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UBC Theses and Dissertations

Post-treatment exercise counseling and programming preferences of women living with breast cancer Askwith, Bryn Catherine 2007

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P O S T - T R E A T M E N T E X E R C I S E C O U N S E L I N G A N D P R O G R A M M I N G P R E F E R E N C E S OF W O M L I V I N G W I T H B R E A S T C A N C E R by Bryn Catherine Askwith B.A., York University, 2000 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF T H E REQUIREMENTS FOR T H E DEGREE OF M A S T E R OF SCIENCE in T H E F A C U L T Y OF G R A D U A T E STUDIES (REHABILITATION SCIENCES) T H E UNIVERSITY OF BRITISH COLUMBIA March 2007 © Bryn Catherine Askwith, 2007 A B S T R A C T Background: The 5-year overall survival rate for women with early detected breast cancer is 87%. Many of these women, however, live with physical and psychosocial sequelae from breast cancer and its treatments. Health care needs of this growing population have fueled research on cancer survivorship including interventions, such as exercise, that can lead to improved quality of life (QOL). Nevertheless, despite demonstrated physical, mental and QOL benefits of exercise among persons with breast cancer, low levels of adoption and adherence remain a reality. Study A i m : The purpose of this descriptive study was to identify the exercise counseling and programming preferences of women who have completed treatments for breast cancer in British Columbia (BC). Methods: A self-administered questionnaire (SAQ) was mailed to 472 randomly selected women living with stage 0,1, II or III breast cancer, greater than 3 months post-treatment. The 54-item questionnaire identified exercise behaviours, counseling and programming preferences, demographic and medical variables. Descriptive statistics were used to analyze study data. Results: Overall, 70% of participants preferred or maybe preferred to receive exercise counseling at some point during their cancer experience. The majority of respondents preferred to receive exercise counseling face to face (87%), from an exercise specialist affiliated with a cancer centre (60%). As for exercise program preferences, the greatest number of respondents preferred walking (46%), at a moderate-intensity (66%), outdoors (33%). Sixty-three percent of participants were interested or maybe interested in regularly attending (at least 3 times/week) an exercise program for women living with breast cancer. Discussion and Conclusions: Although a majority of respondents were interested in some type of exercise, results from this study indicate that women living with breast cancer who are post-treatment have unique exercise preferences. Accounting for these preferences when creating and prescribing exercise programs for women living with breast cancer may result in increased adoption and long-term adherence. Preferences to receive in-person exercise counseling and to begin a moderate-intensity exercise program following treatment offer a realistic starting point for women to adopt a lifelong pattern of exercise. Implications for cancer care professionals are explored and recommendations are provided for future research. iii TABLE OF CONTENTS ABSTRACT ii TABLE OF CONTENTS iv LIST OF TABLES vii LIST OF FIGURES viii LIST OF ABBREVIATIONS ix GLOSSARY OF TERMS x ACKNOWLEDGEMENTS xii 1 INTRODUCTION 1 1.1 Statement of the Research Problem 1 1.2 Study Aim, Research Questions and Rationale 4 1.2.1 Study Aim 4 1.2.2 Research Questions 5 1.2.3 Rationale 5 2 REVIEW OF THE LITERATURE 7 2.1 Breast Cancer: Incidence, Mortality and Economic Burden 7 2.2 Breast Cancer Treatment and Survivorship 8 2.2.1 Breast Cancer Treatment 8 2.2.2 Breast Cancer Survivorship 9 2.3 Exercise for Women Living with Breast Cancer 11 2.3.1 Exercise Adoption and Adherence 13 2.4 Theoretical Framework 14 2.5 Exercise Preferences in Other Patient Populations 15 2.6 Conclusions 16 3 STUDY DESIGN AND METHODS 18 3.1 Study Design 18 3.2 Participant Recruitment & Sampling Procedures 18 3.2.1 Study Participants 18 3.2.2 Sampling Technique 19 3.2.3 Sample Size 19 i v 3.3 Instrumentation (Questionnaire) 20 3.4 Ethical Considerations 22 3.5 Reliability and Validity 22 . 3.6 Data Collection 24 3.6.1 Procedures 24 3.6.2 Strengths and Limitations of Data Collection Methods 25 3.7 Data Management, Analysis and Distribution 26 4 RESULTS 28 4.1 Participant Demographic and Medical Characteristics 28 4.2 Exercise Counseling Preferences 29 4.3 Exercise Programming Preferences 30 4.4 Types of Exercise Reported Among BC Women Living with Breast Cancer 30 4.5 Factors that Affect Exercise Adoption and Adherence 32 5 DISCUSSION 34 5.1 Background Discussion 34 5.2 Exercise Counseling Preferences 35 5.3 Exercise Programming Preferences 37 5.4 Types of Exercise Utilized by BC Women Living with Breast Cancer 39 5.5 Factors That Affect Exercise Adoption and Adherence 40 5.6 Theoretical Framework 40 5.7 Study Limitations 42 5.8 Implications 43 5.9 Future Research 44 6 CONCLUSIONS 45 REFERENCES 47 TABLES 54 FIGURES 75 APPENDICES 78 Appendix A Letter of Permission to Replicate Exercise Preferences Study 78 From Original Authors Appendix B Self-Administered Questionnaire 79 Appendix C Sample Size Calculation 91 v Appendix D Table of Specifications 92 Appendix E University of British Columbia Behavioural Ethics Review 94 Board Certificate of Approval Appendix F Pilot Test Recruitment Advertisement .. ...95 Appendix G Questionnaire Cover Letter 96 Appendix H Participant Reminder Postcard 99 vi LIST O F T A B L E S Table 2.1 Literature Summary: Studies Reporting on Exercise After Breast Cancer Treatment [1991-2006] 54 Table 3.1 Results from Multiple Sample Size Calculations 61 Table 3.2 Revisions to SAQ Items Based on Analysis of Pilot Data and Participant Feedback 62 Table 4.1 Demographic and Medical Characteristics of Study Participants 64 Table 4.2 Descriptive Statistics for Exercise Counseling Preferences 66 Table 4.3 Descriptive Statistics for Exercise Programming Preferences 67 Table 4.4 Summary of Codes for Thematic Analysis Illustrating Participants' Interest in Regularly Attending a Local Exercise Program for Women Living with Breast Cancer 69 Table 4.5 Summary of Codes for Thematic Analysis Illustrating Participants' Disinterest in Regularly Attending a Local Exercise Program for Women Living with Breast Cancer 70 Table 4.6 Exercise Behaviours of Participants Before Breast Cancer Diagnosis, During and After Treatment 71 Table 4.7 Descriptive Statistics for Participants' Opinions on Factors that Affect Exercise Adoption and Adherence 73 vii LIST OF FIGURES Figure 2.1 Literature Review Floe Chart: Publications Specific to Exercise And Breast Cancer Survivors 75 Figure 4.1 Flow Chart: Response Rate Summary 76 Figure 4.2 Summary of Most Common Exercise Activities Utilized by BC Women Living with Breast Cancer (Post-Treatment) 77 viii LIST OF A B B R E V I A T I O N S A C S M - American College of Sports Medicine BC - British Columbia B C C A - British Columbia Cancer Agency CBCF- Canadian Breast Cancer Foundation CCS - Canadian Cancer Society MIE - Moderate intensity exercise n - Sample size OCS - Office of Cancer Survivorship QOL-Qual i ty of life SD - Standard deviation SIE - Strenuous intensity exercise U B C - University of British Columbia U B C BREB - University of British Columbia Behavioural Ethics Review Board GLOSSARY OF TERMS Breast Cancer: the uncontrolled division and growth of abnormal breast cells originating in the breast tissue. Almost all breast cancers start in the glandular tissue of the breast and are known as adenocarcinomas. Cancer cells may start within the milk ducts (ductal carcinoma) or lobules (lobular carcinoma). Ductal carcinoma is the most common type of breast cancer.1 Exercise: Defined by Bouchard and Shephard as a form of leisure-time physical activity that is usually performed on a repeated basis over an expended period of time with the intension of improving fitness performance or health. Exercise counseling: consultation regarding various aspects of structured and repetitive physical activity (i.e. modality, intensity, etc.). Exercise programs: structured, planned systems of physical activity designed to maintain or improve fitness and health. Exercise preference: one's choice to value an aspect of physical activity (e.g., location, modality, etc.) more than another. Physical Activity: Defined by Bouchard and Shephard as any bodily movement produced by the skeletal muscles resulting in a substantial increase in energy expenditure over resting levels.2 Quality of Life (QOL): a multi-dimensional construct comprised of one's physical, emotional, economic and spiritual well-being.3 Regular Exercise: Defined by Jones and Courneya as any physical activity done at least 3 times per week, for > 20 minutes, at moderate intensity with the intention of improving physical fitness and health.4 This definition is similar to that from the A C S M guidelines x which recommend activity on most days of the week, at moderate levels of intensity for 30 minutes per day.5 Women Living with Breast Cancer: Individuals, who from the time of diagnosis onward, experience the physical, psychosocial and economic sequelae of cancer and its treatments. References 1. Canadian Cancer Statistics 2005, Canadian Cancer Society, Retrieved October 7, 2006 from http://www.cancer.ca/ccs/internet/html. 1-110. 2. Bouchard C, Shephard RJ. Physical activity, fitness and health: the model and key concepts. In: Quinney HA, Gauvin L, Wall A E , editors. Physical activity, fitness and health: international proceedings and consensus statement. Champaign, IL: Human Kinetics; 1994. p.77-88. 3. Courneya KS, Hellsten L M . Personality correlates of exercise behaviour, motives, barriers, and preferences: an application of the five-factor model. Pers Individ Dif. 1998;24:625-633. 4. Jones LW, Courneya KS. Exercise counseling and programming preferences of cancer survivors. Cancer Pract. 2002; 10:208-215. 5. Mahler DA, Froelicher VF, Huston Miller N , York TD. ACSM's Guidelines for Exercise Tesing and Prescription. 5 l h ed. Media, PA: Williams and Wilkins, 1995. XI A C K N O W L E D G E M E N T S There are many people I would like to thank and to whom I express my deepest gratitude for their assistance throughout my graduate experience. I would like to acknowledge the guidance of my supervisory committee Dr. Susan R. Harris, Dr. Catherine Backman, Dr. T. Gregory Hislop and Dr. Charmaine Kim-Sing. Your support and mentorship were much appreciated. I would especially like to thank Dr. Susan R. Harris for her continual support and encouragement throughout the completion of this thesis. Your passion for scholarly research, incredible work ethic and zest for life have inspired me, as well as contributed to the enjoyment of my academic journey. A big thank-you goes to the respondents who volunteered to participate in this study, for without your involvement this research would not have been possible. Thank you to the graduate students, faculty, and staff, of the School of Rehabilitation Sciences. To Dr. Sunita Mathur and Jocelyn Harris, PhD (candidate), MSc, thank you for your consulting services, friendship and ongoing support. Outside of the School of Rehabilitation Sciences, I would like to thank Dr. Susan Cox for introducing me to another realm in the wonderful world of research. Working for you on your qualitative study was a pleasure. To my mother (Audrey) and Ed, thank you for continually supporting my journey, I know you share in my joy of reaching this goal. Most importantly, I would like to thank my husband Kevin. It is hard to be brief as you have given me so much! For your endless support and encouragement, your ability to make me laugh, for reminding me of the importance of balance and for all of your culinary efforts, I am incredibly grateful and will forever value these gifts. Here's to evenings and weekends! Xll 1 I N T R O D U C T I O N 1.1 Statement of the Research Problem Breast cancer is the most frequently diagnosed cancer among Canadian women.1 Despite increased incidence rates, the prospects for surviving the disease have never been better. According to the Canadian Cancer Society (CCS), mortality rates for breast cancer over the last decade have been declining at a constant rate (approximately 2.7% annually) and currently are the lowest since 1950.1 A recent estimate of the 5-year relative survival rate for early detected breast cancer is 87%, demonstrating that a greater number of individuals are surviving the disease.1 Such dramatic increases in individuals living with, through and beyond breast cancer have fueled research on issues of cancer survivorship. In the province of British Columbia (BC), increased survival rates following breast cancer have resulted in more than 32,000 women living with breast cancer who continue to face the physical, psychosocial and economic sequelae that result from cancer and its treatments.1 Negative physical and psychosocial side-effects including muscular atrophy, decreased range of motion, lowered aerobic capacity, decreased strength, nausea, fatigue, depression, anxiety, pain, decreased self-esteem, adverse effects on heart function and increased body weight are commonly experienced both during and following treatment.3"6 In addition to such challenges, survivorship comes with the increased risk of disease recurrence, secondary illness (cardiovascular disease, diabetes, etc.), financial burden (employment loss, medication costs), and decreased quality of life (QOL). 7 In an attempt to ameliorate such sequelae and meet the health care needs of this growing population, research investigating QOL interventions, including exercise, for women living with breast cancer has attracted increasing interest. 1 Evidence promoting exercise as a positive intervention both during and following treatment continues to grow.3'8"" Since the early-1990's, the effects of exercise in persons with breast cancer have been examined and reported in 51 published studies. Twenty-seven of these studies examined exercise after breast cancer treatment, 11 of which used 8 12 21 22 32 observational designs, ' 11 tested interventions " and five examined exercise in conjunction with other interventions such as diet and cognitive therapy (see Chapter 2, Figure 2.1). Both biologic and psychosocial improvements after participation in exercise programs were reported in over half of these post-treatment studies. ' " ' ' Research suggests that exercise can be an effective therapy for women living with breast cancer by helping blunt some of the side-effects associated with the disease and its treatment.33 Despite demonstrated health benefits of regular exercise among women living with breast cancer, low rates of participation, adoption and adherence have been identified as challenges.3'6'9"1 1'1 6'3 4"3 7 Segal et al. suggested that many women tend to stop most physical activity during cancer treatment.3 In Alberta, only 16% of cancer survivors (52% of whom o had breast cancer) reported regular exercise during the treatment process. Findings from a more recent study in the U.S. indicated that the participants were significantly less physically active within the first 12 months following their diagnosis with breast cancer compared to 1 year before being diagnosed. These studies indicate that regular exercise participation remains a challenge among breast cancer survivors, regardless of its evidence as a physically safe and important contributor to QOL. Studies examining exercise both during and after breast cancer treatment suggest beneficial effects in both physical and psychosocial domains.""1 2 , 3 3"3 4 However, the effectiveness of exercise, and its resultant benefits, are contingent upon regular participation. 2 The American College of Sports Medicine (ACSM) has focused on increasing exercise levels among sedentary populations, including older adults and those with chronic illness.3 9"4 0 Regular exercise participation at moderate levels of intensity for 30 minutes per day, on most days of the week, has been shown to produce health benefits.39"40 For persons with cancer who were sedentary prior to diagnosis and treatment, these recommendations provide a starting point for adopting a lifelong pattern of exercise. Research by Courneya and colleagues showed that the strongest correlates of exercise adherence in persons living with cancer were social-cognitive variables (e.g., attitudes, preferences, beliefs, etc.).16 Their findings also suggested that tailoring exercise to the needs and preferences of a target population can increase both program adoption and adherence.16 In a 2002 report of a survey of persons living with cancer (including those with breast cancer) in Alberta, Jones and Courneya examined their exercise program and counseling preferences.16 Proportional results from this survey exceeded 100% because respondents could choose multiple preferences. Results showed that 56% of respondents preferred moderate-intensity exercise, 40% preferred home exercise programs and 98% preferred recreational activities. Eighty-four percent of subjects preferred to be counseled about exercise at some point during their cancer experience. Most preferred face-to-face counseling (85%), from an exercise specialist associated with a cancer centre (77%). Researchers concluded that understanding the major behavioural determinants of exercise, after cancer diagnosis, is critical to the development of effective interventions for cancer survivors.1 6'3 5 Studies yielding similar results have been carried out among other cancer survivor groups (e.g., non-Hodgkin's lymphoma and endometrial cancer survivors), cardiac patients, 3 persons with arthritis, and sedentary healthy adults.41"46 A key finding in these studies was the variability of exercise preferences based on demographic, medical and exercise variables. Hence, the generalizability of these results to other populations was not possible. To date, no published studies have assessed current exercise counseling and programming preferences of women who have completed treatment for breast cancer in BC. While much of the current research focuses on examining exercise interventions leading to improved physical and psychological functioning, little research has been directed toward identifying, describing and translating the attitudes and preferences of women living with breast cancer. As researchers and clinicians continue to develop and test exercise interventions for women living with breast cancer, data about these women's exercise program and counseling preferences could inform future studies and program design. Results of the present study will be useful for medical professionals, exercise researchers, and rehabilitation and fitness professionals who provide exercise counseling or prescription to improve the daily living, working capacity and QOL of women living with breast cancer. Based on the lack of existing information about exercise preferences of women living with breast cancer in BC, the following study aim and research questions were developed. 1.2 Study Aim, Research Questions and Rationale 1.2.1 Study Aim The aim of this descriptive study was to assess the exercise preferences of women living with breast cancer following completion of treatment in BC. A survey was used to identify exercise counseling and programming preferences of this group. 4 1.2.2 Research Questions Primary research questions investigated in the study were: 1) what are the exercise counseling preferences of BC women living with breast cancer following completion of cancer treatments; and 2) what are the exercise program preferences of BC women living with breast cancer following completion of cancer treatments? Secondary research questions were: 1) what types of exercise are utilized by BC women living with breast cancer; and 2) what aspects of physical activity, (e.g., cost, safety) make exercise adoption and adherence easier among these women? 1.2.3 Rationale The number of women living with breast cancer in Canada is on the rise, leading to an increasing need to develop and implement interventions to ameliorate disease-specific and treatment-related side effects. Research involving exercise and breast cancer has shown that: • Obesity in post-menopausal women with breast cancer leads to increased recurrence risk and an increased risk of dying from the disease;1 5 4 7 • Exercise may decrease recurrence risk and mortality from the disease in women living with breast cancer;15 • Many long term physical and psychosocial side-effects of breast cancer and its treatments can be decreased through regular exercise participation. 1 1 3 3 , 4 8 As previously indicated, despite increasing recognition for exercise as a positive intervention,3'8'9"11 participation and adherence levels among women with breast cancer remain challenges. Accounting for exercise preferences when creating and prescribing exercise programs may result in increased uptake and long-term maintenance of exercise,16 5 as suggested by studies of individuals with cardiac health concerns, diabetes, and healthy older women.4 9"5 2 These findings reinforce the need to examine the exercise counseling and programming preferences of women living with breast cancer in BC. 6 2 REVIEW OF THE LITERATURE This chapter provides a summary of relevant literature. The initial section describes current knowledge about breast cancer, including incidence, mortality, and the economic burden of the disease in Canada. In addition, literature about breast cancer treatment and survivorship is presented. The third section reviews literature focused on exercise and breast cancer survivors. Current information concerning attitudes towards and motivation to exercise, as well as theoretical frameworks are discussed. The chapter concludes by examining similar research among persons with other chronic diseases (e.g., heart disease, diabetes) and identifies both trends and gaps within the current literature on persons living with breast cancer following treatment. 2.1 Breast Cancer: Incidence, Mortality and Economic Burden Breast cancer is the most frequently diagnosed cancer among Canadian women.1 The Canadian Breast Cancer Foundation (CBCF) reported that one in nine Canadian women will develop breast cancer in her lifetime.53 While incidence rates for the disease have stabilized since 1993, it is estimated that there will be 22,200 new cases of breast cancer in Canada this year, 2700 in BC. 1 Reports from the Canadian Cancer Society indicate that 5300 Canadian women will die in 2007 from breast cancer, with 630 of those deaths in B C . 1 On a positive note, mortality rates for breast cancer have gradually declined since the early 1990's (at a rate of 2.7% per year) and survival rates for the disease have never been better. " The decreasing mortality rates are believed to be due to advances in medical technology (e.g., better screening) and treatments.1'54 These data suggest that the number of women surviving breast 7 cancer and living with the physical, psychosocial and economic sequelae of the disease and its treatments, is on the rise. While the economic burden of breast cancer alone has not been calculated, the direct and indirect costs (in Canada) of all cancers combined was estimated to be $14.2 billion in 1998, the most recent figure.' Direct costs (e.g., physician services, hospital care, drugs, other healthcare professionals, research) of $2.5 billion, in conjunction with indirect costs (e.g., mortality and morbidity costs) of $11.8 billion, ranked cancer as the third most economically burdening disease in Canada, behind cardiovascular and musculoskeletal diseases.1 2.2 Breast Cancer Treatment and Survivorship 2.2.1 Breast Cancer Treatment Surgery, chemotherapy, hormone therapy and radiation therapy are the most common treatments for breast cancer and the type of treatment to be offered is determined by the stage of disease. Surgery, often the first step in intervention, is used to both diagnose and treat breast cancer. Surgery is used to remove tumours, reduce the size of large tumours to enhance the success of follow-up modalities (e.g., radiation, chemotherapy or drugs), and to remove axillary lymph nodes to identify the stage of the disease for diagnostic and prognostic purposes.55 Chemotherapy, a cytotoxic drug treatment, is used to kill cancer cells in the body (typically in women with Stage II disease or higher). A l l types of chemotherapy have the potential for deleterious side-effects.56 Hormone therapy uses drugs (e.g., tamoxifen) to prevent the growth, spread or recurrence of breast cancer in women with estrogen-dependent tumours. As with other systemic treatments, side effects are common. Biologic therapies use various drugs (e.g. remicade) to influence the body's defense mechanisms to act against 8 cancer cells or enhance the effects of other drugs.2 Although better tolerated by some women with breast cancer, side-effects often result. Lastly, radiation therapy uses high-energy rays to shrink or kill tumour cells directly or by interfering with cell reproduction.55 As stated above, treatment for individuals diagnosed with breast cancer in BC varies depending on tumour location, stage of the disease at diagnosis and guidelines from the BC Cancer Agency (BCCA) . 5 5 These conventional treatments can extend life, as persons with breast cancer often respond well to these therapies.55 Nevertheless, the implications of breast cancer treatments on QOL can be significant. Side-effects commonly experienced during and after treatment for breast cancer include decreased shoulder range of motion, nausea, fatigue, depression, pain, numbness, lymphedema, decreased self-esteem, and increased body 3 6 58 weight. " ' Consequently, the treatment process may take a toll on the physical, psychosocial and spiritual well-being of women living with breast cancer. 2.2.2 Breast Cancer Survivorship As advances continue in breast cancer detection and treatment, the number of individuals surviving the disease continues to grow, fueling the need for research in the area of cancer survivorship. According to Mullan, a cancer survivor is anyone who has received a cancer diagnosis, from the time of diagnosis to the end of life. 5 9 Cancer survivorship is divided into three phases: 1) acute phase (extends from diagnosis to the completion of treatment); 2) extended phase (starting from completion of initial treatment for primary disease, remission of disease or both to the end of regular follow-up examinations); 3) permanent survival (categorized by extended disease-free intervals, where the likelihood for disease recurrence is low). 5 9 " 6 0 Cancer survivorship research identifies and examines cancer 9 diagnosis and treatment-related outcomes, provides knowledge regarding optimal follow-up care and attempts to maintain optimal health of survivors following cancer treatment.60 Based upon prevalence rates within the last 15 years,1 1% of all Canadian women are survivors of breast cancer. In BC alone, it has been estimated that there are more than 32,000 breast cancer survivors.1 Unique health care needs of this population have led to research investigating QOL interventions for women surviving the disease. Moreover, breast cancer survivors are at increased risk for disease recurrence and secondary illness (resulting from treatment) when compared to women who have not had breast cancer, supporting the need for interventions within this target population.3 3'4 7 In response to the issues faced by the 10.1 million cancer survivors in the US, the National Cancer Institute (NCI) implemented the Office of Cancer Survivorship (OCS): 1) to identify and understand the needs of cancer survivors; 2) to enhance survivor QOL; 3) to address the physiological, psychosocial and economic sequelae experienced by survivors resulting from cancer and its treatments.61 A similar office does not exist in Canada, and research examining survivorship issues is needed: "Although many individuals who survive cancer continue to live productive and rewarding lives, the cancer experience is difficult and presents many physical, emotional and spiritual challenges. These challenges often persist beyond the point of physical recovery from the cancer itself, often requiring extensive use of rehabilitation and supportive care resources. Cancer survivors are also at risk of recurrence or developing a second primary cancer and therefore may place increased demands on health services. This increased demand and complexity 10 of survivors' health needs must be considered in the planning and development of [interdisciplinary] health services." Canadian Cancer Statistics, 2005, p. 59 1 2.3 Exercise for Women Living with Breast Cancer Evidence for exercise as an effective intervention, both during and following treatment, is increasing. Since the early 1990's, 51 published studies (48 quantitative and 3 qualitative) have examined exercise in breast cancer survivors. 2' 4 8' 6 2" 6 4 Moreover, five literature reviews 2 ' 4 8 ' 6 2" 6 4 (three of which were systematic reviews) have summarized the effects of exercise for breast cancer patients and survivors. For this thesis research, systematic searches using CD-ROM databases including PubMed, CINAHL, SPORT Discus, CancerLit and PsycINFO were used to locate relevant literature up to and including December 2006. Key (MeSH) terms including breast cancer, oncology, survivor, exercise, physical activity, rehabilitation, intervention, treatment, sport, aerobic training, and resistance training were combined and used in the search. Of the 48 quantitative studies examining the role of exercise in persons with breast cancer, the research could be classified into two distinct categories based on participant samples: persons undergoing breast cancer treatment and persons who had completed cancer treatment. In the post-treatment category, 27 studies examined exercise as an intervention following breast cancer treatment (11 used observational designs, 11 tested interventions and five examined exercise in conjunction with other interventions such as diet, cognitive therapy, etc.) (Figure 2.1). The majority of these studies reported both biologic and psychosocial improvements after participation in exercise programs. 2 ' 2"' 3 ' 1 8 ' 2 0" 3 1 Three key points from the literature guided the thesis research: 1) positive evidence supporting persons with breast cancer to exercise after treatment exists; 2) despite this 11 evidence, exercise adoption and adherence rates among persons with breast cancer are low 1 6; 3) understanding factors that influence patient's attitudes towards and motivation to exercise is important, as programs, consistent with survivors' preferences, have been suggested to improve exercise adoption and adherence.16 ,49'50 The latter two points identified a gap in the literature and served as a basis for framing the study's research questions. Studies reporting on exercise after breast cancer treatment are summarized in Table 2.1. 8 ' 1 2" 3 2 Exercise promotion for women living with breast cancer is important for a variety of reasons. Current treatments for breast cancer have been shown to lead to • morbid increases in body weight, and reduced lean body mass;65 • decreased physical function, including lowered strength and energy levels;3 • premature menopause and estrogen loss;6 6 • changes in heart muscle that can lead to heart failure;67 • elevated levels of depression post-surgery.68 These changes can result in increased risks for breast cancer recurrence, osteoporosis, heart disease and decreased QOL among members of this population. In contrast, exercise has been shown to: • reduce body fat and increase muscle mass;69 • improve functional declines associated with cancer treatment;3 • increase bone density in postmenopausal women with estrogen-sensitive cancer, for whom HRT is contra-indicated;66 • increase aerobic capacity through improving cardiac function;38 • decrease the occurrence of depression, anxiety and fatigue both during and after breast cancer treatment.32 12 These benefits provide a rationale for promoting and ensuring lifelong exercise among women living with breast cancer. 2.3.1 Exercise Adoption and Adherence Despite demonstrated favourable effects of regular exercise among persons with cancer, declines in exercise behaviours are evident.6 , 3 4'3 5 As Segal et al. suggested, women living with breast cancer actually discontinue most physical activity during cancer treatment. However, the benefits of exercise are contingent upon regular participation. Exercise adherence among women living with breast cancer depends largely upon their attitudes toward and motivation to exercise.9'16 The American College of Sports Medicine (ACSM) has focused on increasing exercise levels among sedentary populations, including older adults and those with chronic illness. 3 9 ' 4 0 Methods to promote increased participation include targeted public educational initiatives (e.g., free booklets/activity guides for older adults) and introduction of exercise prescription guidelines for health care professionals (e.g., A C S M manual: Guidelines for Exercise Testing/Prescription). Key messages from these initiatives reinforce that regular exercise participation, at moderate levels of intensity for 30 minutes per day, on most days of the week, can produce health benefits in these populations.40 For persons with cancer who were sedentary prior to diagnosis and treatment, these recommendations can provide a starting point for adopting a lifelong pattern of exercise. Research at the University of Alberta suggested that understanding the major behavioural determinants of exercise, after cancer diagnosis, is critical for developing effective interventions for individuals living with cancer.16 In addition, understanding individual preferences for exercise and tailoring exercise interventions to those preferences may be one method to enhanced rates of adoption and adherence to long-term exercise. 1 6 ' 4 1" 4 4 13 Inherent in that challenge, however, are a variety of factors that can influence exercise attitudes, values and behaviours in women living with breast cancer including demographic variables (ethnicity, age, income, etc.) and medical variables (disease stage, time since diagnosis, etc.). While research examining some of these factors (i.e., age and income) in relation to exercise adoption and adherence has been conducted,36'62 studies exploring differences in exercise attitudes among breast cancer survivors of ethnoculturally diverse origins and socioeconomic backgrounds are surprisingly absent. Such gaps are emerging as research priorities within the Office of Cancer Survivorship in the US . 6 0 2.4 Theoretical Framework Reports of low exercise participation rates among breast cancer survivors has prompted researchers to explore behavioural theory and its utility in understanding determinants of exercise for this group.70 Ajzen's Theory of Planned Behaviour (TPB) 7 1 provides a framework for understanding such determinants. Designed to predict and explain human behaviours in specific contexts, the TPB framework proposes that people will perform a behaviour when they: 1) are motivated and possess the willingness to exert effort; 2) feel that they have control over the behavior; 3) evaluate the behavior positively and believe that others who are "important" (e.g., oncologists) think they should perform it . 7 1 ' 7 2 Such a theory is based on three conceptually independent constructs: 1) attitude (positive or negative evaluation of the behaviour); 2) subjective norm (perceived social pressures surrounding the behaviour) and 3) perceived behavioural control (perceived level of challenge associated with the behaviour).73 Studies by Courneya and colleagues found that these constructs significantly influenced exercise intention and behaviours in women with breast cancer both during and after treatment.73'74 These findings suggest the need for 14 health care providers to identify common control beliefs, including barriers and preferences to exercise, when prescribing exercise interventions to individuals after cancer treatment. As the purpose of this study was to identify the exercise preferences of women living with breast cancer post-treatment, the results identified by Courneya and colleagues and the efficacy of the TPB to understand determinants of exercise in this population offered additional support to carry out the research. 2.5 Exercise Preferences in Other Patient Populations Exercise preferences, defined as one's choice to value an aspect of physical activity (e.g., frequency, intensity, type, time, location) more than another, often affect the health-related decisions of individuals living with chronic illness. 4 9 ' 5 0 Exercise preferences have been explored in a variety of different patient groups including adults with heart disease and diabetes, as well as older adults, e.g., women and sedentary healthy elderly. Eliciting exercise preferences has been successful in helping such patients reach health-related decisions consistent with their individual values.50 Matching one's exercise preferences with activity type, surrounding environment, timing and intensity has been suggested to lead to increased maintenance in exercisers.51 In fact, efforts to decrease the prevalence of inactivity would have been more effective if the exercise was tailored to the preferences of the community under study.49"32 Furthermore, exercise preferences within each group surveyed varied according to demographic, medical and exercise-related variables, limiting the generalizability of these studies' results to other chronically ill populations. Of the 51 journal publications that focused on exercise for women living with breast cancer, only 3 studies 1 6 ' 4 0 ' 7 5 examined the exercise preferences of this population. One of 15 these studies contained solely breast cancer survivors as participants and was qualitative in nature.75 Participants in Jones and Courneya's study16 were a variety of cancer survivors (including breast), up to 1.5 years from diagnosis, a portion of whom were still undergoing treatments for breast cancer. Results from the two quantitative studies revealed that cancer survivors preferred moderate-intensity recreational activity, in a home-based environment, carried out on their own. 1 6 ' 4 0 Findings in the qualitative study showed walking to be the preferred exercise modality among participants. Moreover, decreased levels of fatigue and the ability to improve survival were identified as the two most important benefits of exercise during treatment. Lastly, participants expressed their preference to receive exercise information from a trained individual during exercise programs.75 To date, no studies have examined solely the post-treatment exercise counseling and programming preferences of women living with breast cancer. 2.6 Conclusions After reviewing the literature, the following conclusions were made: 1) Women living with breast cancer often experience physical, psychosocial and economic sequelae during and following cancer treatment. These sequelae can lead to decreased QOL (e.g., physical, emotional, economic and spiritual well-being). 2) Post-treatment exercise for women living with breast cancer has been shown to ameliorate treatment-specific side effects. 3) Low levels of exercise adoption and adherence remain challenges among women living with breast cancer. 4) Recent studies involving women with breast cancer have suggested that: 1) understanding individual exercise preferences may increase motivation and 16 adherence; and 2) exercise preferences lead to exercise programs tailored to the needs of women with breast cancer, and may ultimately influence long-term participation. To date, no studies have examined the exercise counseling or programming preferences of women living with breast cancer in BC, a gap explored by this study. 17 3 STUDY DESIGN AND METHODS The aim of this study was to identify and describe the exercise counseling and programming preferences of women who have completed treatments for breast cancer in BC. The following chapter outlines the methodology of this study. Information summarizing the study design, participant recruitment and sampling procedures, data collection, instrumentation and ethical considerations is presented. Procedures for assessing reliability and validity, data management and analysis are also reviewed. 3.1 Study Design This descriptive study used a survey to identify exercise counseling and programming preferences of women living with breast cancer following treatment in BC. A 11 -page, self-administered questionnaire (SAQ) was used to collect the data. Components of an existing questionnaire (used by Jones and Courneya16 to assess exercise preferences of individuals with different types of cancer in Alberta) were adapted for this project, with permission to modify and distribute the questionnaire obtained from the authors. See Appendix A for a copy of the letter of permission and Appendix B for a copy of the modified SAQ. 3.2 Participant Recruitment & Sampling Procedures 3.2.1 Study Participants Women who had received a diagnosis of Stage 0,1, II or III breast cancer in the province of BC, between January 2000 and December 2005, and were at least 3 months post-treatment, were sent an introduction letter to participate in the study. Identification of eligible participants was restricted to the B C C A ' s referred patient list (not the B C C A Cancer Registry). Questionnaires were mailed in May 2006 to English-speaking individuals who 18 were able to give informed consent and to women who were treated in the province, even though they might have re-located. Non-English speaking persons, individuals who could not give informed consent due to limited mental competence, and women diagnosed with Stage IV (metastatic) breast cancer were excluded. 3.2.2 Sampling Technique Through simple random sampling, eligible women living with breast cancer, who had been referred to the B C C A , were selected for the study from the B C C A client database. After being stratified by treatment type (chemotherapy vs. no chemotherapy) women were then mailed the SAQ. Simple random sampling was used for this study because this technique ensures an unbiased and representative sample.76"78 However, according to Singleton and Straights, in order to carry out simple random sampling, an entire list of the population being researched must be available.78 While the list of referred patients from the B C C A theoretically provided this, time and funding constraints (e.g., not enough funds to hire a translator to make the questionnaire available in multiple languages) resulted in the exclusion of non-English speaking individuals and those who could not competently offer consent. 3.2.3 Sample Size A representative sample of 472 women living with breast cancer received letters of invitation. Sample size was calculated using a formula for estimating a population proportion (i.e., the percentage of individuals in a population who will respond a certain way about a variable of interest) and appears in Appendix C . 7 8 Based on a population of 10,000 women with breast cancer (derived from women diagnosed between January 2000 to 19 December 2005 in BC), a population proportion of 81% (prevalence rates taken from Jones and Courneya's survey of exercise preferences among a variety of cancer survivors in Alberta, in which 81% of respondents preferred walking as their primary exercise activity); a desire to be highly confident when reporting the study results (95% confidence interval); and a 5% margin of error, a sample size of 236 was required. The above calculation was only one factor in determining the total sample size for the survey. Practical considerations including survey response rates and cost estimates were also considered. Survey response rates among women with breast cancer in previous exercise studies have ranged from 53% to 70%. 2 ' 4 8 ' 6 2 According to Portney and Watkins, response rates of 60%-80% are considered excellent and, realistically, survey research more commonly yields response rates of 30% to 60%. 7 6 Therefore, the total survey sample size was increased, based on a projected 50% response rate, to 472. As sample sizes are often based upon the numbers needed to answer one's research question(s), calculating a sample size based on estimates of a proportion (as was done in the completed project) was appropriate. While multiple sample size calculations were carried out (see Table 3.1), the final sample size determined was feasible and allowed reasonable estimates of the exercise counseling and programming preferences of women living with breast cancer to be described with a known degree of confidence. Because the aim of the study was to identify and describe exercise preferences of women living with breast cancer, the focus of the research was on obtaining data for future hypothesis generation and not on examining relationships among study variables. 3.3 Instrumentation (Questionnaire) The study questionnaire contained items designed to assess: 20 • exercise behaviour, including frequency and duration of exercise before, during and after cancer treatment; • factors that affect exercise participation, e.g., cost, location, safety concerns; • exercise programming preferences, including preferred exercise companions (or preference to exercise alone); appropriate time to initiate exercise; preferred exercise location; optimal length, intensity, structure and modality of exercise program; • exercise counseling preferences, such as the desire for exercise counseling, the preferred timing and method of exercise counseling, its importance during the cancer experience, the preferred counseling source, and location of exercise counseling; • demographic and medical variables (e.g. age, gender, education, stage at diagnosis, and specific types of treatments received). While the questionnaire for this study was adapted from another study,16 much thought was given to survey design issues when carrying out the modifications. The content of the questionnaire, including the sequence of the sections and questions, were placed in logical order. Questions specific to existing exercise practices and behaviours preceded all questions about preferences. As well, sensitive questions relating to exercise consultation were placed in the latter half of the questionnaire.76 By placing sensitive questions further on in the questionnaire, greater trust and rapport can be formed between the participant and the researcher, promoting increased honesty and candor in one's responses.77 Lastly questions that did not require participant recall are in the last section, specifically demographic variables. (All study variables are listed in a Table of Specifications in Appendix D.) 21 3.4 Ethical Considerations The study adhered to all ethical policies and guidelines set forth by UBC and B C C A in order to eliminate any potential risks for participants. A l l study documents received approval from the U B C Behavioural Research Ethics Board (BREB) and subsequently, the B C C A Review Ethics Board (BCCA-REB). A questionnaire cover letter was used in lieu of a consent form and contained the same information as a consent form (e.g., study aim, participant's role, confidentiality, refusal and withdrawal, risks and benefits). In accordance with UBC's BREB, the cover letter clearly stated that: " i f the questionnaire was completed and returned, it was assumed that consent had been given."7 9 The certificate of approval, issued by the BREB, is attached (see Appendix E). 3.5 Reliability and Validity Test-retest reliability for categorical items on the SAQ was assessed using point-by-point agreement,76'80 a method that involved comparing the response from time 1 to the response from time 2 for each item in a section of the questionnaire, expressing the agreement as a simple percentage. Ideally, percent agreement will exceed 90% indicating stability of responses between times 1 and 2. Test-retest reliability was assessed during a pilot period, prior to commencing the survey. Ideally, questionnaires should be pilot-tested on a small representative sample, approximately five to ten individuals, from the target 76 population. The SAQ in this study was piloted among 10 persons living with breast cancer, all who had received a diagnosis in BC within the last 5 years and had completed treatment. Eligible volunteers, recruited from local breast cancer support groups (see Appendix F for recruitment advertisement), were mailed a questionnaire. The questionnaire was administered to the same individuals on two separate occasions with a test-retest interval of 22 two weeks (as suggested by Portney and Watkins76) to minimize possible learning or memory effects. Changes in exercise counseling and programming preferences were not expected, as these variables are components of attitudes and values and should remain consistent over time. In addition, the pilot test was used to ensure that the questionnaire was "user-friendly," made sense, had questions that were clear/unambiguous, and had items that generated expected data which could then be used for data analysis. To obtain such information, a cover page containing the following questions accompanied the pilot SAQ: 1) how long did it take you to complete this questionnaire? 2) were the questions clear and easy to answer? 3) i f not, please write down the number to any questions that were not clear and why; 4) were any questions insensitive or did they seem like an unnecessary invasion of privacy? 5) i f so, which ones and could you suggest an alternative? Results from the pilot study were used to revise the SAQ in preparation for data collection. In descriptive research, most social-cognitive variables have a theoretical domain that consists of all the behaviours, characteristics or information that could possibly be observed about that variable.78 In this study, content validity was used to help validate the SAQ, ensuring that the instrument contained a universe of content for the variables being studied.76 As determination of content validity is a subjective process, no specific statistical indices could be used to carry out the assessment.76 However, claims for content validation were inferred by using items from previous instruments subject to expert review and the pilot-test conducted here. Revisions were made based on the pilot data collected, as well as feedback from the pilot test participants. For a detailed list of SAQ revisions, refer to Table 3.2. 23 3.6 Data Collection 3.6.1 Procedures STEP 1: After a list of eligible study participants was compiled by the B C C A and forwarded to the primary author of the study, addresses and phone numbers were crosschecked, using Telus Online Phone Book to decrease the number of returned questionnaires due to incorrect addresses. If a potential participant could not be located with this online tool (including persons who had a US postal address), they were still included in the study and a survey package was sent to the address on file with the B C C A . This process was carried out until 472 participants were identified (236 who were treated with surgery and radiation and 236 who were treated with surgery, radiation and chemotherapy). STEP 2: The survey package was mailed to 472 eligible potential participants. The 54-item questionnaire (Appendix B) was forwarded as part of a package including the following: • a detailed cover letter introducing the study and addressing informed consent (Appendix G); • a stamped, self-addressed return envelope. Return of a completed questionnaire inferred consent. Each questionnaire had an individual ID number (SAQid) that corresponded to the participant to whom it was mailed. A master list linking the S A Q i d number to each participant's name was kept in a password-protected file at UBC. 24 STEP 3: For participants not responding within two weeks, a postcard reminder was mailed to them (Appendix H) to enhance response rates. Although the majority of questionnaires were returned within the first 14 days of the study, research has shown that the single most powerful determinant of response rates is the frequency of contact with the respondent.77 Additional techniques known to enhance response rates were also implemented including personalized cover letters, coloured stationery, assurances of confidentiality, and utilization of stamped return envelopes.81 STEP 4: At 4 weeks, a replacement survey package was mailed out to all non-respondents. The contents of the survey package were the same as the initial package, with a reminder notification. 3.6.2 Strengths and Limitations of Data Collection Methods A mailed survey allows the respondent to remain anonymous (encouraging candid answers) and is low cost.7 7'8 1 Survey methods chosen by a researcher are often dictated by sample limitations, cost, subject matter and response rates and "when essential information requires only a few simple questions, a SAQ makes good sense." 7 7 ' p 1 5 3 Commonly cited disadvantages of questionnaires include: 1) slow response times; 2) misinterpretation of questions; 3) inability of the researcher to know the motivational factors of the respondent's participation and 4) a potential for recall bias. 7 7 , 8 1 Measures to increase response rates specifically addressing the above criticisms were implemented. In contrast, advantages of SAQs include: 1) respondents can complete the survey at their leisure; 2) all participants are exposed to the same questions, in the same manner; and 3) this method has 25 great utility for studying phenomena that require self-observation, such as attitudes. Together, these advantages provide support and a rationale for using a SAQ within this study. 3.7 Data Management, Analysis and Distribution STEP 1: Code and enter data As questionnaires were returned, each was coded and entered into a password-protected SPSS data file by a research assistant. Furthermore, an administrative database was created and used to record survey procedures (e.g., questionnaire mailing and return dates, reminder notices, re-mailings) and completion rates. Incomplete questionnaires or those with missing data were coded and are reported in the final analysis. Survey packets returned unopened were also recorded and are presented in the results section, as this tracking was necessary to calculate an accurate response rate. STEP 2: Data cleaning and preliminary analysis Data cleaning occurred every two weeks during data collection. Inputed data were randomly crosschecked with the original survey responses for accuracy and descriptive statistics including histograms/boxplots were used to identify and verify outliers to ensure data entered were within expected range. Preliminary data analysis began 2 weeks after the initial questionnaire mailout. Analysis and evaluation procedures were adapted from those of a similar study involving cancer survivors in Alberta, 1 6 with advice and consultation from members of the thesis supervisory committee. 26 STEP 3: Closing of data collection and final analysis Data entry was closed on September 30, 2006. Descriptive statistics were used to answer the two primary research questions: 1) what are the exercise counseling preferences of BC women living with breast cancer following completion of cancer treatments? and 2) what are the exercise program preferences of BC women living with breast cancer following completion of cancer treatments? Means and standard deviations were used to present data from continuous variables (i.e., exercise frequency and duration before, during and after completing breast cancer treatment), while percentages and frequencies (counts and distributions) were used to report categorical data (i.e., exercise counseling and program preferences). These results, along with summaries of the participant demographic and medical characteristics, are presented in Chapter 4. While not a specific aim of the study, the opportunity to explore differences in exercise preferences among older versus younger breast cancer survivors, as well as treatment type received by survivors (chemotherapy versus no chemotherapy) presented itself. In these situations, chi-square analyses were used and a significance level of .01 was adopted to guard against type I errors. I ( >'7 6 - 8 2 STEP 4: Publication and dissemination of findings The information gained from this research 1) will be submitted as a thesis to the Faculty of Graduate Studies at U B C and the university library; 2) will be submitted as a manuscript to a peer-reviewed journal; 3) will be written up as a lay summary and presented to study participants at a local information evening; 4) will be submitted in abstract form to a relevant academic conference; and 5) will be submitted as a report to the BCCA including a summary for their website or local newsletter. 27 4 RESULTS The aim of the study was to identify and describe the exercise counseling and programming preferences of women who had completed treatments for breast cancer in BC. The following chapter summarizes the results for both primary and secondary research questions. Differences in exercise preferences based on demographic and medical variables are also presented. 4.1 Participant Demographic and Medical Characteristics Figure 4.1 shows the outcome process for the study's response rate. Questionnaires were mailed to eligible participants, 236 of whom were treated for breast cancer with chemotherapy and 236 whom were not. A total of 190 completed surveys were returned and analyzed (93 from women treated with surgery and radiation, 97 from women treated with surgery, radiation and chemotherapy). Ninety-eight surveys were returned unopened (two from families of potential participants that were deceased and 96 from eligible participants who were no longer at the address on record at the BCCA). In addition, two survey packages were returned from respondents who declined to participate and two questionnaires from a completely different breast cancer study were returned in our project's self-addressed return envelopes. Incomplete questionnaires were included in analysis and their missing data were coded as such. However, none of them omitted more than 20% (n=5) of items. The overall response rate was 40% (190 of 472) and the response rate for participants (e.g., after exclusions for invalid addresses, deaths, participation refusals) was 51% (190 of 370). Table 4.1 presents the demographic and medical characteristics of the study participants. Mean age of the respondents was 61.81 years (SD 9.62), with the largest age 28 group of women (36%) between 50 and 59 years. The most frequently reported level of education was high school (32%). Forty-five percent were retired, with 42% reporting an annual family income of $25,000 - $44,999 (the most frequent income group). Eighty-six percent of participants self-reported their race/ethnicity as Caucasian. Medical information collected showed that the largest group of respondents (45%) had stage I breast cancer. Twenty-eight percent of participants were between 37 and 48 months from their most recent diagnosis with breast cancer. For the entire sample, the mean number of months since diagnosis was 31.37 (SD=20.33; minimum=0 and maximum=60). As well, 105 women (55%) indicated that they were currently taking medications for their breast cancer (e.g. anastrozole/Arimidex, letrozole/Femara, tamoxifen). 4.2 Exercise Counseling Preferences Table 4.2 provides a detailed summary of the exercise counseling preferences of BC women living with breast cancer following completion of cancer treatments. The majority of participants (70%) indicated that they would prefer or maybe prefer to receive exercise counseling at some point during their cancer experience. Sixteen percent had no preference and 14% indicated that they had no interest in exercise counseling. Additionally, the majority of respondents (80%) preferred to receive exercise counseling from an exercise specialist affiliated with a cancer centre or local community centre, in person/face-to-face (87%) and at the cancer centre itself (57%). Thirty-seven percent preferred counseling immediately following treatment with 25% preferring to receive exercise counseling before treatment. 29 4.3 Exercise Programming Preferences The exercise program preferences of BC women living with breast cancer following completion of cancer treatments are listed in Table 4.3. The greatest number of respondents preferred recreational exercise (97%) at a moderate intensity (66%). Smaller proportions preferred walking as their main form of activity (46%), unsupervised/self-paced exercise (60%), carried out in the morning (57%). Many of the respondents also preferred exercise programs that were spontaneous/flexible (55%), offered different activities each time (54%), started immediately after (41%) or before cancer treatment (21%) and took place outdoors (33%). Moreover, the majority of respondents (59%) had 'no preference' when it came to exercise company or who they exercised with. Over 62% of participants indicated they were interested or might be interested in regularly attending (at least 3 times/week) an exercise program for women living with breast cancer at a local facility in their city/town. An open-ended question followed, asking participants to explain why or why not they might be interested in such an exercise program. A broad-level, thematic analysis of these responses using first-level, open coding was carried out. Responses fell into two categories, including comments supporting interest in regular exercise (see Table 4.4) and comments suggesting disinterest in regular exercise (Table 4.5). 4.4 Types of Exercise Reported Among BC Women Living with Breast Cancer Results for the secondary research question "What types of exercise are utilized by BC women living with breast cancer?" showed the five most common exercise activities to be walking (n=157), gardening/yard work (n=l 15), exercise class/aerobics (n=47), weight training (n=43) and cycling (n=33). See Figure 4.2. Walking, the most popular activity reported, was carried out by 83% of the sample. Further exploration of these top live 30 activities showed walking and gardening/yard work as the only activities being carried out for more than 150 minutes/week (the amount of exercise recommended for seniors by the A C S M guidelines). Participation in exercise classes/aerobics, weight training and cycling ranged from 77 minutes/week to 122 minutes/week. Participants' exercise behaviours before breast cancer diagnosis, as well as during and after treatment, were also surveyed. Table 4.6 contains a summary of these behaviours. When calculating mean frequency (sessions/week) and duration (minutes/session and total weekly minutes) of exercise behaviours across the entire sample, respondents participated in an average of 1.67 sessions of moderate-intensity exercise (MIE) and .68 sessions of strenuous-intensity exercise (SIE) before their diagnosis with breast cancer. During treatment, these averages decreased to .85 (MIE) and .15 (SIE), respectively. Once participants had completed their breast cancer treatments, the average duration (sessions/week) increased to 1.82 for MIE and .56 for SIE. Mean duration results (minutes/exercise session and total minutes/week) for MIE and SIE showed similar trends. Prior to being diagnosed with breast cancer, participants averaged 23.39 minutes/session of MIE and 12.63 minutes/session of exercise at a strenuous level. During breast cancer treatments these sessions decreased to 11.02 minutes (MIE) and 2.07 minutes (SIE). Post-treatment, duration times increased to 23.23 minutes/session (MIE) and 9.95 minutes/session (SIE). Focusing specifically on exercise duration (total minutes/week) of MIE and SIE calculated across the entire sample, these results were well below the recommended A C S M exercise guidelines for all three time-periods (pre-diagnosis, during treatment, and post-treatment). Furthermore, 25% of participants (n=47) indicated that 31 they did not exercise prior to their breast cancer diagnosis, 36% (n=67) did not exercise during treatment, and 21% (n=39) were still not exercising post-treatment. Further exploration of actual participants' exercise behaviours at each intensity level before diagnosis, during treatment and after treatment showed these women to be just under, if not meeting the A C S M exercise guidelines. Prior to these participants' diagnoses with breast cancer, they reported an average of 3.73 M1E sessions/week, with each session lasting an average duration of 52.78 minutes. During treatment, of the 25% of participants (47 of 186) that carried out MIE, participation rates averaged 3.37 times/week and 43.49 minutes/session. Once treatment for their breast cancer was completed, participation in MIE slightly decreased to 3.33 sessions/week and 42.47 minutes/session. 4.5 Factors that Affect Exercise Adoption and Adherence Results for the secondary research question "What aspects of physical activity make exercise adoption and adherence easier among women living with breast cancer?" are summarized in Table 4.7. Results reported are based on responses from 169 to 177 participants (varies per item). The proportion of missing data for each item (coded as "no response given") ranged from 6.8% to 10.5%. Participants were asked to respond on a 5-point Likert scale to statements regarding attributes that often affect regular exercise uptake and participation (e.g., setting, cost, social opportunities, safety, duration and health benefits). Likert scale responses ranged from strongly agree = 5 to strongly disagree = 1. Of participants who responded, the vast majority agreed or strongly agreed that, in order for them to participate in regular exercise, the activity must provide health benefits (94%), be close to where they live (85%), and be safe with low/no risk of injury (84%). Moreover, the respondents agreed or strongly agreed that the cost of the activity (low/cost or free) was 32 moderately important (65%), as were the fun/enjoyment levels (74%) and the variety of activities offered (55%) within the program. Of lower importance was the need for the exercise program to provide social opportunities (32%) and/or be short in duration (28%). 33 5 DISCUSSION The aim of this descriptive study was to identify and describe the exercise counseling and programming preferences of women who had completed treatments for breast cancer in BC. The following chapter reviews important study findings and compares the results with the work of others in the field of breast cancer and exercise. Clinical implications and study limitations are presented and areas for future research have also been identified. 5.1 Background Discussion Since the mid 1990's, there has been a surge in research examining the role of exercise as an intervention among breast cancer survivors.60 This surge may be in response to the growing number of women who continue to live years beyond their breast cancer diagnosis. While it is exciting to see the percentage of survivors continue to increase, it should not be forgotten that they continue to live, day in and day out, with many physical and psychological effects of breast cancer and its treatments, sequelae that can lead to decreased QOL (e.g., physical, emotional, economic and spiritual well-being). While evidence supporting exercise as a positive, beneficial intervention is increasing, literature suggests that breast cancer survivors still do not exercise regularly post-treatment.16 These low participation rates have prompted researchers to explore methods that will promote exercise uptake and adherence among breast cancer survivors. A few recent studies involving breast cancer survivors explored exercise counseling and programming preferences16'40'75 - factors that have been suggested to influence exercise motivation and 34 participation. Results from these studies indicated that cancer survivors have a variety of unique needs and exercise preferences. The present study identified the exercise counseling and programming preferences of women living with breast cancer who had completed treatment in BC. Many of the results of this study concur with previous work regarding exercise preferences of cancer survivors in other locations. 1 6 ' 4 5 ' 4 6 ' 7 5 The discussion that follows responds to the primary research questions investigated in the study: 1) what are the exercise counseling preferences of BC women living with breast cancer following completion of cancer treatments; and 2) what are the exercise program preferences of BC women living with breast cancer following completion of cancer treatments? Secondary research questions were: 1) what types of exercise are utilized by BC women living with breast cancer? and 2) what aspects of physical activity (e.g., cost, safety, etc.) make exercise adoption and adherence easier among these women? As well, exercise preferences that may be unique to post-treatment women living with breast cancer in BC were identified, which may have implications for design and delivery recommendations for health education and program strategies. 5.2 Exercise Counseling Preferences An important finding from this study was that most participants preferred or maybe preferred (70%) to receive exercise counseling at some point during their cancer experience, consistent with but lower than previous reports that have examined exercise counseling preferences in a variety of cancer survivor groups' 6 ' 4 5 ' 4 6 Jones and Courneya16 reported that 84% of study participants preferred or maybe preferred to receive exercise counseling. Moreover, Vallance and colleagues45 found that 77% of their respondents indicated a similar preference. Lower results in this study may be due to differences in response options 35 available for selection. In the current study, the response option 'no preference' was added based on participant feedback obtained during pilot testing of the questionnaire. This category yielded 16% of participants' responses. Nevertheless, results support strong interest by women who have completed treatment for breast cancer to receive exercise counseling. As proposed by researchers with similar findings' 6 ' 4 5 ' 4 6 perhaps such services should be made available to survivors as a part of standard cancer care. Other results regarding exercise counseling from the present study showed that most participants preferred to receive exercise counseling face-to-face (87%), from an exercise specialist affiliated with the cancer centre (59%), and at the cancer centre itself (57%). The results for counseling mode and location are in line with other reports that have assessed exercise preferences in various cancer survivor groups 1 6 4 x 4 ( 1 However, differences in preferences for when to begin exercise counseling and from whom to receive these services were evident. Most participants in the Jones and Courneya16 study preferred to begin exercise counseling before treatment (39%) or immediately after treatment (22%). In the current study, the results were almost reversed with the largest group of respondents preferring to begin exercise counseling immediately following treatment (35%) and the second largest before treatment (24%). Perhaps these differences can be explained by the amount of time that had passed since diagnosis. Presumably, persons who were closer to their diagnosis would be more motivated to receive information regarding exercise sooner, as opposed to those who were further from diagnosis. Participants in this study were up to 5 years from their diagnosis date. Respondents to Jones and Courneya's survey were within 1.5 years of diagnosis. This rationale could also help to explain the differences in participants' preference to receive exercise counseling from an exercise specialist affiliated with a cancer 36 centre. Although most participants in the current study preferred this method, lower results may be due to participants feeling less of a connection to their cancer centre as they were much further in time from diagnosis. A similar rationale was put forth by Karvinen and colleagues,46 in their attempt to explain their results of endometrial cancer survivors' preferences for exercise counseling. 5.3 Exercise Programming Preferences Walking was the activity type preferred by the largest percentage of participants and exercise at a moderate-intensity level was most preferred, results analogous to those of other studies. 1 6 , 4 5 ' 4 6 However, only 46% of the present participants preferred walking compared to 81%, 69% and 55% of participants in other studies. 1 6 ' 4 5 , 4 6 The lower findings in the current study may be because 13% of respondents used an incorrect response method (e.g. selecting multiple responses for this item, when asked to select only one). These responses were coded separately and further exploration showed that participants consistently included walking as one of their 'multiple responses' for preferred exercise activity. A second rationale for differences may be the amount of time that had elapsed since diagnosis. It would seem likely that persons who are closer to their diagnosis (e.g., 1.5 years found in the Jones and Courneya study16) may have listed walking as their preferred activity because it is simple, safe and a good starting point for persons who may be fatigued and have decreased energy levels after cancer treatment. In contrast, persons who are further from their diagnosis may have increased energy levels, be less fatigued and have a greater capacity to take on activities that are more challenging than walking (e.g. resistance training, swimming, yoga). The largest percentage of participants in this study preferred exercising outdoors (33%>), twice as many as the Alberta study (16%)16 and in contrast to other reports.45'46 Other 37 options available for selection included at home, a community centre, fitness facility at a cancer centre, or 'no preference'. Although unique to this study, this finding is not surprising given the temperate climate of BC that would allow participants more opportunities to get outdoors for regular exercise. The majority of participants in this study (59%) had 'no preference' when it came to exercise companions. This finding is similar to, but higher than that of rCarvinen and colleagues46 who reported that 33% of endometrial cancer survivors had 'no preference' for exercise partners. However, results from the current study are dissimilar to reports by other researchers whose participants primarily preferred to exercise alone (44%1 6 and 31% 4 5). The greater preference to exercise alone may be due to gender, as men may have different preferences for exercise companionship than do women. Sixty-three percent of participants were interested or might be interested in regularly attending an exercise program designed specifically for women living with breast cancer at a local community centre. These findings are lower than those reported for other cancer survivor groups, in which 81% (yes: 52% and maybe: 26%) of persons diagnosed with non-Hodgkin's lymphoma45 and 77% of endometrial cancer survivors46 were interested or maybe interested in an exercise program specific to their cancer type. The lower level of interest in the current study may be explained by two factors: 1) differences in question/item content and 2) results from an open-ended question asking participants to explain why or why not they might be interested in such a program. The question/item in this study was very specific and asked: "Would you be interested in regularly attending (at least 3 times/week) an exercise program designed for breast cancer survivors at a local facility in your city/town?" In other studies, researchers left the question quite general (i.e., "Would you be interested in 38 an exercise program designed for non-Hodgkin's lymphoma survivors?"). Thematic analysis of the results from this open-ended question revealed that already full schedules, a desire to move on with life, the desire to not identify themselves as a breast cancer survivor, and living in rural/remote locations were reasons for and may explain community program disinterest. Nevertheless, overall findings support an interest for the availability of exercise programming services for women who have completed treatments for breast cancer in BC. 5.4 Types of Exercise Utilized by BC Women Living with Breast Cancer The five most common exercise activities, during non-work time (walking, gardening/yard work, exercise class/aerobics, weight training and cycling) are encouraging because many of these activities have been shown to have health benefits for women living 10 15 83 with breast cancer. - ' Holmes et al. showed that walking, after a diagnosis of breast cancer, for three to five hours per week at an average pace may reduce the risk of recurrence and death from breast cancer.15 In addition, Schmitz et al. showed that weight-training a minimum of 2 times per week increased QOL in recent breast cancer survivors.30 Results of the current study regarding exercise behaviours pre-diagnosis, during and post-treatment were also interesting. When calculating exercise behaviours (i.e., mean sessions/week, mean minutes/session and total minutes/week) within these three time periods across the entire sample, it was evident that on average, the total number of minutes per week doing moderate or strenuous intensity exercise was very low. These findings are consistent with previous research examining exercise behaviours during treatment.16,45 However, when reviewing exercise behaviours of only those study participants who actually reported exercise pre-diagnosis, during and post-treatment it was evident that these women are close to or meeting A C S M exercise guidelines for older adults. When taking into account the exercise 39 behaviours of the entire study sample, findings suggest that the challenges of exercise adoption and adherence remain realities for women living with breast cancer who have completed treatments here in BC. 5.5 Factors That Affect Exercise Adoption and Adherence The majority of study participants agreed or strongly agreed that in order for them to participate in regular exercise the activity must provide health benefits (94%), occur in a location close to where they live (85%), and be safe with low/no risk of injury (84%). These findings are similar to those in the literature. Research regarding determinants of exercise behaviours and motivation in cancer survivors and older adults has suggested a number of facilitators and barriers to exercise.84"86 Incentives identified have included the desire to feel better and improve well-being, to cope with the stress of cancer experience and treatment, and to maintain a normal lifestyle. Exercise barriers included fear of complications/injury, lack of access to facilities, lack of time, lack of counseling, and fatigue. Given that exercise adoption and adherence remain challenges for women living with breast cancer, awareness of these barriers and incentives among health professionals who design and facilitate breast cancer care services is both important and valuable. Perhaps if exercise programs created for breast cancer survivors were designed with these factors in mind, exercise uptake and maintenance over the long term would improve. 5.6 Theoretical Framework Ajzen's Theory of Planned Behaviour (TPB) was selected in the current study in order to help frame some of the research questions. Selection of this theory seemed appropriate as it has been applied by researchers to understand exercise determinants in breast cancer 40 survivors in previous studies. The theory, comprised of three conceptually independent constructs; attitude, subjective norm and perceived behavioural control (PBC) (see section 2.4), proposes that behavioural intention is the key antecedent in the odds of performing a specific behaviour.71"73 The TPB also proposes that the global constructs are influenced by underlying beliefs including behavioural, normative and control beliefs.70 Results from two published studies show that PBC (the ease or difficulty of performing a behaviour) significantly influences post-treatment breast cancer survivors' intention to exercise.9'74 These findings supported the development of the research question "What aspects of physical activity make exercise adoption and adherence easier among post-treatment breast cancer survivors?" Results from the above question demonstrate that there were certain factors that affected exercise adoption and adherence for the participants in this study (e.g., perceived health benefits, location, safety). As previously suggested, if these factors were considered in the design of exercise interventions for post-treatment breast cancer survivors and strategies to overcome these barriers and incentives were developed, perhaps exercise adoption and adherence rates in this population would improve. A similar suggestion was put forth by Blanchard and colleagues who proposed that collecting information on TPB constructs for individual breast cancer survivors may be helpful in identifying individual exercise barriers and in turn be used to inform exercise program design.74 Going one step further, perhaps the results from section 4.5 of this study could be used in conjunction with other research to help design a clinically relevant form, for professionals in cancer care who provide exercise counseling or prescription, that would collect information on TPB constructs. From there, 41 future research testing exercise interventions that incorporate the use of such a form and its content versus those that don't could be carried out. 5.7 Study Limitations Although important findings have been identified in this study, limitations associated with the research need to be addressed and considered when interpreting the results of this study and planning future research. An initial limitation, selection bias, is likely to be present due to the aim of the study being made quite clear, possibly resulting in people who had an interest in exercise being more likely to participate. It is impossible to know if there are additional differences between responders and non-responders. However, they did not differ on sex, treatment type or diagnosis. Secondly, results should be generalized with caution. Participants in this study were women who had received a diagnosis of Stage 0, I, II or III breast cancer in the province of BC and were at least 3 months post-treatment. This sample may not be representative of breast cancer survivors across Canada and, therefore, may not reflect the exercise preferences of breast cancer survivors who are currently undergoing treatment, or have metastatic breast cancer. A third limitation is the relatively small sample size and limited ethnic diversity of participants. Although 190 women living with breast cancer participated in this study and the sample size was larger than the total number of breast cancer survivor participants in the study by Jones and Courneya,16 the overall sample was smaller than that calculated for an adequate sample size for examining proportions such as exercise preferences. Moreover, participants from a number of ethnic groups were underrepresented. Future studies should attempt to obtain a larger sample with more diverse breast cancer survivor participants. 42 5.8 Implications Results of this study have a number of implications for health professionals who are involved with exercise prescription, rehabilitation, and general cancer care for the increasing number of women living with breast cancer in BC. Findings suggest that women who are post-treatment prefer to receive exercise counseling, face-to-face, from an exercise specialist affiliated with the cancer center itself. Hence, it would be helpful for oncology clinicians to: 1) be aware of these interests and offer women a referral to an exercise specialist, and 2) make exercise specialists a part of the health care team at the local cancer centre so there is an appropriately educated professional on staff who can be available for consultation and/or exercise program prescription. Furthermore, at a program level, cancer centres could consider partnering with community organizations to plan or endorse exercise programs. Perhaps such programs could be modeled after existing community-based exercise programs for persons with chronic diseases (e.g., Joint Works - Water Works, Osteofit, Healthy Heart). Study findings regarding exercise program preferences indicate that women living with breast cancer who have completed treatments prefer walking, at a moderate intensity. For rehabilitation professionals who design exercise programs for such women, these findings offer a reference point from which exercise prescription can begin. As well, clinicians can be comfortable with prescribing an activity, at an intensity that has been shown to have beneficial effects on health and QOL in this population. Results also suggest that the introduction of exercise programming would be best received immediately following treatment. For clinicians and healthcare professionals who work in out-patient settings, this environment may provide a great opportunity to introduce the option of exercise programming to clients who are breast cancer survivors. 43 5.9 Future Research To address some of these limitations, future studies examining exercise preferences among women living with breast cancer should be based on large, ethnically diverse samples. Additionally, further research comparing exercise preferences of women with breast cancer who exercise versus those who do not exercise would be helpful in that most recent studies on exercise preferences tend to cite selection bias as a limitation. Moving beyond descriptive studies, future research examining the effectiveness of exercise programs tailored to survivor preferences would be helpful. Perhaps a well-controlled trial that tests tailored exercise programs consistent with survivor preferences versus non-tailored programs (i.e., a standard program) would be advantageous. This information would provide evidence for the suggestion that tailored programs might enhance exercise adoption and adherence. 44 6 CONCLUSIONS This study made the following contributions to knowledge about post-treatment exercise counseling and programming preferences of women living with breast cancer in BC: 1) Exercise counseling was preferred at some point during the cancer experience. 2) Face-to-face counseling was the preferred mode of exercise counseling. 3) Immediately following treatment was the preferred time period to begin exercise counseling. 4) Walking was the preferred exercise activity, at a moderate intensity. 5) Exercising outdoors was the preferred location for the largest number of participants. 6) Women who had completed treatments were interested or maybe interested in regularly attending an exercise program designed for breast cancer survivors at a local facility in their city/town. 7) The five most common exercise activities being utilized are walking, gardening/yard work, exercise class/aerobics, weight training and cycling. 8) Exercise behaviours pre-diagnosis, during treatment and after treatment for most participants were below A C S M exercise guidelines for older adults. 9) Health benefits, exercise location, and safety were the most common attributes that affected regular exercise participation. These findings are encouraging and have provided evidence that post-treatment women living with breast cancer in BC have unique exercise preferences. Considering the low levels of exercise adoption and adherence among women living with breast cancer and the documented benefits of exercise for these individuals, these results offer a resource to 45 health care professionals and researchers who continue to develop and test exercise interventions in hopes of improving regular exercise in this population. Secondly, these findings provide support for re-evaluating and making changes to the limited physical activity services offered to women who have completed treatment for breast cancer in the province. Seeing as there was a strong preference to receive information regarding exercise during one's cancer experience, perhaps making exercise counseling and programming services available to women who are post-treatment would be advantageous. 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Retrieved June 17, 2006 from http://www.fraserhealth.ca/Initiatives/PrimarvHealthCare/Chronic+Disease.htm 53 Table 2.1 Literature Summary: Studies Reporting on Exercise After Breast Cancer Treatment [1991-2006] Authors (Date) Participants Type of Study Intervention/Instrument Endpoints/Outcomes Key Findings | reference] |No. allocated/ Details analysed] Intervention Studies Blanchard et al. (2001) 2 2 BCS (post-treatment) Pre-test/ [39/34] Post-test Courneya et al. Post-menopausal BCS RCT (2003) 2 3 (14 months post-treatment) [53/52] Harris & Niesen-Vertommen , 24 BCS (1-17 years post diagnosis) [20] Pre-test/ Post-test (2000)' McKenzie & Kalda (2003) 2 5 BCS (mean: 6.5 years post-treatment) [23] RCT EG: Supervised acute exercise 1) State anxiety (SAI) (12 min test; 3 min cool-down) EG: Supervised cycle ergometry (15 wk, 3x/wk, 15-35 min/session) CG: No training 1) Physical Fitness (VGsmax) 2) QOL (FACT-B) EG: Upper extremity strengthening 1) Lymphedema (arm and aerobic activity (8 mo, 3x/wk, circumference, 4 points) (20-30 min/session) EG: Aerobic (arm ergometer) (8wk, 3d/wk, 5-20 min/session); Resistance exercise (8 wk, 3d/wk, 2-3 sets of 10 repetitions (weight not stated) 1) QOL 2) U E (volume and circumference) Significant decrease in state anxiety in BCS with high-anxiety pre-exercise. Acute exercise may be a promising intervention in BCS to reduce anxiety. EG increased V0 2 max by 0.29 l/minO<.001)and increased overall QOL. Exercise had beneficial effects on cardiopulmonary function and QOL in BCS. No meaningful change for 99% of data points; no difference between ipsilateral & contralateral arms. Upper extremity resistance exercise safe for BCS who have undergone treatment for breast cancer No changes in arm volume and circumference in with BCS lymphedema. 4^  Table 2.1. Continued. Author (Date) Participants [reference] [No. allocated/ analysed] Type of Study Intervention/Instrument Details Endpoints/Outcomes Key Findings Nieman et al. (1995) 2 6 Peters et al. (1994) 2 7 BCS (3 years post diagnosis) [16/12] RCT BCS (6 months post surgery) [24] Pre-test/ Post-test EG: Supervised weight training & aerobic activity (8wk, 3d/wk, 60 min/session) CG: No Intervention EG: Supervised cycle ergometry (5 wk, 5 x/wk, 30-40 min/ session); then self-reported exercise (6 months, 2-3 x/wk). 1) Change in N K C A 2) Physical performance (6-min walk test) 1) Immune function (CD 56) 2) Psychological function (FPI-R) EG improved walking distance by 59m; no change in N K C A activity. Exercise had no effect on N K C A cells in BCS. Increase in cytotoxic activity & life satisfaction. Moderate exercise training can have a stimulating effect on N K C A and improve life satisfaction. Peters et al. (1995) 2 8 BCS (6 months post Pre-test/ surgery) [24] Post-test EG: Supervised cycle ergometry (5 wk, 5 x/wk, 30-40 min/ session); then self-reported exercise (6 months, 2-3 x/wk). 1) Immune function (number and percentage of granulocytes, lymphocytes and monocytes) Increased number of granulocytes, but decreased lymphocytes and monocytes. Exercise training increases the number of specific receptors in the surface membrane of monocytes. Pinto et al. (2005) 2 9 BCS (post-treatment) [86] RCT EG: Aerobic exercise (12 wks; 2x/wk, progressed to 5x/wk at55%-65%ofmax HR, 10 minutes/session, progressed to 30 minutes/session. 1) l-mile walk test 2) BMI 3) Percent body fat (SSF) 4) Fatigue Improvements in vigor, reduction in fatigue in EG No significant differences between groups in percent body fat or BMI. LA Table 2.1. Continued. Author (Date) Participants [reference] [No. allocated/ analysed] Type of Study Intervention/Instrument Details Endpoints/Outcomes Key Findings Schmitz et al. (2006) 3 0 BCS (4-36 months post-treatment) [86] RCT EG: Supervised exercise (13 wks) 1) QOL (CARES -SF) followed by self-directed exercise (13 wks). (resistance exercise 2x/wk; LE based on 8 R M & UE starting at lightest weight; 1-3 repetitions, 8-10 sets) 2) Depressive symptoms (CES-D) 3) Body weight 4) D E X A (lean mass & body fat) 5) U E & L E strength Resistance training for recent BCS may lead to an improved QOL C G : Delayed group; did no exercise. Schultz et al. (1998) 3 1 BCS (outpatients) [28] Pre-test/ Post-test EG: Supervised exercise (lOwk, 2 x/wk). 1) Physical fitness 2) Anxiety 3) Depression Increased physical fitness, decreased anxiety and depression levels. In persons with non-metastatic breast cancer, exercise can improve physical fitness and social and emotional well-bein«. Segar et al. BCS (3.5 years post-surgery) (1998) 3 2 [30/24] RCT EG: 1) Unsupervised gym or home-based aerobic activity 2) Aerobic activity + B M (10wk,4x/wk) CG: No Intervention 1) Depression (BDI) 2) Anxiety (SSTAI) 3) Self-esteem (RSEI) EG had lower depression and anxiety levels; no change in self-esteem. Aerobic exercise may be of therapeutic benefit to BCS. ON Table 2.1. Continued. Author (Date) reference Participants | No. allocated/ analysed] Type of Study Intervention/Instrument Details Endpoints/Outcomes Key Findings Observational Studies Baldwin & Courneya (1997) 1 2 Blanchard et al. (2003) 1 3 Bremer et al. (1997) 1 4 Holmes et al. 15 (2005) BCS (51 mo. post-diagnosis) [64] BCS (mean 10.1 yr post-diagnosis) [335] Cross-sectional Cross-sectional BCS (63 mo. Post-diagnosis) [109] BCS (minimum 24 mo. Post-diagnosis)' [2987] Cross-sectional Prospective cohort SAQ: multiple, self-reported questionnaires post-treatment phase Self-reported post-treatment exercise (SAQ & interviews) Instrument not reported: self-reported post-treatment exercise Mailed activity questionnaire 1) Self-esteem (RSES) Strenuous exercise 2) Physical acceptance (BIVAS) correlated positively with 3) Physical competence (PSES) self-esteem and physical 4) Exercise participation (GLTEQ) competence in BCS. 1) Physical activity (NHIS) 1) Psychological adjustment (ABSIWB) 2) Health locus of control (MHLCS) Breast cancer mortality risk according to physical activity category Secondary data analysis between BCS and controls showed that survivors were incorporating as much physical activity as controls. However, both groups were below recommended guidelines. No differences between survivors who did and did not report regular exercise programs. Physical activity after breast cancer diagnosis may lower risk of death and recurrence. Jones & CS (including breast) Courneya up to 1.5 years post-(2002) 8 diagnosis) [311] Cross-sectional SAQ: self-reported exercise and oncologist discussions 1) Exercise behaviour (GLTEQ) 2) Normative belief (TPB) 3) Actual and preferred exercise discussions 28.4% of CS discussed exercise with their oncologist; only 15.8% of survivors were meeting A C S M exercise guidelines - j Table 2.1. Continued. Author (Date) reference Participants [No. allocated/ analysed] Type of Study Intervention/Instrument Details Endpoints/Outcomes Key Findings Jones & Courneya (2002) 1 6 McBride et al. (2000) 1 7 Nelson (1991) 1 CS (including breast up to 1.5 years post-diagnosis [307] BCS (5-74 mo. post-diagnosis [500] BCS (9-344 mo post-diagnosis) [114/54] Cross-sectional Cross-sectional Cross-sectional SAQ: self-reported exercise counseling and programming preferences SAQ: exercise frequency, duration time, and intension using stages of change measure SAQ: Self-reported post-treatment exercise 1) Exercise behaviour (GLTEQ) 85% of CS preferred face 2) Exercise counseling preferences to face exercise 3) Exercise program preferences counseling; 98% preferred the activity of walking; 51 % preferred moderate intensity exercise. No differences between survivors who did and did not report regular exercise programs. In persons with breast cancer, health promoting behaviours (e.g., exercise) correlated positively with self-esteem. Otherwise no significant difference from their matched cohort. 1) Psychological impact of cancer (IES) 1) Self-esteem (RSES) 2) Health promoting lifestyle (HPLP) 3) Perceived health (OIPHS) Pinto et al. (2002) 1 9 BCS (post-diagnosis) [69] Cross-sectional Self-reported exercise (Interview) l )Mood (POMS-SF) Women's exercise 2) Cancer-related symptoms (MSAS) levels did not increase 3) Social support (Duke-UNC FSSQ) over time from end of 4) Exercise (MOS SF-36) treatment, but indicated 5) Coping skills (COPE) interest to increase activity. Table 2.1. Continued. Author (Date) Participants Type of Study Intervention/Instrument Endpoints/Outeomes Key Findings reference [No. allocated/ Details analysed] Pinto et al. (1998) 2 0 BCS (mean 8 mo. post-diagnosis) [71] Cross-sectional SAQ: self-reported recent exercise 1) Mood(POMS-SF) 2) Coping behaviours (COPE) 3) Cancer-related symptoms (MSAS) Women who participated in exercise showed significant differences; less confusion and higher levels of social support. Young-McCaughan & Sexton (1991) 2 1 BCS (7-80 mo. post-diagnosis) [71] Cross-sectional SAQ: Self-reported exercise using 1) QOL (QOL Index) instrument developed by 2) Perceived Barriers to Exercise researcher. Scale Overall, exercise related to less confusion, more vigor and better coping skills. Women who exercised had significantly higher QOL. Exercisers reported higher QOL than non-exercisers. Notes: Intervention or cross-sectional studies that employed multiple outcome measures (e.g. diet, exercise, cognitive function, etc.) have not been included in the summary table. Abbreviations A C S M : American College of Sports Medicine; BCS: breast cancer survivor; B M : behaviour modification; BMI: Body Mass Index; CD 56: natural killer cell marker; CS: cancer survivor; CG: control group; EG: exercise group; LE: lower extremity; max: maximal; N K C A : natural killer cell cytotoxic activity: QOL: quality oflife; RCT: randomized controlled trial; R M : (reps max.) maximum repetitions; SAQ: self-administered questionnaire; TPB: Theory of Planned Behaviour; UE: upper extremity, wk: week. Test Measures ABSIWB: Affect Balance Scale Index of Well-Being; BDI: Beck Depression Inventory; BIVAS: Body Image Visual Analogue Scale; CARES-SF: Cancer Rehabilitation Evaluation System Short Form; CES-D: Center for Epidemiologic Studies Depression Scale; COPE: Multidimensional Coping Inventory; D E X A : Dual-energy X-ray absorptionmetry; Duke-UNC FSSQ: Duke-UNC Functional Social Support Questionnaire; FACT-B: Functional Assessment of Cancer Therapy-Breast; FPI-R: Freiburger Personality Inventory; G L T E Q : Godin Leisure-Time Exercise Questionnaire; HPLP: Health Promoting Lifestyle Profile; IES: Impact of Events Scale; MOS SF-36: Medical Outcomes Study Short Form 36; M H L C S : Multi-dimensional Health Locus of Control Scale; M S A S : Memorial Symptom Assessment Scale; NHIS: National Health Interview Survey; OIPHS: One Item Perceived Health Scale; POMS-SF: Profile of Mood States-Short Form; PSES: Physical Self-Efficacy Scale; RSEI: Rosenberg Self-Esteem Inventory; RSES: Rosenburg Self-Esteem Scale; SSF: Sum of skin folds; SSTAI: Spielberger State Anxiety Inventory. ON O Table 3.1 Results from Multiple Sample Size Calculations with a CI=95%, Z-value=1.96 Proportion Margin of Error Number Survey Sample Size (p) (m) (n) (based on 50% RR) .60 5.0 368 736 .70 5.0 323 646 .75 5.0 288 576 .80 5.0 246 492 .81 5.0 236 472 61 Table 3.2 Revisions to SAQ Based on Analysis of Pilot Data and Participant Feedback SAQ Item Summary of Changes Made Original Item Modified Item (section: question number) Section A: Ql Question rephrased/clarified Since completing your breast cancer treatment (i.e. surgery, radiation and/or chemotherapy), on average, how often do you do the following activities during a one-week period? Since completing your breast cancer treatment (i.e. surgery, radiation and/or chemotherapy), on average, how often do you do the following activities during your non-work time, in a one-week period (when seasonally appropriate)? Added an option for respondents to include seasonal activities None available Column added; 'Number of Weeks per Year' Section B: Q6 Question rephrased/clarified Please respond to the following statements concerning regular exercise (which we define as participation, minimum 3 times/week, for more than 20 minutes each session) by placing an 'x' in the box that most accurately represents your thoughts for items a) through k) Please respond to the following statements concerning regular exercise by placing an 'x' in the box that most accurately represents your thoughts for items a) through h): (Note: we define regular exercise as participation in physical activity for a minimum of 3 times per week, for a minimum 20 minutes per session, with'the intention of improving physical fitness and health). t o Table 3.2 Continued. SAQ Item Summary of Changes Made Original Item Modified Item (section: question number) Removed items e, f and j ; Contained 11 items: a) through k) Contained 8 items: a) through h) data analysis showed poor understanding of question (percent agreement <90%) Section C: Q8 Removed item f); participants Contained 6 items: a) through f) Contained 5 items: a) through e) expressed confusion as the same item existed in question 9 Section D: Q23 Removed item asking 'what kind'? Did your treatment for breast cancer include a) surgery, b) chemotherapy, c) radiation? If yes, 'what kind?' Did your treatment for breast cancer include a) surgery, b) chemotherapy, c) radiation? 'yes or no' All sections; all Added codes for data analysis Refer to SAQ: Appendix B question items Table 4.1 Demographic and Medical Characteristics of Study Participants Variable N % Age (n=186) 40-49 18 9.7 50-59 67 36.0 60-69 60 32.3 70-79 34 18.3 80-89 7 3.8 Education (n=188) Some high school 16 8.5 Completed high school 60 31.9 Some university/college 28 14.9 Completed university/college 53 28.2 Some graduate school 6 3.2 Completed graduate school 17 9.1 Other 8 4.3 Annual family income (n=167) <$5000 4 2.4 $5000-$14,999 6 3.6 $15,000-$24,999 25 15.0 $25,000-$44,999 70 41.9 $45,000-$84,999 22 13.2 $85,000-$l 14,999 23 13.8 >$115,000 17 10.1 Work/Employment (n=l 88) Part-time 19 10.1 Full-time 46 24.5 Self-employment 15 8.0 Temporarily employed 4 2.1 Retired 84 44.7 Homemaker 13 6.9 Disability Pension 7 3.7 Self-Reported Ethnicity/Cultural Identity (n=187) Caucasian 161 86.0 Chinese 12 6.4 Filipino 6 3.2 South Asian (East Indian, Punjabi, Sri Lankan, etc.) 4 2.2 Native/Aboriginal Peoples of North America (Metis) 1 0.5 Other 3 1.7 64 Table 4.1 Continued. Variable N % Treatment (n=190) Surgery, Radiation & Chemotherapy 97 51.0 Surgery & Radiation, no Chemotherapy 93 49.0 Months Since Breast Cancer Diagnosis (n=170) 0-12 16 9.4 13-24 37 21.8 25-36 26 15.3 37-48 48 28.2 49-60 43 25.3 Stage at Diagnosis 0 0 0 1 76 45.2 II 74 44.0 III 18 10.7 Table 4.2 Descriptive Statistics for Exercise Counseling Preferences Variable N % Would you prefer to be counseled about exercise? (n=185) Yes 99 53.5 Maybe 31 16.8 No 26 14.1 No Preference 29 15.7 Who would you prefer to receive exercise counseling from? (n=179) Oncologist 17 9.5 Nurse 4 2.2 Exercise specialist affiliated with cancer center 106 59.2 Exercise specialist affiliated with local community centre 38 21.2 Another person who has had breast cancer (patient/survivor) 4 2.2 Someone else 9 5.6 When would you prefer to receive exercise counseling for the first time? (n=181) Before treatment 46 25.4 During treatment 28 15.5 Immediately following treatment 66 36.5 3-6 months after treatment 25 13.8 7-12 months after treatment 10 5.5 At least 1 year after treatment 6 3.3 Where would you prefer to receive exercise counseling? (n=180) At the cancer centre 102 56.7 At a local community/fitness centre 48 26.7 At my home 30 16.7 How would you prefer to receive exercise counseling? (n=l 81) Fact to face 157 86.7 By telephone 3 1.7 On videotape 10 5.5 In a pamphlet/brochure 8 4.4 Over the Internet 3 1.7 66 Table 4.3 Descriptive Statistics for Exercise Programming Preferences Variable 1 N % What is your preferred exercise activity? (n=164) Running/jogging 6 3.7 Cycling 4 2.4 Swimming 14 8.5 Walking 76 46.3 Skiing (i.e. cross-country, downhill, etc.) 3 1.8 Weight training 5 3.0 Yoga 12 7.3 Pilates 2 1.2 Individual activities (i.e. golf, horseback riding, etc.) 6 3.7 Water activities (i.e. dragonboating, etc.) 4 2.4 Gardening/yardwork 14 8.5 Household chores (i.e. sweeping, dusting, etc.) 6 3.7 Other (i.e. glider, lawn bowling, etc.) 12 7.3 What would your preferred exercise intensity be? (n=l 78) Low 39 21.9 Moderate 118 66.3 High 12 . 6 . 7 No Preference 9 5.1 What type of activities would you prefer to perform? (n=167) Same activity each time 77 46.1 Different activities each time 90 53.9 How would you prefer to perform these activities? (n=l 70) Supervised/instructed 68 40.0 Unsupervised/self-paced 102 60.0 How would your prefer the structure of your exercise program to be? (n=l 68) Scheduled (specific days/times) 75 44.6 Spontaneous/flexible 93 55.4 What level of exercise do you prefer? (n=T65) Competitive 5 3.0 Recreational 160 97.0 67 Table 4.3 Continued. Variable N % Who would you prefer to exercise with? (n=188) Alone 47 25.0 With 1 or 2 breast cancer survivors 5 2.7 With 1 or 2 non-breast cancer survivors 5 2.7 With a group of breast cancer survivors 9 4.8 With a group of non-breast cancer survivors 12 6.4 No preference 110 58.5 Where would you prefer to exercise? (n=186) At home 27 14.5 At a community centre 46 24.7 Outdoors 62 33.3 Fitness facility at a cancer centre 4 2.2 No preference 47 25.3 What time of day would you prefer to exercise? (n=l 87) Morning 107 57.2 Afternoon 15 8.0 Evening 12 6.4 No preference 53 28.3 When would you prefer to begin and exercise program? (n=l 80) Before treatment 38 21.1 During treatment 21 11.7 Immediately following treatment 74 41.1 3-6 months after treatment 30 16.7 7-12 months after treatment 9 5.0 At least 1 year after treatment 8 4.4 What level of involvement would you prefer from your oncologist? (n=186) Have oncologist's permission 8 4.3 Have oncologist's encouragement 19 10.2 Have oncologist's referral 17 9.1 Be shown specific exercises by oncologist 15 8.1 No preference 127 68.3 68 Table 4.4 Summary of Codes for Thematic Analysis Illustrating Participants' Interest in Regularly Attending a Local Exercise Program for Women Living with Breast Cancer Open Coding First-Level Code Sample Quotes Social opportunity > Good opportunity to meet other women. > At my age, I'd like to join a low-medium intensity program with a social component. > Would enjoy the company. Helpful, weight prevention > I need to get back into a regular exercise program, as I have put on weight. Prevent recurrence Comments/Reasons for Interest in Regular Exercise Health benefits > Would love to gain any help to ward off the return of the disease. > I believe that a regular exercise program is going to help me physically and avoid the recurrence of cancer. > I think this is a great idea and I am for anything to improve my health. > If I could see more health benefits as a result of a specially designed program, then yes. > Improving my health and hopefully be cancer free for the rest of my life. Ensures regular participation > Might be a good idea so exercise is done on a regular basis. > I sometimes need a push so regular programs can work well -Improve strength > My biggest loss was my strength and sense of well being. > I was so weak after my treatment, anything to get my strength back would have been helpful. Table 4.5 Summary of Codes for Thematic Analysis Illustrating Participants' Disinterest in Regularly Attending a Local Exercise Program for Women Living with Breast Cancer Open Coding First-Level Code Sample Quotes Too busy > Extremely busy with caring for grandchildren. > With home-based work, free time is at a premium already. > With today's lifestyle, we as a generation are too busy in our lives to try and fit an exercise program in. Interested post-treatment, but not now > Would have been interested 3 years ago when I finished treatment, > I would have appreciated some instructions for help in getting my strength back in the first year after treatments were over. Got nothing Comments/Reasons For Disinterest in Regular Exercise Moving forward from breast cancer >My cancer was almost 5 years ago now, I no longer focus on it. Do not identify as breast cancer survivor > Do not identify myself as a breast cancer survivor- prefer to attend "regular" or "normal" classes. > I would rather not exercise with other breast cancer survivors as I have more to my life than my breast cancer journey. Lazv, need structure > I am lazy when it comes to exercise and need a plan and confidence to carry it through. -Rural/remote location > We live out of town so its not convenient to drive to town except for shopping and regular doctor's appointments. > I would if it was in our city. I don't want to drive !4 hour, let alone an hour each time. o Table 4.6 Exercise Behaviours of Participants Before Breast Cancer Diagnosis, During and After Treatment Duration Time Period Exercise Variable Times/Week (Range) Times/Week (Mean) Minutes/Session (Mean) Total Minutes/ Week (Mean) Before Diagnosis During Treatment After Treatment Behaviour across whole sample (n=186) Mild Intensity Moderate Intensity Strenuous Intensity Did not exercise (25%) Mild Intensity Moderate Intensity Strenuous Intensity Did not exercise (36%) Mild Intensity Moderate Intensity Strenuous Intensity' Do not exercise (21 %) (0-21) (0-15) (0-7) (0-16) (0-7) (0-7) (0-16) (0-10) (0-5) 1.76 1.67 .68 1.82 .85 .15 2.01 1.82 .56 19.08 23.39 12.63 16.06 1 1.02 2.07 22.79 23.23 9.95 33.58 39.06 8.59 29.23 9.37 45.81 42.28 5.57 —i Table 4.6 Continued. Duration Time Period Exercise Variable Times AVeek Times/Week Minutes/Session Total Minutes/ (Range) (Mean) (Mean) Week (Mean) Actual participants at each intensity level Before Diagnosis Mild Intensity* (n=74) (1-21) 4.30 47.43 203.95 Moderate Intensity* (n=83) (1-15) 3.73 52.78 196.87 Strenuous Intensity* (n=44) (1-7) 2.91 54.65 159.03 During Mild Intensity* (n=81) (1-16) 4.02 36.09 145.08 Treatment Moderate Intensity* (n=46) (1-7) 3.37 43.59 146.89 Strenuous Intensity* (n=10) (1-7) 2.80 38.00 106.40 After Mild Intensity* (n=83) (1-16) 4.36 49.11 214.12 Treatment Moderate Intensity* (n=99) (1-10) J . J j 42.47 141.43 Strenuous Intensity* (n=39) (1-5) 2.68 47.89 128.35 ^Categories are not mutually exclusive —i to Table 4.7 Descriptive Statistics for Participants' Opinions on Factors that Affect Exercise Adoption and Adherence Variable _ _ _ /V %_ In order for me to participate in regular exercise, the activity/program must... Be close to where I live (n=177) Strongly Agree 86 48.6 Agree 65 36.7 Neutral 19 10.7 Disagree 6 3.4 Strongly Disagree 1 0.6 Be low cost or free (n=170) Strongly Agree 48 28.2 Agree 63 37.1 Neutral 46 27.1 Disagree 11 6.5 Strongly Disagree 2 1.2 Be short in duration (less than 30 minutes) (n=T71) Strongly Agree 13 7.6 Agree 34 19.9 Neutral 49 28.7 Disagree 62 36.3 Strongly Disagree 13 7.6 Have a social component (opportunity to meet people) (n=170) Strongly Agree 10 5.9 Agree 44 25.9 Neutral 75 44.1 Disagree 29 17.1 Strongly Disagree 12 7.1 Be safe (low/no risk of injury) (n=l 76) Strongly Agree 67 38.1 Agree 80 45.5 Neutral 17 9.7 Disagree 10 5.7 Strongly Disagree 2 1.1 73 Table 4.7 Continued. Variable /V % In order for me to participate in regular exercise the activity/pro gram must... Be fun/provide enjoyment (n=174) Strongly Agree 52 29.9 Agree 76 43.7 Neutral 38 21.8 Disagree 7 4.0 Strongly Disagree 1 0.6 Offer/provide health benefits (n=175) Strongly Agree 93 53.1 Agree 71 40.6 Neutral 9 5.1 Disagree 2 1.1 Strongly Disagree 0 0 Offer a variety of activities (n=169) Strongly Agree 22 13.0 Agree 71 42.0 Neutral 56 33.1 Disagree 18 10.7 Strongly Disagree 2 1.2 74 Figure 2.1. Literature Review Flow Chart: Publications Specific to Exercise and Breast Cancer Survivors 51 Published Studies 3 - Qualitative 5 Published Reviews 48 - Quantitative M 2 - No treatment phase identified 19 - During breast cancer treatment 27 - After breast cancer treatment 11 - Tested Interventions 6-RCTs* 5 - Pretest/post-test 11 - Observational 10- Cross-sectional 5 - Tested multiple interventions (e.g. diet & exercise) 1- Prospective Cohort *RCTs: Randomized Controlled Trails 75 Figure 4.1. Flow Chart: Response Rate Summary 472 Eligible Participants - 236 (chemotherapy) 236 (no chemotherapy) 98 Returned Unopened - 96 Invalid Addresses - 2 Deceased 2 Declined Participation 2 SAQs from Another Breast Cancer Study Returned in our Postage-Paid Envelopes 370 Eligible Participants M 190 Completed Survcvs Returned Response Rate = 51% (190 of 370 eligible participants) Figure 4.2 Summary of Most Common Exercise Activities Utilized by BC Women Living with Breast Cancer (Post-Treatment) Exercise Activities Utilized by BC Women Living with Breast Cancer (Post-Treatment) Activity Appendix A Letter of Permission to Replicate Exercise Preferences Study From Or ig ina l Authors Original Message From: Lee Jones [mailto:lee.jones@ualberta.ca] Sent: February 13, 2003 7:30 A M To: bryna@interchange.ubc.ca Subject: RE: replication enquiry Bryn, Kerry asked me to send you our questionnaire that we used for the programming and preferences paper. I have attached it. I have absolutely no problem whatsoever with the replication - in fact I am very interested in what you may find. Good luck with everything and let me know if you need anything else Cheers Lee Original Message From: Kerry Courneya [mailto:kerry.courneya@ualberta.ca] Sent: February 12, 2003 5:57 A M To: bryna@interchange.ubc.ca Cc: Jones Lee Subject: RE: replication enquiry Hi Bryn, Thanks for your interest in our research. That would certainly be fine with me if you replicated the study. It is only one study restricted to Alberta and it certainly needs to be replicated. I have copied your e-mail to Lee Jones, who is the first author on the study and he should be able to forward you a copy of the questionnaire we used. Please keep us informed of your progress and we would be excited to find out your results when the study is complete. Good luck with the study and say hi to Susan for me. Kerry S. Courneya, PhD Professor and CIHR Investigator Faculty of Physical Education E-424 Van Vliet Center,University of Alberta Edmonton, Alberta, T6G 2H9 C A N A D A kerry. courneya@ualberta. ca www.per.ualberta.ca/kcourneya 78 SAQ ID SECTION A: EXERCISE BEHAVIOURS • This section asks questions about your current and previous exercise practices. 1. Since completing your breast cancer treatments (e.g. surgery, radiation and/or chemotherapy), on average, how often do you do the following activities during your non-work time, in a one-week period (when seasonally appropriate)? (Note: Only indicate a response for the activities you participate in) # of Times per Week (e.g. 1,2,3) Average Duration (# of minutes per session of activity) (e.g. 10, 15,20) # of Weeks per Year (out of a total of 52) a) Running/Jogging b) Cycling c) Swimming d) Walking e) Hiking f) Dance (professional/social) g) Skiing - cross country, telemark h) Skiing -downhi 11/sno wboarding i) Weight Training j) Exercise class/aerobics k) Yoga 1) Pilates m) Golf n) Tennis/squash o) Roller-blading p) Team Activities (e.g. soccer, volleyball, hockey, baseball etc.) q) Water Activities (e.g. kayaking, canoeing, dragon boating, etc.) r) Gardening/Yard Work s) Other (please indicate) -1- 80 SAQ ID 2. Since completing your breast cancer treatments (e.g. surgery, radiation and/or chemotherapy), on average, how often do you take part in: (Note: i f you do not take part in any exercise, please select item d below) Times per Week Average Duration (e.g. 1,2,3,) (Minutes per session of activity) (e.g. 10, 15, 20) a. STRENUOUS EXERCISE (heart beats rapidly, heavy sweating) b. M O D E R A T E EXERCISE (heart beats moderately, light sweating, challenging to carry on a conversation during the activity) c. MILD EXERCISE (heart beats slightly, more than when resting, no sweating, able to carry on a conversation with ease during the activity) d. • I do not take part in exercise. 3. Since completing your breast cancer treatments (e.g. surgery, radiation and/or chemotherapy) has the amount of exercise you do during an average week changed? (please check only one box) 1 • Yes, my exercise has decreased dramatically • Yes, my exercise has decreased somewhat 3 • No Change 4 • Yes, my exercise has increased somewhat 5 • Yes, my exercise has increased dramatically -2- 81 SAQ ID 4. Thinking back to your most recent treatment for breast cancer (e.g. surgery, radiation and/or chemotherapy), on average, how often did you perform: a. STRENUOUS EXERCISE (heart beats rapidly, heavy sweating) b. M O D E R A T E EXERCISE (heart beats moderately, light sweating, challenging to carry on a conversation during the activity) Times per Week Average Duration (e.g. 1,2, 3,) (Minutes per session of activity) (e.g. 10, 15,20) c. M I L D EXERCISE (heart beats slightly, more than when resting, no sweating, able to carry on a conversation with ease during the activity) d. • I did not exercise. Thinking back even more, to before your diagnosis with breast cancer, on average, how often did you perform: a. STRENUOUS EXERCISE (heart beats rapidly, heavy sweating) b. M O D E R A T E EXERCISE (heart beats moderately, light sweating, challenging to carry on a conversation during the activity) Times per Week Average Duration (e.g. 1, 2, 3,) (Minutes per session of activity) (e.g. 10, 15,20) c. MILD EXERCISE (heart beats slightly, more than when resting, no sweating, able to carry on a conversation with ease during the activity) d. • I did not exercise. -3- 82 SAQ ID SECTION B: FACTORS EFFECTING EXERCISE • This section reviews aspects of exercise that often affect regular participation. Please answer all questions. 6. Please respond to the following statements concerning regular exercise by placing an 'x' in the box that most accurately represents your thoughts for items a) through h): (Note: We define regular exercise as participation in a physical activity, for a minimum 3 times/week, for more than 20 minutes each session, with the intention of improving physical fitness and health) 5 4 3 2 1 In order for me to participate in regular exercise Strongly Agree Agree Neutral Disagree Strongly Disagree a) the exercise activity must be at a location close to where I live b) the exercise program/activity must be low cost or free c) the exercise activity must be short in duration (less than 30 minutes) d) the exercise activity must have a social component to it (opportunity to meet people) e) the exercise activity I choose must be safe (low/no risk of injury) f) the exercise activity I choose must be fun/provide enjoyment g) the exercise activity I choose must provide health benefits (i.e. increased flexibility, lower risk for heart disease, etc.) h) the exercise program I choose must offer a variety of activities -4- 83 SAQ ID SECTION C: EXERCISE PROGRAM PREFERENCES • This section asks questions about your exercise preferences. Be sure to answer the questions based on what you PREFER to do and not necessarily what you A C T U A L L Y do. • For each of the questions, please indicate your response by placing an ' X ' in the appropriate box. 7. My preferred exercise activity is (please select only O N E activity): 1 • running/jogging 2 D cycling 3 D swimming 4 D walking 5 D skiing 6 D weight training 7 D yoga 8 D Pilates y D team activities (i.e. soccer, volleyball, baseball, etc.) I 0 D individual activities (i.e. golf, squash, tennis, rock climbing, etc.) 1 1 • water activities (i.e. kayaking, canoeing, dragon boating, etc.) I 2 D gardening l 3 D household chores l 4 D other (please indicate) 8. I prefer my exercise to be... (please select only ONE response for each item in a through e below): a. • low intensity • moderate intensity 3 D high intensity • no preference b. 1 • the same activity each time or • different activities each time c. • supervised/instructed or • unsupervised/self-paced d. • competitive or • recreational e. . • scheduled (specific days/times) or • spontaneous/flexible -5- 84 SAQ ID 9. As a woman living with breast cancer, I prefer (please select only ONE box for each of the items a through d below): a. 1 • to exercise alone • to exercise with 1 or 2 other women who have had breast cancer • to exercise with 1 or 2 persons who have not had breast cancer 4 • to exercise in a group of women who have had breast cancer 5 • to exercise in a group of people who have not had breast cancer 6 • no preference b. 1 • to exercise at home • to exercise at a community fitness center 3 D to exercise outdoors 4 r j to exercise at a fitness center located at a cancer center 5 D no preference c. 1 • to exercise in the morning 2 • to exercise in the afternoon • to exercise in the evening 4 D no preference d. ' • to have permission from an oncologist to exercise 2 D to have encouragement from an oncologist to exercise 3 D to have an oncologist's referral to an exercise program 4 D to be shown specific exercises by an oncologist 5 D no preference -6- 85 SAQ ID SECTION D: EXERCISE COUNSELING PREFERENCES • This section asks you to focus specifically on physical exercise. Again, we define exercise as any physical activity done on a regular basis (at least 3 times per week, for a minimum of 20 or more minutes, at moderate intensity, with the intention of improving physical fitness and health. • For each of the questions listed, please indicate your response by placing an ' X ' in the appropriate box. 10. During your medical appointments with your oncologist. a. Was exercise discussed? • Yes (go to 10b) • No (go to question 11) b. If yes, who initiated the discussion? • Your oncologist 2 D You c. If yes, when did it occur? (please select only ONE response) 1 • Before treatment 2 H During treatment 3 D After treatment d. If yes, were you referred to an exercise specialist? • Yes (e.g. a physiotherapist) • No e. If yes, what kind of exercise specialist? ' • Physiotherapist " • Kinesiologist ' • Fitness Instructor at local gym ' • Other 3 D Don't remember 11. Would you prefer to be counseled about exercise at some point during your cancer experience (not necessarily by your oncologist, but by someone else)? (Note: For this study we define exercise counseling as the discussion/receipt of information regarding aspects of exercise (i.e. intensity, frequency, etc.) from a trained/certified professional). • No • Maybe *• Yes • No preference *Even if you responded NO to Question #11, please answer questions 12 through 16. -7- 86 SAQ ID 12. If you were to receive exercise counseling, from who would you prefer to receive it? (please select only ONE response)? 1 • oncologist 2 D nurse • exercise specialist affiliated with the cancer center 4 D exercise specialist affiliated with the community (e.g., Y M C A ) 5 D another person who has had cancer 6\3 someone else (specify) 13. After your diagnosis with breast cancer, if you were to receive exercise counseling for the first time, when would you prefer to receive it? (circle ONE response only) 1 2 3 4 5 6 Before During Immediately 3-6 months 7-12 months At least 1 year treatment treatment following after treatment after treatment after treatment treatment 14. If you were to receive exercise counseling, where would you prefer the counseling to take place? (please select only ONE response) 1 2 ^ • at the cancer center • at a local community/fitness center • at my home 15. If you were to receive exercise counseling, how would you prefer to receive it? (please select only ONE response). ' • face to face 2 D by telephone 3 Q on videotape 4 D on audiotape 5 D in a pamphlet/brochure 6 D over the Internet 16. If you were to begin an exercise program, when would you prefer to start it? (circle ONE response only) 1 2 3 4 5 6 Before During Immediately 3-6 months 7-12 months At least 1 year treatment treatment following after treatment after treatment after treatment treatment -8- 87 SAQ ID SECTION E: CONCLUSION - :•••:•:}• r • This part of the questionnaire is needed to help understand personal characteristics (e.g. age, education) and medical background. It is very important information for making sense of study results. Al l information is held in strict confidence and its presentation does not identify individual responses. 17. Your Age: years 18. What is the highest level of school you completed? (Please check one only) 1 • Some High School 2 D Completed High School 3 D Some University/College 4 D Completed University/College 5D Some Graduate School 6 D Completed Graduate School 7 D Other (please indicate) 19. Annual Family Income: ' •<$5000 2 D $5000-$14,999 3 D $15,000424,999 4 D $25,000-$44,999 4 D $45,000-$64,999 5 D $65,000-$84,999 6 D $85,000-$ 114,999 7 D >$115,000 20. How would you describe your main work/employment: I 7 ^ • Part-time employment • Full-time employment • Self-employment 4 D Temporarily unemployed 5 D Retired 6 a Student 7 D Homemaker 8 D Disability Pension 21. Height and Weight Information: Your weight in pounds: Your height in feet/inches: -9- 88 SAQID 22. How would you best describe your race or colour? • Caucasian (i.e. white) • Chinese 3 D African-Canadian 4 D Filipino 5 D Japanese 6 D Korean 7 D South Asian (e.g. East Indian, Pakistani, Punjabi, Sri Lankan) 8 D Native/Aboriginal Peoples of North America (e.g. North American Indian, Metis, Inuit/Eskimo) 9 D Arab/West Asian (e.g. Armenian, Egyptian, Lebanese, Moroccan) l 0 D Other (please specify) 23. Did your treatment for breast cancer include: (please circle) a) surgery Yes No b) chemotherapy Yes No c) radiation Yes No 24. Are you currently taking any medications for your breast cancer (please circle)? Yes No a. If yes, which one(s)? 25. Would you be interested in regularly attending (at least 3 times/week) an exercise program designed for breast cancer survivors at a local facility in your city/town? • Yes • No • Maybe Why or why not? (please explain) -10- 89 SAQ ID Please use this last page to make any written comments concerning this study/questionnaire. Thank you very much for taking the time to participate in this study. Please return this questionnaire in the postage-paid envelope enclosed in your survey package. We look forward to receiving your submission within the next tWO Weeks. ' "": • Dr. Susan'R'rHarris School of Rehabilitation Sciences, l'acult^of Medicine, University of British Columbia ' T325-2211 Wcsbrook Mali, Vancouver. B.C. V6T 2B5 . ->V"* 90 Appendix C Sample Size Calculation The formula for calculating sample size for estimating a proportion: Z 2 * ( p ) * ( l - p ) ss = m 2 where: Z = Z value (for a 95% confidence level or a alpha level of .05) p = the value of a proportion, expressed as a decimal percent m = margin of error, expressed as decimal (e.g., .05 = ±5%) Sample Size calculation for the proposed research: ss = q.96) 2 C81)(T-.8n (.05)2 = (3.8416V2 (.81) (.19) .0025 = .5912 .0025 = 236 where: Z= Z value (for a 95% confidence level or a alpha level of .05) p= proportion of 81% (.81) m= with a margin of error of 5% (.05) Based on a 50% response rate (RR), in order to obtain 236 completed surveys, I would need to mail out 472 self-administered questionnaires. From: Weiss N A . Elementary Statistics. (5 ed.) Reading, Mass: Addison-Wesley, 2002. 91 Appendix D Table of Specifications Variable Name Ql Q2 Q3 CM Q5 06 Q7 Q8 Q9 Exercise behaviours activity type • frequency • • • • • duration • • • • • since completing treatment • • during treatment • before diagnosis • Exercise barriers/facilitators location • cost • program duration • social companent • safety/risk of injury • fun/enjoyment • health benefits • variation of activity • Exercise program preferences activity type • intensity • variation of activity • program format • skill level • level of planning • location • social interaction • time of dav • oncolgist involvement • t o Appendix D Table of Specifications Variable Name QIC) Q l l Q12 OI3 Q14 Q15 Ql<> Q17 Q18 Q19 Q20 Q21 Q22 023 Q24 025 Exercise counseling preferences consultation practices • overall preference • source • time • location • method • program start • Demographic & medical variables Age • Level of education • Family income • Employment status • Height/Weight • Race/Colour • R/x - surgery • R/x - chemotherapy • R/x - radiation • Medications • Community based programs • Qualitative • Appendix G Questionnaire Cover Letter T H E U N I V E R S I T Y O F B R I T I S H C O L U M B I A S c h o o l of Rehabi l i ta t ion S c i e n c e s Facu l ty of Med ic i ne T325-2211 Wesbrook Mall Vancouver, British Columbia V6T 2B5 Phone: 604.822.7392 Fax: 604.822.7624 Web: www.rehab.ubc.ca Identifying the Post-Treatment Exercise Preferences of Women with Living with Breast Cancer Dr. Susan R. Harris (Principal Investigator) Dr. Catherine Backman (Co-Investigator) Dr. T. Gregory Hislop (Co-Investigator) Dr. Charmaine Kim-Sing (Co-Investigator) Bryn Askwith, BA, CAT(c) (Research Assistant) Dear Ms. <Surname>, I am writing to request your consideration and potential participation in a study on the exercise preferences of women living with breast cancer that I am conducting through the University of British Columbia. I greatly appreciate your willingness to take a few moments to read this letter. According to records at the BC Cancer Agency, you were diagnosed and treated for breast cancer at some point between January 2000 and December 2005 (inclusive). As a result, I would like to ask for your assistance with our research. Purpose of the Study The purpose of this study is to identify the exercise preferences of women with breast cancer who have completed treatment in British Columbia (B.C.). Through this study we hope to provide an avenue through which women with breast cancer can express their exercise preferences to both medical professionals and community-based health-care providers. A third aim of the research is to use study findings to influence and help shape the design of exercise programs for breast cancer survivors in B.C. -3- 96 In addition, the results of this survey will contribute to the master's thesis research for Ms. Bryn Askwith, a graduate student in the School of Rehabilitation Sciences at UBC. Study Procedures & Your Involvement: A self-administered questionnaire is the sole method of collecting information for this project. As a woman with breast cancer, you are being asked to complete this questionnaire and return it in the postage-paid envelope provided in the survey package. Your assistance with this research will provide insight for medical, rehabilitation and fitness professionals regarding exercise preferences for the increasing number of women living with breast cancer in the province. Throughout the questionnaire, you will be asked a series of questions regarding your exercise preferences. There are no incorrect answers. You are simply asked to provide information that is as honest and accurate as possible. The questionnaire should take less than 20 minutes to complete. The information gained from this research will be written up in publications and/or reports and will be presented at both academic and community events related to exercise and cancer rehabilitation in hopes of informing all parties involved in the collaborative process of breast cancer rehabilitation. A l l information you provide will be kept strictly confidential and your name will not be used when reporting data or results. Confidentiality: Prior to distribution of all survey packages, each questionnaire has received a study number and therefore, contains no personal identifying data. A separate administrative file that links participant names and addresses with these study numbers is kept in a password protected file, in a locked, secure storage facility at the School of Rehabilitation Sciences, University of British Columbia. Refusal and Withdrawal: Your participation in this study is entirely voluntary. You may refuse to participate or choose to withdraw from the study at any point in time. You participation, refusal or withdrawal will not affect your present or future health care and/or access to medical services. Risks and Benefits: There are no foreseen risks in your completion of this questionnaire. Potential benefits related to participating in the study include a sense of contribution from being involved in a study which could help other/future cancer survivors, and/or result in more appropriate educational initiatives, support programs, social policy and clinical practice in oncology-specific health care settings. -3- 97 

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