Accepted Manuscript The Challenges of the Integration of Cancer Survivorship Care Plans with Electronic Medical Records James R. Zabora , ScD, MSW, Sage Bolte , PhD, MSW, LCSW, Drucilla Brethwaite , MSW, LCSW, Saundra Weller , MSW, LCSW, Carrie Friedman , RN, BS, OCN PII:
S0749-2081(14)00096-5
DOI:
10.1016/j.soncn.2014.12.001
Reference:
YSONU 50680
To appear in:
Seminars in Oncology Nursing
Please cite this article as: Zabora JR, Bolte S, Brethwaite D, Weller S, Friedman C, The Challenges of the Integration of Cancer Survivorship Care Plans with Electronic Medical Records, Seminars in Oncology Nursing (2015), doi: 10.1016/j.soncn.2014.12.001. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
ACCEPTED MANUSCRIPT
The Challenges of the Integration of Cancer Survivorship Care Plans with Electronic Medical Records
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James R. Zabora, ScD, MSW, Sage Bolte, PhD, MSW, LCSW, Drucilla Brethwaite, MSW, LCSW Saundra Weller, MSW, LCSW, Carrie Friedman, RN, BS, OCN Life With Cancer ©
8411 Pennell Street
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Fairfax, VA 22031
SC
Inova Health System
703-698-2525
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[email protected]
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Data Sources: Published peer previewed literature.
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Objectives: To provide an overview of issues and challenges associated with integrating development of survivorship care plan processes with electronic medical records (EMRs).
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Conclusion: Evidence seems to indicate that survivorship care plans have value to survivors, oncology specialist providers and primary care providers. Yet, the existence of cost and time restraints are major barriers to creation and use of survivorship care plans, and the expectations that EMR can simplify and expedite survivorship care plan development have yet to be realized.
Implications for Nursing Practice: Nurses participating in development of survivorship programs can contribute to successful implementation of EMR-facilitated survivorship care plans by involvement in strategic planning processes, and establishment of reasonable timelines to address the known and unknown barriers, and assuring the resulting EMR product includes essential data and information.
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Key Words: Electronic Medical Record, Electronic Health Record, Survivorship Care Planning, Survivorship Care Plan
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The Challenges of the Integration of Cancer Survivorship Care Plans with Electronic Medical Records
In 2012, the Commission on Cancer (CoC) of the American College of Surgeons (ACoS)
established new standards of care that require patient navigation, distress screening and cancer survivorship care plans in order to create a “patient-centered focus”.1 However, the ACoS does
SC
not provide implementation guidance. Operationalization of these standards is a significant challenge to oncology providers. This article examines development of cancer survivorship care
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planning (CSCP) process that addresses the physiological, psychological and social needs of patients, and explores the challenges of employing electronic medical records to meet ACoS CoC accreditation standards and provide high-quality patient-centered care.
Background
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The early study of psychological responses to cancer survivorship and appropriate physiological and psychosocial interventions has expanded to include time points well beyond the initial diagnosis.2-5 As patients move through the early reactions, they gain experience as
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cancer survivors. Survivorship begins on the day of diagnosis as cancer patients begin to redefine all aspects of their lives.6 While many patients and family members strive to regain a
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sense of normalcy, many experience intense feelings of distress exacerbated by the physical trauma associated with cancer therapies. For the most part, patients are forced to acknowledge that their lives will never again be the same. Patients and family members experience disruptions of their day-to-day routines, and fear of recurrence or the actual event further complicates the psychosocial course for each patient.7 During the course of therapy, patients gain critical information and knowledge concerning their disease process and treatments. Knowledge and support from the cancer care team enable patients to anticipate and understand
3
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their course of treatment and the complex problems associated with movement across the disease continuum. Beginning in 1997, the National Comprehensive Cancer Network (NCCN) established a
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panel (consisting of oncology professionals - medical, nursing, social work, counseling, psychiatry, psychology, and clergy) to focus on barriers to psychosocial care, how to address these barriers, and to develop specific guidelines for management of distress that were
SC
published in 1999.8 These guidelines were revised over the next decade. In 2007, the Institute of Medicine (IOM) published its report, Cancer Care for the Whole Patient, which supports the
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NCCN guidelines, but recommends a model of care that includes screening for distress and psychosocial needs, generating treatment plans, referring to appropriate resources, and evaluation of this process for effectiveness.9 Psychological distress was defined as “an unpleasant emotional experience of a psychological, social, and/or spiritual nature that interferes with the ability to cope effectively with cancer and its treatments. Distress extends
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along a continuum, ranging from common normal feelings of vulnerability and sadness to problems that can be disabling, such as depression, anxiety, and social isolation.”10 Casual interactions with patients suggest that all patients experience some level of distress in order to
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normalize early reactions to cancer diagnoses. However, patients who cannot adapt to their clinical circumstances challenge the healthcare team to respond to a multitude of psychological
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and social problems. For nearly one third of newly diagnosed cancer patients, the vulnerability associated with these problems generates significant psychological distress that may not manifest itself to the healthcare team until the patient reaches an observable crisis event.11 In 2012, the American College of Surgeons (ACoS) Commission on Cancer (CoC)
established new standards of care that require patient navigation (Standard 3.1), distress screening (Standard 3.2), and cancer survivorship care plans (Standard 3.3) in order to create a “patient-centered focus”.1 However, the ACoS does not provide guidance as to how to
4
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implement these three standards resulting in significant developmental and implementation challenges to oncology providers.
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Following distress screening, a CSCP could be developed and implemented during the first two weeks of care, and revised accordingly at three-months, six-months, and one-year post-
diagnosis. This sequence could optimize the desired active participation of patients and families in care as opposed to the CSCP being implemented at the completion of cancer therapies,
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which for most cancer patients occurs approximately six months after initial diagnosis.12
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Throughout this process, the potential role for Electronic Medical Records (EMRs) are essential. Given the volumes of patients in every level of cancer care from National Cancer Institute (NCI)designated comprehensive cancer centers to oncology community practices, adherence to these three standards will present major challenges.
Challenges to Develop CSCPs within an EMR System.
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Given the significance of the clinical content of each of the new standards, the EMR must be considered as a critical element in the collection of relevant data points as well as the consolidation of data into useable formats and templates. In general, while EMRs are perceived
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to possess a significant benefit in this area, actual results over the past three years are quite mixed. The following findings from a 2013 Rand Research Report13 are notable:
Physicians approved of EMRs in concept and appreciated having better ability to
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•
remotely access patient information;
•
For many physicians, the current state of EMR technology significantly worsened professional satisfaction in multiple ways;
•
Aspects of current EMRs that were particularly sources of dissatisfaction included poor usability, time-consuming data entry, interference with face-to-face patient care,
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inefficient and less fulfilling work content, inability to exchange health information, and decreased quality of clinical documentation.
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In a 2014 a Medscape Survey, 19,000 physicians responded and while 83% said that their hospitals had implemented an EMR system (with the highest being Epic® at 23%), only 35% believed that patient services were actually improved and 34% stated that services were worse. Oncologists’ responses (n= 404) were consistent with these overall findings14. However, 67% of
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the oncologists stated that the EMR interfered with “face-to-face” time with patients and 26% said this technology diminished their ability to manage individual patient treatment plans.14 In
needs has not been fully realized.
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many respects, the expectation that EMRs would be a solution for data and documentations
Finally, in a survey of community oncology providers (n= 245) at 14 NCI community cancer programs, only half (52%) reported ever providing any component of a CSCP to patients.15 The
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most widely reported barrier to completion of a CSCP was a lack of personnel resources and time to create CSCPs. The most widely endorsed strategy to develop CSCPs was use of a template with pre-specified fields. Of those who used templates, 94% found them to be helpful.
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For each topic of a CSCP, although 87% to 89% of oncology providers believed it was very important for primary care providers to receive the information, only 58% to 65% of respondents
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believed it was very important for patients to receive the information.15 Furthermore, 33% to 38% of respondents reported mixed feelings regarding whether it was the responsibility of oncology providers to provide CSCPs. These apparently commonly held opinions present another level of challenges to the provision of CSCPs to survivors and their families in any effective and meaningful timeframe.
Potential for Innovation in the Development of CSCPs Via EMRs
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The work of Rowland and Ganz 16 built on the Instittute of Medicine 12,17,survivorship by noting a paradigm shift from providing a CSCP upon the completion of primary treatment to initiating the CSCP process directly at the time of diagnosis and staging, as depicted in Figures 1 and 2.
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This new paradigm provides for multiple benefits. Foremost, it is inclusive of the prevailing definition of survivorship characterized by the National Coalition for Cancer Survivorship "from the time of diagnosis and for the balance of life."6 Such a model recognizes the need to provide CSCPs for the growing population of patients who experience cancer as a chronic illness, i.e.,
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who have an increased number of cancer-affected life years.18 Of equal significance, health
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promotion behaviors taught early are likely to increase functional health status.19,20 Additionally, clinicians can offer interventions and recommend referrals for patients identified with psychosocial distress, and thereby positively affect coping, adaptation and quality of life.10,20 Early introduction of a CSCP allows the document to be a fluid tool by recording information at intervals by various care team members. Documenting treatment and care throughout the
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disease trajectory can reduce the effort required to recall, gather and transcribe treatment history in a single sitting at the end of treatment, which is often identified as a barrier to
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conducting CSCPs.12,15
There are numerous templates that are available for conducting a CSCP but minimally address
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the psychosocial component of cancer survivorship. The Inova Health System developed a CSCP Life with Cancer’s© (http://www.lifewithcancer.org/), which covers the psychosocial component in depth. The plan provides for distress screening, a problem checklist assessing key psychosocial concerns, and options for referrals and evidence-based interventions. Providing psychological interventions to address patient distress can decrease symptomatology, affect morbidity and mortality and manage healthcare costs, which is well documented in the literature.18,20,21,22 Moreover, Life with Cancer’s CSCP assesses potential problems affecting the caregiver, a role that research supports is associated with positive health outcomes.23,24 Life 7
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with Cancer’s CSCP treatment summary and review of positive health behaviors is a more comprehensive tool than most other templates that address only core elements of the IOM report such as care received, characteristics of disease and treatment side effects.17 Of
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particular note, Life with Cancer’s CSCP includes late effects, extensive health promotion behaviors, a wellness plan, and an active medication record which includes over-the-counter medications, vitamins and herbal supplements.25,26 Although a paper version of the CSCP could
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be made available to patients, the tool could also be offered in a Microsoft Word format on a USB flash drive, allowing for easy portability, updating by the multiple providers often involved in
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a patient's care, and coordination of care between providers. Attention has been paid to CSCP formatting to ensure ease of reading, and space has been created for a written narrative to increase clarity. Finally, this type of format could be integrated with EMRs such as Epic within its My Chart component to enhance access to survivorship data and information for patients, family
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members and oncology providers.
This more comprehensive approach offers patients who are experiencing high distress the opportunity to participate with a family caregiver in evidence-based interventions such as
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Problem-Solving Education (PSE).24,26 A cancer experience can be complicated, and the disease, treatment side effects and stress can impact an individual’s capacity for decision
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making. PSE has been identified as the primary mechanism in managing complex problems and symptoms associated with a cancer diagnosis and related therapies.24,26 Such an intervention, designed to promote patients’ and caregivers’ acquisition of skills to engage in a systematic approach to processing information and decision-making, can increase sense of control, decrease stress, and enhance quality of life (QOL).24,25,26 The PSE could be taught by a nurse, social worker, or nurse-social worker pairs based on Life with Cancer’s model of maximizing outcomes of psychoeducational programs by simultaneously providing expertise on physiological and psychosocial issues. Of note, Grunfeld, et al27 tracked 400 survivors of breast 8
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cancer in Canada and found no differences in distress or secondary outcomes when comparing patients who had received CSCP-like instruments and those who had not.27 The addition of distress screening, an expanded CSCP, and an evidence-based intervention such as PSE may
effect patient outcomes.
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EMRs as the Potential Solution for the Development of CSCPs
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well provide the key to enabling patients to process and implement goals of the CSCP and truly
The number of cancer survivors continues to rise and the number is rapidly approaching 14
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million.28 Given the increasing number of EMR providers, the opportunity for IT solutions seems to optimistic. However, while Epic is the leading EMR provider, evidence indicates that Epic possesses only 23% of the market share with at least 17 or more EMR providers supplying the remaining 77% of these services.29 This fact produces a major challenge in devising a universal CSCP template given the numerous and competing EMR providers in place. The development
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of a CSCP for millions of patients may be impossible unless this dilemma is addressed
If the EMR is to be a critical component in the development, dissemination, and use of CSCPs,
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significant planning time and strategy are essential. Computer programming related to CSCP requires advanced planning. Planning could require 12-18 months or longer. In the case of the
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Inova Health System and Life with Cancer©, the planning strategy for development of the CSCP was estimated to require 12-18 months. Currently, Life with Cancer, in collaboration with Epic computer programmers, are developing the following potential sequence in how CSCP might be established over time:
Treatment Summary (2014) •
Compendium of all oncology treatment the patient has received to date including diagnostic test results, care team information, and documentation of surgery, chemotherapy, radiotherapy, etc 9
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Population Management (Jan.-Apr., 2015) •
Ability to track and act upon cancer survivors en masse through diagnostic test follow-
Survivorship Care Plan (May-Aug., 2015) •
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ups and long-term outcome reports.
Treatment summary plus follow-up care and population management including referrals,
Patient Engagement (Sept.-Dec., 2015)
Ability for survivors to interact and append data to their own chart via My Chart
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•
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long-term side effect management, and follow-up treatment.
integration and access patient-reported treatment outcomes. A critical point in this timeline is that a year of programming activity is required to develop a CSCP that addresses basic and comprehensive needs of survivors and family members. In a small pilot study of 38 survivors, Tevaarwerk et al29 demonstrated that rapid
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development and creation of survivorship care plans via the EMR and made available to survivors, oncologists, and primary care providers is possible. However, large scale
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demonstration of this capability has not been achieved.29
Where Do We Go From Here?
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Meeting the new American College of Surgeons (2012) Standards presents significant challenges to all oncology providers.1 The final standard focusing on the CSCP is the major emphasis of this article. Accumulation of a significant number of data points from any EMR is a daunting task. Consequently, if this task is to be accomplished for millions of cancer survivors, the process needs simplification in order to compile the essential elements of a comprehensive CSCP. However, it must be underscored that survivorship is more than physiological problems, and therefore a true comprehensive plan must include psychological and social consequences of cancer diagnoses. In particular, this is true given Standard 3.2 that focuses on distress 10
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screening and potential problems that exist for patients and families who exhibit high levels of distress.
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The ability to create CSCPs on a large scale requires planning by health systems, hospitals, and cancer centers and programs so accreditations are maintained. Cancer programs may opt not to comply with any or all of these standards because of costs or lack of resources. While this
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could be understood in terms of cost or resources, the result would be tragic for cancer survivors and family members. The fact remains that cancer survivors deserve a clear
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understanding of what has happened to them, where they are going, what may happen to them, and where they may be 10-15 years from now. All of our predictions may lack absolute accuracy, but survivors need a guide to how their lives will unfold after their diagnosis and treatments are behind them.
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Comprehensive care plans that clearly identify physiological, psychological, and social consequences of a cancer diagnosis are critical in the pathway to recovery from this serious and potentially debilitating disease. Survivors and family members need to recover and heal from
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the physical and psychological assaults associated with a cancer diagnosis. While most survivors possess the ability to manage difficulties associated with a cancer diagnosis, research
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demonstrate that 30% do not.30 This latter group of survivors will truly suffer unless their needs and appropriate interventions are identified. While a comprehensive approach to development of CSCPs would benefit all survivors, this final subset of survivors may receive a higher level of benefit that could enhance overall health care utilization. Evidence indicates that patients with “higher levels of distress” describe their symptoms and use the health care system in a very different manner.30 As a result, these patients generate higher levels of health care utilization and costs than the remaining set of survivors. Consequently, comprehensive and effective
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CSCPs possess the capability to significantly reduce health costs associated with cancer
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therapies across the United States.
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REFERENCES 1. American College of Surgeons. Cancer Program Standards 2012: Ensuring Patient-
Centered Care. Chicago: American College of Surgeons.
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2. Holland, J C.. Progress and challenges in psychosocial and behavioral research in cancer in the twentieth century. [Review]. Cancer.1991 67(3 Suppl), 767-773.
3 . Zabora, J R, Loscalzo M L, Smith E D. . Psychosocial rehabilitation. In M. D. Abeloff, J. O.
York, NY: Churchill Livingstone.2000
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Armitage, A. S. Lichter, et al. (Eds), Clinical oncology, (2nd ed., pp. 2845–2865). New
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4. Weisman A D. . The existential plight in cancer: Significance of the first 100 days. International Journal of Psychiatry in Medicine, 1976;7(1), 1–15. 5. Weisman, A D, Worden J W & Sobel HJ. . Psychosocial screening and intervention with cancer patients: A research report. Boston, MA: Harvard Medical School.1980 6. National Coalition for Cancer Survivorship. http://www.canceradvocacy.org/about-us/our-
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mission. Accessed November 25, 2014.
7. Thewes B., Butow P., Zachariae R., Christensen S., Simard S., Gotay, C. Fear of cancer recurrence: a systematic literature review of self-report measures. (2012),
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Psychooncology. 21(6):571-87.
8. National Comprehensive Cancer Network (NCCN). (2010). NCCN clinical practice guidelines
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in oncology: Distress management. Ft. Washington, PA: NCCN Clinical Practice Guidelines.
9. Institute of Medicine. . Cancer care for the whole patient: Meeting psychosocial health needs. Washington, DC: National Academies Press, 2007.
10. Vitek L, Rosenzweig MQ, Stollings S. Distress in patients with cancer: definition, assessment, and suggested interventions. Clin J Oncol Nurs. 2007 ;11(3):413-8.
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11. Zabora J. BrintzenhofeSzoc K, Curbow B, Hooker C, Piantadosi S. . The prevalence of psychological distress by cancer site. Psychooncology, 2001;10, 19–28.
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12. Institute of Medicine (IOM). Implementing Cancer Survivorship Care Planning: Workshop Summary. Washington, DC: National Academies Press. 2007.
13. Friedberg, M.W., Chen, P.G., Van Busum, K.R., Aunon, F., ,Caloyeras, J., Mattke, S., et al.
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Factors Affecting Physician Professional Satisfaction and Their Implications for Patient Care, Health Systems, and Health Policy. The Rand Corporation: Santa Monica,
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CA.2013
14. Kane, L., Chesanow, N. . Medscape EHR Report 2014: Physicians Rate Top EHRs. New York, NY.2014
15. Salz T, McCabe MS, Onstad EE, et al. Survivorship care plans: is there buy-in from community oncology providers? . Cancer. 2014;120(5):722-730.
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16. Rowland JH& Ganz P. . Cancer survivorship plans: A paradigm shift in the delivery of quality cancer care. In M. Feuerstein & P.A. Ganz (Eds.), Health services for cancer survivors: Practice, policy and Research (pp. 169-185). New York, NY: Springer.2011
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17. Institute of Medicine & National Research Council. (2006). From cancer patient to cancer survivor: Lost in transition. Washington, DC: National Academies Press.
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18. Zabora J, Blanchard, C., Smith, E., et al. Prevalence of Psychological Distress Across the Disease Continuum. J Psychosocial Oncol. 15(2): 1997,73-87.
19. Houlihan N. . Transitioning to cancer survivorship: Plans of care. Oncology (Williston Park, N.Y.)2009;, 23(8 Suppl), 42-48).
20. Andersen, B.L., Thornton, L.M., Shapiro, C.L.,et al. Biobehavioral, immune, and health benefits following recurrence for psychological intervention participants. Clin Cancer, 2010;16(12), 3270-3278.
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21. Andersen, B.L., Farrar, W.B., Golden-Kreutz, D.G., et al. Distress reduction for a psychological intervention contributes to improved health for cancer patients. Brain, Behavior, and Immunity, 2007;21, 953-961.
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22. Thornton, L.M., Andersen, B.L., Schuler, T.A., Carson, W.E. . A psychological intervention reduces inflammatory markers by alleviating depressive symptoms: Secondary analysis of randomized controlled trial. Psychosomatic Med, 2009;71, 715-724.
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23. Ko CM, Malearne VL, Varni JW, et al. . Problem solving and distress in prostate cancer patients and their spousal caregivers. SupportCare Cancer. 2005;13(6), 367-374.
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24. Bucher JA, Loscalzo M, Zabora J, Houts P, et al. . Problem-solving cancer care education for patients and caregivers. Cancer Prac.2001; 9(2): 66-70.
25. Zabora JR, Loscalzo MJ, Weber J. Managing complications in cancer: identifying and responding to the patient's perspective. Semin Oncol Nurs. 2003 ;19(4 Suppl 2):1-9. 26. Bucher J , Zabora J. Building problem-solving skills through COPE education of family
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caregivers, in Holland, J, Breitbart, W, Jacobsen, P, et al. (Eds,) (2010) PsychoOncology (2nd Ed.) Oxford Press: New York. 27. Grunfeld E, Julian JA, Pond G, et al. Evaluating survivorship care plans: Results of a
4762.
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randomized, clinical trial of patients with breast cancer. J Clin Oncol. 2011. 29(26): 4755-
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28. American Cancer Society. Cancer Facts & Figures. 2014. National Office of the American Cancer Society: Atlanta, GA.
29. Tevaarwerk, A.J., Wisinski, K.B., Buhr, K.A., et al. Leveraging electronic health record systems to create and provide electronic cancer survivorship care plans: A pilot study. J Oncol Practice;2014; 10 (3): 150-159 30. Zabora, J., BrintzenhofeSzoc, K., Curbow, B., Hooker, C., Piantadosi. S.. The prevalence of psychological distress by cancer site. Psychooncology 2001; 10(1):19- 28. 15
Figure 1-2
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Figure 1-1
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Figure 1-1 Cancer Care Trajectory Figure 1-2 Cancer Care Trajectory it is inclusive of the prevailing ofSOURCE: survivorship characterized by the National NOTE: Foremost, Palliative care is provided throughout the cancer definition care Adapted from Implementing Cancer Survivorship trajectory. Care Planning: Workshop Summary. 2007 p. 9 Washington SOURCE: Adaptedfor from IOM Committee on Cancer DC:ofIOM National and Academies and IOM Committee on Coalition Cancer Survivorship (n.d.) "from the time diagnosis for thePress balance of life." Survivorship, 2006. From Cancer Patient to Cancer Survivor: Cancer Survivorship, 2006. From Cancer Patient to Cancer Lost in Such Transition. Washington DC: The National Survivor: in Transition. Washington DC: The National a model recognizes the need Academies to provide CSCPs for theLost growing population of patients who Academies Press.(ref12) Press.(ref !7)
16
S0749-2081(14)00096-5
DOI:
10.1016/j.soncn.2014.12.001
Reference:
YSONU 50680
To appear in:
Seminars in Oncology Nursing
Please cite this article as: Zabora JR, Bolte S, Brethwaite D, Weller S, Friedman C, The Challenges of the Integration of Cancer Survivorship Care Plans with Electronic Medical Records, Seminars in Oncology Nursing (2015), doi: 10.1016/j.soncn.2014.12.001. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
ACCEPTED MANUSCRIPT
The Challenges of the Integration of Cancer Survivorship Care Plans with Electronic Medical Records
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James R. Zabora, ScD, MSW, Sage Bolte, PhD, MSW, LCSW, Drucilla Brethwaite, MSW, LCSW Saundra Weller, MSW, LCSW, Carrie Friedman, RN, BS, OCN Life With Cancer ©
8411 Pennell Street
M AN U
Fairfax, VA 22031
SC
Inova Health System
703-698-2525
AC C
EP
TE D
[email protected]
1
ACCEPTED MANUSCRIPT
Data Sources: Published peer previewed literature.
RI PT
Objectives: To provide an overview of issues and challenges associated with integrating development of survivorship care plan processes with electronic medical records (EMRs).
M AN U
SC
Conclusion: Evidence seems to indicate that survivorship care plans have value to survivors, oncology specialist providers and primary care providers. Yet, the existence of cost and time restraints are major barriers to creation and use of survivorship care plans, and the expectations that EMR can simplify and expedite survivorship care plan development have yet to be realized.
Implications for Nursing Practice: Nurses participating in development of survivorship programs can contribute to successful implementation of EMR-facilitated survivorship care plans by involvement in strategic planning processes, and establishment of reasonable timelines to address the known and unknown barriers, and assuring the resulting EMR product includes essential data and information.
AC C
EP
TE D
Key Words: Electronic Medical Record, Electronic Health Record, Survivorship Care Planning, Survivorship Care Plan
2
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The Challenges of the Integration of Cancer Survivorship Care Plans with Electronic Medical Records
In 2012, the Commission on Cancer (CoC) of the American College of Surgeons (ACoS)
established new standards of care that require patient navigation, distress screening and cancer survivorship care plans in order to create a “patient-centered focus”.1 However, the ACoS does
SC
not provide implementation guidance. Operationalization of these standards is a significant challenge to oncology providers. This article examines development of cancer survivorship care
M AN U
planning (CSCP) process that addresses the physiological, psychological and social needs of patients, and explores the challenges of employing electronic medical records to meet ACoS CoC accreditation standards and provide high-quality patient-centered care.
Background
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The early study of psychological responses to cancer survivorship and appropriate physiological and psychosocial interventions has expanded to include time points well beyond the initial diagnosis.2-5 As patients move through the early reactions, they gain experience as
EP
cancer survivors. Survivorship begins on the day of diagnosis as cancer patients begin to redefine all aspects of their lives.6 While many patients and family members strive to regain a
AC C
sense of normalcy, many experience intense feelings of distress exacerbated by the physical trauma associated with cancer therapies. For the most part, patients are forced to acknowledge that their lives will never again be the same. Patients and family members experience disruptions of their day-to-day routines, and fear of recurrence or the actual event further complicates the psychosocial course for each patient.7 During the course of therapy, patients gain critical information and knowledge concerning their disease process and treatments. Knowledge and support from the cancer care team enable patients to anticipate and understand
3
ACCEPTED MANUSCRIPT
their course of treatment and the complex problems associated with movement across the disease continuum. Beginning in 1997, the National Comprehensive Cancer Network (NCCN) established a
RI PT
panel (consisting of oncology professionals - medical, nursing, social work, counseling, psychiatry, psychology, and clergy) to focus on barriers to psychosocial care, how to address these barriers, and to develop specific guidelines for management of distress that were
SC
published in 1999.8 These guidelines were revised over the next decade. In 2007, the Institute of Medicine (IOM) published its report, Cancer Care for the Whole Patient, which supports the
M AN U
NCCN guidelines, but recommends a model of care that includes screening for distress and psychosocial needs, generating treatment plans, referring to appropriate resources, and evaluation of this process for effectiveness.9 Psychological distress was defined as “an unpleasant emotional experience of a psychological, social, and/or spiritual nature that interferes with the ability to cope effectively with cancer and its treatments. Distress extends
TE D
along a continuum, ranging from common normal feelings of vulnerability and sadness to problems that can be disabling, such as depression, anxiety, and social isolation.”10 Casual interactions with patients suggest that all patients experience some level of distress in order to
EP
normalize early reactions to cancer diagnoses. However, patients who cannot adapt to their clinical circumstances challenge the healthcare team to respond to a multitude of psychological
AC C
and social problems. For nearly one third of newly diagnosed cancer patients, the vulnerability associated with these problems generates significant psychological distress that may not manifest itself to the healthcare team until the patient reaches an observable crisis event.11 In 2012, the American College of Surgeons (ACoS) Commission on Cancer (CoC)
established new standards of care that require patient navigation (Standard 3.1), distress screening (Standard 3.2), and cancer survivorship care plans (Standard 3.3) in order to create a “patient-centered focus”.1 However, the ACoS does not provide guidance as to how to
4
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implement these three standards resulting in significant developmental and implementation challenges to oncology providers.
RI PT
Following distress screening, a CSCP could be developed and implemented during the first two weeks of care, and revised accordingly at three-months, six-months, and one-year post-
diagnosis. This sequence could optimize the desired active participation of patients and families in care as opposed to the CSCP being implemented at the completion of cancer therapies,
SC
which for most cancer patients occurs approximately six months after initial diagnosis.12
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Throughout this process, the potential role for Electronic Medical Records (EMRs) are essential. Given the volumes of patients in every level of cancer care from National Cancer Institute (NCI)designated comprehensive cancer centers to oncology community practices, adherence to these three standards will present major challenges.
Challenges to Develop CSCPs within an EMR System.
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Given the significance of the clinical content of each of the new standards, the EMR must be considered as a critical element in the collection of relevant data points as well as the consolidation of data into useable formats and templates. In general, while EMRs are perceived
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to possess a significant benefit in this area, actual results over the past three years are quite mixed. The following findings from a 2013 Rand Research Report13 are notable:
Physicians approved of EMRs in concept and appreciated having better ability to
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•
remotely access patient information;
•
For many physicians, the current state of EMR technology significantly worsened professional satisfaction in multiple ways;
•
Aspects of current EMRs that were particularly sources of dissatisfaction included poor usability, time-consuming data entry, interference with face-to-face patient care,
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inefficient and less fulfilling work content, inability to exchange health information, and decreased quality of clinical documentation.
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In a 2014 a Medscape Survey, 19,000 physicians responded and while 83% said that their hospitals had implemented an EMR system (with the highest being Epic® at 23%), only 35% believed that patient services were actually improved and 34% stated that services were worse. Oncologists’ responses (n= 404) were consistent with these overall findings14. However, 67% of
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the oncologists stated that the EMR interfered with “face-to-face” time with patients and 26% said this technology diminished their ability to manage individual patient treatment plans.14 In
needs has not been fully realized.
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many respects, the expectation that EMRs would be a solution for data and documentations
Finally, in a survey of community oncology providers (n= 245) at 14 NCI community cancer programs, only half (52%) reported ever providing any component of a CSCP to patients.15 The
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most widely reported barrier to completion of a CSCP was a lack of personnel resources and time to create CSCPs. The most widely endorsed strategy to develop CSCPs was use of a template with pre-specified fields. Of those who used templates, 94% found them to be helpful.
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For each topic of a CSCP, although 87% to 89% of oncology providers believed it was very important for primary care providers to receive the information, only 58% to 65% of respondents
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believed it was very important for patients to receive the information.15 Furthermore, 33% to 38% of respondents reported mixed feelings regarding whether it was the responsibility of oncology providers to provide CSCPs. These apparently commonly held opinions present another level of challenges to the provision of CSCPs to survivors and their families in any effective and meaningful timeframe.
Potential for Innovation in the Development of CSCPs Via EMRs
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The work of Rowland and Ganz 16 built on the Instittute of Medicine 12,17,survivorship by noting a paradigm shift from providing a CSCP upon the completion of primary treatment to initiating the CSCP process directly at the time of diagnosis and staging, as depicted in Figures 1 and 2.
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This new paradigm provides for multiple benefits. Foremost, it is inclusive of the prevailing definition of survivorship characterized by the National Coalition for Cancer Survivorship "from the time of diagnosis and for the balance of life."6 Such a model recognizes the need to provide CSCPs for the growing population of patients who experience cancer as a chronic illness, i.e.,
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who have an increased number of cancer-affected life years.18 Of equal significance, health
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promotion behaviors taught early are likely to increase functional health status.19,20 Additionally, clinicians can offer interventions and recommend referrals for patients identified with psychosocial distress, and thereby positively affect coping, adaptation and quality of life.10,20 Early introduction of a CSCP allows the document to be a fluid tool by recording information at intervals by various care team members. Documenting treatment and care throughout the
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disease trajectory can reduce the effort required to recall, gather and transcribe treatment history in a single sitting at the end of treatment, which is often identified as a barrier to
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conducting CSCPs.12,15
There are numerous templates that are available for conducting a CSCP but minimally address
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the psychosocial component of cancer survivorship. The Inova Health System developed a CSCP Life with Cancer’s© (http://www.lifewithcancer.org/), which covers the psychosocial component in depth. The plan provides for distress screening, a problem checklist assessing key psychosocial concerns, and options for referrals and evidence-based interventions. Providing psychological interventions to address patient distress can decrease symptomatology, affect morbidity and mortality and manage healthcare costs, which is well documented in the literature.18,20,21,22 Moreover, Life with Cancer’s CSCP assesses potential problems affecting the caregiver, a role that research supports is associated with positive health outcomes.23,24 Life 7
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with Cancer’s CSCP treatment summary and review of positive health behaviors is a more comprehensive tool than most other templates that address only core elements of the IOM report such as care received, characteristics of disease and treatment side effects.17 Of
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particular note, Life with Cancer’s CSCP includes late effects, extensive health promotion behaviors, a wellness plan, and an active medication record which includes over-the-counter medications, vitamins and herbal supplements.25,26 Although a paper version of the CSCP could
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be made available to patients, the tool could also be offered in a Microsoft Word format on a USB flash drive, allowing for easy portability, updating by the multiple providers often involved in
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a patient's care, and coordination of care between providers. Attention has been paid to CSCP formatting to ensure ease of reading, and space has been created for a written narrative to increase clarity. Finally, this type of format could be integrated with EMRs such as Epic within its My Chart component to enhance access to survivorship data and information for patients, family
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members and oncology providers.
This more comprehensive approach offers patients who are experiencing high distress the opportunity to participate with a family caregiver in evidence-based interventions such as
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Problem-Solving Education (PSE).24,26 A cancer experience can be complicated, and the disease, treatment side effects and stress can impact an individual’s capacity for decision
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making. PSE has been identified as the primary mechanism in managing complex problems and symptoms associated with a cancer diagnosis and related therapies.24,26 Such an intervention, designed to promote patients’ and caregivers’ acquisition of skills to engage in a systematic approach to processing information and decision-making, can increase sense of control, decrease stress, and enhance quality of life (QOL).24,25,26 The PSE could be taught by a nurse, social worker, or nurse-social worker pairs based on Life with Cancer’s model of maximizing outcomes of psychoeducational programs by simultaneously providing expertise on physiological and psychosocial issues. Of note, Grunfeld, et al27 tracked 400 survivors of breast 8
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cancer in Canada and found no differences in distress or secondary outcomes when comparing patients who had received CSCP-like instruments and those who had not.27 The addition of distress screening, an expanded CSCP, and an evidence-based intervention such as PSE may
effect patient outcomes.
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EMRs as the Potential Solution for the Development of CSCPs
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well provide the key to enabling patients to process and implement goals of the CSCP and truly
The number of cancer survivors continues to rise and the number is rapidly approaching 14
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million.28 Given the increasing number of EMR providers, the opportunity for IT solutions seems to optimistic. However, while Epic is the leading EMR provider, evidence indicates that Epic possesses only 23% of the market share with at least 17 or more EMR providers supplying the remaining 77% of these services.29 This fact produces a major challenge in devising a universal CSCP template given the numerous and competing EMR providers in place. The development
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of a CSCP for millions of patients may be impossible unless this dilemma is addressed
If the EMR is to be a critical component in the development, dissemination, and use of CSCPs,
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significant planning time and strategy are essential. Computer programming related to CSCP requires advanced planning. Planning could require 12-18 months or longer. In the case of the
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Inova Health System and Life with Cancer©, the planning strategy for development of the CSCP was estimated to require 12-18 months. Currently, Life with Cancer, in collaboration with Epic computer programmers, are developing the following potential sequence in how CSCP might be established over time:
Treatment Summary (2014) •
Compendium of all oncology treatment the patient has received to date including diagnostic test results, care team information, and documentation of surgery, chemotherapy, radiotherapy, etc 9
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Population Management (Jan.-Apr., 2015) •
Ability to track and act upon cancer survivors en masse through diagnostic test follow-
Survivorship Care Plan (May-Aug., 2015) •
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ups and long-term outcome reports.
Treatment summary plus follow-up care and population management including referrals,
Patient Engagement (Sept.-Dec., 2015)
Ability for survivors to interact and append data to their own chart via My Chart
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•
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long-term side effect management, and follow-up treatment.
integration and access patient-reported treatment outcomes. A critical point in this timeline is that a year of programming activity is required to develop a CSCP that addresses basic and comprehensive needs of survivors and family members. In a small pilot study of 38 survivors, Tevaarwerk et al29 demonstrated that rapid
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development and creation of survivorship care plans via the EMR and made available to survivors, oncologists, and primary care providers is possible. However, large scale
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demonstration of this capability has not been achieved.29
Where Do We Go From Here?
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Meeting the new American College of Surgeons (2012) Standards presents significant challenges to all oncology providers.1 The final standard focusing on the CSCP is the major emphasis of this article. Accumulation of a significant number of data points from any EMR is a daunting task. Consequently, if this task is to be accomplished for millions of cancer survivors, the process needs simplification in order to compile the essential elements of a comprehensive CSCP. However, it must be underscored that survivorship is more than physiological problems, and therefore a true comprehensive plan must include psychological and social consequences of cancer diagnoses. In particular, this is true given Standard 3.2 that focuses on distress 10
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screening and potential problems that exist for patients and families who exhibit high levels of distress.
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The ability to create CSCPs on a large scale requires planning by health systems, hospitals, and cancer centers and programs so accreditations are maintained. Cancer programs may opt not to comply with any or all of these standards because of costs or lack of resources. While this
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could be understood in terms of cost or resources, the result would be tragic for cancer survivors and family members. The fact remains that cancer survivors deserve a clear
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understanding of what has happened to them, where they are going, what may happen to them, and where they may be 10-15 years from now. All of our predictions may lack absolute accuracy, but survivors need a guide to how their lives will unfold after their diagnosis and treatments are behind them.
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Comprehensive care plans that clearly identify physiological, psychological, and social consequences of a cancer diagnosis are critical in the pathway to recovery from this serious and potentially debilitating disease. Survivors and family members need to recover and heal from
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the physical and psychological assaults associated with a cancer diagnosis. While most survivors possess the ability to manage difficulties associated with a cancer diagnosis, research
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demonstrate that 30% do not.30 This latter group of survivors will truly suffer unless their needs and appropriate interventions are identified. While a comprehensive approach to development of CSCPs would benefit all survivors, this final subset of survivors may receive a higher level of benefit that could enhance overall health care utilization. Evidence indicates that patients with “higher levels of distress” describe their symptoms and use the health care system in a very different manner.30 As a result, these patients generate higher levels of health care utilization and costs than the remaining set of survivors. Consequently, comprehensive and effective
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CSCPs possess the capability to significantly reduce health costs associated with cancer
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therapies across the United States.
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REFERENCES 1. American College of Surgeons. Cancer Program Standards 2012: Ensuring Patient-
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2. Holland, J C.. Progress and challenges in psychosocial and behavioral research in cancer in the twentieth century. [Review]. Cancer.1991 67(3 Suppl), 767-773.
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Armitage, A. S. Lichter, et al. (Eds), Clinical oncology, (2nd ed., pp. 2845–2865). New
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4. Weisman A D. . The existential plight in cancer: Significance of the first 100 days. International Journal of Psychiatry in Medicine, 1976;7(1), 1–15. 5. Weisman, A D, Worden J W & Sobel HJ. . Psychosocial screening and intervention with cancer patients: A research report. Boston, MA: Harvard Medical School.1980 6. National Coalition for Cancer Survivorship. http://www.canceradvocacy.org/about-us/our-
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mission. Accessed November 25, 2014.
7. Thewes B., Butow P., Zachariae R., Christensen S., Simard S., Gotay, C. Fear of cancer recurrence: a systematic literature review of self-report measures. (2012),
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8. National Comprehensive Cancer Network (NCCN). (2010). NCCN clinical practice guidelines
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in oncology: Distress management. Ft. Washington, PA: NCCN Clinical Practice Guidelines.
9. Institute of Medicine. . Cancer care for the whole patient: Meeting psychosocial health needs. Washington, DC: National Academies Press, 2007.
10. Vitek L, Rosenzweig MQ, Stollings S. Distress in patients with cancer: definition, assessment, and suggested interventions. Clin J Oncol Nurs. 2007 ;11(3):413-8.
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11. Zabora J. BrintzenhofeSzoc K, Curbow B, Hooker C, Piantadosi S. . The prevalence of psychological distress by cancer site. Psychooncology, 2001;10, 19–28.
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12. Institute of Medicine (IOM). Implementing Cancer Survivorship Care Planning: Workshop Summary. Washington, DC: National Academies Press. 2007.
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Factors Affecting Physician Professional Satisfaction and Their Implications for Patient Care, Health Systems, and Health Policy. The Rand Corporation: Santa Monica,
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14. Kane, L., Chesanow, N. . Medscape EHR Report 2014: Physicians Rate Top EHRs. New York, NY.2014
15. Salz T, McCabe MS, Onstad EE, et al. Survivorship care plans: is there buy-in from community oncology providers? . Cancer. 2014;120(5):722-730.
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16. Rowland JH& Ganz P. . Cancer survivorship plans: A paradigm shift in the delivery of quality cancer care. In M. Feuerstein & P.A. Ganz (Eds.), Health services for cancer survivors: Practice, policy and Research (pp. 169-185). New York, NY: Springer.2011
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17. Institute of Medicine & National Research Council. (2006). From cancer patient to cancer survivor: Lost in transition. Washington, DC: National Academies Press.
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18. Zabora J, Blanchard, C., Smith, E., et al. Prevalence of Psychological Distress Across the Disease Continuum. J Psychosocial Oncol. 15(2): 1997,73-87.
19. Houlihan N. . Transitioning to cancer survivorship: Plans of care. Oncology (Williston Park, N.Y.)2009;, 23(8 Suppl), 42-48).
20. Andersen, B.L., Thornton, L.M., Shapiro, C.L.,et al. Biobehavioral, immune, and health benefits following recurrence for psychological intervention participants. Clin Cancer, 2010;16(12), 3270-3278.
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21. Andersen, B.L., Farrar, W.B., Golden-Kreutz, D.G., et al. Distress reduction for a psychological intervention contributes to improved health for cancer patients. Brain, Behavior, and Immunity, 2007;21, 953-961.
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22. Thornton, L.M., Andersen, B.L., Schuler, T.A., Carson, W.E. . A psychological intervention reduces inflammatory markers by alleviating depressive symptoms: Secondary analysis of randomized controlled trial. Psychosomatic Med, 2009;71, 715-724.
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23. Ko CM, Malearne VL, Varni JW, et al. . Problem solving and distress in prostate cancer patients and their spousal caregivers. SupportCare Cancer. 2005;13(6), 367-374.
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24. Bucher JA, Loscalzo M, Zabora J, Houts P, et al. . Problem-solving cancer care education for patients and caregivers. Cancer Prac.2001; 9(2): 66-70.
25. Zabora JR, Loscalzo MJ, Weber J. Managing complications in cancer: identifying and responding to the patient's perspective. Semin Oncol Nurs. 2003 ;19(4 Suppl 2):1-9. 26. Bucher J , Zabora J. Building problem-solving skills through COPE education of family
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caregivers, in Holland, J, Breitbart, W, Jacobsen, P, et al. (Eds,) (2010) PsychoOncology (2nd Ed.) Oxford Press: New York. 27. Grunfeld E, Julian JA, Pond G, et al. Evaluating survivorship care plans: Results of a
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randomized, clinical trial of patients with breast cancer. J Clin Oncol. 2011. 29(26): 4755-
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28. American Cancer Society. Cancer Facts & Figures. 2014. National Office of the American Cancer Society: Atlanta, GA.
29. Tevaarwerk, A.J., Wisinski, K.B., Buhr, K.A., et al. Leveraging electronic health record systems to create and provide electronic cancer survivorship care plans: A pilot study. J Oncol Practice;2014; 10 (3): 150-159 30. Zabora, J., BrintzenhofeSzoc, K., Curbow, B., Hooker, C., Piantadosi. S.. The prevalence of psychological distress by cancer site. Psychooncology 2001; 10(1):19- 28. 15
Figure 1-2
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Figure 1-1
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Figure 1-1 Cancer Care Trajectory Figure 1-2 Cancer Care Trajectory it is inclusive of the prevailing ofSOURCE: survivorship characterized by the National NOTE: Foremost, Palliative care is provided throughout the cancer definition care Adapted from Implementing Cancer Survivorship trajectory. Care Planning: Workshop Summary. 2007 p. 9 Washington SOURCE: Adaptedfor from IOM Committee on Cancer DC:ofIOM National and Academies and IOM Committee on Coalition Cancer Survivorship (n.d.) "from the time diagnosis for thePress balance of life." Survivorship, 2006. From Cancer Patient to Cancer Survivor: Cancer Survivorship, 2006. From Cancer Patient to Cancer Lost in Such Transition. Washington DC: The National Survivor: in Transition. Washington DC: The National a model recognizes the need Academies to provide CSCPs for theLost growing population of patients who Academies Press.(ref12) Press.(ref !7)
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