J Canc Educ (2011) 26:694–700 DOI 10.1007/s13187-011-0205-3
From Surviving to Thriving: A Health and Wellness Colloquium for Breast Cancer Survivors Mark Stoutenberg & Stacy Cutrono & Arlette C. Perry
Published online: 25 February 2011 # Springer 2011
Abstract Recent evidence demonstrates that exercise training can provide numerous physical and psychosocial benefits for breast cancer (BCa) survivors. However, educational training programs designed to disseminate exercise training information to survivors are scarce. The From Surviving to Thriving (FST) Colloquium was a oneand-a-half-day event that featured presentations on wellness topics from fitness and health to the latest research in nutrition and exercise. Attendees filled out demographic questionnaires and feedback surveys to assess the impact of the Colloquium. Overall, the FST Colloquium was well received by BCa survivors and health care providers (HCPs). The majority of BCa survivors (84.4%) and HCPs (93.3%) rated their Colloquium experience as very good. Prior to attending the Colloquium, only 8.9% of BCa survivors rated their self-perceived knowledge of exercise and nutrition as excellent. After participation in the Colloquium, this increased to 44.4%. The Colloquium was also successful in influencing planned and actual behavior changes in BCa survivors. Keywords Breast cancer . Survivorship . Education . Health . Wellness
M. Stoutenberg (*) : S. Cutrono Department of Epidemiology and Public Health, University of Miami Miller School of Medicine, 1120 NW 14th Street, Rm 1014, Miami, FL 33136, USA e-mail:
[email protected] M. Stoutenberg : S. Cutrono : A. C. Perry Department of Kinesiology and Sport Sciences, University of Miami, Coral Gables, FL, USA
Introduction Breast cancer (BCa) is one of the three most commonly diagnosed types of cancer in U.S. women, accounting for an estimated 26% of new cancer diagnoses in 2009 [1]. BCa survivors face unique health challenges as a result of adjuvant therapy, such as lymphedema, fatigue, premature menopause, lifestyle disruption, weight gain, and greater risk of psychological distress [2–5]. The majority of current BCa education programs focus on breast self-examination, early detection, and risk assessment [6–8], leaving a void of programs designed to focus on BCa survivorship. Evidence-based education programs for cancer survivors are limited in providing topics on self-image [9], virtual education [10], and awareness of community programs and issues [11]. Jahruas et al. [12] demonstrated that a three-session cancer education program, consisting of an interactive video, an individualized education session, and a structured group class, significantly increased BCa survivor perceived adequacy of knowledge. In Australia, the Breast Cancer Education course, a distance learning program designed to provide formalized psychosocial training for breast care nurses, improved levels of self-confidence in work related to BCa survivors and provided them with a better understanding of issues related to BCa [13]. Emerging evidence suggests that exercise programs initiated shortly after the completion of adjuvant therapy can result in improvements in aerobic fitness, muscle strength, and reduces fatigue during the initial stages of survivorship [3]. Increasing physical activity after diagnosis may improve survival rates [14] as women with moderate to high cardiorespiratory fitness demonstrated a 33% and 55% decrease in breast cancer mortality, respectively [15]. Additional benefits of regular exercise training during
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survivorship may include improvements in quality of life [16], reduction in fatigue [4], as well as other functional and psychological benefits for women undergoing cancer treatment [17, 18]. Overall, evidence of the health benefits of exercise training and proper nutrition, as a means of improving quality of life and restoring physical function, is accumulating, and a compelling body of evidence presents a strong case warranting greater importance and attention. Given these advances in research and the positive health benefits associated with increased levels of physical activity and exercise training, there is a growing need for developing easily accessible educational opportunities and training related specifically to the needs of the BCa survivor populations. Jalleh et al. [19] showed that a brief physical activity message could increase behavioral intention to exercise for the prevention of future BCa [19] and colon cancer [20]. However, there appear to be few other standardized educational programs designed to disseminate this information to health care providers (HCPs), caregivers, and BCa survivors. Therefore, the From Surviving to Thriving (FST) Colloquium was developed to address the need for better health and wellness education in BCa survivors and associated HCPs. The FST Colloquium was designed to educate HCPs and empower BCa survivors, from diagnosis onward, to make positive choices in their physical activity, nutrition, and lifestyle choices by featuring a range of speakers who presented practical approaches for improving fitness, functionality, daily life activities, and quality of life in BCa survivors.
Materials and Methods Development of the Colloquium The From Surviving to Thriving Colloquium was a community-based collaboration initiated by the Cancer Support Community (CSC; a national organization that provides services to adult cancer patients and their loved ones) of Miami. The local CSC organization (formerly known as The Wellness Community of Miami) was concerned about a lack of educational and programmatic guidance regarding exercise and wellness that was available to their group instructors and BCa survivors. They felt that their membership was not receiving current information on exercise, and that they could not provide adequate continuing education for their leaders and instructors. From this initial meeting, a partnership comprised of a leading local oncologist, the Komen Miami-Ft. Lauderdale Affiliate, the University of Miami (UM) Sylvester Comprehensive Cancer Center, and the UM Department of Kinesiology and Sport Sciences evolved. Together, this newly developed
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leadership board determined that the goal of FST should be to provide BCa survivors and HCPs with the most up to date information regarding BCa, physical fitness, health, and wellness. Topics presented to the FST attendees included functional training, nutrition, information pertaining to current exercise, wellness and BCa research, physical therapy for lymphedema, Lebed method demonstrations, participation in team sports (i.e., Dragon Boat racing), and success in returning to public exercising. Program Evaluation Demographics FST Colloquium attendees were asked to fill out anonymous questionnaires at the event registration for the purpose of determining the participant demographics. The BCa survivor demographic questionnaire contained general demographic questions regarding age, race/ethnicity, employment and insurance status. The HCP demographic questionnaire also included age and race/ethnicity information, with additional questions on occupation, place of employment, and years of contact with BCa survivors. Event Evaluation FST Colloquium attendees were asked to complete a brief questionnaire to determine BCa survivor and HCP baseline self-perceived knowledge of exercise, nutrition, and wellness and to assess the short-term efficacy of the Colloquium in increasing self-perceived knowledge and promoting planned future behavior change. Separate questionnaires were developed for BCa survivors and HCPs and were circulated during the final afternoon of the Colloquium. Attendee questionnaires were numerically coded so their responses could be linked during follow-up procedures. The specific areas explored in the questionnaires, Colloquium feedback and evaluation, knowledge acquisition, and planned behavior change, are described below. Colloquium Feedback and Evaluation Using five-point Likert scales, all FST attendees were asked to (1) rate their overall experience at the Colloquium (“1”=very good to “5”=very poor) and (2) indicate the level of agreement with the perceived usefulness of FST information (“1”=strongly agree to “5”=strongly disagree). BCa survivors were asked to (1) indicate the importance of specific health and exercise-related topics in their lives and (2) rate the effectiveness of the Colloquium at addressing these topics (“1”=excellent to “5”=very poor). HCPs were asked a similar set of questions related to how the health and wellness-related topics may influence their work with BCa patients. Knowledge Acquisition Using a five-point Likert scale, all attendees were asked to rate their knowledge of exercise
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and nutrition before and after attending the Colloquium (“1”=excellent to “5”=extremely poor).
Table 1 Demographic information of the participants
Planned Behavior Change Using five-point Likert scales, all attendees were asked to rate the importance of exercise to them (BCa survivors) or to their work with BCa patients (HCPs) prior to attending the Colloquium (“1”=very important to “5”=not important at all). BCa survivors were asked to indicate the degree to which they agreed with three exercise and nutrition-related planned behavior change statements (Table 2). HCPs were asked to indicate: (1) how frequently they emphasized exercise and nutrition to their patients and (2) how likely they were to use the Colloquium information in their practice.
Characteristic
Colloquium Follow-Up To assess the impact of the Colloquium on the exercise and nutrition practices of attendees, a follow-up survey was developed using SurveyMonkey. A link to the survey was emailed to all attendees 2 months after the conclusion of the FST Colloquium. BCa survivors were asked to indicate the current importance of exercise, rate their current knowledge of exercise and nutrition, and indicate the level to which they agreed with actual behavior change statements. HCPs were also asked to rate their current knowledge of exercise and nutrition as it related to breast cancer. Additionally, HCPs were asked to indicate how frequently they now emphasized exercise and nutrition to their BCa patients and how often they used Colloquium information in their practice.
Demographics
Race/ethnicity Caucasian African American/Black Hispanic Asian White Hispanic Age 20–29 years 30–39 years 40–49 years 50–59 years 60–69 years 70+years Age at diagnosis 20–29 years 30–39 years 40–49 years 50–59 years 60–69 years 70+years Employment Full-time Part-time No employment Insurance Yes No
BCa survivors n (%)
26 10 19 2 2
(44.1) (16.9) (32.2) (3.4) (3.4)
HCPs n (%)
5 4 4 2 2
(29.4) (23.5) (23.5) (11.8) (11.8)
0 (0) 2 (3.4) 23 (39.0)
1 (5.6) 2 (11.1) 5 (27.8)
19 (32.2) 14 (23.7) 1 (1.7)
7 (38.9) 3 (16.7) 0 (0)
(3.4) (15.5) (43.1) (31.0) (6.9) (0)
– – – – – –
33 (55.9) 9 (15.3) 17 (28.8)
– – –
54 (93.1) 4 (6.9)
– –
2 9 25 18 4 0
Results Demographics A total of 82 participants attended the oneand-a-half-day event, and of these, a total of 80 provided demographic information at registration (Table 1). Of the FST attendees, a majority were BCa survivors (70%), with the remaining attendees composed of HCPs (15%), family members/caregivers (2%), and other/unclassified (6%). Several attendees classified themselves as both BCa survivors and HCPs (7%). The average age of BCa survivors was 52 years (range, 32–73), and their average age at diagnosis was 47 years (range, 26–66). Further information on race, ethnicity, age distribution, as well as employment and insurance status, of the FST Colloquium attendees is presented in Table 1. Event Evaluation A total of 45 FST Colloquium feedback surveys were received from the BCa survivors, and 17 were received from HCPs at the conclusion of the FST Colloquium. Of those who responded, 84.4% of the BCa
survivors and 93.3% of HCPs rated their Colloquium experience as very good. The majority of the BCa survivors (75.6%) and HCPs (80%) strongly agreed that the FST Colloquium information was useful to them. Survivor Feedback Prior to the FST Colloquium, 51.1% of BCa survivors indicated that exercise played a very important role in their life. In regard to the importance of specific health and exercise-related topics, BCa survivors indicated that nutrition (93.2%), current research (86.7%), strength training (79.5%), and aerobic exercise (75.6%) were very important to them (Fig. 1). Prior to attending the Colloquium, 8.9% of BCa survivors rated their selfperceived knowledge of exercise and nutrition as excellent. After attending the Colloquium, 44.4% of the BCa survivors rated their self-perceived knowledge as excellent (Fig. 2). The results for planned behavior change as a result of the FST Colloquium are displayed in Table 2.
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Fig. 1 Difference in “very important” ranking of health topics
HCP Feedback Of the HCPs who responded, 86.7% believed that issues related to exercise and nutrition were very important to their work with BCa survivors. In regard to the importance of specific health and exercise-related topics, HCPs indicated that nutrition (88.2%), aerobic Fig. 2 Self-perceived knowledge of exercise and nutrition of BCa survivors (a) and HCPs (b)
exercise (76.5%), sexuality (76.5%), and lymphedema (75%) were very important to their work with BCa survivors. Prior to attending the Colloquium, 13.3% of HCPs rated their knowledge of exercise and nutrition as excellent. After attending the Colloquium, 73.3% of HCPs
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Table 2 Planned and actual behavior changes in BCa survivors Statement
Strongly agree n (%)
Agree n (%)
No opinion n (%)
Disagree n (%)
Strongly disagree n (%)
Planned behavior change in BCa survivors (N =45) I plan on making changes to my daily physical activity.
31 (68.9)
12 (26.7)
2 (4.4)
0 (0)
0 (0)
I plan on making changes to my exercise training.
33 (73.3)
10 (22.2)
2 (4.4)
0 (0)
0 (0)
I plan on making changes to my nutritional habits.
33 (73.3)
9 (20.0)
2 (4.4)
1 (2.2)
0 (0)
Actual behavior change in BCa survivors (N=18) I made changes to my daily physical activity since attending the colloquium.
7 (38.9)
6 (33.3)
3 (16.7)
1 (5.6)
1 (5.6)
I made changes to my exercise training since attending the colloquium.
6 (33.3)
6 (33.3)
3 (16.7)
2 (11.1)
1 (5.6)
I made changes to my nutritional habits since attending the colloquium.
5 (27.8)
11 (61.1)
0 (0)
2 (11.1)
0 (0)
rated their knowledge as excellent (Fig. 2). Of the 15 HCPs that responded, 66.7% answered that they always emphasized exercise and nutrition in their work with BCa cancer survivors. At the conclusion of the FST Colloquium, 93.3% of HCPs reported that they were very likely to use the information provided to them in their practice. Colloquium Follow-Up Two months after the Colloquium, 18 and 3 follow-up responses were received from BCa survivors and HCPs, respectively. When asked about the importance of exercise, 94.5% of the BCa survivors indicated that exercise remained very important (77.8%) or important (16.7%) to them (see Fig. 1). Two months after the Colloquium, 16.7% of BCa survivors rated their current knowledge of exercise and nutrition as excellent. The results for actual behavior changes in BCa survivors as a result of the FST Colloquium are listed in Table 2. Due to the small number of follow-up surveys completed by HCPs, few definitive conclusions can be made regarding the long-term impact of the Colloquium on their work with BCa survivors, and these results are not displayed.
Discussion There is little doubt regarding the importance of physical activity in BCa survivorship [14]. Increased levels of physical activity after diagnosis may reduce the risk of death from disease, decrease the risk of adverse BCa outcomes, improve hormonal function, decrease circulating levels of androgens and estrogens, and improve insulin resistance. However, disseminating this information and providing appropriate guidance to BCa survivors and HCPs have not been actively pursued in the past. The FST Colloquium was designed to address exercise, nutrition, and
well-being as it relates specifically to BCa survivorship. Through the integration of physical fitness and nutrition into the lifestyle of BCa survivors, the FST Colloquium took the first step in providing information to advance the care and treatment of BCa survivors in the South Florida community. Overall, the FST Colloquium was very well received by attendees as demonstrated by the participant feedback surveys. Additionally, it appeared that the Colloquium was successful in achieving the desired short-term impact in improving self-perceived knowledge of exercise and nutrition (Fig. 2) while motivating BCa survivors to engage in positive lifestyle behavior changes (Table 2). Although short-term in nature, this is an important effect when taking into account the findings of Weiner et al. [21] who showed that a substantial proportion of the BCa survivors in their cohort were unaware of the therapeutic benefits of diet and exercise on cancer recurrence. He also found that nearly one third of their respondents did not believe that increased fruit and vegetable intake could reduce the chance of BCa recurrence. Long-term follow-up of the BCa survivors revealed that exercise remained an important part of their lives when compared to pre-Colloquium levels. Of the responding BCa survivors, more than two thirds either strongly agreed or agreed that they had followed through and made positive changes to their exercising training (67%), physical activity levels (72%), and nutritional habits (89%). This follow-up rate compares favorably to that of Weiner et al. [21] who found that of those who believed in the preventive benefits of diet and exercise on cancer reoccurrence, less than half met daily ACS recommendations. This indicates that while long-term behavior change was positively impacted in BCa survivors, continued, ongoing efforts (i.e., booster sessions, community-based programs) may be necessary to facilitate and support planned behavior change. Similar to BCa survivors, HCPs indicated that although they believed issues related to exercise and nutrition were
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very important in their work with BCa survivors, only two thirds of attending HCPs reported emphasizing exercise and nutrition in their work with BCa survivors. To that end, the FST Colloquium proved to be extremely successful in raising HCPs’ self-perceived knowledge and increasing HCPs’ intention to apply information learned at the Colloquium to their daily practice. Gabram et al. [22] suggested that while primary care physicians and surgeons are interested in identifying and treating high-risk patients, they often lack sufficient, current knowledge to do so with confidence. Evidence-based educational programs, such as the FST Colloquium, may be crucial in empowering HCPs to provide current information and influencing their future practices. FST participants also rated the importance of topics presented at the Colloquium (Fig. 1). Feedback surveys indicated that BCa survivors favored presentations on current research and strength training, while the HCPs placed greater importance on information related to lymphedema and issues surrounding sexuality. It is likely that BCa survivors who attended the FST Colloquium are representative of survivors who are actively involved in the survivorship process (i.e., seeking out BCa-related events) and found greater interest in topics (research and strength training) to which they are not typically exposed. On the other hand, the HCPs likely work with a broader-based population of BCa survivors, many of whom may not be as active in the survivorship process, and therefore preferred information on more common topics (i.e., dealing with lymphedema). Therefore, it may be advantageous for future educational programs to perform a needs assessment of their target community to help guide the vision, educational goals, and direction of their event. While exercise training is considered a crucial component in the treatment of many chronic diseases, its role in oncological rehabilitation and in survivorship has thus far been underutilized. The only specific educational training offered for BCa professionals is limited to early detection programs. The American College of Sports Medicine (ACSM) has just recently begun offering the first nationally recognized certification program for exercise in cancer patients—the Certified Cancer Exercise Trainer. This, combined with the recent release of the ACSM Exercise Guidelines for Cancer Survivors [23], provides an ideal opportunity for more widespread dissemination of current information on health promotion and wellness recommendations for the BCa population.
survivors and its influence on the work of HCPs. Future efforts must take into consideration, as part of the planning process, not only short-term event feedback but the methods of increasing adherence to follow-up evaluations, tracking the long-term impact these educational programs may have on attendees. Additionally, greater effort and attention must be given towards the recruitment of HCPs. Local HCPs have the greatest ability to disseminate information on a daily basis to a large number of BCa survivors, yet this proved to be the most difficult group to recruit to the FST Colloquium. Therefore, future efforts should place greater emphasis on recruiting and engaging HCPs in future wellness education efforts. It is likely that, in order to attract greater numbers of HCPs, continuing education credits must be offered as compensation for their time commitment and participation.
Limitations
Results indicate that the FST Colloquium was successful in its goal to provide current, evidence-based information regarding concepts of health and well-being, exercise, and nutrition to the South Florida BCa community.
One of the primary limitations to the FST Colloquium was our inability to determine the long-term impact on BCa
Future Directions While it is common to see multidisciplinary cancer conferences [24, 25] bringing together physicians, caregivers, and cancer survivors in an attempt to empower survivors and provide ongoing cancer education, there are few published efforts examining similar conferences targeting health and well-being, exercise, and nutrition in BCa survivorship. As suggested elsewhere [21], future dissemination efforts should center on the primary questions of (1) how can we better educate this population? and (2) how can we better effect future behavior change? In effecting future behavior change, there remains the challenge of helping BCa survivors overcome the daily barriers to physical activity participation that extend beyond their respective survivorship issues (i.e., returning to work, lack of time and energy, and the demands of daily living). If a large portion of the apparently healthy American population is not currently meeting physical activity recommendations, it is likely that many of these same barriers exist among BCa survivors, making it difficult for them to apply the information they have learned. Therefore, not only are future educational efforts essential, but implementation procedures and follow-up programs are equally important. The ability to provide outreach efforts that offer ongoing guidance, instruction, and motivation for continued, long-term maintenance of physical well-being remains a critical issue for BCa survivors.
Conclusion
700 Acknowledgements The authors wish to thank the FST Colloquium attendees for their participation, as well as Dr. Peggy Rios of the Cancer Support Community, Bobbi Meyers, Elizabeth and David Edwards, and Chantis Mantilla for their time and effort in assisting with the Colloquium. The FST Colloquium was supported by grants from the Komen Miami-Ft. Lauderdale Affiliate and the Macy’s Foundation.
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