Background: Improved diagnostic methods and treatments for breast cancer have resulted in more survivors requiring follow-up care.
Objectives: To assess patients’ views on breast cancer follow-up care and examine the potential effect on patient satisfaction of transitioning to a more patient-led follow-up.
Methods: Based on data collated from a detailed survey in a major breast cancer center, we documented the views of patients with breast cancer. All patients who received standard clinical follow-up care for at least 6 months were invited to participate in this prospective study, regardless of the stage of their disease. Patients were provided with a flowchart illustrating the current physician-led follow-up as well as a proposed “patient-triggered” process.
Results: Between November 2013 and April 2014, 317 patients were recruited. Ninety-one percent favored standard clinical follow-up to patient-triggered follow-up, and 63% noted that “open-access follow-up” is an ineffective method. Ninety-two percent indicated that current clinical-led follow-up is effective. Eighty-nine percent requested that their follow-up be led by a breast surgeon and oncologist rather than their primary care physician, breast care nurse, or community nurse. Interestingly, no significant correlation was observed between the preferred type of follow-up and age, ethnic background, distance from hospital, or time since diagnosis.
Conclusion: After initial treatment for breast cancer, patients in this study prefer standard clinician-led care to a patient-led process. They also desire clinical follow-up by a medical oncologist or breast cancer surgeon, despite the current movement toward patient-led follow-up programs. Assessment of patients’ expectations can lead to a follow-up program that supports their recovery and meets their needs.
Breast cancer is the most common malignant tumor among women in Western nations. Improved diagnostic methods and treatments have resulted in more patients surviving and requiring follow-up care.1,2
Conventionally, the primary goal of breast cancer follow-up has been to detect cancer recurrence and manage the acute problems related to treatment. Recently, there has also been greater understanding of the long-term physical and psychological effects that survivors may experience after treatment.3 Follow-up care for most patients is not complicated. It generally involves history-taking, physical examination, and imaging or blood tests as necessary.
In the United Kingdom, the nondepartmental public body, the National Institute for Health and Care Excellence, concluded that “The aims of follow-up should be to detect and treat local recurrence and adverse effects of therapy, particularly lymphedema. Intensive follow-up to detect metastatic disease before symptoms develop is not beneficial and should not be provided.”4 Contrary to this, the American Society of Clinical Oncology currently recommends regular history-taking, physical examination, and mammography for breast cancer follow-up. Physical examinations should be performed every 3 to 6 months for the first 3 years, every 6 to 12 months for years 4 and 5, and annually thereafter.5 Furthermore, guidelines of the European Society for Medical Oncology state that, despite the fact that no data from randomized studies support any particular follow-up strategy that balances patient needs and follow-up costs, regular visits should occur every 3 to 4 months in the first 2 years, every 6 months from years 3 to 5, and annually thereafter. Every visit should include thorough history-taking, asking about symptoms, and physical examination.6
Data from prospective studies aimed at determining optimal follow-up strategies are limited; therefore, no nationally recognized follow-up plan exists. Follow-up programs vary from one institution to another. Financial constraint is a pervasive concern for the National Health Service, prompting breast cancer teams and health policymakers to continually re-evaluate the need for lengthy follow-up schedules. Investigation of the financial benefits has shown that decreasing hospital follow-up time and terminating annual physical examinations would lead to substantial cost reduction while maintaining the possibility of detecting recurrence.7
In the United Kingdom, new “patient-triggered” services have been introduced, which are less time-intensive than standard follow-up care. These “open-access follow-up” services entail a more patient-led approach.8 In support of this, trials have been conducted to compare traditional hospital follow-up with telephone follow-up by specialist breast care nurses. Beaver and colleagues concluded that “telephone follow-up was well received with little physical and psychological disadvantage for women.”9 Similarly, a study to determine whether breast cancer follow-up would be appropriately managed in primary care showed that care led by general practitioners was not associated with increased time to diagnosis, increased anxiety, or deterioration of health-related quality of life. However, these studies were limited to breast cancer survivors in remission or with low to moderate risk of recurrence.10 This prompted investigations into the appropriateness of tailoring follow-up to each patient, depending on a multitude of factors, including age and prognosis.11 A study conducted at The University of Adelaide emphasized the potential benefit of tailoring follow-up to the risk of recurrence, and of using modeling methods to help guide clinical practice in an evidence-based and pragmatic manner.12 The National Cancer Institute already states to its patient audience that the frequency and nature of follow-up care is individualized, based on the type of cancer, the treatment received, and overall health; however, there is little evidence of the use of risk stratification in practice in the United Kingdom.13
Few studies have focused specifically on posttreatment effects on patients and their experiences and expectations of follow-up services. To date, patients have indicated their preference for more specialized follow-up, and it is the task of policymakers to identify a system that instills patient confidence in the care provider yet is not time-consuming and financially exhausting.14
In light of the changing concepts and challenges surrounding the future of breast cancer follow-up, the current study was conducted to identify patients’ opinions and expectations of follow-up care after primary treatment of breast cancer and to compare these findings to the care currently being provided nationally.
All study patients had undergone active treatment of breast cancer at Charing Cross Hospital, a large teaching hospital in South West London. Inclusion criteria included completion of primary treatment (surgery, radiotherapy, chemotherapy), regardless of disease stage; no evidence of recurrence; and completion of at least 6 months of follow-up care.
Eligible patients receiving follow-up care at the outpatient breast cancer department within Charing Cross Hospital were asked to participate anonymously in a brief questionnaire survey. The Institutional Review Board categorized this survey as a service evaluation; therefore, formal ethical approval was not required. Patients were provided with an information sheet, which was used to offer basic information on current breast cancer follow-up procedures and to explain the study objectives.
Patients were invited to participate in the study after having read the information leaflet, and they were asked to complete the questionnaire (Appendix 1). The questionnaire was designed and piloted in the breast surgery department. It contains 4 sections: basic demographics; disease and the treatment received; expectations and satisfaction with current follow-up; and preferences for follow-up. Satisfaction was graded from 1 to 10 (1 = not satisfied, 10 = very satisfied). Questions about “information needs” were graded on a similar scale, from 1 to 10. Suggestions of common concerns for discussion were provided, where patients were asked to rank from “little importance” to “most important.”
The helpfulness of follow-up appointments in dealing with patient concerns was ranked on a 5-point scale (1 = unhelpful, 5 = very helpful). Patients also rated various types of care practitioners on a scale of 1 to 5, indicating which one(s) they would “least like” and “most like” to lead their posttreatment care (Appendix 2).
Patients were provided with a flowchart illustrating current follow-up as well as a proposed open-access follow-up (Appendix 2). The final questions of the survey addressed patients’ preferred approach based on these flowcharts. Patients were asked, “Do you believe diagram A to depict current follow-up accurately?”
To gain a qualitative understanding of patients’ preferences, a “free text” comments section was included in each part of the questionnaire. The provided information helped identify key themes, including patients’ general satisfaction with current follow-up and opinions on open-access follow-up.
Data were collected prospectively during a 6-month period. The anonymized data were evaluated to achieve an overall understanding of patients’ views on breast cancer follow-up at this tertiary center.
Between November 2013 and April 2014, 317 patients were recruited into the study. Some surveys were only partially completed. The results below are percentages of total answered questions.
Profile of Participants
Thirty-two percent (99/309) of patients were within the first year of diagnosis, and 28% (86/309) had received follow-up for more than 3 years. Most patients (78%) were Caucasian, 9% were Afro-Caribbean, and 7% were Indo-Asian (Figure).
Patients’ Expectations of Follow-Up
The main expectation of follow-up was surveillance for early detection of recurrence, expressed by 93% (267/288), followed by addressing anxiety related to treatment side effects. Eighty-eight percent (263/298) were satisfied with their existing follow-up care (satisfaction scores 7-10) and, of those, 83% (218/263) would choose to continue existing follow-up rather than move toward an open-access approach.
Patients’ Preferences Regarding Follow-Up
Ninety-one percent (264/290) of patients favored standard clinical follow-up to open-access follow-up; 63% (173/273) noted that open-access follow-up is ineffective (Table 1). Ninety-two percent (269/292) of patients reported that their existing clinical-led follow-up was effective. Eighty-nine percent (271/304) requested that their follow-up be led by a breast surgeon and oncologist rather than their primary care physician or a community nurse. No significant correlation was observed between the type of follow-up preferred and age, ethnic background, distance from hospital, or time since diagnosis.
Key trends were identified from the analysis of qualitative data (Table 2). Major themes that emerged were (1) the reassurance patients felt by seeing a specialist breast surgeon and oncologist, which they had been doing in their standard clinical follow-up, and (2) the importance of specialists in addressing anxiety related to the possibility of recurrence.
As more patients with cancer survive the acute phase of the disease, cancer is increasingly becoming a chronic illness. The number of patients receiving follow-up care at tertiary care centers is increasing. Whether the National Health Service is able to sustain lengthy specialist-led follow-up programs is difficult to ascertain. This study demonstrates that patients prefer to continue receiving breast and oncology clinician-led care regularly rather than transition to primary care or an open-access approach.
Patients receiving follow-up care after active treatment of breast cancer seek reassurance that their disease will not recur and wish to discuss treatment and side effects, as identified in this study. The providers of acute-phase treatment are arguably the most suited to discuss these concerns, given their specialized expertise. Although general practitioners may be able to provide lengthier sessions, patients still seek reassurance from their leading clinician.15
Not all patients are dissatisfied with follow-up care by their primary care physicians. A randomized controlled trial designed to assess patient satisfaction with transfer of follow-up from hospital outpatient care to general practice showed that patients with breast cancer were more satisfied with primary care follow-up.16
An important finding of our study is patients’ desire for reassurance that their disease will not recur. Although the routine follow-up protocols used today are based on the hypothesis that recurrence will be detected earlier with regular follow-up appointments, current data suggest that this is not true and that postoperative follow-up of patients with breast cancer does not extend survival significantly.17-19 This does not diminish the need for clinician-led follow-up, but rather may emphasize the need for better education of patients by healthcare providers to ensure that patients understand that most recurrences present at unscheduled appointments, not during routine follow-up appointments; therefore, regular self-examination continues to be extremely important.19,20
The financial relief associated with movement to patient-led follow-up care is yet to be quantified but likely will be substantial. However, in light of the significant patient preference to continue current follow-up treatment, changing to patient-led follow-up may not be appropriate. The most suitable alternative may be tailored follow-up programs based on risk stratification, a possibility that has been examined in many studies.5,12,21 Tailored follow-up care may increase the effective use of hospital resources and reduce the number of unnecessary hospital visits during follow-up, yet still provide the required psychosocial support. It is anticipated that the clinical outcomes achieved with tailored follow-up would be similar to those of standard follow-up care and could be achieved at a lower cost by customizing the frequency and duration of follow-up according to individual risk profiles.21 Tools such as the PAM50 risk of recurrence (ROR) score and ROR-based risk groups could be applied to estimate the risk for late distant recurrence more accurately than is possible by established clinical risk factors. The PAM50 test can add significant prognostic information to clinical decision-making.22 This assay is based on the PAM50 gene signature, which measures expression profiles for genes and classifies tumors as 1 of 4 types. Following this, an algorithm is used to combine the gene signature, intrinsic subtype, tumor size, and proliferation score. The PAM50 score has demonstrated greater prognostic value than the recurrence score obtained by the Oncotype DX 21-gene assay and an immunohistochemical 4 assessment in patients with estrogen receptor–positive, node-negative early breast cancer; it is also more sensitive for distinguishing between intermediate risk and higher risk.23
We believe that follow-up care for patients with breast cancer is evolving and that its importance has been underestimated. Distinctive contributions of this study include new awareness that, even many years after acute treatment for breast cancer, patients still feel the need for clinician-led follow-up care, and recognition that patients prefer standard clinical follow-up to a patient-led approach. Even though the study involved nonprobability sampling, we believe that the findings from our broadly representative cohort clarify issues that are important to all patients after active treatment of breast cancer.
Although piloted, the survey may have had higher content validity if it had been derived from focus group data. As with all nonrandomized studies, this study could be subject to self-selection bias. For example, it is possible that the patients with strong views about follow-up care were more inclined to participate. The portrayal of open-access follow-up was solely as represented in the flowchart provided; therefore, the diagram may have inadvertently been misinterpreted.
In this study, we documented patients’ expectations and preferences relating to breast cancer follow-up care. The primary patient expectation of regular follow-up is detection of recurrence (93%). Most patients (91%) preferred to continue clinician-led follow-up, based on regular clinical assessment and mammography, rather than transitioning to a patient-led approach. Specifically, 89% preferred that their follow-up care be led by a clinical oncologist or a breast cancer surgeon. Surprisingly, no significant correlation was found between follow-up preferences and age, ethnic background, distance from hospital, or time since diagnosis.
Author Disclosure Statement
Ms Muktar, Mr Thiruchelvam, and Mr Hadjiminas have no conflicts of interest to report.
- World Health Organization. Cancer fact sheet no. 297. Updated February 2015. www.who.int/mediacentre/factsheets/fs297/en. Accessed September 16, 2015.
- American Cancer Society. Breast cancer facts & figures 2013-2014. www.cancer.org/acs/groups/content/@research/documents/document/acspc-042725.pdf. Accessed September 16, 2015.
- Stein KD, Syrjala KL, Andrykowski MA. Physical and psychological long-term and late effects of cancer. Cancer. 2008;112(11 suppl):2577-2592.
- National Institute for Clinical Excellence. Guidance on cancer services: improving outcomes in breast cancer manual update. August 2002. www.nice.org.uk/guidance/csgbc/evidence/improving-outcomes-in-breastcancer-manual-update-2. Accessed September 16, 2015.
- Khatcheressian JL, Hurley P, Bantug E, et al. Breast cancer follow-up and management after primary treatment: American Society of Clinical Oncology clinical practice guideline update. J Clin Oncol. 2013;31:961-965.
- Senkus E, Kyriakides S, Penault-Llorca F, et al. Primary breast cancer: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Ann Oncol. 2013;24(suppl 6):vi7-vi23.
- Lu W, Greuter MJ, Schaapveld M, et al. Safety and cost-effectiveness of shortening hospital follow-up after breast cancer treatment. Br J Surg. 2012;99:1227-1233.
- The Institute of Cancer Research. Do we need intensive follow-ups for early caught breast cancer? December 12, 2013. www.icr.ac.uk/blogs/science-talk-the-icr-blog/page-details/do-we-need-intensive-follow-ups-for-early-caught-breast-cancer-. Accessed October 16, 2015.
- Beaver K, Tysver-Robinson D, Campbell M. Comparing hospital and telephone follow up after treatment for breast cancer: randomised equivalence trial. BMJ. 2009;338:a3147.
- Grunfeld E, Levine MN, Julian JA, et al. Randomized trial of long-term follow-up for early-stage breast cancer: a comparison of family physician versus specialist care. J Clin Oncol. 2006;24:848-855.
- Van Elteren JJ. Individualized breast cancer follow-up: cost-effectiveness for various follow-up scenarios. February 27, 2008. http://essay.utwente.nl/58151/1/scriptie_J_van_Elteren.pdf. Accessed September 16, 2015.
- Bessen T, Karnon J. A patient-level calibration framework for evaluating surveillance strategies: a case study of mammographic follow-up after early breast cancer. Value Health. 2014;17:669-678.
- National Cancer Institute. Follow-up care after cancer treatment. www.cancer.gov/about-cancer/coping/survivorship/follow-up-care/follow-up-fact-sheet. Accessed September 16, 2015.
- De Bock GH, Bonnema J, Zwaan RE, et al. Patient’s needs and preferences in routine follow up after treatment for breast cancer. Br J Cancer. 2004;90:1144-1150.
- Roorda C, Berendsen AJ, Haverkamp M, et al. Discharge of breast cancer patients to primary care at the end of hospital follow-up: a cross-sectional survey. Eur J Cancer. 2013;49:1836-1844.
- 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.
- Cameron DA. Extended follow-up of breast cancer patients in clinic wastes time for both patients and doctors: the case against. Breast Cancer Res. 2008;10(suppl 4):S8.
- Montgomery DA, Krupa K, Jack WJL, et al. Changing pattern of the detection of loco-regional relapse in breast cancer: the Edinburgh experience. Br J Cancer. 2007;96:1802-1807.
- Montgomery DA, Krupa K, Cooke TG. Alternative methods of follow up in breast cancer: a systematic review of the literature.Br J Cancer. 2007;96:1625-1632
- Montgomery DA, Krupa K, Wilson C, Cooke TG. Patients’ expectations for follow-up in breast cancer—a preliminary, questionnaire-based study. Breast. 2008;17:347-352.
- Kraeima J, Siesling S, Vliegen IMH, et al. Individual risk profiling for breast cancer recurrence: towards tailored follow-up schemes 2013. Br J Cancer. 2013;109:866-871.
- Filipits M, Nielsen TO, Rudas M, et al. The PAM50 risk-of-recurrence score predicts risk for late distant recurrence after endocrine therapy in postmenopausal women with endocrine-responsive early breast cancer. Clin Cancer Res. 2014;20:1298-1305.
- Dowsett M, Sestak I, Lopez-Knowles E, et al. Comparison of PAM50 risk of recurrence score with Oncotype DX and IHC4 for predicting risk of distant recurrence after endocrine therapy. J Clin Oncol. 2013;31:2783-2790.