THESIS HURS 1998 G454a c.2 Gienger, Diane J. Adherence to mammography guidelines in women 1998. Adherence to Mammography Guidelines in Women with and without a Family History of Breast Cancer by Diane J. Gienger, RN, BSN Submitted in Partial Fulfillment of the Requirements For the Master of Science in Nursing Degree Approved by: Alice Conway, R2^< PhD. Committee Chairperson of Edinboro University of Pennsylvania Mai ,ou Keller, CRNP, Ph D. Committee Member of Edinboro University of Pennsylvania JfpatX, Geisel, RN, Ph.D. Z;^L-Committe Member of Edinboro University of Pennsylvania Date Abstract Adherence to Mammography Guidelines in Women with and without a Family History of Breast Cancer The purpose of this study was to determine if women with a family history of breast cancer are adhering to the recommended guidelines for mammography use more often than women without a family history of breast cancer. Literature indicates these women are at high risk for contracting breast cancer and compliance with mammography screening is low (Center for Disease Control, 1997). An existing survey authored by Dr. Anna Miller (Miller & Champion, 1996) that examined demographics, compliance, attitudes, beliefs, influencing factors and knowledge of mammography usage was utilized. The sample consisted of 90 women from 2 sites in northwestern Pennsylvania. The results from this study indicate that women with a family history do not adhere to guidelines more than women without a family history. The compliance rate of having at least one mammogram was 80% in the group with a family history and 78% in the group without a family history of breast cancer. This is higher than what is reported in the literature. Having a health care provider recommend a mammogram was the greatest measure of adherence. The results were consistent with Dr. Miller’s study, and indicate that primary care providers are in a valuable position to influence compliance. ii Acknowledgments I would like to take this opportunity to thank Dr. Alice Conway for her support and direction as chairperson of this project, and Dr. Geisel and Dr. Keller for their assistance as members of my committee. My sincere gratitude to Shari Powell, MBA for her time and expert advice on my data analysis. I would like to thank the women of northwestern Pennsylvania who participated in this project, and Ann Lee, CRNP for her years of support and inspiration. Finally, a special thanks goes to my husband Ed, and my children Eddie and Megan for their patience, support and assistance throughout this project. iii Table of Contents Content Page Abstract. ii Acknowledgments. in List of Tables. vii List of Figure. viii Chapter I - Introduction 1 Background of the Problem 1 Theoretical Framework 2 Statement of Purpose 5 Definition of Terms. 6 Assumptions. 6 Limitations 7 Summary. 7 Chapter II - Review of the Literature. 9 Incidence and Prevalence of Breast Cancer 9 Risk Factors. 10 Mammography. 11 Guidelines for Mamography Use. 12 Compliance 13 Summary. 15 iv Chapter III - Methodology, 17 Hypothesis, 17 Research Design 17 Operation Definitions 17 Sample and Procedures 18 Informed Consent, 18 Instrumentation, 19 Pilot Study. 20 Analysis of Data. 20 Summary, 21 22 Chapter IV - Results, Response Rate of the Eligible Population 22 Profile of Respondents 22 Comparison to the Benchmark Study. 23 Comparison of Respondents with a Family History. 28 Health Care Practices. 29 Attitudes Toward Breast Cancer, 29 Attitudes Toward Mammograms. 29 Adherence to Guidelines. 30 Demographics, Belief s and Attitudes. 31 v Influencing Factors 32 Health Care Practices. 32 Summary. 33 Chapter V - Discussion and Recommendations 34 Discussion. 34 Recommendations. 36 Summary 37 References. 38 Appendixes 42 A. Consent from particpating sites. 42 B. Cover letter and survey. 44 C. Letter of Permission - Survey Usage. 58 vi Influencing Factors. 32 Health Care Practices 32 Summary. 33 Chapter V - Discussion and Recommendations. 34 Discussion 34 Recommendations 36 Summary. 37 References 38 Appendixes 42 A. Consent from particpating sites 42 B. Cover letter and survey 44 C. Letter of Permission - Survey Usage. 58 vi List of Tables Table Page Tablet. Age Demographic. 23 Table 2. Income Demographic. 24 Table 3. Maritial, Race and Employment Demographic. 25 Table 4. Comparisons to Benchmark study-mammography usage.. 26 Table 5. Comparisons to Benchmark study-healthcare practices 27 Table 6. Beliefs about breast cancer. 28 Table 7. Attitudes towards breast cancer. 30 Table 8. Attitudes towards mammograms. 30 Table 9. Adherence to guidelines. 33 vii List of Figure Figure Page Figure 1. The Health Belief Model viii 4 1 Chapter 1 Introduction This chapter provides a brief overview of the prevalence of breast cancer today and the benefits of mammography screening. Becker’s Health Belief Model is used as the theoretical framework for this study (Becker, 1974). Assumptions, limitations and definitions of terms are provided. Background of the Problem Breast cancer is the most common type of cancer in women and the second leading cause of cancer death in American women (American Cancer Society [ACS], 1997). Almost every person seen in clinical practice today has been affected by this disease, either the patient, a family member, a friend, or a neighbor. The average lifetime risk for a woman in the United States of developing breast cancer is approximately 1 in 9 (United States Public Health Service [USPHS], 1994). Currently, breast cancer cannot be prevented; however, increased survival rates can be obtained through early diagnosis (Miller & Champion, 1996). Mammography is the most effective means of early detection for breast cancer, with sensitivity estimates of 70% to 90% and specificity estimates of 90% to 95% (USPHS, 1994). The American Cancer Society estimates that in 1995 alone, some 33,800 women aged 40 to 49 years were diagnosed with having breast cancer (Feig, 1996). A woman is considered to be at high risk for developing breast cancer if she has a sister, daughter, or mother with a history of breast cancer. A positive family history of breast cancer raises the risk two to three times for developing the disease 2 (Constanza, Stoddard, Gaw, & Zapka, 1992). Annual mammography is recommended for women with a family history of breast cancer (Bowman, Braly, Johnson, & Mikuta, 1996). However, despite the effectiveness of mammography in reducing mortality, screening rates remain low, with only 21% adherence in the past three years (Miller & Champion, 1996). Ironically, many of the women at the highest risk for cancer are among those least likely to be screened (Bowman, et al., 1996). Theoretical Framework The theoretical framework utilized in this research is Becker’s Health Belief Model as it applies to mammography usage. The Health Belief Model is a popular conceptual framework in nursing, especially in studies focusing on patient compliance and preventative health care practices (Polit & Hungler, 1995). The model postulates that health-seeking behavior is influenced by a person’s perception of a threat posed by a health problem, and the value associated with actions aimed at reducing the threat (Becker, Haefner, & Kasl, 1977). M.H. Becker (1974) based his psychosocial model on the work done by I.M. Rosenstock in the 1950's, who looked at reasons why the public failed to take advantage of Mobil chest X-ray’s being offered to screen for tuberculosis. The Health Belief Model is widely used in explaining why people do or do not take health promotion measures (Fulton, et al, 1991). In this study, the Health Belief Model is used to identify factors which contribute to the adherence of mammography guidelines. There are five basic components described in Becker’s Health Belief Model 3 (See Figure 1). The first component, perceived susceptibility, refers to a person’s perception that a health problem is personally relevant or that a diagnosis of illness is accurate (Becker, et al., 1977). It is the individual’s own belief on how susceptible he is to the particular illness. According to the Health Belief Model, health behaviors are more likely if an individual feels susceptible to a condition. The second component, perceived seriousness, looks at how serious the person thinks the illness will be for them if they do have it, and the impact it may have on their life. The third component, perceived threat of a disease, is the combination of what the person considers the perceived susceptibility and perceived seriousness to be. These components equal the perceived threat for the patient (Stein, Fox, Murata & Morisky, 1992). The fourth part of the model is the modifying factors. These factors include demographic variables such as age and gender. It addresses the question whether one gender take advantage of health promotion more than the other. It considers education levels in relation to rate of compliance. It examines if some races are more likely to comply with health promotion than others. The social and psychological factors examined include the expectations of society and socioeconomic class. The structural variables examined are the patient s own knowledge of the disease, including peer pressure. Internal or external cues to action are other modifying variables (Becker, 1974). An internal cue is described as the feeling that a person may be getting the illness in question. An external cue is described as a public figure coming forward to 4 c o u < wo T5 O O JC □ 0 c £ O *= o CD 0 'i_ 0 0 -Q ■u > TJ 0 > > c o c c *o S g c 05 0 r L2 b Q•0 P Q ®£ si 0 C 0 C _ > c I? x: $ E 3 Eo (D 0 > O (5 = 0 £ £ a-o CL QO 0 0 o 0 CD S2 o o *■» 0 LL U) C ■> T5 o 0 _Q 0 t_ 05 > O x: CL 0 i— CD O E 0 Q n 0 t— 0 > 75 o CD O O JZ o cd Q_ O O O CD X cd _0 0 JD 0 c E o 0 0 CD 7d H— o 0 75 £ ro cd > 0 ■a 0 CD > L_ 2 o -4-» 0 0 -+-^ 0 0 O o ’> "0 CD 0 < 0 0 0) £ Z5 O £ “C5 0 CD > CO 0 U 0 CL CO 0 > •Q 0 CD CD 75 0 c o "5 ll 0 ■q o 7d 1) CQ £ 75 (D C o Q. 0 O Ik 9- = O Q_ 0 □ 2 S c CD I ZE 0 0 JZ k 0 .5 (D 05 + 0 m CD i_ 0 CD CD 0 CD 0 o «s p ■0 CD ®=o 0 CL H 0 =5 O) Ll 5 disclose and call attention to a particular illness. Another example would be a clinician reminding a patient that a screening test is due. The last component of the Health Belief Model is likelihood of action. This component describes the likelihood of the person actually taking the preventative action. Likelihood of action includes the perceived benefit of the preventative action, or that the test will be accurate, minus the perceived barriers to action. The perceived barriers include factors such as the high cost of a test, whether they have access to the test, or any discomfort that may be involved in taking the test. Demographics also affect and influence these perceptions and impact likelihood of taking action. Nurse practitioners are in a position at this stage to educate women with a family history of breast cancer thereby influencing perceptions. They can advise patents if they are at an increased risk of developing the disease, and let them know of the screening tools available today. It can be important for clinicians to be aware of the factors that explain why people do or do not take advantage of these screening services when they have been made available to them. Statement of Purpose The literature shows that cancer screening in women has remained substantially lower than national health objectives for all types of malignancies (Bowman, et al., 1996). The purpose of this research is to determine if women age 40 years and older, with a family history of breast cancer, are adhering to recommended mammography guidelines. A comparison between mammography adherence in women with and without a family history will be examined. This will be determined through a self- 6 administered survey of women who are at least 40 years old who have a positive family history of breast cancer. A convenience sample of patients in two sites, an Internal Medicine practice and a rural health clinic, both located in northwestern Pennsylvania will be used. Definition of terms The terms of this study are identified as: 1. Family history of breast cancer is breast cancer in a first-degree relative such as a sister, daughter, or mother (United States Public Health Service Handbook, 1994). 2. Mammography is low dosage X-rays of the breast. (Stein, et al., 1992) 3. Mammography guidelines are defined as women 40 years of age and older who have a family history of breast cancer or who are otherwise at increased risk should have annual mammography.(United States Public Health Service Handbook, 1994). 4. Adherence is a clinician-patient partnership where both agree on a course of treatment that the patient agrees to undertake (Platt, Tippy, & Turek, 1994) Assumptions The assumptions of this study are identified as follows: 1. The participants of the study can understand the questions and terms used in the survey. 2. The participants of the survey will honestly answer the questions concerning their medical background. 7 3. The survey correctly measures variables associated with obtaining a mammogram. Limitations The limitations of this study are as follows: 1. This study used a convenience sample obtained from two sites in Northwest Pennsylvania which may effect the generalizability of the study. 2. Information required self- recall of events (mammography) that may have happened over a long period of time, and is dependent of the respondent’s memory. 3. Women with unknown family history cannot be classified. Summary Breast cancer affects one out of every nine women in the United States (American Cancer Society, 1997). Mammography has been proven to increase survival rates in women with breast cancer (Harris, Lippman, Veronesi, & Willet, 1992). Improved survival rates are related to the increased availability and usage of mammography, yet usage is still substantially lower than the recommended health guidelines (Cady, Evans, & Feig, 1997). Women who have a family history of breast cancer are at a high risk for developing breast cancer. The purpose of this study is to investigate the adherence to mammography guidelines in women age 40 years and older, with a family history of breast cancer. This information was determined through a self-administered survey distributed in two medical practices in northwestern Pennsylvania. Assumptions, limitations and terms utilized in this study have been provided. 8 The Health Belief Model, developed by Becker (1974), was used as the model for this study. The Health Belief Model has often been used to organize theoretical predictors of preventive health actions, including individual perceptions of disease, individual perceptions of preventive actions, and modifying factors such as social, demographic, and structural characteristics (Fulton, et al., 1991). Once these predictors of health actions are identified, the nurse practitioner is in a better position to help educate these patients towards better compliance. 9 Chapter II Review of the Literature This chapter provides a review of current literature on mammography and breast cancer, including risk factors. The purpose of this chapter is to provide the reader with the incidence and prevalence of breast cancer today, risk factors involved, and mammography effectiveness, usage and guidelines. It also examines the literature on compliance of women to recommended mammogram guidelines. Incidence and Prevalence of Breast Cancer Breast cancer is a major cause of concern for women in the United States today (Harris, et al, 1992). The latest figures from the American Cancer Society report that in 1997, breast cancer will be diagnosed in over 180,000 women and almost 44,000 women will die from this disease. At the present time, breast cancer is the second leading cause of cancer death among American women following lung cancer, and the leading cause of death for those aged 40 to 55 years (Abraham & Seremetis, 1997). The incidence of breast cancer in the United States has increased over the last decade (Harris et al, 1992). In their study of recent trends in cancer morbidity and mortality, Frey, McMillian & Cowan (1992) found that one of every nine women in the United States will develop breast cancer. Game, Aspegren and Balldin (1997), in looking at recent trends in breast cancer, found that mortality had declined significantly for the first time recently. This data showed a 6.8% decrease in deaths from 1989-1993, the lowest it has been since 1950. They believed use of mammography to be a factor in the improved survival rate. 10 Risk Factors There is no known cause or methods for preventing breast cancer from occurring (Constanza, et al, 1992). Genetic and environmental factors are thought to play a role (Harris, et al, 1992). There are however, established risk factors associated with the disease. These include positive family history in a first degree relative, early menarche and late menopause, late age at first child birth (> 30 years), nulliparity, exposure to radiation and increasing age (Abraham & Seremetis, 1997). The most recent risk factor identified is having the Breast Cancer [BRCA] 1 gene (Claus, Schildkraut, and Thompson, 1996). This research includes the discovery of the genes which are believed to control hereditary breast cancer. These genes are believed to account for 90 % of early- onset hereditary breast cancer. Their research indicates that a mutation of the BRCA 1 gene leads to a estimated 55% risk of developing breast cancer by age 60 and a 27% risk by age 80. Sattin, et al. (1985) studied family history and the risk of breast cancer. They found that women who had an affected first-degree relative had a risk of 2.3 times more than women without a family history of the disease. Prior to the discovery of the BRCA genes, family history of breast cancer was identified as the highest of the relative risk factors (Harris, et al, 1992). Sattin, et al. found that a woman with a mother or a sister with breast cancer had an especially high incidence if that relative developed breast cancer before menopause (2.8 fold increased risk). The study also found that if both a mother and a sister had breast cancer, they had a greater risk than a woman with only one affected first degree relative (14 fold vs. 2.3 fold risk). 11 Mammography Although at this time there is no primary prevention for breast cancer, there are several secondary screening tools available. These include self- breast examination, clinical breast examination, and mammography (Bowman, et al. 1996). Mammography has been defined as low dose x-rays of the breast to detect any abnormalities (Stein, et al, 1992). Mammography has been the most successful screening tool (Harris, et al, 1992). Mammography has reduced the risk of death from breast cancer in the United States by 19-30% in women aged 50-74 years old (Center for Disease Control [CDC], 1997). A meta-analysis by Kerlikowske, Grady, Rubin, Sandrock, & Emster (1995) concluded that screening mammography significantly reduces breast cancer mortality in women 26% after nine years of follow up. This study looked at women age 50 to 74 years and determined that there is a benefit with mammography use regardless of number of mammographic views taken, the screening interval or duration of follow­ up. Breast cancers detected early have a better prognosis than cancers detected in late stages before the tumor metastasizes (Harris, et al, 1992). There has been controversy in the effectiveness of mammography screening for women who are 49 years old and younger. Taber, Fagerberg, and Duffy (1992) reported in their study that there is no statistically significant reduction in mortality in women age 40 to 49 years who have mammogram. This may be attributed to more dense, fibroglandular breast tissue which makes interpretation difficult. A recent metaanalysis by Sickle and Kopans (1995) however, shows a 21% reduction in mortality 12 for women in this age group who had an annual mammogram. In recent years, mammography has been improved and technology h;tas developed that has increased visualization of the breast and reduced exposure to radiation (Harris, et al, 1992). In mammography, both breast views are compared by symmetry of architecture, positioning, and distribution of density .Two standard views are obtained when a screening mammogram is ordered; the medialateral oblique view which shows the breast compressed along a plane that extends through the nipple from the upper outer quadrant to the lower inner quadrant, and the craniocaudal view, which shows compression applied from the top to the bottom of the breast (Abraham & Seremetis, 1997). The patient receives only minimal radiation from the procedure, and no case of breast cancer has been shown to result from having a mammogram (Cady et al, 1997). Guidelines for Mammography Use The benefits of breast cancer screening to reduce mortality in the population can be achieved only if screening guidelines are followed and a large population of women receive screening examinations regularly (CDC, 1997). There has been change and debate in the recommended screening guidelines for women and mammography in recent years. Most organizations, including the American Cancer Society and the National Cancer Institute revised their guidelines in March of 1997. The current recommendations are as follows: The National Cancer Institute is recommending screening mammogram eveiy 1-2 years for women aged 40 years and older if they are at average risk for breast cancer, and annually if they are at high risk. The American 13 Cancer Society (1997) now recommends annual mammography for all women aged 40 years and older. This was an increase in frequency from their earlier guidelines which had recommended only every 1-2 years (Abraham & Seremetis, 1997). However, the U.S. Preventive Task Force (1996) recommends screening mammogram every 1-2 years for women aged 50-69 years. It is recommended that a high-risk woman who is younger also receive a screening mammogram. Results of a study done by Kerlikowske, Grady, Barclay, Sickles & Ernster (1996) show that a higher proportion of invasive cancers among women aged 40-49 years may be detected by annual screening as opposed to screening every other year, providing support that women beginning at age 40 benefit from this procedure. A study done by Feig (1995), suggested that annual screening of women aged 40-49 years may result in the same mortality reduction as women 50-75 years old at 2 to 3 year intervals. Harris et al. (1992) state that the most frequently diagnosed cancer for this age group is ductal carcinoma in situ, which may not progress to invasive cancer at all, and that false positive results are more often seen in younger women. Compliance In order for mammography to be effective, compliance to the recommended guidelines need to be followed. At the present time, adherence to all medical treatments and recommendations has been poor, with only one third of women following recommendations completely (Hatt, Tippy, & Turk, 1994). Results of the National Cancer Institute Screening Consortium (1990) identified only 25-41% of all women as having had a mammogram within the las. year. Th. Center for Disease 14 Control reported that from 1989 to 1995, the percentage of women over age 40 who received a mammogram during the preceding 2 years, had increased in the 39 states who participated in the study . This increase ranged from 9-45% mammography utilization of women over the age of 40 years per state (CDC, 1997) The Health Belief Model (Becker, 1974), the theoretical framework for this study, looks at predictors of compliance. These predictors include the perceived susceptibility of contracting the disease, the perceived personal harm related to actually having the disease, the positive attributes related to the screening procedure its self, social influences and socio-economic status, and cues to action (including clinician recommendation and reminders). It also looks at knowledge about the disease, perceived control over the disease, and confidence that the screening procedure will be accurate. According to Champion (1991), who looked at these factors in breast cancer detection, susceptibility, social influence and knowledge are related to increased mammography use according to guidelines. Of the adherent group, 64% were predicted by these factors. Knowledge of the disease rated the highest predictor (discriminant coefficient of 0.75), followed by social influence (discriminant coefficient of 0.48), and susceptibility to the disease (discriminant coefficient of 0.36). Results of the National Breast Cancer Screening Consortium (1990), found that the two most common reasons for non-compliance were lack of physician recommendation (cues to action), 12-42% depending on the site, and lack of knowledge that they needed a mammogram, 40-67% depending on the site. Kaplan, Weinberg, Small & Herndon (1991), looked at the behaviors ofwomen a. high risk for 15 breast cancer. They found that their mammography compliance was not substantially different from that of women without risk factors (37% vs 15-30%). According to Fulton, et al. (1991) in a study of predictors of breast cancer screening, the perceived benefits of mammography were more predictive of a women having a mammogram (41%) than their perceived risk of contracting breast cancer (30%) or the perceived severity of actually having the disease (36%). Summary This chapter has provided a review of the literature on breast cancer, mammography and compliance. Breast cancer is increasing in the United States with one out of every nine women affected by the disease. It is the second leading cause of cancer death among women. There has been an increase in incidence and for the first time, a decrease in mortality (ACS, 1997). Established risk factors associated with breast cancer such as a family history of breast cancer in a first-degree relative increasing a woman’s risk of contracting cancer by 2-3 times were discussed. The recent discovery of the genetic marker BRCA 1, was also discussed. Mammography as the most effective screening tool for the disease was discussed. The many changes in the guidelines for mammography use were identified, and the controversy in the use of mammography in women under age 50 years was identified. The technological advances that have increased the visualization of the breast and reduced exposure to radiation were identified. The historically poor compliance with mammography was discussed. The 16 several predictors of compliance according to the Health Belief Model (Becker, 1974), the theoretical framework for this study were identified. The current finding that having a high risk for breast cancer does not correlate with an increase in mammography use was noted. 17 Chapter III Research Methodology This chapter describes the methodology utilized in this study, included in this chapter are the hypothesis, research design, procedures, sample and Wormed consent. Hypothesis Women with a family history of breast cancer adhere to mammography guidelines more frequently than women without a family history of breast cancer. Research Design This study utilized a non-experimental survey research design, and was a comparative, descriptive study. The goal of the study was to gather information regarding the behaviors and influencing factors of susceptibility, health motivation, social influence, benefits and barriers in women aged 40 and over with a family history of breast cancer, on seeking mammography and present the differences in those that adhere to guidelines and those who do not. Operational Definitions 1. Mammography is low dose X-rays of the breast for screening or diagnostic purposes. 2. Family history of breast cancer is a diagnosed incidence of breast cancer in a sister, mother, daughter, grandmother, aunt or cousin. 3. Susceptibility is an individual’s own belief on how likely she is to contract a disease. 4. Health motivation is how likely an individual is to seek health promotion and 18 disease prevention. 5. Social influence is the role of influence that society, famiiy .nd fads play in determining if a health promotion measure is taken or not. 6. Benefits are the positive aspects of engaging in a health promotion behavior such as detecting a disease early or ruling out a disease in an individual. 7. Barriers are the factors which prevent an individual from seeking health promotion such as cost, convenience, fear and embarrassment. Sample and Procedures The convenience sample was women age 40 years or older. The women all resided in the United States and read English. This study utilized two groups for convenience sampling in order to obtain a more representative socio-economic sample. Consent was obtained from participating sites (Appendix A). The survey (Appendix B) was given to women who visited either an Internal Medicine Practice or a rural health clinic in northwestern Pennsylvania. The receptionist at the front desk offered the women a survey to fill out while they waited to see the clinician. The survey included a cover letter with directions and informed consent attached. There was a box in the inner office where the surveys were placed after completion, where they were later picked up by the researcher. The time frame of approximately two weeks was given for the completion and collection of surveys. A combined total of 90 surveys was collected from these sites. Informed Consent An introduction accompanied the survey to allow the participants to know the 19 purpose. The completion and return of the survey was deemed informed consent. All data remained confidential and anonyi'mous. The participants were asked not to put their name on the survey. The data was reported in the aggregate. Instrumentation A survey was utilized as the research tool. An existing survey created to study mammography use in women was obtained from the author, Anna M. Miller, RN, DNS, Professor of Nursing at Indiana University, Indianapolis. Permission was granted to use the survey or any portion of it for this research (Appendix C). Survey questions were taken from prior mammography research and included the National Cancer Institute (NCI) “core” questions about breast cancer screening (National Cancer Institute Breast Cancer Screening Consortium, 1990). Content validity for Dr. Miller’s survey was reviewed by experts from five nationally known breast cancer researchers. The reliability for the five attitudinal scales was 0.89 to 0.93 for susceptibility, 0.80 to 0.84 for health motivation, 0.77 to 0.94 for social influence, 0.68 to 0.80 for benefits, and 0.84 for barriers. The construct validity had been tested using factor analysis and multiple regression. (Miller & Champion, 1996). The first page consists of information describing the purpose of the study and instructions on completing the survey. Informed consent by filling out the survey was explained. Part A consists of questions about mammograms that were done in the past. Part B consists of questions about personal feelings regarding breast cancer. The five-point Likert scale was used for these questions. Responses range form “strongly agree” to “strongly disagree. Part C also used the Likert Scale and was 20 about beliefs and feelings about getting mammograms. Part D consisted of questions regarding personal knowledge about breast cancer and mammograms. Part E asked questions about general health care. Part F consisted of questions about personal health and their health history. Part G was about influencing factors from other people. The final section consisted of demographic questions. Minor modifications made to the survey include changing the age of women sampled from 50 years old to 40 years old. This was done due to the recent changes in mammogram recommendations lowering the age of beginning recommended screening to 40 years. The women aged 50 years and older were compared with Dr. Miller’s findings during data analysis to insure validity. Several issues dealing with insurance and other preventative health services were also eliminated, since they were not relevant with the hypothesis. Pilot Study The survey was piloted by eight members of a northwestern Pennsylvania women’s social organization. None of these women were used in the actual study. Feedback on clarity of content and length of time to complete was requested. No changes were made in the content of the original survey. The survey took 10 minutes to complete. Analysis of Data Analysis of the data was performed using Lotus 1-2-3 computer software package. The z-test, the test for difference between proportions from two samples was used (Hamburg, 1997). It was calculated thatJi< 012, and differences do exist at 21 the 95% confidence level, with 12% being a significant difference. Percentages were calculated to describe and analyze the data from the study. The data was compared against the original study to insure validity. Summary The goal of this study was to determine if women with a family history of breast cancer are adhering to recommended mammography guidelines more than women without a family history of breast cancer. Influencing factors of barriers, beliefs, attitudes and knowledge were also evaluated. This was done through a self­ administered survey obtained from Anna M. Miller. RN, DNS. Surveys were placed in two sites over a period of 2 weeks. The surveys were collected by the researcher and data analysis was performed. Comments were invited but not received. 22 Chapter IV Results This study was undertaken to determine if women with a family history of breast cancer adhere to recommended guidelines, and what were the influencing factors. The results of the study are presented in this chapter and tables are used to compare and contrast the groups. Response Rate of the Eligible Population The survey (Appendix B) was given to women visiting either an Internal Medicine Practice or a rural health clinic in northwestern Pennsylvania. The total respondents equaled 90. Respondents were screened by knowledgeable office personnel for eligibility (age 40 years and older) at both sites by consulting the patient chart if needed. The response rate for the internal medical practice was 66% (33) and 57% (57) for the clinic. The survey took approximately 10 minutes to complete. This study data was compared to the Benchmark study from which the survey was obtained (Miller & Champion, 1996) for validity purposes, using this study’s respondents age 50 and older. Profile of Respondents There were no significant differences between the group with and the group without a family history of breast cancer in demographics of age, marital stat household income, ethnicity, education level, occupation, type of neighborhood, or number in household. The median age of the respondents was 51.0 years, with a range of 23 40-80 years (Table 1). Median income was $55-74,000 per year (Table 2). For education, the median income was 13 years (Table 2). The majority of the respondents were married (82%), white (96%), and considered themselves homemakers (51%)(Table 3). Table 1. Age Demographic with and without family history Age Total With History Without History Age 50+ Benchmark <45 27% 23% 29% 0% 0% 45-54 46% 50% 42% 51% 46% 55-64 16% 14% 18% 27% 65+ 12% 14% 11% 22% 49% <50 47% 41% 51% 50+ 54% 60% 49% 100% 100% Median 51.0 yr. 50 yr. 52.0 yr. 65.7 yrs. Note. 45-64 yr. was combined in benchmark study (n-1083). Comparison to the Benchmark study To compare this investigator's data with the benchmark study, respondents age 50 years and older were used, since this was the age used in their study. The northwestern Pennsylvania [NWPA] respondents were less likely to be age 65 or older (49% vs. 22%) respectively and more likely to be married (55% vs 84%) and homemakers (10% vs 53%), while benchmark respondents were more likely retired. This study had a higher percentage of white population (98% vs 75%) and a 24 lower population of black respondents (2% vs 22%), than the Benchmark (Table 3). Table 2. Income Demographic Income $ Total <$20,000 1% 2% 0% 0% 20-40,000 28% 31% 24% 24% 40-54,000 18% 19% 18% 22% 55-74,000 17% 10% 22% 20% 74,000-up 28% 27% 29% 29% Median With History Without History 50+ $55-74,000 $40-54,000 $40-54,000 Benchmark $40-54,000 $30-40,000 Note. Benchmark breakdown data unavailable. Comparison with the benchmark study on key measures related to breast cancer and mammography usage indicate the following similarities: frequency of having a mammogram, the person recommending getting a mammogram (Table 4). Frequency of having a regular health care provider, likelihood of having a mammogram next year, incidence of having a visits to the doctor are also similar (Table 5). friend with breast cancer, and number of 25 Table 3. Marital, Race and Employment Demographics Total With History Without History 50+ Benchmark Status 2% 2% 2% 0% 7% Married 82% 73% 91% 84% 55% Other 15% 25% 7% 16% 36% White 96% 95% 96% 98% 75% Black 2% 2% 2% 2% 22% Other 2% 2% 2% 0% 3% Single Race Employment Employed 40% 39% 40% 26% 31% Retired 11% 14% 9% 20% 50% Homemaker 46% 40% 51% 53% 10% Note. Marital status ‘other’ refers to widowed, separated or divorced 26 Table 4. Comparisons to Benchmark Study NWPA Study Ever had mammogram 90% Benchmark Study 85% Frequency of mammograms This year 31% 35% One year ago 55% 50% 2 years ago 39% 43% 3 years ago 33% 30% 4 years ago 27% 25% 5 years ago 22% 20% 0% 4% None in last 5 year Recommended by Doctor 65% Respondent request 24% 75% 17% 27 Table 5 Comparisons to Benchmark study on health care practices. NWPA Study Benchmark Study Annual exam (last 5 years') 0 6% 5% 1 4% 6% 2 14% 8% 3-5 67% 56% >5 8% 20% Regular health care provider 96% 93% Type of provider Chiropractor 0% 0.5% Family/G.P. 41% 30% Internal Medicine 31% 30% Nurse Practitioner 12% 0.5% OB/GYN 10% 6% Osteopath 4% 0.5% Differences were found in the incidence of the number of relatives with breast cancer which is lower in the NWPA study. The proportion seeing a family medicine doctor or Nurse Practitioner as their primary care provider was higher in the Edinboro study. Adherence to mammography guidelines significantly higher at the one year 28 level (72% vs 49%) in the benchmark, but comparable at the three year level (24% vs 21%). Comparison of Respondents with a family history vs. those without a family history Beliefs and Knowledge about Breast cancer In the group with a family history of breast cancer, 36% correctly answered that 1 out of 9 women will get cancer in their lifetime, vs 18% in the non-family history group (Table 6). The question of a mother or sister having cancer as being a high risk was answered correctly in both groups with no significant difference (78% with a family history vs 81% without). Knowledge regarding the new guidelines of yearly mammogram starting at age 40 was significantly higher in the group with a family history, with 64% vs 38% answering correctly. The guidelines for women over 50 years was answered correctly with no significant differences in the groups. Table 6 Beliefs about breast cancer Will get breast cancer in their lifetime Family History Without Family History 1 out of 5 27% 36% 1 out of 9 36%* 18% 1 out of 25 14% 16% Not sure 23% 31%* n=90, *p< 0.12 29 Health Care Practices There were no differences between groups in having a regular health care provider, or what type of provider it was. There were no differences in access to health care or what type of insurance the respondent had. A significant difference was found in a doctor recommending having a mammogram (75% with a family history vs. 62% without a family history). For having regular doctor checkups, the respondents with a family history of breast cancer had a 43% rate of having a regular checkup every year vs. 28% in the non family history group. Attitudes toward Breast Cancer Although there was no difference in behavior towards obtaining a mammogram, there were some significant differences in attitudes toward breast cancer. In the group with a family history, 14% felt they were extremely likely to get breast cancer in the future, whereas 0% of the non-family history felt this way. The feeling that breast cancer was a hopeless disease was answered by 5% for the group with a family history and 7% for the group without (Table 7). Attitudes towards Mammograms In the group with a family history, 34/o vs 15% in the group without a family history .greed that a mammogram would be painful Attitudes ofembanassment and peace of mind were not significant (Table 8). 30 Table 7 Attitudes towards breast cancer With Family History Questions Agree Likely to get breast cancer Disagree 14%* Breast cancer hopeless 5% Whatever will be will be 71%* 64% 84% 16% Without Family History Agree 0% 7% 58% Disagree 75% 97%* 29%* n=90, *p< 0.12 Table 8 Attitudes towards mammograms With Family History Agree Disagree Peace of mind 74% 18%* Would be painful 34%* Would be embarrassing 16% Worry about finding cancer 36% Questions Without Family History Agree 80%* Disagree 4% 15% 68% 64% 9% 84%* 54% 32% 60%* 59% n=90, *p<0.12 Adherence to Mammography Guidelines In this study the total number of surveys counted was 90. The total population of ever having a mammogram was 79%. Of this group, 63% had a mammogram this 31 or last year. Having a mammogram two years in a row accounted for 31% of the group. This study defined this group as having had a mammogram this and last year, or had a mammogram last year and two years ago, or age 40 years and had a mammogram this or last year. Only 27% had a mammogram for 3 consecutive years. This was defined as having had a mammogram this year, last year and two years ago, or having a mammogram last year, two years ago and three years ago, or age 40 and having one mammogram this or last year. Of note is that 8 people age 40 years never had a mammogram. In the group of respondents with a family history of breast cancer, 80% had at least one mammogram. In the group that did not have a family history of breast cancer, 78% had at least one mammogram, not a significant difference. There was no significant differences in the two groups in regard to adherence to the recommended guidelines. In the group with a family history of breast cancer, 61% vs. 64% without a family history had a mammogram this year, 30% vs.33% had a mammogram this year and last year, and 27% had mammograms for three consecutive years (Table 9). The data did not support the hypothesis of this study that women with a family history of breast cancer adhere to mammography guidelines more often that women without a family history, thus the hypothesis was rejected. Demographics, Beliefs and Attitudes The adherent group had a median income of $45-54,000 vs the non-adherent group income of 140-54,000. The adherent group had 39% graduating from college or graduate school, vs 1 8% in the non-adherent group. The adherent group had 46% 32 working outside the home vs 30% for the non-adherents. In attitudes towards breast cancer, the adherent group agreed 88% that woman with breast cancer can live a normal life VS. 57% in the non-adherent group. In looking at beliefs, 81% of the adherent group vs 67% of the non-adherent group correctly answered the question they were at high risk for developing breast cancer it their mother or sister had it. The adherent group had 81% believing that a mammogram was very efficient in detecting breast cancer vs 61% in the non-adherent group. The adherent group had 88% answer that a person with breast cancer can lead a normal life vs 57% in the non-adherent group, a significant difference. The adherent group answered 2% that the were embarrassed having a mammogram, while the non­ adherent group answered 30% of the time that they were embarrassed, also a significant difference. Influencing Factors The influencing factor of having a husband or partner approve of mammography was significantly higher in the adherent group, with 88/o approving vs. 54% in the non-adherent group. Having children approve of mammography was also significantly higher, with the adherent group approving 79/o vs 33/o in the non adherent group. Close friends approving was higher in the adherent group, 91% vs the non adherent group answering 69% they approved. Health care practices Having a health care provider recommend a mammogram was 79% in the adherent group vs. 4S% in the non-adherent group. This study showed that 25% of 33 the adherent group had non-cancerous breast disease vs. 42% in the non-adherent group. The adherent group was more likely to do breast self-examinations every month than the non-adherent group (25% vs. 12%). The certainty of getting a mammogram if it was recommended by a health care provider was significantly higher in the adherent group, 95% , vs. the non-adherent group who answered 45%. The percentage of women having yearly examinations for the last five years was 48% for the adherent group, vs. 14% for the non-adherent group. Table 9. Adherence to guidelines With Family History Without Family History Mammogram Frequency One year 61% 64% Two years 30% 33% Three years 27% 27% Note, n = 44 with Family History, n = 45 without Family History Summary This chapter presented the results from the survey to determine if women with a history of breast are adhering to recommended guidelines, and the influencing factors. These results were interpreted through descriptive analysis and compared to the Benchmark study on key issues. The data does not support the hypothesis of the study. Physician recommendation was the most influencing factor on whether women had mammograms. 34 Chapter V Discussion and Recommendations This study was undertaken to evaluate if women with a family history of breast cancer adhere to mammography guidelines more than women without a family history of breast cancer. A survey obtained from a similar study performed in 1996 was used to investigate demographic questions, knowledge of breast cancer, influencing factors, beliefs and attitudes, health care practices and family history of women in northwestern Pennsylvania. The results of this study were compared against the study which developed the survey for validity. There were no major differences between the results of the two surveys. Discussion The hypothesis of this study; women with a family history of breast cancer adhere is guidelines more than women without a family history of breast cancer, was not supported by this research. For all respondents, the one time mammography rate was 79%. This is slightly higher than the 72% reported in the literature (Constanza, Stoddard, Gaw & Zapka, 1992). Adherence did drop slightly after one year, but did not drop much for two to three years in a row, implying that once a woman starts adhering, she continues to do so. Women with a family history of breast cancer and with out a family history of breast cancer were very similar when compared at the one, two, and three year rate for adherence to guidelines. The greatest predictor of having a mammogram was having a physician 35 recommend it The National Breast Cancer Consortium (1990) found that the two most common reasons women gave for never having a mammogram were that they did not know they needed it, and that their health care provider had not recommended it The relationship between mammography use and physician recommendation emphasizes the need for regular contact with a heath care provider. Having annual examinations was higher in the adherent group (48%) vs the non-adherent group (14%). Yearly contact with a primary health provider gives more opportunities for mammography recommendation and education to take place (Bowman, Braly, Johnson & Mikuta, 1996). Health care providers should be aware of their influence on compliance and encouraged to use reminder or tracking systems. Attitudes were also a predictor of adherence. The adherent group answered 88% that a woman with breast cancer can live a normal life, with only 57% answering in the non-adherent group. This suggests that the non-adherent group may fear the discovery of breast cancer if they have a mammogram, so they choose not to adhere to the guidelines. Embarrassment of getting a mammogram was higher in the non- adherent group (30%) than in the adherent group (2%), implying that this was a factor in negatively influencing preventing women from obtaining a mammogram. The literature reports that embarrassment is a barrier in mammography adherence, and can be minimized by stating that the technicians are almost always women (Stein, et al, 1992). Knowledge wad also a significant predictor of adherence, with 81% of the adherent group vs 67% of the non-adherent group correctly answering questions 36 regarding they were at high risk if they h; iave a first degree relative with breast cancer. Consul, Stoddard, Gaw & Zapka (! 992) found that knowMgc of family „ associated with increased utilization. The influencing facMr rf mother, child or close fhend approve of mammography was higher in the adherent group Education for the entire family and community regarding the benefits of mammography screening may increase adherence. Becker s Health Belief Model was used as the theoretical framework for this study. Cues to action such as health care provider reminders, and perceived benefits and barriers (such as convenience and embarrassment) were more predictive of adhering to mammogram guidelines than knowledge. This confirms that all of the components in the Health Belief Model are important in determining the likelihood of a women adhering to the mammography guidelines, and it is important that each component be addressed. Education of mammography’s effectiveness of finding breast cancer early, and of the treatments and survival rates of breast cancer patients should be discussed. Factors which promote usage of mammogram such as making the screening more convenient and helping women overcome their embarrassment may help these barriers. Providing a more comfortable setting and prompting family members to encourage women to have a mammogram may increase compliance. Recommendations Further research is needed to determine the most effective way to decrease the barriers for adhering to mammography guidelines. Based on the results of this study the following recommendations were made: 1. The study should be replicated using a larger sample size and with a more racial and geographical mix, since both this study and the benchmark study did not. 2. Mammography recommendation needs to be part of eveiy woman’s health care and that current, accurate information be provided at these visits 3 Community outreach activities promoting breast cancer awareness aimed at the entire family should be encouraged. Summary This study suggests that many factors contribute to compliance in obtaining a mammogram and with following the recommended guidelines. Becker’s Health Belief Model (1977) was used to show the modifying factors which determine the likelihood of compliance with guidelines. Nurse practitioners are in a position to influence compliance with current information on efficiency of mammography and reminders during regular check-ups. Written materials should be developed and distributed to women and family members to reenforce these issues. This study demonstrated that women with a family history of breast cancer should be carefully identified and screened since this high risk group does not comply with the current guidelines. If this group of women are better educated they can make more positive choices regarding potentially life saving procedures. 38 References Abraham, C.L. & Seremetis, S. (1997). Bretuit health al midlife: Guidelines for screening and patient evaluation. Geriatrics.(6) 58-65 American Cancer Society. Cancer facts and figures, 1997. Atlanta, Georgia: American Cancer Society, 1997. Becker, M.H.(1974). The Health Belief Model and Personal Health History. Thorofare, NJ: Charles B. Slack, Inc. Becker, M. H., Haefner, D. P., & Kasl, S.V. (1977). Selected psychosocial models and correlates of individual health-related behaviors. Medical Care. 15,27-46 Bowman, M.A., Braly, P.S., Johnson, S., & Mikuta, J.J., MD. (1996). Who are you screening for cancer- and when? Patient Care , August 15, 1996, 54-76. 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Sattin, R.W., Rubin, G.L., Webster, L.A., Huezo, C.M., Wingo, P.A, Ory, H.W., & Layde, P.M. (1985). Family History and the Risk ofBreast Cancer. JAMA. 253, (13), 1908-1913. Sickle, E. & Kopans, D. (1995). Mammography screening of women aged 40 49 years: The Primary care practitioners dilemma. Amals-oflnternalNled u > 534-538. Stem, J.A., Fox, S.A., Murata, PI, & Monsky, D.E. (1992). Mammography 41 Usage and the Health Belief Model. Uu.w (4) Taber, L„ Fagerberg G„ & DnHy, S (1992). Update of the Swedish two country program of mammographic screening trial. Radiology Clinics ofNnrtb American, 30, 187-210. United States Preventative Task Force. (1996). Guide to Clinical Preventative Services (2nd ed.). Baltimore, MD: Williams and Wilkins. United States Public Health Service. (1994). Clinician’s Handbook of Preventive services, (pp. 191-193). Waldorf, MD: American Nurses Publishing. 42 Appendix A April 21, 1998 TO WHOM IT MAY CONCERN: Diane Gienger has my permission to distribute her survey to patients in my office. I understand that this project is a requirement for her MSN degree at Edinboro University of Pennsylvania. It is understood that the patient’s decision to participate is completely voluntary. Sincerely, John C. Jageman, M.D. JCJ/ms 43 Wattsburg Family Health Center A Service of Union City Memorial Hospital P.O. Box 61 14430 Main Street Wattsburg, Pennsylvania 16442 814 / 739-2225 SAINT VINCENT March 4, 1998 To Whom It May Concern: Diane Gienger has my permission to distribute her survey at this clinic. I understand that this project is a requirement for her Master of Science in Nursing Degree at Edinboro University of Pennsylvania. It is understood that participation is completely voluntary. Sincerely, A.cr' Marjorie J. Severo, RN, MSN, CRNP 44 Appendix B MAMMOGRAPHY USE BY WOMEN 40 YEARS AND OLDER: INFLUENCING FACTORS Directions Hello! My name is Diane and I am a Registered Nurse working on my Master’s Degree at Edinboro University. This is a survey about what women 40 years and older think, believe, and know about mammography and breast cancer. This survey is for research purposes only and will have no effect on your health care in this office. If you are at least 40 years old and have never had a diagnosis of breast cancer, please fill out the questions in this survey. It should take you about 10 minutes to complete. Please answer the questions as honestly as possible. Please answer each question. Your views are an important part of this study. If you are uncertain, choose “not sure” or “other”. If you have any comments, please write them in the space provided at the end of the survey. By filling out the survey, you are giving consent to be in this study. Do not put your name on the survey. Your answers will be anonymous and combined with other women’s answers. Thank you for your time. You may now begin. Adapted with permission from Anna M. Miller, DNS, RN School of Nursing Indiana University Indianapolis, Indiana 45 SURVEY Part A: This part is about mammograms you have had in the past. Circle the ONE answer that best fits your experience OR fill in the blanks. 1. A mammogram is an x-ray of the breasts, done by a machine that presses against the breast while the picture is taken. Have you ever heard of a mammogram? 1. 2. 3. 2. Have you ever had a mammogram? 1. 2. 3. 3. Yes No Not sure Yes No (Skip to Part B, Page 3) Not sure About when was your most recent mammogram? / Month 4. Was your most recent mammogram done because of a problem or as part of a regular checkup? 1. 2. 3. 4. 5. 5. Year Current breast problem Previous breast problem Part of a regular checkup Don’t remember Other (Specify) Thinking about the last 5 years, when did you have a mammogram? (Circle all that apply.) 0. 1. 2. 3. 4. 5. 6. 7. Had one this year Had one 1 year ago Had one 2 years ago Had one 3 years ago Had one 4 years ago Had one 5 years ago Have not had a mammogram in last 5 years Not sure 46 6. Who suggested you get your most recent mammogram? 1. 2. 3. 4. 7. Did you have a doctor’s order for your most recent mammogram? 1. 2. 3. 8. Doctor or other health care provider suggested getting a mammogram I asked for a mammogram Don’t remember Other (Specify) _ Yes No; I went to a breast center where I did not need a doctor’s order. Don’t remember For your most recent mammogram, how much money did you or your family have to pay? (Give your best estimate.) $ Don’t remember Part B: This part is about your feelings about breast cancer. There are no right answers. Each woman’s experience is different. Circle the ONE answer that best agrees with how you feel. If you are not sure about a question, circle Neutral. 1. 2. 3. 4. It is extremely likely I will get breast cancer in the future. Breast cancer can be cured if caught early. I feel I will get breast cancer in the future. Women with breast cancer can still live a normal life. Strongly Disagree Strongly Disagree Strongly Disagree Strongly Disagree Disagree Disagree Disagree Disagree Neutral Neutral Neutral Neutral Agree Strongly Agree Agree Strongly Agree Agree Strongly Agree Agree Strongly Agree 47 5. 6. 7. 8. 9. 10. 11. 12. There is a strong chance I will get breast cancer in the next 10 years. Strongly Disagree I want to control breast cancer by finding lumps early. Strongly Disagree Disagree Strongly Disagree Disagree My chances of getting breast cancer are high. Whatever will be, will be; if I am going to get breast cancer, I will. I am more likely than the average woman to get breast cancer. Strongly Disagree Disagree Disagree Agree Strongly Agree Neutral Agree Strongly Agree Neutral Agree Strongly Agree Agree Strongly Agree Neutral Neutral Strongly Disagree Disagree Neutral Agree Strongly Agree Breast cancer is a hopeless disease. Strongly Disagree Disagree Neutral Agree Strongly Agree I can control breast cancer by finding lumps early. Strongly Disagree Agree Strongly Agree My chances of developing breast cancer in the future are high. Strongly Disagree Agree Strongly Agree Disagree Disagree Neutral Neutral PART C: This part is about beliefs and feelings vom have about getting mammograms. Again, there are no right answers. Circle the ONE answer that best agrees with views. 1. Finding breast cancer early is worth the cost of a mammogram. Strongly Disagree Disagree Neutral Agree Strongly Agree 48 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. Getting a mammogram would give me peace of mind. Strongly Disagree Disagree Neutral Agree Strongly Agree People who are important to me would feel better if I got a mammogram. Strongly Disagree Disagree Neutral Agree Strongly Agree Strongly Disagree Disagree Neutral Agree Strongly Agree Strongly Disagree Disagree Neutral Agree Strongly Agree Having a mammogram would expose me to a lot of radiation. Having a mammogram would be painful. Having a mammogram would cost too much. Having a mammogram would be embarrassing. Having a mammogram would make me worry about /iMzffng breast cancer. Strongly Disagree Disagree Neutral Agree Strongly Agree Strongly Disagree Disagree Neutral Agree Strongly Agree Strongly Disagree Disagree Neutral Agree Strongly Agree Strongly Disagree Disagree Neutral Agree Strongly Agree Having a mammogram would take too much time. Strongly Disagree Disagree Neutral Agree Strongly Agree I have bad feelings about having a mammogram. Strongly Disagree Disagree Neutral Agree Strongly Agree Having a mammogram would be inconvenient for me. 49 12. There is a convenient place for me to get a mammogram. Strongly Disagree Disagree Neutral Agree Strongly Agree Part D: This part is about information related to breast cancer and mammograms. Circle the ONE answer that is most correct. Most people will not know all the answers. 1. On the average, how many women will get breast cancer sometime during their lives? 1. 2. 3. 4. 2. Who is more likely to get breast cancer? 1. 2. 3. 4. 3. Women under 50 years of age Women over 50 years of age Age makes no difference Not sure Who is more likely to get breast cancer? 1. 2. 3. 4. 4. 1 woman out of 5 1 woman out of 9 1 woman out of 25 Not sure Women whose mother and/or sister(s) have had breast cancer Women whose mother and/or sister(s) have NOT had breast cancer No difference Not sure At what age should most women get a first (baseline) mammogram, if they have nonain or lumps, AND no family history of breast cancer? 1. 2. 3. 4. 5. 6. Between ages 35 and 40 Between ages 40 and 45 Between ages 45 and 50 Age 50 years and over Not at all Not sure 50 5. How often should most women between 40 and 49 get a mammogram, if they lUmPS f(lmilV °fbreast cancer? Answer only 1. 2. 3. 4. 5. 6. 6. How often should women 50 years of age or older get a mammogram? Answer only if age 50 or older. 1. 2. 3. 4. 5. 6. 7. Yearly Every other year Every 3-5 years Once Not at all Not sure Yearly Every other year Every 3-5 years Once Not at all Not sure How effective is a mammogram in finding breast cancer early? 1. 2. 3. 4. 5. Very effective Slightly effective Not very effective Not at all effective Not sure Part E: This group of questions is about your health care. Please circle the answer that most closely describes your own situation. 1. At the place you go for regular health care, do you have a person you regard as your regular doctor or health care provider? 1. 2. Yes No 51 2. What kind of doctor or health care provider is that regular person? 1. 2. 3. 4. 5. 6. 7. 3. Has your regular doctor or health care provider ever suggested you have a mammogram when you did NOT have pain or lumps? 1. 2. 3. 4. 3. 4. 5. No health insurance Blue Cross/Blue Shield (non-HMO) Commercial (Prudential, Lincoln, etc., non-HMO) HMO (Specify which one) Other (Specify) Not sure Which of the following do you get? 1. 2. 3. 4. 5. 6. Yes No Not sure What kind of health insurance do you have/or yourself at the present time? NOTE: If you are covered by both your own and your husband’s insurance, list your husband’s insurance under “Other”. 0. 1. 2. 5. Chiropractor Family or General Practitioner Internal Medicine/Intemist Nurse Practitioner OB/Gynecologist Osteopath Other (Specify) Medicare Medicaid Both Medicare and Medicaid Neither Not sure Has the cost of a mammogram ever kept you from getting you had no breast pain or lumps?. 1. 2. 3. Yes No Not sure a mammogram yvhen 52 7. answer this question as if it did not 1. 2. 3. 4. 5. 6. ’ Less than $25 $25 to $35 More than $35, less than $50 $50 More than $50 Other (Specify) __ Part F: This part is about your own health and health history. Circle the ONE answer that best describes your own experiences, OR fill in the blanks. There are no right answers, as each woman’s experience is different. 1. Have you ever been diagnosed with non-cancerous breast disease? 1. 2. 3. 2. How many of your relatives have ever had breast cancer? 0. 1. 2. 3. 4. 5. 6. 3. Yes No Don’t know None One Two Three Four Five Other (Specify) Not sure 7. If you had a relative with breast cancer, was this/these relative® you- • fit* all that apply. 1. 2. 3. 4. 5. 6. Mother Sister Daughter Grandmother Aunt Cousin 53 4. How many of your close friends have ever had breast cancer? 0. 1. 2. 3. 4. 5. 6. 7. 5. Self breast examination is when a woman checks her own breasts for lumps. During the past year, did you examine your breasts for breast cancer? 1. 2. 6. Yes No During the past year, how many times did you examine your breasts? 0. 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 7. None One Two Three Four Five Other (Specify) Not sure Did not examine 1 time during the past year 2 times during the past year 3 times during the past year 4 times during the past year 5 times during the past year 6 times during the past year 7 times during the past year 8 times during the past year 9 times during the past year 10 times during the past year 11 times during the past year 12 times during the past year More than 12 times during the past year Thinking about the last 5 years, how often did you go to the doctor for regular checkups? No visits or regular checkups 0. 1 time 1. 2 times 2. 3 times 3. 4. 5. 6. 7. 4 times 5 times More than 5 times Not sure 54 8. In the next year, how likely are you to get a mammogram? 1. 2. 3. 4. 9. Very likely Somewhat likely Not very likely Not at all likely If your regular doctor told you to get a mammogram, how certain are you that you would get one? 1. 2. 3. 4. Very certain Somewhat certain Not very certain Not at all certain Part G: This part is about the influence other people have on whether women get mammograms. NOTE: If you have no contact with any of the persons listed below, please do not answer that question. For example, if you are unmarried or have no partner, you would not circle anything for husband (partner). The first questions are about how much certain people approve or disapprove ofyour having a mammogram. Circle the ONE best answer for each person. 1. 2. 3. 4. 5. 6. Husband (Partner) Strongly Disapproves Mother Strongly Disapproves Children Strongly Disapproves Doctor Strongly Disapproves Nurse Strongly Disapproves Close Strongly Disapproves friends Disapproves Neutral Approves Strongly Approves Disapproves Neutral Approves Strongly Approves Neutral Approves Strongly Approves Approves Strongly Approves Neutral Approves Strongly Approves Neutral Approves Strongly Approves Disapproves Disapproves Disapproves Disapproves Neutral 55 The next questions are about how much influence (each of these persons has on your getting a mammogram. Circle the ONE best answer for each person. 1. Husband (Partner) No Influence Some Influence Moderate Influence Strong Influence 2. Mother No Influence Some Influence Moderate Influence Strong Influence 3. Children No Influence Some Influence Moderate Influence Strong Influence 4. Doctor No Influence Some Influence Moderate Influence Strong Influence 5. Nurse No Influence Some Influence Moderate Influence Strong Influence 6. Close friends No Influence Some Influence Moderate Influence Strong Influence Part H: This part is about your beliefs about health care practices. Circle the ONE answer that best agrees with your views. 1. 2. 3. It is important to discover health problems early. Strongly Disagree Disagree Neutral Agree Strongly Agree Maintaining good health is extremely important to me. Strongly Disagree Disagree Neutral Agree Strongly Agree It is important to do things that will improve my health. Strongly Disagree Agree Strongly Agree Disagree Neutral 56 Part I: The last part of the survey asks about you and your family. Please circle the ONE best answer OR fill in the blank. 1. How many people live in your household on a regular basis, including yourself/ 1. 2. 3. 4. 5. 6. 2. In what kind of neighborhood do you live? 1. 2. 3. 4. 5. 3. One Two Three Four Five Other (Specify) Urban/City Suburban Country Small Town Other (Specify) What is your work situation now? 1. 2. 3. 4. 5. 6. Full time employed for pay Part time employed for pay Laid off Full time homemaker Retired Other (Specify) 4. What is your occupation? 5. What is the highest level or grade in school that you completed? Years 6. Which of the following best describes your background? 1. 2. 3. 4. 5. White African-American Hispanic/Latino Asian Other (Specify) 57 7. What is your marital status? 1. 2. 3. 4. 5. 8. In the past year, what was your total gross household income from all sources, including pensions, social security, disability, interest, etc. 1. 2. 3. 4. 5. 6. 7. 8. 9. 9. Married Separated Widowed Divorced Never Married Less than $20,000 $20,000 - $30,000 $30,000 - $40,000 $40,000 - $44,000 $45,000 - $54,000 $55,000 - $64,000 $65,000 - $74,000 Over $74,000 Not sure What is your age? THANK YOU You are now finished. Thank you for filling out the survey. Please use this space for comments you might have. 58 Appendix C (nna M. Miller r 6132 North Central Avenue Indianapolis. Indiana 46220 (317) 255-4972 October 16, 1997 Diana J. Gienger 6412 Arborwood Lane Erie, PA 16505 Dear Diana Gienger: Enclosed find a copy of the survey tool used for my dissertation study, which formed the basis for the Nursing Research article. Also enclosed are several xeroxed sheets that indicate the coding for subscales of benefits, barriers, knowledge, etc. You have my permission to use whatever portions are useful for your research, asking only that you acknowledge the source. I wish you well in looking at adherence to mammography guidelines in women who have a family history of breast cancer, and both Dr. Champion and I would appreciate hearing the results of your study. Please feel free to call me if you have questions after receiving these materials. My apologies for the delay -1 am working in Indianapolis and my Ball State University mail is delayed in getting to me. Sincerely, Anna M. Miller, DNS, RN