs may help address these issues (13), though a more focused discussion, along with resource specialists, may be optimally provided at a specialized clinic visit. In summary, the negative results of this randomized controlled trial should not end the discussion about the potential benefits of SCPs and the role of PCPs in cancer survivorship care. Similar to hospital discharge summaries, SCPs are tools that aim to enhance communication and coordination of care as patients transition between settings (14). Hospital discharge summaries are required by institutions and are expected by PCPs, but the document alone is insufficient. For effective hospital discharge transition to occur, planning must begin at admission, be revisited during hospitalization, reviewed in detail at discharge, and completed with a scheduled (and incentivized) PCP visit (15). As we strive to improve the transition of cancer survivors, we should focus on the gaps in the survivorship care planning process, not simply the plan. First, we must start survivorship care planning early and revisit often, encouraging ongoing communication with the PCP. Second, SCPs must be timely and relevant to the recipient (eg, a standardized document may be suitable for the survivors, but a concise and educational consultation note that is readily accessible in the medical record may be more suitable for the PCP) (16,17). Third, we need to promote and reimburse a transition visit during which PCPs can review the plan and use the information to improve medical record documentation about the cancer history and recommended follow-up (18). With the implementation of these steps, along with education of patients, PCPs, and oncologists about survivorship, the SCP should rightfully serve as a tool to enhance quality of care and not as a standalone measure of success. Notes Affiliation of author: Department of Medicine, Brigham and Women’s Hospital, Boston MA. The author has no conflicts of interest to disclose. References 1 Keesing S , McNamara B , Rosenwax L. Cancer survivors’ experiences of using survivorship care plans: A systematic review of qualitative studies . J Cancer Surviv. 2015 ; 9 ( 2 ): 260 – 268 . Google Scholar CrossRef Search ADS PubMed 2 Salz T , Oeffinger KC , McCabe MS , Layne TM , Bach PB. Survivorship care plans in research and practice . CA Cancer J Clin. 2012 ; 62 ( 2 ): 101 – 117 . Google Scholar CrossRef Search ADS PubMed 3 Forsythe LP , Parry C , Aflano et al. Use of survivorship care plans in the United States: Associations with survivorship care . J Natl Cancer Inst. 2013 ; 105 ( 20 ): 1579 – 1587 . Google Scholar CrossRef Search ADS PubMed 4 Brennan ME , Gormally JF , Butow P , Boyle FM , Spillane AJ. Survivorship care plans in cancer: A systematic review of care plan outcomes . Br J Cancer. 2014 ; 111 ( 10 ): 1899 – 1908 . Google Scholar CrossRef Search ADS PubMed 5 Mayer DK , Birken SA , Check DK , Chen RC. Summing it up: An integrative review of studies of cancer survivorship care plans (2006-2013) . Cancer. 2015 ; 121 ( 7 ): 978 – 996 . Google Scholar CrossRef Search ADS PubMed 6 Klemanski DL , Browning KK , Kue J. Survivorship care plan preferences of cancer survivors and health care providers: A systematic review and quality appraisal of the evidence . J Cancer Surviv. 2016 ; 10 ( 1 ): 71 – 86 . Google Scholar CrossRef Search ADS PubMed 7 LaGrandeur W , Armin J , Howe CL , Ali-Akbarian L. Survivorship care plan outcomes for primary care physicians, cancer survivors, and systems: A scoping review . J Cancer Surviv . In press. 8 Blanch-Hartigan D , Forsythe LP , Alfano CM et al. , Provision and discussion of survivorship care plans among cancer survivors: Results of a nationally representative survey of oncologists and primary care physicians . J Clin Oncol. 2014 ; 32 ( 15 ): 1578 – 1585 . Google Scholar CrossRef Search ADS PubMed 9 Parry C , Kent EE , Forsythe LP , Alfano CM , Rowland JH. Can’t see the forest for the care plan: A call to revisit the context of care planning . J Clin Oncol. 2013 ; 31 ( 21 ): 2651 – 2653 . Google Scholar CrossRef Search ADS PubMed 10 Smith TJ , Snyder C. Is it time for (survivorship care) plan B? J Clin Oncol. 2011 ; 29 ( 36 ): 4740 – 4742 . Google Scholar CrossRef Search ADS PubMed 11 Landier W , Armenian SH , Lee J et al. , Yield of screening for long-term complications using the children’s oncology group long-term follow-up guidelines . J Clin Oncol. 2012 ; 30 ( 35 ): 4401 – 4408 . Google Scholar CrossRef Search ADS PubMed 12 Patterson P , McDonald FEJ , Zebrack B , Medlow S. Emerging issues among adolescent and young adult cancer survivors . Semin Oncol Nurs. 2015 ; 31 ( 1 ): 53 – 59 . Google Scholar CrossRef Search ADS PubMed 13 Shay LA , Parsons HM , Vernon SW. Survivorship care planning and unmet information and service needs among adolescent and young adult cancer survivors . J Adolesc Young Adult Oncol. 2017 ; 6 ( 2 ): 327 – 332 . Google Scholar CrossRef Search ADS PubMed 14 Nekhlyudov L , Schnipper JL. Cancer survivorship care plans: What can be learned from hospital discharge summaries? J Oncol Pract. 2012 ; 8 ( 1 ): 24 – 29 . Google Scholar CrossRef Search ADS PubMed 15 Agency for Healthcare Research and Quality . Strategy 4: Care transitions from hospital to home: IDEAL discharge planning. https://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy4/index.html. Accessed March 20, 2018. 16 Goldman L , Lee T , Rudd P. Ten commandments for effective consultations . Arch Intern Med. 1983 ; 143 ( 9 ): 1753 – 1755 . Google Scholar CrossRef Search ADS PubMed 17 Boulware DR , Dekarske AS , Filice GA. Physician preferences for elements of effective consultations . J Gen Intern Med. 2010 ; 25 ( 1 ): 25 – 30 . Google Scholar CrossRef Search ADS PubMed 18 Burton J. History of lymphoma . JAMA Oncol. 2018 ; 4 ( 3 ): 292 . Google Scholar CrossRef Search ADS PubMed © The Author(s) 2018. 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/about_us/legal/notices)

Journal

JNCI: Journal of the National Cancer InstituteOxford University Press

Published: May 15, 2018

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