Background: Researchers and clinicians have sought the best ways to implement survivorship care plans (SCPs) after cancer treatment. Despite the strong consensus-based recommendation by the Institute of Medicine and other influential stakeholders, limited evaluation data continue to be a barrier to successful implementation of the guideline.
Objectives: To evaluate participants’ level of knowledge about their personal cancer history and lifestyle recommendations after cancer treatment, and to examine the differences between those who received the SCP and those who did not.
Methods: The data were obtained from the Evaluation of Survivorship Care Plans for Cancer Survivors study sponsored by CHRISTUS St. Vincent Regional Cancer Center. A retrospective, cross-sectional design guided the analysis. The knowledge of diagnosis, treatment, and prevention, as well as screening recommendations were measured in adult cancer survivors (age ≥18 years) who received an SCP (n = 80) and those who did not receive an SCP (n = 126).
Results: Both groups had relatively high levels of knowledge on many items. Those who received an SCP answered more items correctly than those who did not receive plans, but these differences were not statistically significant. Those who did not receive care plans were significantly more likely to know what screening tests were recommended for them.
Discussion: Those who received an SCP and those who did not had similar knowledge. This study and others suggest that SCPs may not significantly impact the information exchange with cancer survivors as hoped.
Conclusion: More experimental studies are needed to further explore the best way to provide cancer survivors with the information they need.
Approximately 15.5 million cancer survivors are alive today, and this number is expected to increase to 26.1 million by 2040.1 As the number of people diagnosed and living with cancer continues to increase, the medical community is tasked to better communicate information to cancer survivors. This will help them properly address the long-term effects of cancer treatment, care coordination, and lifestyle recommendations to improve well-being and decrease the risk of recurrence.
In 2005, the Institute of Medicine (IOM; now National Academy of Medicine) released the report From Cancer Patient to Cancer Survivor: Lost in Transition, which recommended survivorship care plans (SCPs) be given to all patients at the end of treatment.2 Since the release, clinicians and researchers have sought to implement SCPs and provide evidence to evaluate the outcomes of this consensus-based recommendation. Although many studies describe the potential benefits, well-designed studies measuring the effectiveness are few,3-5 and only limited data on the benefit of SCPs on patient outcomes exist.3,4 Furthermore, actual implementation of the SCPs has been met with low clinician buy-in because they are time and resource intensive, and because there has not been clear evidence of the benefit on patient outcomes.4,6
Few studies have evaluated patients’ knowledge about their cancer history and future health maintenance as an outcome of the SCPs. Rocque and colleagues7 developed and evaluated knowledge levels among 38 breast cancer survivors in 2 groups (1 who received an SCP and 1 group who did not) pre- and post-SCP implementation. There was no statistically significant change in level of knowledge or level of satisfaction between the groups. In 2013, Nissen and colleagues8 evaluated the effectiveness of treatment summaries in increasing knowledge about diagnosis and treatment among breast (n = 203) and colorectal (n = 141) cancer survivors. They found that both breast and colorectal cancer survivors showed a statistically significant improvement in knowing the stage of their disease. However, they noted that even though significant improvement was made, patients’ knowledge of diagnosis and treatment was still not 100%. For example, 53.2% of colorectal cancer survivors did not know the stage of their disease. Overall, breast cancer survivors showed more significant improvement in knowledge than colorectal cancer survivors.
Early endorsement of SCPs by key stakeholders, such as the American College of Surgeons Commission on Cancer (CoC), and resultant policy recommendations were intended to encourage improved survivorship care. However, this has happened without strong evidence that use of SCPs leads to improved patient outcomes. In 2012, the CoC stated that all CoC-accredited programs were expected to meet or exceed the delivery of SCPs to 75% of eligible patients by the end of 2018.9 At the end of 2018, it lowered this expectation for accreditation to 50%.10 The new CoC standards, published after this study’s inception, include SCPs as part of the Survivorship Program Standard, but no specific percentage of delivery is required for accreditation.11 Although the intention behind this mandate is admirable, there are still limited evaluation data to understand whether SCPs are adequately addressing the intended purpose. And without this understanding, it will remain difficult to establish buy-in with oncology professionals because the actual implementation is time-consuming and draws on already limited resources. This is especially true for community cancer centers, which have fewer resources from which to pull. The fact that the majority of cancer patients receive care in community cancer centers instead of National Cancer Institute–designated cancer centers makes it even more important to evaluate the research from community centers.12
In an effort to meet the CoC standards for SCP implementation, 2 nurse practitioners from a medium-sized community cancer center in New Mexico developed and implemented SCPs based on national guidelines from ASCO and Journey Forward.13,14 After 2 years of implementation, the clinicians in this practice speculated that the SCPs were not positively impacting patient outcomes, and, in fact, most patients did not remember receiving the SCP. Consequently, many of the clinicians were reluctant to continue providing SCPs. The purpose of this study was to do a retrospective evaluation looking at cancer survivors who had received an SCP compared with those who did not and evaluate the difference in the patients’ level of knowledge about their cancer history and future health maintenance recommendations.
This study was approved by the University of New Mexico’s Health and Science Human Rights and Protections Office as well as by the CHRISTUS institutional review boards. It is a retrospective, cross-sectional design and was conducted in a community cancer center in the southwestern region of the United States.
Over 2 years, SCPs were provided to 164 patients who had completed cancer treatment. The SCP was implemented at the completion of treatment (surgery, radiation, chemotherapy, and/or hormone therapy) in patients with a variety of cancer diagnoses (breast, colorectal, lung, testicular, ovarian, cervical, head and neck, bladder, and lymphoma). The details of the SCP were reviewed with the patient during a 30-minute educational appointment with a nurse practitioner. After this meeting, a copy of the SCP was given to the patient, and a copy was also sent to the patient’s primary care provider (PCP).
The records for all patients who received SCPs were screened for eligibility, which included the ability to read and speak English and that they were alive. Of the 164 patients, 157 were eligible (Arm 1). Records were also mined to generate a list of similar patients (diagnosed in the same time period and with the same cancer diagnosis) who did not receive an SCP (Arm 2). At this clinic, receipt of an SCP was dependent on the oncologists’ referral to the nurse practitioner for the SCP meeting. Not all physicians in the clinic agreed with the idea of SCPs. Those who did primarily referred patients who had completed breast cancer treatment. In addition, the physicians in this group also disagreed about when the SCP should be implemented. One physician who saw a large number of breast cancer patients did not refer patients for an SCP until they had completed 5 years of hormone therapy—5 years after active chemotherapy treatment.
Eligible patients were then contacted by the research team, and permission to send them information about the study was sought. If the patient was interested in participating, an appointment was scheduled for them to inquire about participation and sign a consent form. Every effort was made to coordinate this appointment with an already scheduled follow-up appointment to lessen participant burden. Once consent was received, background and knowledge surveys were given to the participants (n = 80) to complete. The time frame from receipt of SCP to survey completion ranged from 1 to 3 years.
The knowledge survey (25 questions) was developed by the primary author to evaluate participants’ understanding of their cancer history (diagnosis and treatment) and health maintenance recommendations. The questions were derived directly from information that was communicated in the SCP. Content and face validity were established by item review from 2 established researchers who have experience in survey development and 3 experienced oncology clinicians.
The knowledge survey consisted of 25 items: oncology and PCP name(s) (up to 4 items), cancer diagnosis (1 item), the method of diagnosis (1 item), year of diagnosis (1 item), stage of diagnosed cancer (1 item), surgery details (3 items), chemotherapy details (6 items), radiation therapy details (3 item), genetic testing (2 item), recommended cancer screening (2 items), and advice about healthy lifestyle after treatment (1 item). For each item, the participant provided an answer, and the answers were then compared by the first author with the participants’ SCP (Arm 1) or their medical record (Arm 2). Answers were scored as either correct or incorrect.
Among the 25 questions, only 14 items that were applicable to every participant were used for calculating the total knowledge score. The items relating to surgery and chemotherapy were excluded from the total score because there were patients who did not have surgery or receive chemotherapy, and they could not answer those items.
The sample of the subjects who were surveyed with the 25-item questionnaire was analyzed using the 14 selected items. The Kuder-Richardson Formula 20 (KR-20) was used to assess the internal consistency of the 14 items. The KR-20 index of internal consistency of this scale was 0.39. Because the internal consistency of the scale was low, the total score was not used, and each item was analyzed individually instead.
The data were transferred into a database using the Statistical Package for the Social Sciences Windows release 25.0.15 The statistical significance level for all research questions was set at P <.05. Prior to conducting inferential analyses, all data were examined for accuracy, as well as for missing values and normality. Descriptive characteristics of the overall sample were reviewed, as well as subgroup comparisons between cancer survivors who received an SCP and those who did not. Independent sample t tests were conducted to identify statistical differences in knowledge items by arm (patients who received an SCP vs patients who did not). Because most of the participants were breast cancer survivors, a subanalysis of the differences in knowledge level among breast cancer survivors was conducted to compare patients who received an SCP compared with those who did not.
Characteristics of the Sample
Characteristics of the overall sample are summarized in Table 1. The large majority of participants were female, married, breast cancer survivors, and in cancer remission. Eighty-eight percent were white, while 42% identified themselves as Hispanic. The overall sample was highly educated, insured, and while more than half of participants (53%) were working at diagnosis, only 40% worked during treatment, and only one-third of participants reported that they were working after treatment at the time of this study.
Table 1 also compares the characteristics between cancer survivors who received an SCP (n = 80) and those who did not (n = 126). The demographic and cancer characteristics were similar between groups. The only significant difference was current working status; the group who received an SCP was more likely to be currently working (χ2 = 5.931; P <.05).
Level of Knowledge of Cancer History and Future Recommendations
Overall, both groups had a relatively high level of knowledge (Table 2). All but 1 item were answered correctly by 50% or more of the participants regardless of group. Both groups were least knowledgeable about the type of genetic testing. Those who received an SCP answered more items correctly than those who did not receive plans (14 of 25 questions), but these differences were not statistically significant. Surprisingly, those who did not receive an SCP were significantly more likely to correctly answer the question, “What screening tests have been recommended for you to screen for other types of cancers?” (t [df = 204] = –3.655; P <.001).
Subanalysis of Breast Cancer Survivors
Because the majority of participants in this study were breast cancer survivors, a subanalysis was conducted for this group. All breast cancer participants were female. The majority were older than 60 years (51%), married (61%), white (92%), and in remission (93%). Forty-two percent of participants identified themselves as Hispanic. This group also showed high educational attainment with 94% having 12 years or more of education, over 60% had an annual income of more than $35,000, and 98% had insurance during treatment. More than half (52%) of the sample was working at the time of diagnosis; however, only 35% were working at the time of the study.
Level of Knowledge of Cancer History and Future Recommendations
The subanalysis of breast cancer survivors revealed a low percentage of patients who knew their cancer stage (Table 3). There was not a significant difference between those who did (68.8%) or did not (62.1%) receive an SCP. In the overall sample, 93% answered this question correctly. The only statistically significant difference between those who received an SCP and those who did not was on the questions, “If you received chemotherapy, when did you stop chemotherapy?” (t [df = 76] = 2.012; P <.05) and “What screening tests have been recommended for you to screen for other types of cancers?” (t [df = 111] = –3.469; P <.001). When comparing the number of items answered correctly between groups, those who received an SCP were more likely to provide the correct information on 52% of the items.
This study shows that those who received an SCP did not report significantly greater knowledge about their cancer diagnosis and future care recommendations compared with those who did not receive a plan. Research within recent years has started to reflect the experience of practitioners that SCPs may not be impacting information exchange about the patients’ cancer history and future health recommendations.7,16-19 When the IOM report was released, only 2 studies by 1 author had been conducted evaluating survivorship care delivery.20,21 Since then, numerous studies have been conducted, employing a wide variety of methodologies to explore survivorship needs, models of care, and survivorship care planning. Although early observational studies showed potential benefits of SCPs, more recent randomized controlled trials have shown no difference in outcomes between those who receive an SCP and those who do not.19 The implementation of the SCPs has been time and resource intensive, in particular for community clinics. If SCPs do not have the desired effect, other means to improve communication and care for patients after cancer treatment should be explored.
All participants in this study had an overall high level of knowledge. This may be explained by the high level of education seen in this sample. Another possibility is that other forms of communication at the end of treatment may also have been successful. Hawkins and colleagues22 found that patients who received oral communication about survivorship care had better compliance with routine checkups and screening tests, but those who received the written communication had higher rates of compliance only with follow-up colonoscopies. Another research team evaluated the difference in compliance to lifestyle changes based on receiving an in-person meeting versus a handout with recommendations. They found that there was a short-term improvement in adherence to lifestyle recommendations in the in-person meeting group, but at 6 months these improvements were substantially reduced.23
Even though overall knowledge was fairly high for all participants, one might have assumed that patients who received an SCP would have scored 100% since the questions were taken directly from the information provided on the SCPs. But this was not the case. One possible explanation is that participants were unable to locate their SCPs to answer the survey questions. Campbell and colleagues had similar findings; only 2 of the 20 survivors surveyed in their study were able to locate or even remembered having received the SCP.17
There were several areas in which the overall group was knowledgeable. For example, more than 80% of participants knew who their medical oncologist was, the stage and type of cancer, whether they received chemotherapy, and what follow-up tests they needed to screen for recurrence of their cancer. However, when looking specifically at those who had breast cancer, only 69% of those who received an SCP knew their staging compared with over 93% of the overall sample that included other cancers. It is difficult to understand what accounts for this difference, because the demographic characteristics of the breast cancer survivors are very similar to the overall sample.
The areas where participants were less knowledgeable included knowing the names of their PCP and radiation oncologist, genetic testing, recommended screening for secondary cancers, and lifestyle and health recommendations. The details of genetic testing are often complicated, and this clinic setting did not have a designated genetics clinic. In general, cancer patients are given an overwhelming amount of information that is often very complex, and healthcare providers are challenged to communicate this information effectively.24 Even though genetic testing was included in the SCP, the complexity of information may have precluded their ability to understand what was provided to them. Last, of those who received an SCP, more than 50% reported that they had received enough information about long-term side effects. On the breast cancer subanalysis, only 59% of patients who received an SCP knew that they had received an anthracycline, compared with 53% of women who did not receive the SCP. This is important information for breast cancer survivors to know because of the potential long-term cardiac consequences.25
Another important gap in survivorship knowledge was reflected by the lower scores on recommended screening for secondary cancers. This level of primary prevention is imperative for cancer survivors since having one cancer diagnosis increases the risk of developing a second cancer.26 A higher percentage of respondents who did not receive an SCP correctly answered the item about screening for secondary cancer. Future research should investigate more closely how information about recommended screenings is conveyed to patients.
The strengths of this study are that it is a multiethnic sample, and that it was conducted in a community cancer center, where most of the cancer care is delivered in the United States.12 The limitations are that it is an observational study that utilized convenience sampling. This limits the generalizability of the findings. In addition, not everyone who was given an SCP participated in this study, and there may have been decisional bias among the physicians about who they referred to receive an SCP. Finally, another limitation is that evaluation of participant knowledge is reliant on the accuracy of medical records and the information manually put into the SCPs. This is a real-life problem with SCPs in general and could impact the findings in this study.
This retrospective study showed no significant differences in knowledge base between cancer survivors who received an SCP and those who did not. However, based on the design, no causal conclusions can be drawn. In general, the needs of patients in the postcancer treatment setting are diverse,27 and there is not a one-size-fits-all answer to survivorship care. Future experimental studies are needed to explore the best ways in which complex information can be communicated to patients and alternative approaches to delivering care after active treatment is completed.
The authors would like to thank the cancer survivors who took time to help us evaluate the implementation of SCPs and all the outpatient oncology nurses who helped with data collection. In addition, Dr Phillips would like to thank the Robert Wood Johnson Foundation for partial funding of her PhD studies. We would like to acknowledge editorial support with manuscript development provided by the Cain Center for Nursing Research and the Center for Transdisciplinary Collaborative Research in Self-Management Science (P30, NR015335) at The University of Texas at Austin School of Nursing.
Compliance with Ethical Standards: This study was conducted with approval from the University of New Mexico and CHRISTUS St. Vincent institutional review boards.
Conflicts of Interest: The authors have no conflicts of interest to declare.
- Bluethmann SM, Mariotto AB, Rowland JH. Anticipating the “Silver Tsunami”: prevalence trajectories and comorbidity burden among older cancer survivors in the United States. Cancer Epidemiol Biomarkers Prev. 2016;25:1029-1036.
- Hewitt ME, Greenfield S, Stovall E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press; 2005.
- Brennan ME, Gormally JF, Butow P, et al. Survivorship care plans in cancer: a systematic review of care plan outcomes. Br J Cancer. 2014; 111:1899-1908.
- Keesing S, McNamara B, Rosenwax L. Cancer survivors’ experiences of using survivorship care plans: a systematic review of qualitative studies. J Cancer Surviv. 2015;9:260-268.
- Martin TA, Moran-Kelly RM, Concert CM, et al. Effectiveness of individualized survivorship care plans on quality of life of adult female breast cancer survivors: a systematic review. JBI Database of Systematic Reviews and Implementation Reports. 2013;11(9):258-309.
- Faul LA, Rivers B, Shibata D, et al. Survivorship care planning in colorectal cancer: feedback from survivors & providers. J Psychosoc Oncol. 2012;30:198-216.
- Rocque GB, Wisinski KB, Buhr KA, et al. Development and evaluation of a survey to assess survivor knowledge change after survivorship care plans: WiSDOM-B (Wisconsin Survey of cancer DiagnOsis and Management in Breast cancer). J Cancer Educ. 2014;29:270-277.
- 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.
- American College of Surgeons. Commission on Cancer. Cancer Program Standards 2012: Ensuring Patient-Centered Care. V1.2.1. 2012. www.facs.org/cancer/coc/programstandards2012.pdf. Accessed February 8, 2019.
- American College of Surgeons. Accreditation Committee Clarifications for Standard 3.3 Survivorship Care Plan. http://cancerbulletin.facs.org/forums/Docs/Chapter%203%20Continuum%20of%20Care%20Services/Std%203.3%20Survivorship%20Care%20Plan/(Std%203.3)%20SCP%20Poster%20at%20ASCO%20(Nina%20Miller).pdf. Accessed January 23, 2020.
- American College of Surgeons. Commission on Cancer. Optimal Resources for Cancer Care (2020 Standards) Now Available. www.facs.org/quality-programs/cancer/coc/2020-standards. Accessed January 23, 2020.
- Richardson LC, Tangka FK. Ambulatory care for cancer in the United States: results from two national surveys comparing visits to physicians’ offices and hospital outpatient departments. J Natl Med Assoc. 2007; 99:1350-1358.
- American Society of Clinical Oncology. ASCO Cancer Treatment and Survivorship Care Plans. www.cancer.net/survivorship/follow-care-after-cancer-treatment/asco-cancer-treatment-and-survivorship-care-plans. Accessed Februrary 9, 2019.
- Journey Forward. Cancer Care Plan Builder. www.journeyforward.org/professionals/survivorship-care-plan-builder. Accessed February 9, 2019. The website has since been discontinued.
- IBM Corp. IBM SPSS Statistic for Mac, Version 25.0. Armonk, NY: IBM Corp; 2017.
- Boekhout AH, Maunsell E, Pond GR, et al. A survivorship care plan for breast cancer survivors: extended results of a randomized clinical trial. J Cancer Surviv. 2015;9:683-691.
- Campbell B, Massey B, Myers K. Survivorship care plans for patients with head and neck cancer. Arch Otolaryngol Head Neck Surg. 2012; 138:1116-1119.
- Grunfeld E, Julian JA, Pond G, et al. Evaluating survivorship care plans: results of a randomized, clinical trial of patients with breast cancer. J Clin Oncol. 2011;29:4755-4762.
- Jacobsen PB, DeRosa AP, Henderson TO, et al. Systematic review of the impact of cancer survivorship care plans on health outcomes and health care delivery. J Clin Oncol. 2018;36:2088-2100.
- Grunfeld E, Mant D, Yudkin P, et al. Routine follow up of breast cancer in primary care: randomised trial. BMJ. 1996;313:665-669.
- Grunfeld E, Levine MN, Julian JA, et al. A randomized controlled trial (RCT) of routine follow-up for early stage breast cancer: a comparison of primary care versus specialist care. J Clin Oncol. 2004;22(14 Suppl). Abstract 665.
- Hawkins NA, Berkowitz Z, Rodriguez JL, et al. Examining adherence with recommendations for follow-up in the prevention among colorectal cancer survivors study. Oncol Nurs Forum. 2015;42:233-240.
- Greenlee H, Molmenti CL, Crew KD, et al. Survivorship care plans and adherence to lifestyle recommendations among breast cancer survivors. J Cancer Surviv. 2016;10:956-963.
- Blanch-Hartigan D, Chawla N, Moser RP, et al. Trends in cancer survivors’ experience of patient-centered communication: results from the Health Information National Trends Survey (HINTS). J Cancer Surviv. 2016;10:1067-1077.
- Shan K, Lincoff M, Young JB. Anthracycline-induced cardiotoxicity. Ann Intern Med. 1996;125:47-58.
- Morton LM, Onel K, Curtis RE, et al. The rising incidence of second cancers: patterns of occurrence and identification of risk ractors for children and adults. Am Soc Clin Oncol Educ Book. 2014:e57-e67.
- Schlairet M, Heddon MA, Griffis M. Piloting a needs assessment to guide development of a survivorship program for a community cancer center. Oncol Nurs Forum. 2010;37:501-508.