Clinical Nurse SpecialistA Copyright B 2015 Wolters Kluwer Health, Inc. All rights reserved.
Feature Article Breast Self-examination Education for BRCA Mutation Carriers by Clinical Nurse Specialists Annemiek Visser, MSc n Wilmy C. A. M. Bos, RN, CNS n Judith B. Prins, PhD n Nicoline Hoogerbrugge, MD, PhD n Hanneke W. M. van Laarhoven, MD, PhD
Purpose: Breast self-examination (BSE) may be beneficial for women with a BRCA1 or BRCA2 mutation. Therefore, these women are often advised to perform BSE. However, only 20% to 35% is performing BSE monthly, and proficiency levels are low. Recently diagnosed carriers are educated by a specially trained clinical nurse specialist (CNS) on how to perform BSE, as part of the yearly surveillance. Clinical nurse specialists are already commonly involved in breast cancer care. However, CNSs are not yet involved in the counseling of BRCA mutation carriers. The aim of this RCT was 2-fold: (1) to evaluate the feasibility of CNS-led BSE education (based on the Health Belief Model) as part of BRCA surveillance and (2) to evaluate the effects and feasibility of additional written information leaflets concerning BSE. Methods: Thirty-seven female BRCA1 or BRCA2 mutation carriers were randomized into the intervention or control group. Women in both groups were educated about BSE by a specially trained CNS during the yearly visit to the outpatient clinic. The intervention group received additional written BSE instructions. After 3 months, 29 patients filled out a questionnaire, covering demographic characteristics, BSE behavior, and patient satisfaction.
Author Affiliations: PhD Student (Ms Visser), and Professor in Psychosocial Oncology, Clinical Psychologist, and Head of Department (Dr Prins), Department of Medical Psychology; Clinical Nurse Specialist (Ms Bos) and Medical Oncologist (Dr Laarhoven), Department of Medical Oncology; Professor in Hereditary Cancer, Medical Specialist for Internal Medicine, and Head of Outpatient Clinic for Hereditary Cancer (Dr Hoogerbrugge), Department of Genetics, Radboud university medical center Nijmegen; Professor in Translational Oncology and Medical Oncologist (Dr Laarhoven), Academic Medical Center, University of Amsterdam, Amsterdam, the Netherlands. The authors report no conflicts of interest. Correspondence: Annemiek Visser, MSc, Department of Medical Psychology, Radboud university medical center, PO Box 9101, 6500 HB Nijmegen, the Netherlands ([email protected]). DOI: 10.1097/NUR.0000000000000118
Clinical Nurse Specialist
Results: The BSE frequencies did not significantly differ between both groups. A significant increase in the self-reported frequency of BSE after CNS-led education (P G .001) was shown. Before the education, the main reason for not performing BSE was that women had felt unable to perform BSE (42.9%). Patient satisfaction with the CNS-led education was high. Conclusion: CNSYled BSE education is feasible for the yearly breast surveillance of BRCA mutation carriers. In addition, a leaflet was shown to be useful as an additional source of information for patients. Implications: These results indicate that it is feasible to involve a CNS in the yearly surveillance of BRCA mutation carriers, which could be a solution for the continuous increased demand for care, while providing continuing high-quality care. KEY WORDS: breast cancer, breast self-examination, BRCA, clinical nurse specialist, education, Health Belief Model, nurse, surveillance
F
or female BRCA mutation carriers, the risk of developing breast cancer is 60% to 80%.1Y3 Although prophylactic bilateral mastectomy reduces the risk of breast cancer by 89.5% to 100%,4Y7 a majority of the BRCA mutation carriers opt for breast cancer screening, which includes annual clinical breast examination, annual mammography, and annual contrast-enhanced magnetic resonance imaging of the breasts.4Y6 Besides clinical examination and surveillance, BRCA mutation carriers may benefit from monthly self-examination of the breasts.8 Earlier studies on the value of breast selfexamination (BSE) in the general population showed contradictory results.9Y12 Although BSE does not increase survival rates, and breast tumors can be detected in an earlier stage by imaging compared with self-breast examination,13 some study results showed that a significant proportion of
A
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Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
E1
Feature Article breast tumors (41%Y57%) are still identified by patients themselves, either by coincidence or by BSE.13Y15 Besides that, BSE might be more effective in women with a BRCA mutation, because their tumors seem to be of a higher grade and are therefore more likely to develop between the moments of annual imaging.16Y18 Also, BSE may have a psychological benefit for women with a high risk of developing breast cancer. Breast selfexamination provides most women with a sense of control over their own health, even when they are aware of the lack of evidence for the effectiveness of BSE.19 Recommendations regarding BSE for BRCA mutation carriers differ among countries and even between institutions within countries.8,19Y21 Women with a BRCA mutation who have their yearly surveillance in the [Radboud university medical center] are taught to perform monthly BSEs, because there is no evidence against BSE for this patient population. Besides, our vision is that women should become aware of the normal structure of their breasts to be able to detect abnormal changes. In fact, BSE is advised as an additional strategy in the Dutch guideline on hereditary breast cancer8 and has been incorporated in surveillance protocols in the United States, Australia, and Europe that have been published recently.22Y24 Studies among BRCA mutation carriers showed that around 25% to 42% never perform BSE. Of those performing BSE, only 34% to 46% are doing this every month (which is necessary to become aware of abnormal changes).19,25 This indicates that 65% to 80% of the patients could improve BSE performance. In addition, BSE proficiency levels are poor in most women.26 These numbers underline the importance of education for this high-risk group. A study among BRCA mutation carriers showed that the most common reasons for not performing BSE are a negative attitude toward the value of BSE, difficulties in determining normal and abnormal changes in the breasts, a lack of knowledge and self-efficacy on how to perform BSE, fear or anxiety of finding abnormalities during BSE, and increased feelings of fear and anxiety about developing breast cancer.19 Interventions focusing on stimulation of BSE in healthy women showed beneficial effects on attitude, knowledge, and frequency of BSE.27Y33 However, little is known about the effect of BSE education among BRCA mutation carriers. Therefore, the aim of this study was to evaluate the feasibility of a BSE education intervention specially designed for BRCA mutation carriers. In designing the content of our BSE education, the Health Belief Model (HBM) was used as a basis. As indicated in this model, perceived susceptibility (belief of susceptibility to develop breast cancer) and perceived severity (belief of seriousness of breast cancer) are important factors in influencing health behavior, including BSE.31,34,35 BRCA mutation carriers generally score high on these factors, because they know they have an increased risk of breast cancer, and E2
most of them have at least 1 direct family member who has been confronted with the disease.25,36,37 Because previous studies focusing on screening behaviors showed that especially self-efficacy, perceived benefits, and perceived (emotional) barriers (expected difficulties in performing BSE) are strong predictors of BSE,34 our intervention will focus mainly on these concepts. Following the HBM, some women will need additional ‘‘cues to action’’ (internal or external prompts to stimulate BSE) as a final trigger to perform BSE.35,38 Until recently, all BRCA mutation carriers at outpatient clinics consulted medical specialists such as internists, medical oncologists, or surgeons. However, earlier studies showed that clinicians are generally more focused on medical issues, whereas nurse practitioners or clinical nurse specialists (CNSs) are more involved in patient education and psychosocial issues, also in cancer prevention and screening.39,40 In addition, the duration of an outpatient visit to a CNS is often longer and more frequent.41Y43 Clinical nurse specialists are able to provide both health promotion and maintenance through assessment, diagnosis, and management of acute and chronic patient problems. Compared with nurses, CNSs provide more consultant roles as expert clinicians, clinical leaders, educators, collaborators, and researchers.44,45 The consulting role is an essential part of the BRCA surveillance. Accordingly, performing the yearly surveillance of BRCA mutation carriers (including BSE education) at the outpatient clinic perfectly fits the role description of the CNS. CNS
Feature Article Breast Self-examination Education for BRCA Mutation Carriers by Clinical Nurse Specialists Annemiek Visser, MSc n Wilmy C. A. M. Bos, RN, CNS n Judith B. Prins, PhD n Nicoline Hoogerbrugge, MD, PhD n Hanneke W. M. van Laarhoven, MD, PhD
Purpose: Breast self-examination (BSE) may be beneficial for women with a BRCA1 or BRCA2 mutation. Therefore, these women are often advised to perform BSE. However, only 20% to 35% is performing BSE monthly, and proficiency levels are low. Recently diagnosed carriers are educated by a specially trained clinical nurse specialist (CNS) on how to perform BSE, as part of the yearly surveillance. Clinical nurse specialists are already commonly involved in breast cancer care. However, CNSs are not yet involved in the counseling of BRCA mutation carriers. The aim of this RCT was 2-fold: (1) to evaluate the feasibility of CNS-led BSE education (based on the Health Belief Model) as part of BRCA surveillance and (2) to evaluate the effects and feasibility of additional written information leaflets concerning BSE. Methods: Thirty-seven female BRCA1 or BRCA2 mutation carriers were randomized into the intervention or control group. Women in both groups were educated about BSE by a specially trained CNS during the yearly visit to the outpatient clinic. The intervention group received additional written BSE instructions. After 3 months, 29 patients filled out a questionnaire, covering demographic characteristics, BSE behavior, and patient satisfaction.
Author Affiliations: PhD Student (Ms Visser), and Professor in Psychosocial Oncology, Clinical Psychologist, and Head of Department (Dr Prins), Department of Medical Psychology; Clinical Nurse Specialist (Ms Bos) and Medical Oncologist (Dr Laarhoven), Department of Medical Oncology; Professor in Hereditary Cancer, Medical Specialist for Internal Medicine, and Head of Outpatient Clinic for Hereditary Cancer (Dr Hoogerbrugge), Department of Genetics, Radboud university medical center Nijmegen; Professor in Translational Oncology and Medical Oncologist (Dr Laarhoven), Academic Medical Center, University of Amsterdam, Amsterdam, the Netherlands. The authors report no conflicts of interest. Correspondence: Annemiek Visser, MSc, Department of Medical Psychology, Radboud university medical center, PO Box 9101, 6500 HB Nijmegen, the Netherlands ([email protected]). DOI: 10.1097/NUR.0000000000000118
Clinical Nurse Specialist
Results: The BSE frequencies did not significantly differ between both groups. A significant increase in the self-reported frequency of BSE after CNS-led education (P G .001) was shown. Before the education, the main reason for not performing BSE was that women had felt unable to perform BSE (42.9%). Patient satisfaction with the CNS-led education was high. Conclusion: CNSYled BSE education is feasible for the yearly breast surveillance of BRCA mutation carriers. In addition, a leaflet was shown to be useful as an additional source of information for patients. Implications: These results indicate that it is feasible to involve a CNS in the yearly surveillance of BRCA mutation carriers, which could be a solution for the continuous increased demand for care, while providing continuing high-quality care. KEY WORDS: breast cancer, breast self-examination, BRCA, clinical nurse specialist, education, Health Belief Model, nurse, surveillance
F
or female BRCA mutation carriers, the risk of developing breast cancer is 60% to 80%.1Y3 Although prophylactic bilateral mastectomy reduces the risk of breast cancer by 89.5% to 100%,4Y7 a majority of the BRCA mutation carriers opt for breast cancer screening, which includes annual clinical breast examination, annual mammography, and annual contrast-enhanced magnetic resonance imaging of the breasts.4Y6 Besides clinical examination and surveillance, BRCA mutation carriers may benefit from monthly self-examination of the breasts.8 Earlier studies on the value of breast selfexamination (BSE) in the general population showed contradictory results.9Y12 Although BSE does not increase survival rates, and breast tumors can be detected in an earlier stage by imaging compared with self-breast examination,13 some study results showed that a significant proportion of
A
www.cns-journal.com
Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
E1
Feature Article breast tumors (41%Y57%) are still identified by patients themselves, either by coincidence or by BSE.13Y15 Besides that, BSE might be more effective in women with a BRCA mutation, because their tumors seem to be of a higher grade and are therefore more likely to develop between the moments of annual imaging.16Y18 Also, BSE may have a psychological benefit for women with a high risk of developing breast cancer. Breast selfexamination provides most women with a sense of control over their own health, even when they are aware of the lack of evidence for the effectiveness of BSE.19 Recommendations regarding BSE for BRCA mutation carriers differ among countries and even between institutions within countries.8,19Y21 Women with a BRCA mutation who have their yearly surveillance in the [Radboud university medical center] are taught to perform monthly BSEs, because there is no evidence against BSE for this patient population. Besides, our vision is that women should become aware of the normal structure of their breasts to be able to detect abnormal changes. In fact, BSE is advised as an additional strategy in the Dutch guideline on hereditary breast cancer8 and has been incorporated in surveillance protocols in the United States, Australia, and Europe that have been published recently.22Y24 Studies among BRCA mutation carriers showed that around 25% to 42% never perform BSE. Of those performing BSE, only 34% to 46% are doing this every month (which is necessary to become aware of abnormal changes).19,25 This indicates that 65% to 80% of the patients could improve BSE performance. In addition, BSE proficiency levels are poor in most women.26 These numbers underline the importance of education for this high-risk group. A study among BRCA mutation carriers showed that the most common reasons for not performing BSE are a negative attitude toward the value of BSE, difficulties in determining normal and abnormal changes in the breasts, a lack of knowledge and self-efficacy on how to perform BSE, fear or anxiety of finding abnormalities during BSE, and increased feelings of fear and anxiety about developing breast cancer.19 Interventions focusing on stimulation of BSE in healthy women showed beneficial effects on attitude, knowledge, and frequency of BSE.27Y33 However, little is known about the effect of BSE education among BRCA mutation carriers. Therefore, the aim of this study was to evaluate the feasibility of a BSE education intervention specially designed for BRCA mutation carriers. In designing the content of our BSE education, the Health Belief Model (HBM) was used as a basis. As indicated in this model, perceived susceptibility (belief of susceptibility to develop breast cancer) and perceived severity (belief of seriousness of breast cancer) are important factors in influencing health behavior, including BSE.31,34,35 BRCA mutation carriers generally score high on these factors, because they know they have an increased risk of breast cancer, and E2
most of them have at least 1 direct family member who has been confronted with the disease.25,36,37 Because previous studies focusing on screening behaviors showed that especially self-efficacy, perceived benefits, and perceived (emotional) barriers (expected difficulties in performing BSE) are strong predictors of BSE,34 our intervention will focus mainly on these concepts. Following the HBM, some women will need additional ‘‘cues to action’’ (internal or external prompts to stimulate BSE) as a final trigger to perform BSE.35,38 Until recently, all BRCA mutation carriers at outpatient clinics consulted medical specialists such as internists, medical oncologists, or surgeons. However, earlier studies showed that clinicians are generally more focused on medical issues, whereas nurse practitioners or clinical nurse specialists (CNSs) are more involved in patient education and psychosocial issues, also in cancer prevention and screening.39,40 In addition, the duration of an outpatient visit to a CNS is often longer and more frequent.41Y43 Clinical nurse specialists are able to provide both health promotion and maintenance through assessment, diagnosis, and management of acute and chronic patient problems. Compared with nurses, CNSs provide more consultant roles as expert clinicians, clinical leaders, educators, collaborators, and researchers.44,45 The consulting role is an essential part of the BRCA surveillance. Accordingly, performing the yearly surveillance of BRCA mutation carriers (including BSE education) at the outpatient clinic perfectly fits the role description of the CNS. CNS
