Background: The success of cancer treatments has resulted in rapid growth in the number of survivors, providing the impetus for the oncology community to examine models of care supporting smooth transition from active treatment to survivorship care. Although treatment summaries and survivorship care plans initially were recommendations of the Institute of Medicine, they are now accreditation requirements for many organizations.
Objective: The purpose of this evidence-based practice project was to deliver a treatment summary and survivorship care plan that would improve knowledge and provide satisfaction to women who completed adjuvant treatment for breast cancer at a community-based oncology practice.
Methods: Women who completed active treatment within the previous year were invited to attend a single, nurse practitioner–led visit in which they were given an individualized treatment summary and survivorship care plan. The patients’ knowledge (pre- and postvisit) and satisfaction (postvisit) were measured. In addition, the principal providers’ satisfaction was measured.
Results: Patients’ knowledge improved in all domains, and satisfaction was high among patients and their care providers.
Conclusion: The outcomes from this study suggest that this care model can successfully facilitate the transitioning of care for breast cancer survivors.
Today, approximately 14.5 million people are survivors of cancer, and the number is increasing steadily as a result of dramatic and rapid advances in the screening, diagnosis, and treatment of cancer.1,2 Breast cancer survivors are a prominent subset, accounting for 3.1 million survivors.2 Sixty-eight percent of adults with cancer are expected to be alive in 5 years, a remarkable upward trend from 1977, when the 5-year survival rate was only 49%.1 Today, a woman diagnosed with breast cancer has an 89% chance of being alive in 5 years, 83% in 10 years, and 78% in 15 years.2
These expanding groups of patients—those presumed cured and those living with cancer as a chronic disease—present new challenges in the paradigm of cancer care. Oncology care providers are taxed with evaluating the evidence in the rapidly expanding treatment options, including fast-tracked chemotherapeutics, biologic agents, and immunotherapies, and in determining how to best sequence therapy. The demand to keep pace in the area of acute oncology has overshadowed the growing concerns on both ends of the spectrum of oncology care: those who will survive the disease and those who will succumb to it. The evaluation and implementation of care models to transfer responsibilities to other qualified providers is a vexing challenge.
In the 2006 Institute of Medicine (IOM) report, From Cancer Patient to Cancer Survivor: Lost in Transition, survivorship care was described as falling short of the ideal, being plagued with poor communication, fragmentation, and lack of coordination of services.3 Also cited were inappropriate use of services, lack of attention to late- and long-term effects, and the absence of preventive care.3
In other reports, a major limitation of survivorship care is reported by patients as insufficient communication between their oncologist and their primary care provider (PCP), leading to feelings of anxiety and abandonment.4,5 Furthermore, in one study, a significant proportion (84%) of PCPs reported being uncertain of the frequency and type of surveillance tests they should be ordering.6
Essential to monitoring cancer survivors is understanding the long-term side effects of the drugs and treatment modalities employed.7 In a 2009 “Survey of Physician Attitudes Regarding the Care of Cancer Survivors” reported at the 2012 annual meeting of the American Society of Clinical Oncology, of 1072 PCPs who responded, only 6% were able to identify the 4 main late adverse effects of 4 frequently used chemotherapies compared with 65% of oncologists.8 In the IOM report cited earlier, only 1 of the 10 recommendations (recommendation 2) cited by the IOM for improving care of survivors was concrete and clearly directed at providers of oncology care; that recommendation says, “Patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan.”3
Current cancer treatment modalities save many more lives than past treatments, but have considerable consequences and are far from benign.9,10 The cancer experience does not conclude with completion of active treatment; most survivors have long-lasting and latent adverse physical and psychosocial effects.9,11 Survivorship is a distinct phase in the trajectory of the cancer experience.3 Studies of survivors revealed more than 25 problems and needs of patients following treatment, including fatigue, sleep deprivation, pain, depression, anxiety, and fear of recurrence,3,9,12,13 all of which may impair quality of life.
Survivors of breast cancer have additional concerns such as weight gain, skin changes, lymphedema, and cognitive impairment, and for those with hereditary breast cancer syndromes, risk to family members.3,9,13,14 The side effects of estrogen deprivation, such as hot flashes, vaginal dryness, premature menopause, infertility, and risk of osteoporosis, also affect quality of life.3 For cancer survivors, high levels of stress and persistent side effects of cancer treatment may give rise to feelings of isolation, anxiety, and depression.3,12,15
Cancer survivors have more comorbidities and chronic health problems than the general population, and are at risk for receiving inadequate healthcare.3,11 At the conclusion of active treatment, survivors report wanting more information about their diagnosis, treatment, long-term side effects, risk of recurrence, and health maintenance.16,17 As the immediate crisis of diagnosis and treatment wanes, other matters become paramount as the survivors begin the process of finding their “new normal,” such as insurance issues, occupational concerns, medical bills, and relational issues.3,18
Treatment summaries and survivorship care plans were designed to synopsize the modalities used in treating a patient’s cancer and to serve as a guide for follow-up care.3 The provision of a treatment summary and survivorship care plan is now a core measure of the American College of Surgeons Commission on Cancer, American Society of Clinical Oncology (ASCO) Quality Oncology Practice Initiative, and the National Accreditation Program for Breast Centers.19-21 Presently, only 43% of the National Cancer Institute (NCI)-designated cancer centers provide treatment summaries and survivorship care plans for survivors of breast and/or colorectal cancer.6 According to a national survey of 1130 medical oncologists, some aspect of survivorship care was always or almost always discussed 64% of the time; however, less than 10% of the oncologists consistently provided a written treatment summary and survivorship care plan.22
The purpose of this evidence-based practice project was to incorporate a treatment summary and survivorship care plan for women completing adjuvant treatment for breast cancer that would enhance their knowledge and satisfaction with care. The treatment summary, survivorship care plan, and survivorship visit were designed to provide clarity to the survivors on the frequency and purpose of follow-up visits, to educate them on the possible long-term and late effects of treatment, to assess risk factors, and to teach healthy behaviors to minimize recurrence and secondary cancers. An additional goal was to disseminate this information to the providers involved in the patient’s ongoing care.
Local Problems and Settings
California Cancer Associates for Research and Excellence is a community-based, multilocation, large oncology/hematology practice in Southern and Central California. This practice innovation was incorporated in a single office setting that includes 2 full-time oncologists, 1 full-time nurse practitioner (NP), and 1 part-time NP.
At the start of treatment, significant time and resources were allocated to preparing the patient for chemotherapy through a formal, standardized chemotherapy teaching protocol. At the completion of adjuvant chemotherapy, no formal visits or written materials addressing survivorship, a treatment summary, or a survivorship care plan were provided. The oncologists and NPs jointly shared posttreatment follow-up visits, which were aligned with ASCO’s evidence-based guidelines. No written protocol outlining the oncology follow-up care existed to formally communicate with the patient or the providers.
Goals, Benchmark, and Evaluation
The overall goal of this project was to improve survivors’ knowledge and satisfaction by using treatment summaries and survivorship care plans. Participants’ confidence in their knowledge of survivorship care was measured before and after the survivorship visit, using the Confidence in Survivorship Information (CSI) tool (Figure 1). This tool is a validated, 13-item, 3-point Likert-type scale developed for this population. Of these, 3 items are used to measure survivors’ confidence in knowledge of diagnosis and treatment details (reliability, Cronbach’s alpha = 0.77). The other 10 items (Cronbach’s alpha = 0.95) are used to measure confidence in prevention; late- and long-term effects of treatment and the cancer itself; prevention of future disease; familial risk for cancer; and access to resources. For each item, respondents rate their level of confidence as “not at all confident,” “somewhat confident,” or “very confident.”23
The individual benchmark for patient satisfaction was for 80% of the participants’ overall satisfaction to be rated as agree or strongly agree. Their satisfaction was measured using the Patient Satisfaction with Cancer-Related Care (PSCC) tool (Figure 2). The PSCC is a validated 18-item tool with a 5-point Likert scale (1 = strongly agree, 5 = strongly disagree). This tool has demonstrated high construct validity, internal consistency, and reliability with diverse socioeconomic and cultural populations.24
The provider satisfaction tool was investigator developed, and designed to be answered in less than 3 minutes; it consists of 3 questions and a 5-point Likert scale (Figure 3). The established benchmark for provider satisfaction was the same—80% of providers agreeing or strongly agreeing that the treatment summary and survivorship care plan were easy to understand, were useful in promoting effective patient care, and provided pertinent information.
After obtaining approval from the Institutional Review Board, the project was guided by the Johns Hopkins Nursing Evidence-Based Practice Model. The model has a practice process with 3 areas of focus—practice question, evidence, and translation (Figure 4).
The practice question—“In women completing adjuvant treatment for breast cancer, would the provision of a treatment summary and survivorship care plan enhance knowledge and satisfaction with care?”—was initiated by the NPs at the site and was supported by the oncologist and staff who actively participated in the design and execution of the program. A comprehensive review of the literature provided the evidence base and examples of numerous written and computerized templates of treatment summaries and survivorship care plans that had been implemented in various oncology settings, both academic and community based.
Translation of the evidence into a working model began at the start of care. The “Journey Forward Care Plan Builder” is a computer program providers can use to create individualized treatment summaries and a survivorship care plan.25 We downloaded the program onto the computers of the medical assistants and NPs. A standard breast cancer survivorship template, reflecting resources and practice patterns of the office, was developed and loaded onto a shared drive. During the chemotherapy-teaching visit, the medical assistant obtained the information needed to complete the demographic and care-team portions of the treatment summary and survivorship care plan.
Using the pathology report, chemotherapy orders, and oncology consultation, the NP completed the background information and treatment plan. An estimate of the date of treatment completion was made and noted in a file. Each month, the NP reviewed the progress of the patients, and a 50-minute survivorship visit was scheduled for those who had completed treatment. Before the survivorship visit, the NP completed the remaining sections of the treatment summary and survivorship care plan.
On the day of the survivorship visit, the patient received an explanation of the evidence-based practice project and was invited to participate in the pre- and postevaluation process. Patients were given the opportunity to opt out of completing any or all parts of the evaluation. Those who opted out still received the survivorship visit, personalized treatment summary, and survivorship care plan.
During the survivorship visit, the NP reviewed the treatment summary, survivorship care plan, and the NCI booklet, “Facing Forward: Life After Cancer Treatment.”15 Input was solicited on lingering effects of treatment, questions were answered, and referrals were generated. Modifications were made based on patients’ input, and a revised hard copy of the treatment summary and survivorship care plan was printed. These documents were scanned into the electronic medical record, and a personalized survivorship visit note was generated using a standard template. The PCP and care team were mailed a brief letter of explanation, the revised treatment summary and survivorship care plan, the provider survey, a self-addressed stamped envelope, and a $5 gift card for coffee. Each provider was surveyed only once.
During the evaluation period, 21 patients participated in the practice innovation. As demonstrated in Figure 5, the intervention improved the mean confidence score in patients’ knowledge of their cancer diagnosis and treatment details from 1.57 to 2.0. Similarly, the mean confidence scores for knowledge of prevention, late- or long-term effects, resources, and familial risk for cancer improved from 0.82 to 1.85 (t = 8.66; Figure 5). Of the participants, 100% experienced an improvement in one or more areas of confidence in knowledge. The average satisfaction was rated as agree or strongly agree by 95% of the participants (Figure 6).
Of the 26 providers who were mailed a treatment summary and survivorship care plan, 19 (73%) returned the survey. Of these, 85% agreed or strongly agreed the treatment summary and survivorship care plan were easy to understand, useful in promoting effective care, and provided pertinent information (Figure 7).
An analysis of cost per visit was performed. The average reimbursement by payer mix for a level 5 follow-up visit was obtained. Estimated costs of the resources required by the NPs and the medical assistant to complete all parts of the project, based on hourly rate, were subtracted from the average amount of reimbursement. An additional $5 was added to cover the cost of printing the NCI booklet. It was estimated that each visit generated revenue of approximately $25 to $30.
Arguably, there are far worse diseases than cancer, but few in which people associate so dramatically with suffering, pain, and premature death. While feeling relatively well, the newly diagnosed patient is thrust into a treatment plan that is difficult, lengthy, and potentially debilitating. Throughout the diagnosis and treatment stages, patients have numerous contacts with many healthcare providers. At the completion of treatment, this frequent contact suddenly and abruptly ceases. As stated earlier, there is extensive literature on the residual physical, emotional, and psychosocial effects of cancer and its treatment. Therefore, it is paramount for the medical community to recognize the inherent anxiety emerging for patients at the completion of active treatment and to acknowledge the transition to survivorship as a significant event, as suggested by the IOM report.3
At the conclusion of adjuvant cancer treatment, the questions and concerns of each patient are different. As early apprehensions about side effects of treatment and impact on lifestyle begin to fade, new issues and concerns emerge. As demonstrated by this evidence-based practice project, the impact of treatment summaries, survivorship care plans, and survivorship visits at the end of treatment is similar to the impact of chemotherapy teaching at the start of treatment. Outcomes of survivorship care supported by the literature include reduction of anxiety, fear, and confusion; increase in knowledge; and improvement in self-care recommendations.7-10,12
It is important to recognize the aspects of this practice setting that allow the treatment summaries and survivorship care plans to be constructed at a reduced time and cost relative to the experience of others.5,26 By creating a standard template and populating more than 40% of it at the chemotherapy-teaching session, the NP was able to save considerable time. More time may be needed in practices where the treatment summary and survivorship care plan are generated at the conclusion of treatment, when the content of the medical chart is more extensive. The NPs at this practice were familiar with the patients, their treatment, and the problems encountered during the course of care. This proved advantageous; the NP was able to complete the treatment summary and survivorship care plan in an efficient manner, which might not be possible in large practices or if the treatment summary and survivorship care plan are produced in a dedicated survivorship clinic or by a different set of providers. The meaningful reduction in labor costs reported by others5,26,27 was achieved by training medical assistants to complete the data entry and by incorporating a significant portion of the process into the existing workflow.
Although much of the literature on methods of delivering treatment summaries, survivorship care plans, and survivorship care has originated from academic and large oncology centers, most patients with cancer receive the bulk of their treatment in community practices.28,29 For many patients who receive treatment with curative intent, their life as a survivor will be far longer than as a patient with active cancer. In light of the expected longevity, it is logical that attention be given to the needs of this population. As demonstrated by this project, it is possible to not only meet the requirements of the standards but also provide value-added, cost-effective care that is meaningful to patients and to other providers.
It is important to note that, although the CSI tool measured the patients’ confidence in their knowledge of survivorship information, it was not designed to measure the accuracy of their knowledge. During review of the treatment summary and survivorship care plan, the NP observed that some patients had an incorrect understanding of their diagnosis and/or treatment, but this was not measured in a scientific manner. This was witnessed most frequently when reviewing the stage of cancer; patients often believed that their disease was a stage higher or lower.
This observation was further validated by the pre-/postvisit degree of improvement in this domain (questions 1-3 of the CSI tool), which was not as robust as in the follow-up care domain. Anderson and colleagues made a salient point when stating that patients immediately forget 40% to 80% of the medical information in a follow-up encounter, and 48% of what is retained is erroneous.30 The more complex and/or distressing the information, the more likely the patient will remember it inaccurately.30
The treatment of cancer is intensive, lengthy, and complex. Therefore, as shown by this evidence-based practice project, the treatment summary, survivorship care plan, and survivorship visit also are valuable, because they represent an opportunity to correct inaccurate and erroneous information, while educating on the next steps in care.
Patient education reduces anxiety and depression, promotes self-care and engagement, and has a positive effect on satisfaction, clinical outcomes, compliance, and quality of life for adults with cancer.31-33 Furthermore, the use of written information improves the accuracy of knowledge recall and has demonstrated improvement in adherence to recommendations.30-33 It is also cost-effective.34
As demonstrated by this project, the advanced practice registered nurse (APRN) is well-positioned to provide survivorship care. The role of the APRN in symptom management and support during the acute phase of cancer treatment results in frequent patient contact, allowing for understanding of the individual dynamics by which each patient and his or her family experience cancer. The holistic lens by which APRNs view the care of patients with serious illness, coupled with an education geared toward restoring health and wellness, provides an ideal skill set for the provision of survivorship care.
Treatment summaries and survivorship care plans fulfill only 1 of the 10 recommendations of survivorship care outlined in the 2006 IOM report.3 As new drugs and treatments, whose long-term side effects are still unknown, continue to expand the survivorship pool, the need to implement comprehensive survivorship care within community-based settings is crucial. The ability to provide curative cancer therapy is a noteworthy accomplishment worth celebrating. However, this is not enough if patients are left debilitated, vulnerable to other diseases, or with poor quality of life. Although transferring care to a dedicated survivorship clinic or a PCP is a viable and proved model, the value of the IOM’s direction that the survivorship care plan “be written by the principal provider(s) who coordinated oncology treatment”3 cannot be overemphasized. It is these providers who possess the knowledge to accurately set the course needed to ensure appropriate and comprehensive follow-up.
The value of a treatment summary and survivorship care plan is more pertinent than ever as our medical system continues to evolve and become more complex. Compliance with accreditation standards and with the IOM recommendations are the impetus for many organizations moving toward the provision of treatment summaries and survivorship care plans. However, the driving force for oncology providers in expanding the scope and practice of survivorship care should be empowering patients with knowledge to participate in their own surveillance, risk reduction, and wellness, and improving the continuum of care. As the pool of survivors continues to grow, more research is required to comprehensively address the unique and changing needs of patients with cancer in the 21st century.
Author Disclosure Statement
Ms Klein and Dr Hawkins have no conflicts of interest to report.
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- American Cancer Society. Cancer treatment & survivorship facts & figures 2014-2015. www.cancer.org/acs/groups/content/@research/documents/document/acspc-042801.pdf. Accessed January 15, 2015.
- Institute of Medicine. Hewitt M, Greenfield S, Stovall E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press; 2006.
- Blinder VS, Norris VW, Peacock NW, et al. Patient perspectives on breast cancer treatment plan and summary documents in community oncology care: a pilot program. Cancer. 2013;119:164-172.
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- Nissen MJ, Tsai ML, Blaes AH, et al. Effectiveness of treatment summaries in increasing breast and colorectal cancer survivors’ knowledge about their diagnosis and treatment. J Cancer Surviv. 2013;7:211-218.
- Chustecka Z. Lack of awareness of late drug effects in cancer survivors. Medscape. May 17, 2012. www.medscape.com/viewarticle/764018. Accessed April 5, 2015.
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- Rechis R, Beckjord EB, Nutt S. Potential benefits of treatment summaries for survivors’ health and information needs: results from a LIVE-STRONG survey. J Oncol Pract. 2014;10:75-78.
- Shalom MM, Hahn EE, Casillas J, Ganz PA. Do survivorship care plans make a difference? A primary care provider perspective. J Oncol Pract. 2011; 7:314-318.
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- Heinze S, Williams PD, Bott M. Ongoing symptoms reported by breast cancer survivors: palliative implications. J Hosp Palliat Nurs. 2015;17:157-164.
- Kantsiper M, McDonald EL, Geller G, et al. Transitioning to breast cancer survivorship: perspectives of patients, cancer specialists, and primary care providers. J Gen Intern Med. 2009;24(suppl 2):S459-S466.
- National Institutes of Health. National Cancer Institute. Facing forward: life after cancer treatment. www.cancer.gov/publications/patient-education/life-after-treatment.pdf. Revised May 2014. Accessed August 24, 2015.
- Mayer DK, Gerstel A, Leak AN, Smith SK. Patient and provider preferences for survivorship care plans. J Oncol Pract. 2012;8:e80-e86.
- Smith SL, Singh-Carlson S, Downie L, et al. Survivors of breast cancer: patient perspectives on survivorship care planning. J Cancer Surviv. 2011;5:337-344.
- Jackson JM, Scheid K, Rolnick SJ. Development of the cancer survivorship care plan: what’s next? Life after cancer treatment. Clin J Oncol Nurs. 2013;17:280-284.
- American College of Surgeons Commission on Cancer. Cancer program standards 2012: ensuring patient-centered care. www.facs.org/~/media/files/quality%20programs/cancer/coc/programstandards2012.ashx. Accessed August 25, 2015.
- McCabe MS, Bhatia S, Oeffinger KC, et al. American Society of Clinical Oncology statement: achieving high-quality cancer survivorship care. J Clin Oncol. 2013;31:631-640.
- American College of Surgeons. National Accreditation Program for Breast Centers: standards manual, 2014 edition. www.facs.org/~/media/files/quality%programs/napbc/2014%napbc%standards%20manual.ashx. Accessed August 25, 2015.
- 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;32:1578-1585.
- National Cancer Institute. Confidence in Survivorship Information (CSI). www.gem-measures.org/public/MeasureDetail.aspx?mid=1385&cat=2. Updated November 18, 2014. Accessed September 1, 2015.
- Jean-Pierre P, Fiscella K, Freund KM, et al. Structural and reliability analysis of a patient satisfaction with cancer-related care measure: a multisite patient navigation research program study. Cancer. 2011;117:854-861.
- Journey Forward. About Journey Forward. www.journeyforward.org. www.journeyforward.org/about-journey-forward. Accessed August 25, 2015.
- Stricker CT, O’Brien M. Implementing the commission on cancer standards for survivorship care plans. Clin J Oncol Nurs. 2014;18(suppl):15-22.
- Brothers BM, Easley A, Salani R, Andersen BL. Do survivorship care plans impact patients’ evaluations of care? A randomized evaluation with gynecologic oncology patients. Gynecol Oncol. 2013;129:554-558.
- National Cancer Institute. Frequently asked questions: NCI community cancer centers program pilot 2007-2010. http://ncccp.cancer.gov/Media/FactSheet.htm. Accessed July 3, 2015.
- American Society of Clinical Oncology. The state of cancer care in America, 2014: a report by the American Society of Clinical Oncology. J Oncol Pract. 2014;10:119-143.
- Anderson JL, Dodman S, Kopelman M, Fleming A. Patient information recall in a rheumatology clinic. Rheumatol Rehabil. 1979;18:245-255.
- Devine EC, Westlake SK. The effects of psychoeducational care provided to adults with cancer: meta-analysis of 116 studies. Oncol Nurs Forum. 1995;22:1369-1381.
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