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Good day, I have a research I need help doing for my Principles of Evaluation and Research for Health Care Programs class. It is due on Tuesday by 6pm so I have time to read over before submission. O
Research Question: What are the medical expenses incurred by low income women ages 40 to 64 with breast cancer who are on Medicaid? Three Ethical concerns: 1.   Educational Resources  2.  Preventative measures to help women overcome fear 3.  Make mammograms screening more accessible to women Create 2 research questions, qualitative and quantitative and tell the study design to be used: Quantitative Research Question:  What percentage of your medical bill does the insurance cover? Design: Non-experimental Qualitative Research Question: Describe the medical procedures covered by your insurance provider. Design: Interview Evaluation and Logic Model in action:  https://www.cde.state.co.us/fedprograms/programevaluationppt
Good day, I have a research I need help doing for my Principles of Evaluation and Research for Health Care Programs class. It is due on Tuesday by 6pm so I have time to read over before submission. O
“A literature review is a specific type of academic essay that synthesizes and evaluates the relevant scholarship on a particular topic, for you it will be narrow in scope and related to your research question: – the same (or similary) population – the same disease state – SOMETHING in the literature needs to be used to build your case. A literature review does not contain any new research, but rather is an overview and critique of work that already has been published. These essays are like book reviews, but examine a whole group of scholarly journal articles or books rather than just one book. Writing a literature review often serves as a first step before embarking on a research project. Most large-scale research projects—like a doctoral dissertation—incorporate a literature review as a formal component. Overall, writing a literature review will help you obtain a better understanding of a specific area of knowledge, and also give you insight into some of the major concerns and debates within a particular discipline.
Good day, I have a research I need help doing for my Principles of Evaluation and Research for Health Care Programs class. It is due on Tuesday by 6pm so I have time to read over before submission. O
R E S E A R C H Open Access Patients with pathogenic variants for breast cancer other than BRCA1 and BRCA2: qualitative interviews about health care experiences Kristin E. Clift 1* , Sarah K. Macklin 2and Stephanie L. Hines 3 Abstract Background: Genetic testing for hereditary cancer syndromes has been revolutionized by next-generation sequencing, which allows for simultaneous review of numerous genes. Multigene panels are regularly offered to patients because of their scope and decreased cost and turnaround time. However, many genes included on larger panels have not been studied as extensively as BRCA1 and BRCA2 (BRCA1/2 ), and their clinical effects are often not as well established. Methods: We identified patients who received positive test results for pathogenic variants of breast cancer genes from January 2012 through May 2018. We mailed a survey and conducted qualitative interviews to explore the personal and health care experiences of patients with pathogenic variants of BRCA1/2 and patients with “other ”(ie, non- BRCA1/2 or PALB2; PTEN; ATM; TP53; NBM, RAD51C; MSH6 ) variants. We compared the experiences of these patients. Results: Fifty-nine out of 128 individuals responded to the survey (46%). Thirty-two patients had BRCA1/2 variants, and 27 had other variants. (49 women and 10 men; median [range] age, 63 [34 –87] years). We interviewed 21 patients (17 women and 4 men; median [range] age, 59.6 [34 –82] years). Of the interview participants, ten patients had BRCA1/2 variants, and 11 had non- BRCA1/2 variants. Patients reported receiving poor information about their genetic test results, and they often educated their physicians about their results. Some patients believed that they had been ignored or “brushed off ”by health care professionals because non- BRCA1/2 genes are less understood outside the genetics research community. Patients with BRCA1/2 variants had similar problems with health care providers, despite increased awareness and established guidelines about BRCA1/2 . Conclusions: Research is required to understand the clinical significance and proper management of diseases attributable to newly characterized hereditary cancer genes. Additional evaluation of patient and provider education should be at the forefront of efforts to improve patient care. Keywords: Familial cancer, Genetic counseling, Genetic risk, Genetics, Hereditary breast cancer, Qualitative research, PALB2 ,PTEN ,ATM ,TP53 ,NBM, RAD51C ,MSH6 © The Author(s). 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/ ), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated. * Correspondence: [email protected] 1Center for Individualized Medicine, Mayo Clinic, 4500 San Pablo Rd, Jacksonville, FL 32224, USAFull list of author information is available at the end of the article Clift et al. Hereditary Cancer in Clinical Practice (2019) 17:32 https://doi.org/10.1186/s13053-019-0132-6 Background Since the 1990s, genetic testing has been offered to patients at high risk for pathogenic variants of the BRCA1 and BRCA2 (BRCA1/2) genes [ 1,2]. Strong evidence shows how pathogenic variants of these two genes affect health, and thorough, well-researched management guidelines exist [ 3, 4]. Furthermore, widely reported celebrity cases have increased know- ledge about genetic tests for BRCA1/2 in the general population [ 5,6]. However, pathogenic changes in BRCA1/2 do not ac- count for all cases of hereditary breast cancer, and add- itional genes are associated with an increased cancer risk [ 7–9]. Many newly discovered genes are now included on panels for hereditary cancer gene testing. These lar- ger panels have become widely available because of the development of next-generation sequencing, a technol- ogy that allows for simultaneous assessment of multiple genes. In addition, the advent of direct-to-consumer genetic testing options has increased the likelihood that patients may undergo genetic testing without direct in- volvement of their physicians. The exact cancer risks of many newly discovered genes are not always known, and some genes appear to convey a moderately increased risk of breast cancer compared with the high risk associated with BRCA1/2 [4,10,11]. Although the association of these other genetic variants with a characteristic of increased breast cancer risk may be apparent (even if that level of risk has not been quantified), often it is un- clear which other organs may have an increased risk of malignancy [ 4,12]. The ambiguity can impair decision- making about whether or when to initiate interventions, such as increased surveillance, prophylactic surgery, pharmacologic risk reduction, or a combination of these therapies [ 13]. Furthermore, physicians do not have clear guidance to help counsel patients about the risks or management of pathogenic variants of other genes [ 14]. Overall, physician knowledge about genetics is insuffi- cient, and most do not feel comfortable counseling patients about genetic test results [ 15–17]. Despite growth in the consumer genetic testing industry, general public knowledge about genetics is also limited [ 18]. The purpose of this study was to assess gaps in physician knowledge and physician discomfort in managing these risks as perceived by patients who had received a diagnosis of a pathogenic variant of a newly characterized gene. We conducted qualitative interviews with patients who had pathogenic variants of BRCA1/2 genes and patients with pathogenic vari- ants of various “other ”(ie, non- BRCA1/2 )genesto explore their personal and health care experiences, identify gaps in care, and understand differences and similarities in the experiences between these 2 groups of patients. Methods We developed a survey and interview guides which were approved by the Mayo Clinic Institutional Review Board. We identified adult patients (age ≥18 years) who had genetic testing services and received reports sug- gesting hereditary cancer risk. These patients had been referred by their health care professionals (institutional or local providers) to the Department of Clinical Genomics at Mayo Clinic (Jacksonville, Florida) for as- sessment. We reviewed client utilization reports and identified all patients who re ceived a positive test result for a BRCA1/2 only test, hereditary breast cancer panel, and hereditary breast and gynecologic cancer gene panel from January 2012 through May 2018; genes in- cluded varied based on laboratory and date ordered. The Mayo Clinic Survey Research Center mailed surveys to these patients. Th e cover letter included a consent form and the invitation to participate in the interview portion of the study. If the patient indicated interest, he or she was contacted by study personnel to schedule an interview. Interested patients completed a private telephone or in-person interview at Mayo Clinic at their convenience. Patients were reminded of the purposeofthestudyandtheconsentform.Patients were compensated $25 for their participation in the interview. Interviews were conducted from March 2018 through July 2018. We conducted semi-structured interviews, which were audio recorded, transcribed, and assigned a unique iden- tification number. An inductive and integrated approach was used to analyze the transcripts. Two coders identi- fied major themes, separately coded the transcripts, and came to consensus through discussion [ 19–21]. After considering the coded materials, we identified the major themes of the participants ’responses. Survey topics included demographic information, self-report of genetic testing results and cancer diag- noses, additional measures taken as a result of genetic testing, attitudes about planning for the future (plan- ning for own health, getting support, and having chil- dren), and negative feelings about test results. For the purpose of this manuscript, survey results were tested for association with the following condition: having a pathogenic variant in the BRCA1 or BRCA2 gene. Frequency and percentage of respondents are pre- sented for all variables except age, for which median and range are shown. Associations with the condition described above were tested using Fisher ’s Exact test for categorical variables, Wilcoxon Rank Sum test for ordinal variables, and Kruskal-Wallis test for continu- ous variables. P-values of < 0.05 were considered to be statistically significant and all tests were two-sided. Statistical analyses were c onducted using SAS version 9.4 (SAS Institute, Cary, North Carolina, USA). Clift et al. Hereditary Cancer in Clinical Practice (2019) 17:32 Page 2 of 7 Results The Mayo Clinic Survey Research Center mailed surveys to 128 patients. Fifty-nine individuals (46%) responded to the survey. Forty-nine respondents were female, and 10 were male. Median age was 63 with range between 34 and 87. Forty-nine of the respondents identified solely as Caucasian, and the remainder identified as African American (6), Asian (2), Native American (1) or Hispanic (1). Thirty two (54%) had a pathogenic variant in BRCA1/2. Three of these 32 individuals had another pathogenic variant as well; these second variants were in CHEK2, NBN and MUTYH . Another individual had both a pathogenic PALB2 and CHEK2 variant. The remaining individuals all had one pathogenic variant in the follow- ing genes, CHEK2 (8), ATM (7), PALB2 (5), TP53 (2), NBN (1), MSH6 (1), PTEN (1), and RAD51C (1). Eleven of the 59 (19%) reported no history of cancer before or since completing genetic testing. Breast cancer was the most common cancer diagnosis, present in 33 individ- uals (56%). This was followed by ovarian (7), lung (3), colorectal (3), melanoma (2), uterine (3), prostate (1), renal (1), pancreas (1), thyroid (1), squamous cell carcin- oma (1) and serous carcinoma of unknown origin (1). Nine patients had more than one cancer diagnosis. Patients who had pathogenic variants in BRCA1/2 were more likely to have received prophylactic surgery (15/29, 52%) than those with a variant in another gene (5/25, 20%) ( p= .024). There were no statistically signifi- cant differences between the two groups for questions that asked about management, planning for the future, increased anxiety, lack of information, or regret. Of the survey responders who were interested in partici- pation of the interview portion, we interviewed 21 patients (17 women and 4 men; median [range] age, 59.6 [34 –82] years). Ten patients had a pathogenic BRCA1/2 variant, and 11 had a pathogenic variant of a gene other than BRCA1/2 .(SeeTable 1) Four interviews took place in person, and the others were completed via telephone. Patients with pathogenic variants in genes other than BRCA1/2 were often frustrated by their encounters with local health care providers. We grouped their experi- ences into several themes. Complex cases Several patients expressed the feeling that their genetic test results made their health care management too complicated for their local physician. This feeling is shown by the following quotes: I used to go to [a local physician]. He ’s a sweet man, a good doctor … but I felt like my body was getting a little more complicated than everyday checkups yearly. 72-year-old woman with PALB2 -positive breast cancer I do have a primary care physician in [town], and my oncologist is local, too … the doctors [here] are okay, but … if you baffle them, they don ’t offer any suggestions. And, you know, I guess I baffle them a lot. 54- year-old woman with CHEK2 -positive breast cancer A patient, who was concerned about passing on patho- genic variants for cancer to his children, described his experience seeking information from a local health care provider: I called a guy here, my family physician or my internist, and he said there ’s nothing around here. They don ’t fool with that around here. 81-year-old man with ATM -positive pancreatic cancer. Another patient described her physicians ’reactions to finding out her genetic test results: I think it ’s a new thing for everybody, the PALB2 .I would say two of my doctors did not know about PALB2 . They say, “It’s new to me, I didn ’t know about that one. ”… They pretty much said, “OK, get in touch with the oncologist, ”but nothing else. 55- year-old woman with PALB2 -positive breast cancer Brushed off by physicians Patients often felt that their health care providers dis- missed them or the genetic test results they presented, as described by one patient: I took my report to my oncologist … who I had not been with I think for about 3 years … he did have a Table 1 Interview Patient Demographic Information ( N= 21) Gene Women/Men, No. Age, Mean (Range), y BRCA1/2 8/2 51 (34 –72) PALB2 4/0 67.8 (55 –76) ATM 1/2 63 (48 –82) CHEK2 2/0 55 (54 –56) TP53 1/0 35 PTEN 1/0 38 Clift et al. Hereditary Cancer in Clinical Practice (2019) 17:32 Page 3 of 7 geneticist in his office, which was different from when I used to see him. And they kind of pooh-poohed it. I felt like I was discounted —he didn ’t want to see me. He usually was a doctor that was very thorough around asking history, but the geneticist just took the paper work and put it somewhere. Same way with my internal medicine doctor. 76-year-old woman with PABL2 -positive breast cancer Another patient described her experience when she told her health care providers about her genetic test results: They didn ’t really do much with it. They were unaware … I’ve just learned that, unfortunately, you have to educate yourself because a lot of the medical community just doesn ’treallyknowmuchaboutit,and they just, in my experience, have just pushed me aside. 59-year-old woman with ATM -positive breast cancer Another patient described how she was met with little more than a platitude and no additional advice: Yes, I shared them at the clinic with the physician that I generally see. I did give him that information, absolutely. I gave him a copy of my information. … Basically, there is no particular advice. By the way, I also shared it with my gynecologist. … He didn ’t say a whole lot. He just told me that it was unfortunate. 68-year-old woman with PALB2 -positive breast cancer Additional research by physicians Not all physicians were dismissive. Some patients ex- plained how their physicians learned more about their genetic variants to help them: [My doctor] got all my information … after I gave it to her, I don ’t know how much she had heard about it before, but I know that she then went and researched a bunch, and we met after and talked a lot about it. 35-year-old woman with TP53 -positive breast cancer My primary care physician, yes, I took them [the genetic test results] back. But what I ’ve found is that most doctors are not familiarized with the PTEN mutation, and they ’re like, “OK, well, let ’s research this a little. ” 38-year-old woman with PTEN -positive endometrial cancer Educating others Patients with positive test results for variants of genes other than BRCA1/2 often educated other patients and helped guide their care. One patient described her mo- tivation to assert her knowledge and to help guide the care of other patients: I feel like I ’ve been trying to educate people in this particular facility, as well as patients, about the awareness of genetic testing and the importance … I think that it ’s important to just educate the medical community that, hey, this is what ’s going on, and … there might be more targeted medications or treatments that you could try instead of what you might be used to. So, I guess for myself, I ’ve taken on the role of “Why did I have cancer? ”Well, I have cancer because I ’m going to help educate people about what ’s out there. I ’m a teacher by training, so I think I ’ll never lose that. 59-year-old woman with ATM -positive breast cancer Another patient noted how people she spoke with did not know about other genes associated with breast cancer: A lot of people are just, like, clueless about CHEK2 , and [I] even had to spell it for people, “C-H-E-K-2, the number 2 ”.… They just say, “Wow, that ’s interesting because I hadn ’t heard anything about that particular gene, because there ’s so much out there about BRCA1 and BRCA2 . Even with that actress who had that particular gene and went ahead and did all that double mastectomy. ” 56-year-old woman with CHEK2 -positive breast cancer Patients With BRCA1/2 Variants Had Similar Problems Even patients with BRCA1/2 variants reported that their local providers were not particularly interested in their genetic test results or in ordering genetic tests. Well, I ’m looking for a new outside provider because I really didn ’t like the doctor I was going to. I brought all of my testing … and he kind of just handed them back to me and said, “OK, well, I don ’t need this. ”So, I ’m looking for another doctor. I just didn ’t like the fact that he handed those tests back to me saying, “I really don ’t need these. ”So, I am looking for another doctor who will be interested in my problems. 72-year-old woman with the BRCA2 variant Clift et al. Hereditary Cancer in Clinical Practice (2019) 17:32 Page 4 of 7 One patient without a personal history of cancer asked about genetic testing services because of her family his- tory. Her physician did not think her genetic risk was a concern: I had my previous gynecologist, and she didn ’t really think it was any type of concern. She brushed it off. And I think when she brushed it off, I didn ’t think very much of it. ” 62-year-old woman with the BRCA2 variant Another patient had undergone BRCA1/2 testing 5 years prior, but the test results were negative. Her sister mentioned updates in genetic testing, but she was disap- pointed that she had to mention additional testing in- stead of her health care providers suggesting it: When I asked, they were, you know, “Sure, ”and insurance covered it. But I think if I didn ’t ask, I wouldn ’t know, and I was disappointed that it hadn ’t been brought to me, instead of me asking because my sister mentioned something. ” 62-year-old woman with BRCA1 -positive breast cancer When she received a positive result for a pathogenic variation of BRCA1 , she decided to undergo prophylactic surgery. Another patient explained that when she asked about genetic testing in the 1990s, her physicians did not think genetic testing was necessary because it was not routine. Now, she believes that physicians should recommend genetic testing to everyone with breast cancer: I had asked my oncologist up north about it because they were just finding out about this BRCA gene. And they said, “Well, I don ’t think that ’s necessary. ”I mean, they were very good physicians, don ’t get me wrong, I ’m not criticizing them, but I think they felt back in the 90s they know less than they know now. … I just feel that physicians, when they diagnose someone with breast cancer, should probably recommend genetic testing. A lot of them don ’t. 70-year-old woman with BRCA2 -positive breast cancer Discussion Patients with a genetic predisposition to cancer encoun- ter several challenges in their efforts to incorporate this knowledge into their medical care. Consistent observations from the current study include a lack of provider knowledge about the discovery of new cancer genes, associated risks, and clinical options for manage- ment. Patients also expressed an awareness of their phy- sicians ’discomfort in managing these risks and an appreciation for those physicians who made additional efforts to learn. Interestingly, those with pathogenic variants of newly characterized non- BRCA genes experienced many of the same barriers as those with pathogenic variants of BRCA1/2 , despite increased public awareness and med- ical knowledge about these more established genes. Such findings suggest an increasing gap between the pace of medical advances in genetics and the ability of providers to incorporate this information into clinical practice. Changes in health care have expanded the un- derstanding of the genetic basis of disease, the advent of next-generation sequencing has enabled commercial la- boratories to expand the availability of their clinical of- ferings, and a single test can now provide results for multiple known cancer-causing genes. In addition, direct-to-consumer tests are available that bypass the health care provider entirely. As a consequence, the re- sults of these tests can be difficult to interpret by both patients and health care providers alike because genetic testing technology outpaces the rate of medical research needed to understand associated risks and to develop evidence-based clinical treatment strategies. Within the general medical community, knowledge about genetic risk factors for breast cancer remains lim- ited [ 17]. Although more information exists about the risks and management options associated with BRCA1/ 2 , many regularly tested genes have received less atten- tion from the media and the research community. Gen- eral public awareness is low, and more importantly, patients and their health care providers may be uncer- tain about how these results affect cancer risk or on- going care [ 22]. This lack of certainty is exemplified by the observations of the patients in this study who were frustrated when they attempted to proactively manage their own genetic risk. Care guidelines for patients with pathogenic BRCA1/2 variants are well established [ 4] as confirmed by the survey findings that more BRCA1/ patients received prophylactic surgery. However, gaps remain in physician understanding about management recommendations, and these gaps may be more acute for less well-known genes. Pathogenic variants in these newly described genes are often less com- mon, which can affect the ability of researchers to accur- ately predict overall lifetime risks and to define optimal clinical strategies for screening and prevention. This un- certainty, in turn, results in a lack of clinical evidence that physicians can use in the everyday care of their patients. Our qualitative research confirms these issues. Clift et al. Hereditary Cancer in Clinical Practice (2019) 17:32 Page 5 of 7 This study has several limitations. The number of pa- tients interviewed was small, and the study cohort was recruited from only one tertiary care medical center. Additional research is needed to confirm whether these results occur in other patient populations and to the medical community at large. However, the data presented do suggest that, when confronted with unfamiliar information, health care pro- viders should consider taking proactive steps, such as reaching out to colleagues or consulting the literature; however, consulting the literature may not always be feasible given the amount of time available for most phy- sicians to devote to each patient. Physicians should receive education about how to refer a patient to a specialist who can provide management recommendations and how to access informative re- sources. Greater knowledge about care or management recommendations for health care professionals may help to improve patient experience. The National Compre- hensive Cancer Network has practice guidelines for mul- tiple genes related to the risk of hereditary breast cancer [ 4]. These guidelines are free, outline management rec- ommendations to consider, and emphasize when avail- able research is too limited to recommend changes in care. In an effort to remain pertinent, these guidelines are updated regularly, often at least once per year. Health care providers who are unable to refer patients to a high-risk breast cancer clinic can review these guide- lines to determine whether their patients should receive individualized care. Abbreviations BRCA1/2 :BRCA1 and BRCA2 Acknowledgements We ’d like to thank Emily Vargas and Zhou Li for statistical analysis. We ’d like to thank the patients who participated in this study for their time andthoughtful comments. Authors ’contributions KC contributed to survey design, conducted qualitative patient interviews, analyzed interview transcripts, and was a major contributor in writing themanuscript. SM identified potential patient participants, developed thesurvey design, analyzed patient interview transcripts, and was a major contributor in writing and editing the manuscript. SH obtained funding for the study, oversaw all aspects of research design, contributed to surveydesign, reviewed patient interview transcripts, and was a major contributorin writing and editing the manuscript. All authors read and approved the final manuscript. Authors ’information KC is a research program coordinator within the Center for IndividualizedMedicine, holds Instructor rank in the Mayo Clinic College of Medicine and Science, and has advanced training in conducting qualitative research. SM is a certified genetic counselor who holds rank as Assistant Professor ofMedical Genetics in the College of Medicine. SH is a Consultant of InternalMedicine in the Center for Breast Health, Chair of the Executive, Development, International Integrated Multidisciplinary Practice, holds rank as Associate Professor in the College of Medicine, and has a special interestin genetics and familial cancers. Funding The authors would like to thank the Center for Individualized Medicine for supporting the efforts of this study. The Center for Individualized Medicinehad no role in any of the study design, collection, analysis, or manuscriptpreparation or submission. Availability of data and materials The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request. Ethics approval and consent to participate This study was approved by the Internal Review Board ID: 17 –010074. Patient consent was obtained and participants signed a HIPAA waiver. Consent for publication Not Applicable. Competing interests The authors declare that they have no competing interests. Author details1Center for Individualized Medicine, Mayo Clinic, 4500 San Pablo Rd, Jacksonville, FL 32224, USA. 2Department of Clinical Genomics, Mayo Clinic, 4500 San Pablo Rd, Jacksonville, FL 32224, USA. 3Internal Medicine, Mayo Clinic, 4500 San Pablo Rd, Jacksonville, FL 32224, USA. Received: 29 July 2019 Accepted: 9 December 2019 References1. Miki Y, Swensen J, Shattuck-Eidens D, et al. A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1. Science. 1994;266(5182):66 –71. 2. Wooster R, Neuhausen SL, Mangion J, et al. Localization of a breast cancer susceptibility gene, BRCA2, to chromosome 13q12-13. Science. 1994; 265(5181):2088 –90. 3. Chen S, Parmigiani G. Meta-analysis of BRCA1 and BRCA2 penetrance. J Clin Oncol. 2007;25(11):1329 –33. 4. Daly MB, Pilarski R, Berry M, et al. NCCN guidelines insights: genetic/familial high-risk assessment: breast and ovarian, version 2.2017. 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Study sheds light on the ‘other ’breast cancer genes. 2017; https:// www.cnn.com/2017/07/20/health/breast-cancer-genes-jewish – women-study/index.html. Publisher ’sNote Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Clift et al. Hereditary Cancer in Clinical Practice (2019) 17:32 Page 7 of 7 BioMed Centralpublishes undertheCreative Commons Attribution License(CCAL). Under the CCAL, authors retaincopyright tothe article butusers areallowed todownload, reprint, distribute and/orcopy articles inBioMed Centraljournals, aslong asthe original workis properly cited.
Good day, I have a research I need help doing for my Principles of Evaluation and Research for Health Care Programs class. It is due on Tuesday by 6pm so I have time to read over before submission. O
APA Format Research Question (5 pts) Develop a research question (PICO optional). This should only be one concise sentence. No typos, no grammar issues. No grammatical errors allowed. Research Goals and Objectives (20pts) (3 paragraphs, 4 sentences per paragraph) What are the expected results of the research program? The goals should specify the problem and identify target populations. Then describe the objectives, there should be more than one, to describe the results to be achieved, use “SMART” objectives. This should be approximately one page. S – Specific – your goal is direct, detailed, and meaningful. M – Measurable – your goal is quantifiable to track progress or success. A – Attainable – your goal is realistic and you have the tools and/or resources to attain it. R – Relevant – your goals aligns with your company mission. T – Time-based – Your goal has a deadline. Literature Review (35pts)- (7 paragraphs 4 sentences per paragraph) State in more detail the problem or issue you have identified from your research question and include data sources that support your claim (e.g., lack of physical activity in your community and data on physical activity rates from Healthy People 2020). This section should be 2-3 pages. There should be a minimum of five peer-reviewed citations. Websites are not acceptable. The formatting of this section is as follows: Introduction. Open by providing detailed background of the issue (providing more detail from above, and getting more specific as to your area of inquiry) in 1-3 paragraphs. Body. Provide at least one paragraph per source (citation) of detailed analysis of the current research on your topic. This is how you tell the reader what is known on this topic as well as what is not known – this is where your research comes in. **What explains lower rates of mammography ? This study finds ******however they didn’t do this******. Three acceptable way of quoting: In a study by Smith and Jones, (2020). Facts are quoted like this: (Smith & Jones, 2020) Quote “……………………..” (Smith & Jones 2020; p.17) Facts get referenced in your paper. Reference goes to the end of the sentences. Conclusion. Explain the gaps in previously conducted research and how your research will address at least one gap (such as population, setting, intervention/exposure type). For example one study finds this ………… another study finds this…………… Logic Model (30pts) (Visual Version of the paper) Build a logic model indicating the inputs, research activities, and anticipated outputs as indicated in the template shared in class. This section may take 1-2 pages. Bullets not full sentences Contents for Logic Model: Problem statement Goal statement – Ground it with facts, previous rate, why you pick the topic and why should someone else care. (CDC website etc. is good for here) Objectives – start with group affected. Primary resources can be used (.org websites) Build a logic model indicating the inputs, activities, outputs, short & long term outcomes, and impact as indicated in the template shared in class. This section may take 1-2 pages. 1 Research Question 2 – 3 Goal Statements with the same number or more Objectives Objectives must be measurable Inputs and Resources Outcomes Use heading for example,: Goals and objectives as header Literature Review – Past Tense, Active present – what you want to see done in the future. The paper is measuring association, “People diagnosed with breast cancer” References (10pts) APA format https://templates.office.com/en-us/apa-style-report-6th-edition-tm03982351 Spelling, grammar, comprehensibility count! No transition sentences Use heading for example Goals and objectives Literature Review – Past Tense, Active present – what you want to see done in the future. PAPER MUST BE DONE IN APA FORMAT
Good day, I have a research I need help doing for my Principles of Evaluation and Research for Health Care Programs class. It is due on Tuesday by 6pm so I have time to read over before submission. O
R E S E A R C H Open Access Patients with pathogenic variants for breast cancer other than BRCA1 and BRCA2: qualitative interviews about health care experiences Kristin E. Clift 1* , Sarah K. Macklin 2and Stephanie L. Hines 3 Abstract Background: Genetic testing for hereditary cancer syndromes has been revolutionized by next-generation sequencing, which allows for simultaneous review of numerous genes. Multigene panels are regularly offered to patients because of their scope and decreased cost and turnaround time. However, many genes included on larger panels have not been studied as extensively as BRCA1 and BRCA2 (BRCA1/2 ), and their clinical effects are often not as well established. Methods: We identified patients who received positive test results for pathogenic variants of breast cancer genes from January 2012 through May 2018. We mailed a survey and conducted qualitative interviews to explore the personal and health care experiences of patients with pathogenic variants of BRCA1/2 and patients with “other ”(ie, non- BRCA1/2 or PALB2; PTEN; ATM; TP53; NBM, RAD51C; MSH6 ) variants. We compared the experiences of these patients. Results: Fifty-nine out of 128 individuals responded to the survey (46%). Thirty-two patients had BRCA1/2 variants, and 27 had other variants. (49 women and 10 men; median [range] age, 63 [34 –87] years). We interviewed 21 patients (17 women and 4 men; median [range] age, 59.6 [34 –82] years). Of the interview participants, ten patients had BRCA1/2 variants, and 11 had non- BRCA1/2 variants. Patients reported receiving poor information about their genetic test results, and they often educated their physicians about their results. Some patients believed that they had been ignored or “brushed off ”by health care professionals because non- BRCA1/2 genes are less understood outside the genetics research community. Patients with BRCA1/2 variants had similar problems with health care providers, despite increased awareness and established guidelines about BRCA1/2 . Conclusions: Research is required to understand the clinical significance and proper management of diseases attributable to newly characterized hereditary cancer genes. Additional evaluation of patient and provider education should be at the forefront of efforts to improve patient care. Keywords: Familial cancer, Genetic counseling, Genetic risk, Genetics, Hereditary breast cancer, Qualitative research, PALB2 ,PTEN ,ATM ,TP53 ,NBM, RAD51C ,MSH6 © The Author(s). 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/ ), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated. * Correspondence: [email protected] 1Center for Individualized Medicine, Mayo Clinic, 4500 San Pablo Rd, Jacksonville, FL 32224, USAFull list of author information is available at the end of the article Clift et al. Hereditary Cancer in Clinical Practice (2019) 17:32 https://doi.org/10.1186/s13053-019-0132-6 Background Since the 1990s, genetic testing has been offered to patients at high risk for pathogenic variants of the BRCA1 and BRCA2 (BRCA1/2) genes [ 1,2]. Strong evidence shows how pathogenic variants of these two genes affect health, and thorough, well-researched management guidelines exist [ 3, 4]. Furthermore, widely reported celebrity cases have increased know- ledge about genetic tests for BRCA1/2 in the general population [ 5,6]. However, pathogenic changes in BRCA1/2 do not ac- count for all cases of hereditary breast cancer, and add- itional genes are associated with an increased cancer risk [ 7–9]. Many newly discovered genes are now included on panels for hereditary cancer gene testing. These lar- ger panels have become widely available because of the development of next-generation sequencing, a technol- ogy that allows for simultaneous assessment of multiple genes. In addition, the advent of direct-to-consumer genetic testing options has increased the likelihood that patients may undergo genetic testing without direct in- volvement of their physicians. The exact cancer risks of many newly discovered genes are not always known, and some genes appear to convey a moderately increased risk of breast cancer compared with the high risk associated with BRCA1/2 [4,10,11]. Although the association of these other genetic variants with a characteristic of increased breast cancer risk may be apparent (even if that level of risk has not been quantified), often it is un- clear which other organs may have an increased risk of malignancy [ 4,12]. The ambiguity can impair decision- making about whether or when to initiate interventions, such as increased surveillance, prophylactic surgery, pharmacologic risk reduction, or a combination of these therapies [ 13]. Furthermore, physicians do not have clear guidance to help counsel patients about the risks or management of pathogenic variants of other genes [ 14]. Overall, physician knowledge about genetics is insuffi- cient, and most do not feel comfortable counseling patients about genetic test results [ 15–17]. Despite growth in the consumer genetic testing industry, general public knowledge about genetics is also limited [ 18]. The purpose of this study was to assess gaps in physician knowledge and physician discomfort in managing these risks as perceived by patients who had received a diagnosis of a pathogenic variant of a newly characterized gene. We conducted qualitative interviews with patients who had pathogenic variants of BRCA1/2 genes and patients with pathogenic vari- ants of various “other ”(ie, non- BRCA1/2 )genesto explore their personal and health care experiences, identify gaps in care, and understand differences and similarities in the experiences between these 2 groups of patients. Methods We developed a survey and interview guides which were approved by the Mayo Clinic Institutional Review Board. We identified adult patients (age ≥18 years) who had genetic testing services and received reports sug- gesting hereditary cancer risk. These patients had been referred by their health care professionals (institutional or local providers) to the Department of Clinical Genomics at Mayo Clinic (Jacksonville, Florida) for as- sessment. We reviewed client utilization reports and identified all patients who re ceived a positive test result for a BRCA1/2 only test, hereditary breast cancer panel, and hereditary breast and gynecologic cancer gene panel from January 2012 through May 2018; genes in- cluded varied based on laboratory and date ordered. The Mayo Clinic Survey Research Center mailed surveys to these patients. Th e cover letter included a consent form and the invitation to participate in the interview portion of the study. If the patient indicated interest, he or she was contacted by study personnel to schedule an interview. Interested patients completed a private telephone or in-person interview at Mayo Clinic at their convenience. Patients were reminded of the purposeofthestudyandtheconsentform.Patients were compensated $25 for their participation in the interview. Interviews were conducted from March 2018 through July 2018. We conducted semi-structured interviews, which were audio recorded, transcribed, and assigned a unique iden- tification number. An inductive and integrated approach was used to analyze the transcripts. Two coders identi- fied major themes, separately coded the transcripts, and came to consensus through discussion [ 19–21]. After considering the coded materials, we identified the major themes of the participants ’responses. Survey topics included demographic information, self-report of genetic testing results and cancer diag- noses, additional measures taken as a result of genetic testing, attitudes about planning for the future (plan- ning for own health, getting support, and having chil- dren), and negative feelings about test results. For the purpose of this manuscript, survey results were tested for association with the following condition: having a pathogenic variant in the BRCA1 or BRCA2 gene. Frequency and percentage of respondents are pre- sented for all variables except age, for which median and range are shown. Associations with the condition described above were tested using Fisher ’s Exact test for categorical variables, Wilcoxon Rank Sum test for ordinal variables, and Kruskal-Wallis test for continu- ous variables. P-values of < 0.05 were considered to be statistically significant and all tests were two-sided. Statistical analyses were c onducted using SAS version 9.4 (SAS Institute, Cary, North Carolina, USA). Clift et al. Hereditary Cancer in Clinical Practice (2019) 17:32 Page 2 of 7 Results The Mayo Clinic Survey Research Center mailed surveys to 128 patients. Fifty-nine individuals (46%) responded to the survey. Forty-nine respondents were female, and 10 were male. Median age was 63 with range between 34 and 87. Forty-nine of the respondents identified solely as Caucasian, and the remainder identified as African American (6), Asian (2), Native American (1) or Hispanic (1). Thirty two (54%) had a pathogenic variant in BRCA1/2. Three of these 32 individuals had another pathogenic variant as well; these second variants were in CHEK2, NBN and MUTYH . Another individual had both a pathogenic PALB2 and CHEK2 variant. The remaining individuals all had one pathogenic variant in the follow- ing genes, CHEK2 (8), ATM (7), PALB2 (5), TP53 (2), NBN (1), MSH6 (1), PTEN (1), and RAD51C (1). Eleven of the 59 (19%) reported no history of cancer before or since completing genetic testing. Breast cancer was the most common cancer diagnosis, present in 33 individ- uals (56%). This was followed by ovarian (7), lung (3), colorectal (3), melanoma (2), uterine (3), prostate (1), renal (1), pancreas (1), thyroid (1), squamous cell carcin- oma (1) and serous carcinoma of unknown origin (1). Nine patients had more than one cancer diagnosis. Patients who had pathogenic variants in BRCA1/2 were more likely to have received prophylactic surgery (15/29, 52%) than those with a variant in another gene (5/25, 20%) ( p= .024). There were no statistically signifi- cant differences between the two groups for questions that asked about management, planning for the future, increased anxiety, lack of information, or regret. Of the survey responders who were interested in partici- pation of the interview portion, we interviewed 21 patients (17 women and 4 men; median [range] age, 59.6 [34 –82] years). Ten patients had a pathogenic BRCA1/2 variant, and 11 had a pathogenic variant of a gene other than BRCA1/2 .(SeeTable 1) Four interviews took place in person, and the others were completed via telephone. Patients with pathogenic variants in genes other than BRCA1/2 were often frustrated by their encounters with local health care providers. We grouped their experi- ences into several themes. Complex cases Several patients expressed the feeling that their genetic test results made their health care management too complicated for their local physician. This feeling is shown by the following quotes: I used to go to [a local physician]. He ’s a sweet man, a good doctor … but I felt like my body was getting a little more complicated than everyday checkups yearly. 72-year-old woman with PALB2 -positive breast cancer I do have a primary care physician in [town], and my oncologist is local, too … the doctors [here] are okay, but … if you baffle them, they don ’t offer any suggestions. And, you know, I guess I baffle them a lot. 54- year-old woman with CHEK2 -positive breast cancer A patient, who was concerned about passing on patho- genic variants for cancer to his children, described his experience seeking information from a local health care provider: I called a guy here, my family physician or my internist, and he said there ’s nothing around here. They don ’t fool with that around here. 81-year-old man with ATM -positive pancreatic cancer. Another patient described her physicians ’reactions to finding out her genetic test results: I think it ’s a new thing for everybody, the PALB2 .I would say two of my doctors did not know about PALB2 . They say, “It’s new to me, I didn ’t know about that one. ”… They pretty much said, “OK, get in touch with the oncologist, ”but nothing else. 55- year-old woman with PALB2 -positive breast cancer Brushed off by physicians Patients often felt that their health care providers dis- missed them or the genetic test results they presented, as described by one patient: I took my report to my oncologist … who I had not been with I think for about 3 years … he did have a Table 1 Interview Patient Demographic Information ( N= 21) Gene Women/Men, No. Age, Mean (Range), y BRCA1/2 8/2 51 (34 –72) PALB2 4/0 67.8 (55 –76) ATM 1/2 63 (48 –82) CHEK2 2/0 55 (54 –56) TP53 1/0 35 PTEN 1/0 38 Clift et al. Hereditary Cancer in Clinical Practice (2019) 17:32 Page 3 of 7 geneticist in his office, which was different from when I used to see him. And they kind of pooh-poohed it. I felt like I was discounted —he didn ’t want to see me. He usually was a doctor that was very thorough around asking history, but the geneticist just took the paper work and put it somewhere. Same way with my internal medicine doctor. 76-year-old woman with PABL2 -positive breast cancer Another patient described her experience when she told her health care providers about her genetic test results: They didn ’t really do much with it. They were unaware … I’ve just learned that, unfortunately, you have to educate yourself because a lot of the medical community just doesn ’treallyknowmuchaboutit,and they just, in my experience, have just pushed me aside. 59-year-old woman with ATM -positive breast cancer Another patient described how she was met with little more than a platitude and no additional advice: Yes, I shared them at the clinic with the physician that I generally see. I did give him that information, absolutely. I gave him a copy of my information. … Basically, there is no particular advice. By the way, I also shared it with my gynecologist. … He didn ’t say a whole lot. He just told me that it was unfortunate. 68-year-old woman with PALB2 -positive breast cancer Additional research by physicians Not all physicians were dismissive. Some patients ex- plained how their physicians learned more about their genetic variants to help them: [My doctor] got all my information … after I gave it to her, I don ’t know how much she had heard about it before, but I know that she then went and researched a bunch, and we met after and talked a lot about it. 35-year-old woman with TP53 -positive breast cancer My primary care physician, yes, I took them [the genetic test results] back. But what I ’ve found is that most doctors are not familiarized with the PTEN mutation, and they ’re like, “OK, well, let ’s research this a little. ” 38-year-old woman with PTEN -positive endometrial cancer Educating others Patients with positive test results for variants of genes other than BRCA1/2 often educated other patients and helped guide their care. One patient described her mo- tivation to assert her knowledge and to help guide the care of other patients: I feel like I ’ve been trying to educate people in this particular facility, as well as patients, about the awareness of genetic testing and the importance … I think that it ’s important to just educate the medical community that, hey, this is what ’s going on, and … there might be more targeted medications or treatments that you could try instead of what you might be used to. So, I guess for myself, I ’ve taken on the role of “Why did I have cancer? ”Well, I have cancer because I ’m going to help educate people about what ’s out there. I ’m a teacher by training, so I think I ’ll never lose that. 59-year-old woman with ATM -positive breast cancer Another patient noted how people she spoke with did not know about other genes associated with breast cancer: A lot of people are just, like, clueless about CHEK2 , and [I] even had to spell it for people, “C-H-E-K-2, the number 2 ”.… They just say, “Wow, that ’s interesting because I hadn ’t heard anything about that particular gene, because there ’s so much out there about BRCA1 and BRCA2 . Even with that actress who had that particular gene and went ahead and did all that double mastectomy. ” 56-year-old woman with CHEK2 -positive breast cancer Patients With BRCA1/2 Variants Had Similar Problems Even patients with BRCA1/2 variants reported that their local providers were not particularly interested in their genetic test results or in ordering genetic tests. Well, I ’m looking for a new outside provider because I really didn ’t like the doctor I was going to. I brought all of my testing … and he kind of just handed them back to me and said, “OK, well, I don ’t need this. ”So, I ’m looking for another doctor. I just didn ’t like the fact that he handed those tests back to me saying, “I really don ’t need these. ”So, I am looking for another doctor who will be interested in my problems. 72-year-old woman with the BRCA2 variant Clift et al. Hereditary Cancer in Clinical Practice (2019) 17:32 Page 4 of 7 One patient without a personal history of cancer asked about genetic testing services because of her family his- tory. Her physician did not think her genetic risk was a concern: I had my previous gynecologist, and she didn ’t really think it was any type of concern. She brushed it off. And I think when she brushed it off, I didn ’t think very much of it. ” 62-year-old woman with the BRCA2 variant Another patient had undergone BRCA1/2 testing 5 years prior, but the test results were negative. Her sister mentioned updates in genetic testing, but she was disap- pointed that she had to mention additional testing in- stead of her health care providers suggesting it: When I asked, they were, you know, “Sure, ”and insurance covered it. But I think if I didn ’t ask, I wouldn ’t know, and I was disappointed that it hadn ’t been brought to me, instead of me asking because my sister mentioned something. ” 62-year-old woman with BRCA1 -positive breast cancer When she received a positive result for a pathogenic variation of BRCA1 , she decided to undergo prophylactic surgery. Another patient explained that when she asked about genetic testing in the 1990s, her physicians did not think genetic testing was necessary because it was not routine. Now, she believes that physicians should recommend genetic testing to everyone with breast cancer: I had asked my oncologist up north about it because they were just finding out about this BRCA gene. And they said, “Well, I don ’t think that ’s necessary. ”I mean, they were very good physicians, don ’t get me wrong, I ’m not criticizing them, but I think they felt back in the 90s they know less than they know now. … I just feel that physicians, when they diagnose someone with breast cancer, should probably recommend genetic testing. A lot of them don ’t. 70-year-old woman with BRCA2 -positive breast cancer Discussion Patients with a genetic predisposition to cancer encoun- ter several challenges in their efforts to incorporate this knowledge into their medical care. Consistent observations from the current study include a lack of provider knowledge about the discovery of new cancer genes, associated risks, and clinical options for manage- ment. Patients also expressed an awareness of their phy- sicians ’discomfort in managing these risks and an appreciation for those physicians who made additional efforts to learn. Interestingly, those with pathogenic variants of newly characterized non- BRCA genes experienced many of the same barriers as those with pathogenic variants of BRCA1/2 , despite increased public awareness and med- ical knowledge about these more established genes. Such findings suggest an increasing gap between the pace of medical advances in genetics and the ability of providers to incorporate this information into clinical practice. Changes in health care have expanded the un- derstanding of the genetic basis of disease, the advent of next-generation sequencing has enabled commercial la- boratories to expand the availability of their clinical of- ferings, and a single test can now provide results for multiple known cancer-causing genes. In addition, direct-to-consumer tests are available that bypass the health care provider entirely. As a consequence, the re- sults of these tests can be difficult to interpret by both patients and health care providers alike because genetic testing technology outpaces the rate of medical research needed to understand associated risks and to develop evidence-based clinical treatment strategies. Within the general medical community, knowledge about genetic risk factors for breast cancer remains lim- ited [ 17]. Although more information exists about the risks and management options associated with BRCA1/ 2 , many regularly tested genes have received less atten- tion from the media and the research community. Gen- eral public awareness is low, and more importantly, patients and their health care providers may be uncer- tain about how these results affect cancer risk or on- going care [ 22]. This lack of certainty is exemplified by the observations of the patients in this study who were frustrated when they attempted to proactively manage their own genetic risk. Care guidelines for patients with pathogenic BRCA1/2 variants are well established [ 4] as confirmed by the survey findings that more BRCA1/ patients received prophylactic surgery. However, gaps remain in physician understanding about management recommendations, and these gaps may be more acute for less well-known genes. Pathogenic variants in these newly described genes are often less com- mon, which can affect the ability of researchers to accur- ately predict overall lifetime risks and to define optimal clinical strategies for screening and prevention. This un- certainty, in turn, results in a lack of clinical evidence that physicians can use in the everyday care of their patients. Our qualitative research confirms these issues. Clift et al. Hereditary Cancer in Clinical Practice (2019) 17:32 Page 5 of 7 This study has several limitations. The number of pa- tients interviewed was small, and the study cohort was recruited from only one tertiary care medical center. Additional research is needed to confirm whether these results occur in other patient populations and to the medical community at large. However, the data presented do suggest that, when confronted with unfamiliar information, health care pro- viders should consider taking proactive steps, such as reaching out to colleagues or consulting the literature; however, consulting the literature may not always be feasible given the amount of time available for most phy- sicians to devote to each patient. Physicians should receive education about how to refer a patient to a specialist who can provide management recommendations and how to access informative re- sources. Greater knowledge about care or management recommendations for health care professionals may help to improve patient experience. The National Compre- hensive Cancer Network has practice guidelines for mul- tiple genes related to the risk of hereditary breast cancer [ 4]. These guidelines are free, outline management rec- ommendations to consider, and emphasize when avail- able research is too limited to recommend changes in care. In an effort to remain pertinent, these guidelines are updated regularly, often at least once per year. Health care providers who are unable to refer patients to a high-risk breast cancer clinic can review these guide- lines to determine whether their patients should receive individualized care. Abbreviations BRCA1/2 :BRCA1 and BRCA2 Acknowledgements We ’d like to thank Emily Vargas and Zhou Li for statistical analysis. We ’d like to thank the patients who participated in this study for their time andthoughtful comments. Authors ’contributions KC contributed to survey design, conducted qualitative patient interviews, analyzed interview transcripts, and was a major contributor in writing themanuscript. SM identified potential patient participants, developed thesurvey design, analyzed patient interview transcripts, and was a major contributor in writing and editing the manuscript. SH obtained funding for the study, oversaw all aspects of research design, contributed to surveydesign, reviewed patient interview transcripts, and was a major contributorin writing and editing the manuscript. All authors read and approved the final manuscript. Authors ’information KC is a research program coordinator within the Center for IndividualizedMedicine, holds Instructor rank in the Mayo Clinic College of Medicine and Science, and has advanced training in conducting qualitative research. SM is a certified genetic counselor who holds rank as Assistant Professor ofMedical Genetics in the College of Medicine. SH is a Consultant of InternalMedicine in the Center for Breast Health, Chair of the Executive, Development, International Integrated Multidisciplinary Practice, holds rank as Associate Professor in the College of Medicine, and has a special interestin genetics and familial cancers. Funding The authors would like to thank the Center for Individualized Medicine for supporting the efforts of this study. The Center for Individualized Medicinehad no role in any of the study design, collection, analysis, or manuscriptpreparation or submission. Availability of data and materials The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request. Ethics approval and consent to participate This study was approved by the Internal Review Board ID: 17 –010074. Patient consent was obtained and participants signed a HIPAA waiver. Consent for publication Not Applicable. Competing interests The authors declare that they have no competing interests. Author details1Center for Individualized Medicine, Mayo Clinic, 4500 San Pablo Rd, Jacksonville, FL 32224, USA. 2Department of Clinical Genomics, Mayo Clinic, 4500 San Pablo Rd, Jacksonville, FL 32224, USA. 3Internal Medicine, Mayo Clinic, 4500 San Pablo Rd, Jacksonville, FL 32224, USA. Received: 29 July 2019 Accepted: 9 December 2019 References1. Miki Y, Swensen J, Shattuck-Eidens D, et al. A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1. Science. 1994;266(5182):66 –71. 2. Wooster R, Neuhausen SL, Mangion J, et al. Localization of a breast cancer susceptibility gene, BRCA2, to chromosome 13q12-13. Science. 1994; 265(5181):2088 –90. 3. Chen S, Parmigiani G. Meta-analysis of BRCA1 and BRCA2 penetrance. J Clin Oncol. 2007;25(11):1329 –33. 4. Daly MB, Pilarski R, Berry M, et al. NCCN guidelines insights: genetic/familial high-risk assessment: breast and ovarian, version 2.2017. 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Study sheds light on the ‘other ’breast cancer genes. 2017; https:// www.cnn.com/2017/07/20/health/breast-cancer-genes-jewish – women-study/index.html. Publisher ’sNote Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Clift et al. Hereditary Cancer in Clinical Practice (2019) 17:32 Page 7 of 7 BioMed Centralpublishes undertheCreative Commons Attribution License(CCAL). Under the CCAL, authors retaincopyright tothe article butusers areallowed todownload, reprint, distribute and/orcopy articles inBioMed Centraljournals, aslong asthe original workis properly cited.
Good day, I have a research I need help doing for my Principles of Evaluation and Research for Health Care Programs class. It is due on Tuesday by 6pm so I have time to read over before submission. O
Electron J Gen Med 2019 ;16(6 ):em 181 ISSN:2516-3507 OPEN ACCESS Case Report https://doi.org/10.29333/ejgm/115858 1 Medical Oncologist, Department of Medical Oncology, Hiwa Cancer Hospital, Sulaymaniyah, Kurdistan Region, Iraq . 2 Histopathologist, Department of Pathology Lab, Hiwa Cancer Hospital, Sulaymaniyah, Kurdistan Region, Iraq . 3 Radiologist, Department of Radiology, Hiwa Cancer Hospital, Sulaymaniyah, Kurdistan Region, Iraq . 4 MSPH, BPH, Research Department, General Directorate of Health, Sulaimani, Iraq . 5 PhD, MSC, HDCM, BPH, & DCM, Department of family & Community Medicine, Col lage of Medicine, University of Sulaimani. Sulaimani, Iraq . Received: 29 Jun 201 9, Accepted: 25 Nov 201 9 Correspondence: Sara Jamil Nidhamalddin Medical Oncologist, Department of Medical Oncology, Hiwa Cancer Hospital, Sulaymaniyah, Kurdistan Region, Iraq . E- mail: [email protected] © 2019 by the authors; licensee Modestum Ltd., UK. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/4.0/). Electronic Journal of General Medicine Breast cancer metastasis from Gastric Carcinoma in a young female Sara Jamil Nidhamalddin 1, Hemin Abdulwahab Hassan 2, Kalthum Ali 3, Khalid Anwar Hama G hareeb 4, Mohammed Ibrahim Mohialdeen Gubari 5 ABSTRACT Gastric cancer is a disease of elderly patients and mainly metastasis to liver, lung, and peritoneum, while signet ring cell is a variant of gastric cancer and commonly metastasis to peritoneum and lymph nodes. Metastasis to mammary is a rare condition which account for 3% and has poor prognosis. Generally extra mammary carcinoma precedes breast metastasis by 2 years. It ’s uncommon to have breast metastasis as a first manifestation of extra mammary malignancies. There is no age limit and presentation my mimic primary breast cancer. Due to rarity of this condition there are no consensuses about clinical, radiological and histological features which make it a challenging task to distinguish primary from metastatic breast neoplasm. The case bellow is a young woman with di agnoses of diffuse -signet ring cell gastric cancer. First presentation was right breast edema with ascites, peritoneal nodules, and enlarged enhancing ovaries on imaging. Biopsy from each site confirmed involvement by metastatic adenocarcinoma with signet ring pattern. Her condition progressed after 5th cycle of EOX. Keywords: Gastric cancer, breast metastasis, young age INTRODUCTION Gastric cancer at young ages is rare. The median age at diagnosis is 71 years and is the second most common cause of death worldwide (1). Incidence of signet ring cell gastric cancer ranges from 3.4% in Japan to 39% in western countries (2,3) and accounts for 29% of gastric cancers, it occurs most commonly in women and mainly younger age groups, it is less chemo -sensitive with poor prognosis than intestinal type (4,5). Diffuse -signet ring cell type exhibits very little cell cohesion with predilection for extensive sub-mucosal spread and early metastasis (6), diffuse form ’s main carcinogenic event is loss of E- cadherin expression through mutation of CDH1 gen (7). Carcinoma of stomach can spread by local extension, hematogenous spread, lymphatic dissemination or seeding of peritoneal surface, wide spread metastasis may involve any organ, especially liver, lung and peritoneum (6, 8,9), while signet ring cell subtype ’s main metastatic sites are peritoneum and lymph nodes rather than liver (10). Metastatic lesions to the breast from extra -mammary neoplastic lesions are unusual with poor prognosis. The most common reported sources are malignant melanomas, lymphoma/leukemia group, contralateral breast carcinoma, lung carcinoma and carcinoid tumors (11,12). There is no consensus on a distinct clinical and radiologic presentation (12,13). Although diagnosis of primary malignancy usually precedes detection of the breast lesion in some cases may have no history of malignancy (13). Nidhamalddin et al. / Breast cancer metastasis from Gastric Carcinoma in a young female 2 / 7 http://www.ejgm.co.uk CASE PRESENTATION A 32- year -old married lactating woman, mother of 3 children presented to breast clinic with a rapid painless diffuse swelling of right breast over few weeks, not associated with redness, she had also mild diffuse abdominal pain but good appetite no vomiting no weight loss or change in bowel habit. Her review of systems was otherwise negative, no family history of cancer. At breast clinic ultrasound and mammography of breast was taken the ultrasound of right breast revealed large size, hard, moderately heterogeneous tissue texture, multiple well defined hypo -echo ic cystic lesions, largest one is 14*9mm at 10 o’clock with multiple duct dilatation and periductal thickening. In right axilla inflammatory lymph node of 13*5mm was detected, cortex of 3mm, echogenic hilum was detected, normal left breast and left axilla. Mammography CC and MLO view was taken, breast composition ACR 4, a single superficial well defined dense lesion at superior -lateral aspect was seen, normal left breast, clear both axillae ( F ig ure 1 ). Core biopsy from the mass was taken, histopathology reported metastatic mucin secreting adenocarcinoma (F ig ure 2 ). IHC was as follow ( ER negative, PR negative, HER2 negative, KI 67: 60%, E- cadherin positive, CA125 negative, WT1 negative, mammaglobin negative, CDX2 positive, moderate nuclear staining ( Fig ure 3 ). Figure 1: Mammography Figure 2: Breast tissue histology Electron J Gen Med 2019;16(6):em181 http://www.ejgm.co.uk 3 / 7 Abdominal and pelvis ascites,diffuse infiltration of the peritoneum with omental cake as well as stranding of pelvic fat, enlarged and enhanced right and left ovary, diffuse gastric wall thickening were visualized on Dynamic staging computed tomography (CT)scan of chest, abdomen and pelvis. Tumor markers were as follows CEA: 1.2 ng/ml, AFP: 2.23 Iu/ml, CA 19.9: 0.62 u/ml, CA 125: 62.6 u/ml, CA 15.3: 19.7 u/ml. Gastroenteroscopy was performed, easily bleeding ulcers was seen over great curvature from mid body till antrum ( F ig ure 4 ), histopathology of gastric lesion reported poorly differentiated adenocarcinoma diffuse signet ring type ( F ig ure 5 ), IHC results was positive for AE1/AE3 and negative HER2 status. With collaboration of our oncologist, pathologist, radiologist we diagnosed and managed our case as signet ring cell gastric cancer, and she was started on EOX (EPIrubicin 50mg/m 2, OXALIplatin 130mg/m 2, Capecitabin 625mg/m 2), on fifth cycle there was progression on image study, and unfortunately we lost her after 2 weeks. ER PR CK Figure 3: Breast tissue histology Figure 4: Gastric endoscopy Nidhamalddin et al. / Breast cancer metastasis from Gastric Carcinoma in a young female 4 / 7 http://www.ejgm.co.uk DISCUSSION Breast cancer accounts for the most common malignancies, but metastasis to breast from extra mammary malignancies is a rare condition and comprising around 3% of breast malignancies, the majority are from contralateral breast, less than 0.5% resulted from extra mammary sites (14). In 25% of cases breast involvement is bilateral (15). Prognosis is poor, according to reported cases overall survival ranged from 12 day to 18 month (16). Around 400 cases have been reported to have breast metastasis from extra -mammary sides, their incidence ranged from 1.7% -6.6%, 1.2% -2%, 2.7% in (autopsy, clinical, and cytological reports) (17), and the most common source from highest to lowest rate were from melanom a, lung, ovary, prostate, kidney, stomach, ileum, thyroid, cervix, squamous cell carcinoma of the tongue and floor of the mouth, fibrosarcoma of the nasal septum and pancreatic adenocarcinoma. With our case another 38 case have been reported so far to have metastatic disease from stomach, 22 of them had histological feature of signet ring cell carcinoma (16). Unlike our case that had synchronous multiple metastasis at presentation, breast metastases appears on the average 1.9 – 2.0 years after discovery of the primary lesion (12,13,18), and usually signifies disseminated metastatic gastric tumor ( 15, 19), while in some cases there may be no history of neoplasm (14). The age at diagnosis ranges from 22 -70 years (mean 46 years; median 46.5 years) (16, 20,21). Breast metastasis from gastric carcinoma mainly occurs in female (95%) than male (5%), Georgiannos et al . (14) attributed the reason behind this phenomena to differences in size and vascuarity between two gender ’s breast, hormonal factors, endothelial cell adhesion molecule, angiogenic factors, immunologic determinants, hormone receptor, or other cellular components also may play a role since they are expressed differently in male and female breast. Secondary involvement of breast occurs mainly in elderly patients while lung and gastric cancer particularly signet ring cell variant of stomach develop in younger age group and anticipate more aggressive nature (22,23). Clinical manifestations are quite similar to primary breast cancer which make suspicion of elsewhere primaries unusual but essential to avoid; unnecessary radical operation and providing optimal treatment, reported cases in literatures had different presentation, from inflammatory breast cancer (18,24,25) to painful/painless lumps and often occur in upper outer quadrant with presence of axillary lymphadenopathy (12,13). Radiological findings are not specific which makes the diagnosis quit difficult, they may present as a solitary or multiple lesi ons, well demarcated or poorly marginated masses, diffuse hypoechoic lesions, diffuse involvement of skin or parenchyma or both (12,20), and some time there is no any radiologic findings (26,27). Kawak et al . reported that for those with clinical feature suggesting inflammatory breast carcinoma after confirmation of signet ring cell breast carcinomas has been made, metastatic signet ring carcinomas should be considered if there is no micro -calcification or masses on radiographic findings ( 13, 18). But metastasis from ovarian carcinoma may demonstrate microcalcification with psammoma bodies (28,29). Pathologically it ’s hard to differentiate between primary breast cancer and metastasis, breast cancer can have ambiguous histological feature that can be easily mistaken for extra mammary cancers. (14) Some histologic feature my help in recognizing secondary from primary like absence of elastosis which is found in primary and indicating a slow Figure 5: Histopathology of gastric tissue sample Electron J Gen Med 2019;16(6):em181 http://www.ejgm.co.uk 5 / 7 growth and rarely found in secondary tumors (30). A sharp transition at the border of the tumor my give clue for metastasis (31). Tumors in subcutaneous rather than parenchymal or breast tissue and absence of in situ component support extra mammary origin (14) . Tumor metastasize to breast by unexplained pathway, this intriguing situation have been attributed to estrogen and high blood supply of breast in premenopausal women (32,33). Unlike our case in most of the reported cases breast metastasis from gastric cancer has happened in left breast although there is no consistent explanation but Lee et al, (19) reported that this laterality may suggest presence of a lymphatic pathway or higher incidence of breast invasion from stomach via left supraclavicular lymph node . With our case another 5 cases have been reported to have breast and ovarian metastasis, it is uncommon to have invasion of hormonal – dependant organs especially in premenopausal women (26). Immunohistichemistry of breast metastasis from stomach are usually positive for CK7, CEA, and GATA3 but negative for GCDFP -15(gross cystic disease fluid protein -15), ER, PR, and CK20. (34,35) What supported our case to have breast metastasis from gastric cancer was having positive CDX2, CK7 and negative CK20, ER, PR, CA12 5, WT1, Mammaglobin, HER2 status. IHC can differentiate metastatic signet ring cell carcinoma from primary signet ring cell carcinoma of breast, the latter one is a variant of invasive lobular carcinoma of breast and account for 14% of breast cancer (36), its incidence is increasing among postmenopausal women and have aggressive nature with tendency for early metastasis to abdomen and GIT tract, on IHC they demonstrate positive ER, PR and GCDFP (34,37). CONCLUSION Breast metastasis from extra -mammary sites is uncommon with poor prognosis; clinical presentation might be quit misleading to primary breast cancer. 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An Update of Tumor Metastasis to the Breast Data. Arch Surg. , 1999 April;134(4): 450. https://doi.org/10.1001/archsurg.134.4.450 PMid:10199322  http://www.ejgm.co.uk Copyright ofElectronic JournalofGeneral Medicine isthe property ofModestum Publications anditscontent maynotbecopied oremailed tomultiple sitesorposted toa listserv without thecopyright holder’sexpresswrittenpermission. However,usersmayprint, download, oremail articles forindividual use.
Good day, I have a research I need help doing for my Principles of Evaluation and Research for Health Care Programs class. It is due on Tuesday by 6pm so I have time to read over before submission. O
M I D D L E E A S T J O U R N A L O F FA M I LY M E D I C I N E • V O L U M E 7 , I S S U E 1 0 WORLD FAMILY MEDICINE/MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 18 ISSUE 1, JANUARY 2020 O R I G I N A L C O N T R I B U T I O N Knowledge, attitudes, and practices related to breast cancer screening among women visiting primary care centers in Abu Dhabi Noora Ali Al Blooshi (1) Ruqayya Saaed Al Mazrouei (1) Hind Nasser Al Razooqi (1) Ebtihal Ahmad Darwish (2) Maha Mohamed Al Fahim (1) Fozia Bano Khan (3) (1) Department of Family Medicine, Sheikh Khalifa Medical City, Abu Dhabi, United Arab Emirates (2) Department of Family Medicine, Ethraa Consultation and Training Center, Dubai, United Arab Emirates (3) Department of Family Medicine, Ambulatory Healthcare Services, Abu Dhabi, United Arab Emirates Corresponding author: Noora Ali AlBlooshi Department of Family Medicine, Sheikh Khalifa Medical City, Abu Dhabi, United Arab Emirate Email: [email protected] Received: November 2019; Accepted: December 2019; Published: January 1, 2020. Citation: Noora Ali Al Blooshi; Ruqayya Saaed Al Mazrouei; Hind Nasser Al Razooqi. Knowledge, attitudes, and practices related to breast cancer screening among women visiting primary care centers in Abu Dhabi World Family Medicine. 2020; 18(1): 5 -15. DOI: 10.5742MEWFM.2020.93723 Abstract Breast cancer is the most common type of cancer among women in the United Arab Emirates. Screening for breast cancer can reduce morbidity and mortality and improve women’s survival rate. Low knowledge levels and poor practices related to breast cancer screening could be due to many factors; therefore, we assessed the knowledge, attitudes, and practices related to breast cancer screening of women visiting primary care centers in the Abu Dhabi region. A cross-sectional study was conducted in 2017 using a questionnaire to measure breast cancer screening awareness. Six primary healthcare centers within 40 km of Abu Dhabi were included. Participants were 383 women aged 40–65 years. Facilities that screen for breast cancer were underutilized by women. Although many women had a high knowledge of breast can – cer (45.7%), they were not obtaining mammograms regularly (52.2%). Compared to their counterparts, women with higher education, employment, and a family history of breast cancer had significantly better knowledge (Ps < .001, .018, and .013, respec – tively), while women aged > 49 years followed bet – ter practice of obtaining mammograms (P < .001). Women who visited clinics inside Abu Dhabi island had better knowledge and practices than did those visiting clinics outside the island, while the oppo – site was true concerning attitudes. Education level, age, and region played a role in women’s knowl – edge, attitudes, and practices related to breast can – cer screening. Primary care providers often have the first contact with women and should utilize this opportunity to spread awareness. Social media and public service campaigns can also be employed, and free mammograms could be offered to lower- income women. Disseminating awareness about screening will also reduce the burden of breast cancer treatment on national healthcare systems. Research should be done on the degree of utiliza – tion of mammograms and the impact of screening on the healthcare system. Key words: breast cancer, screening, knowledge, attitudes, practice, Abu Dhabi M I D D L E E A S T J O U R N A L O F FA M I LY M E D I C I N E • V O L U M E 7 , I S S U E 1 0 WORLD FAMILY MEDICINE/MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 18 ISSUE 1, JANUARY 2020 O R I G I N A L C O N T R I B U T I O N Introduction Breast cancer is a major health burden worldwide, impacting 2.1 million women annually, and is a leading cause of death among women. “In 2018, it was estimated that 627,000 women died from breast cancer; that is approximately 15% of all cancer deaths among women” [1]. According to the International Agency for Research on Cancer, “Among females, breast cancer is the most commonly diagnosed cancer and the leading cause of cancer death, followed by colorectal and lung cancer (for incidence), and vice versa (for mortality); cervical cancer ranks fourth for both incidence and mortality” [2]. Globally, breast cancer incidence and mortality are expected to increase by 50% between 2002 and 2020. The highest incidence remains in the developed world; however, incidence rates are increasing in other areas of the world [3]. Incidence rates vary globally, ranging from 91.6 per 100,000 women in North America to 43 per 100,000 in the Middle East and Northern Africa [2]. Breast cancer remains a major public health threat among women in the Arab world, with the United Arab Emirates (UAE) ranking seventh in the increase in incidence rate [4]. Further, breast cancer is the most common cancer and the leading cause of death among women in the UAE, according to a 2014 report released by the Department of Health in Abu Dhabi [4]. Breast cancer is also the second leading cause of death among women in Abu Dhabi, comprising 20.3% of the five most common cancers in 2014 [5–7]. The impact of breast cancer can be reduced through various practices including performing breast self- examinations, undergoing clinical breast examinations, and obtaining mammograms. The UAE government has made great efforts in promoting early cancer detection through various health authorities. The Health Authority of Abu Dhabi established a breast cancer screening program in 2008. Despite this, screening rates have not yet reached ideal levels. A recent study conducted in 2014 in Al Ain, UAE showed that a lack of knowledge about breast cancer is not the only reason for the delay in early presentation; other factors such as personal, social, and cultural issues also contribute to the delay [8]. Furthermore, a 2010 study conducted in Dubai, UAE revealed insufficient breast cancer screening practices among local women, in addition to a lack of awareness of the common risk factors and signs and symptoms of breast cancer [8]. No other studies have assessed the impact of breast cancer screening in Abu Dhabi. Therefore, we measured the knowledge level, attitudes, and practices related to breast cancer screening of women visiting primary healthcare centers in Abu Dhabi, UAE. Materials and methods Study design and participants This cross-sectional study was conducted among women visiting six primary healthcare clinics in Abu Dhabi; Al Bateen, Zafaranah, Rowda, Maqta, Mohammed Bin Zayed, and Baniyas, between August 2016 and August 2017 using a self- administered questionnaire. The target population was women aged 40–65 years who visited primary care centers within 40 km of Abu Dhabi, regardless of their nationality. Stratified random sampling was used to calculate the sample size for each clinic. We excluded women who were non-Abu Dhabi residents, non- English or non-Arabic speaking individuals, and women who had a personal history of breast cancer. Monthly income was subjectively reported by participants as being sufficient, sufficient and saving, or insufficient. The estimated target population size was 168,286 women,aged 40–65 years,based on the 2015 statistical yearbook of Abu Dhabi [3]. The sample size (N = 383) was calculated using an online sample size calculator (Newcombe formula) using a 95% confidence interval and a 5% margin of error. At each clinic, questionnaires were distributed to women who met the inclusion and exclusion criteria, using a stratified random collection, until the required numbers were attained. Study instrument and ethical approval Arabic and English versions of the questionnaire were developed, which were adapted from a validated questionnaire used in a study similar to ours in Dubai City [9]. The questionnaire was revised to meet our objectives by modifying some of the questions (S1 Appendix). The self-administered questionnaire contained 102 questions and was divided into four parts that addressed participants’ sociodemographic characteristics (17 questions) breast cancer screening knowledge (28 questions), attitudes (5 questions), and practices (7 questions). A scale scoring system was used to categorize knowledge, attitudes, and practices as follows: knowledge = good (19–27 points), fair (9–18 points), or poor (0–8 points); attitudes = positive (4 points), neutral (2–3 points), or negative (0–1 points); and practices = good (2 points) or bad (0–1 points). Questions intended to assess breast cancer screening knowledge included risk factors of breast cancer, age group with the highest risk for cancer, symptoms of breast cancer, different methods of screening, and how frequently the method needs to be repeated. Questions intended to assess attitudes toward mammogram screening and opinions about mammograms asked about their importance for early detection, increased anxiety, ease of performing, and whether they should be performed regularly. Questions intended to assess breast cancer screening practices asked about women’s practice and frequency of obtaining mammograms. Obtaining mammograms every 2 years was considered good practice. M I D D L E E A S T J O U R N A L O F FA M I LY M E D I C I N E • V O L U M E 7 , I S S U E 1 0 WORLD FAMILY MEDICINE/MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 18 ISSUE 1, JANUARY 2020 O R I G I N A L C O N T R I B U T I O N Informed consent forms were attached to each questionnaire for the participants to read and sign if they were willing to participate. Questionnaires and consent forms were drafted in English and Arabic. A pilot study was conducted after ethical approval was granted from Ambulatory Healthcare Services Research Committee in Al Ain City to assess the comprehensibility of the questionnaire. Twenty questionnaires were distributed among women who visited primary care centers and met our criteria, and modifications were made to the questionnaire to meet our aim accordingly. Data collection Questionnaires were printed and then proportionally distributed to the six primary healthcare clinics in Abu Dhabi. The charge nurses at these health centers were briefed regarding the questionnaire and given training regarding participants’ anonymity and informed consent. The charge nurse at each clinic was asked to distribute the questionnaires randomly to patients who matched the inclusion criteria. After completion, the nurses collected and sealed the questionnaires in envelopes to ensure participants’ confidentiality. After the end of the study period, the charge nurse was asked to return the completed questionnaires to the authors. Data analyses After collection of the questionnaires, the obtained data were organized using Microsoft Excel, and coded and analyzed using SPSS version 18. Means and standard deviations were used for numerical data, and percentages for categorical data. First, chi-squared (χ2) tests were conducted to assess the effect of various factors on breast cancer screening knowledge, attitudes, and practices. Factors analyzed in this study included age, education, employment status, marital status, monthly income, menopause history, age of menopause, family history of breast cancer, age at first pregnancy, details of living children, and breastfeeding practice. Results Participants’ demographic characteristics A total of 383 questionnaires were distributed. Participants’ demographics are displayed in Table 1. Breast cancer screening knowledge Table 2 shows the percentages of correctly answered questions regarding knowledge of breast cancer screening among the participating women. Overall, 45.7% had good knowledge about breast cancer screening, 48.8% had fair knowledge, and 5.5% had poor knowledge. Additional details are provided below. Factors affecting breast cancer screening knowledge Table 3 shows that, as women’s education level increased, their level of knowledge regarding breast cancer significantly improved. Moreover, better breast cancer screening knowledge was found among women who were employed and those who had a family history of breast cancer, than did their counterparts. Women who had good or fair knowledge were found to have better attitudes and practices regarding breast cancer screening than those with poor knowledge. Table 1: Participants’ sociodemographic characteristics M I D D L E E A S T J O U R N A L O F FA M I LY M E D I C I N E • V O L U M E 7 , I S S U E 1 0 WORLD FAMILY MEDICINE/MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 18 ISSUE 1, JANUARY 2020 Table 2: Breast cancer screening knowledge of women visiting primary care centers in Abu Dhabi (N = 383) O R I G I N A L C O N T R I B U T I O N M I D D L E E A S T J O U R N A L O F FA M I LY M E D I C I N E • V O L U M E 7 , I S S U E 1 0 WORLD FAMILY MEDICINE/MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 15 ISSUE 10, DECEMBER 2017WORLD FAMILY MEDICINE/MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 18 ISSUE 1, JANUARY 2020 Table 3: Factors affecting breast cancer screening knowledge O R I G I N A L C O N T R I B U T I O N M I D D L E E A S T J O U R N A L O F FA M I LY M E D I C I N E • V O L U M E 7 , I S S U E 1 0 1 0 WORLD FAMILY MEDICINE/MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 15 ISSUE10, DECEMBER 2017WORLD FAMILY MEDICINE/MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 18 ISSUE 1, JANUARY 2020 Breast cancer screening attitudes Table 4 shows participants’ attitudes toward breast cancer screening. Approximately one-quarter held positive attitudes about breast cancer screening, while most held neutral attitudes. Table 4: Breast cancer screening attitudes of women visiting primary care centers in Abu Dhabi (N = 383). Factors affecting breast cancer screening attitudes Table 5 shows that older women held better attitudes toward breast cancer screening than did their younger counterparts. Positive breast cancer screening attitudes were also found among women who were unemployed, had living children, and breastfed their children. Women who held positive and neutral attitudes were found to have better practices regarding breast cancer screening than those with negative attitudes. O R I G I N A L C O N T R I B U T I O N M I D D L E E A S T J O U R N A L O F FA M I LY M E D I C I N E • V O L U M E 7 , I S S U E 1 0 1 1 WORLD FAMILY MEDICINE/MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 15 ISSUE10, DECEMBER 2017WORLD FAMILY MEDICINE/MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 18 ISSUE 1, JANUARY 2020 Table 5: Factors affecting women’s breast cancer screening attitudes O R I G I N A L C O N T R I B U T I O N M I D D L E E A S T J O U R N A L O F FA M I LY M E D I C I N E • V O L U M E 7 , I S S U E 1 0 1 2 WORLD FAMILY MEDICINE/MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 15 ISSUE10, DECEMBER 2017WORLD FAMILY MEDICINE/MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 18 ISSUE 1, JANUARY 2020 Breast cancer screening practices Table 6 shows participants’ breast cancer screening practices. Only about half had good practices and obtained mammograms. Additional details are provided in Table 6. Table 6: Breast cancer screening practices of women visiting primary care centers in Abu Dhabi (N = 383) O R I G I N A L C O N T R I B U T I O N M I D D L E E A S T J O U R N A L O F FA M I LY M E D I C I N E • V O L U M E 7 , I S S U E 1 0 1 3 WORLD FAMILY MEDICINE/MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 18 ISSUE 1, JANUARY 2020 Factors affecting breast cancer screening practices Table 7 shows that older women had good practices regarding obtaining mammograms. Good breast cancer screening practices were also found among women who were married, post-menopausal, and had a family history of breast cancer. Table 7: Factors affecting women’s breast cancer screening practices O R I G I N A L C O N T R I B U T I O N M I D D L E E A S T J O U R N A L O F FA M I LY M E D I C I N E • V O L U M E 7 , I S S U E 1 0 1 4 Recommendation This study examined the knowledge, attitudes, and practices related to breast cancer screening among women in the Abu Dhabi region. We will compare our results with those of studies conducted in Ras Al Khaimah [10] and Al Ain, UAE [8] and Najran, Saudi Arabia [11]. The level of knowledge about breast cancer in our study was 45.7%, compared to 10.2% in Saudi Arabia and 5% in Al Ain. The higher percentage found in this study could be attributed to the fact that most women included were younger and had access to evidence-based medicine through the Internet. Another reason could be that women were influenced by social media or becoming more trusting of their primary care providers regarding health-related problems. Surprisingly, we found a similar outcome as that of the Al Ain study regarding knowledge about risk factors of breast cancer. Our results showed that women knew that breast cancer is the most common cancer among women in the UAE and that breastfeeding is protective against breast cancer; however, they were not sure when mammograms should be obtained. Both our results and those of the Al Ain study showed that being younger and educated were associated with improved knowledge levels than were being older and less educated. Our findings and those from Saudi Arabia showed that higher education level, being employed, and having a personal or family history of breast cancer had a significant impact on knowledge about breast cancer screening. The reason for this could be that primary care doctors are providing effective consultations. This is reflected in our findings, which showed that primary healthcare providers were the primary source of information for women in Abu Dhabi. Social media also plays a role in spreading news about the importance of breast cancer screening. Findings from Saudi Arabia showed that most women get their information from social media (52.4%) and only 8.8% received it from a primary care doctor. Furthermore, in the Al Ain study, it was revealed that 38% women obtained their information from their healthcare provider. Moreover, public service campaigns in universities, schools, and communities can be employed to spread awareness of the importance of breast cancer screening. On comparing those living on or around the island of Abu Dhabi, women living on the island were found to have the most knowledge. The reason for this could be that more campaigns about cancer occur on the island than in areas around it. Women who live around the island (rural places) are more likely to be homemakers and have less education. This study showed that regardless of having access to free mammograms, there was a lack of knowledge and underutilization of the service. Similar results were found in the studies done in Al Ain and Saudi Arabia. In our study, 47% of the women were obtaining mammograms, as compared to 44.9% in the Al Ain study [8], 37.6% in the Ras Al Khaimah study [10], and 15% in the Saudi Arabia study [11]. The higher percentage than those of prior studies could be attributed to the awareness campaigns that are conducted by the UAE health authorities, and that free mammograms are offered from October to November (breast cancer awareness month) for women with insurance, which does not cover mammograms. Although the current study revealed the highest rate of obtaining mammograms, overall, it was still considered to be poor. Reasons for this could include that some women do not feel comfortable being examined by doctors, and only seek medical advice when they discover something abnormal about their breasts, or are too busy. WORLD FAMILY MEDICINE/MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 15 ISSUE 10, DECEMBER 2017WORLD FAMILY MEDICINE/MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 18 ISSUE 1, JANUARY 2020 O R I G I N A L C O N T R I B U T I O N Knowledge, attitudes, and practices across primary care clinics in Abu Dhabi When comparing clinics within and outside Abu Dhabi, the best knowledge level and breast cancer screening practices were found in Rowdah, followed by Zafrana and Al Bateen. However, the most positive attitudes were found in Baniyas, followed by Al Bateen and Maqta. These results were significant (Table 8). Table 8: Knowledge, attitudes, and practices between primary care clinics in Abu Dhabi. a. MBZ: Mohamed Ben Zayed M I D D L E E A S T J O U R N A L O F FA M I LY M E D I C I N E • V O L U M E 7 , I S S U E 1 0 1 WORLD FAMILY MEDICINE/MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 15 ISSUE 10, DECEMBER 20177WORLD FAMILY MEDICINE/MIDDLE EAST JOURNAL OF FAMILY MEDICINE VOLUME 18 ISSUE 1, JANUARY 2020 Both our study and the one conducted in Al Ain showed that women aged 49 years or older were more likely to obtain mammograms than were their younger counterparts. Reasons for this could be that younger women think they are not the target for the screening program. Older women may also have chronic diseases that they seek medical advice for; consequently, their primary healthcare providers may offer mammograms more often simply because they see them more often. When comparing between clinics, regions played an important role. Women located in Abu Dhabi had obtained mammograms more frequently than did those around Abu Dhabi. Perhaps women who live in the city tended to be more knowledgeable and aware of the importance of breast cancer screening than women around the city. Moreover, more campaigns are implemented in Abu Dhabi than around it. Conclusion In our study, we found that, despite having the modalities and services for breast cancer screening, women were still underutilizing these options. The participating women had a good knowledge about breast cancer but poor practice of obtaining mammograms. Education level, age, and region all played a key role in women’s knowledge, attitudes, and practices related to breast cancer screening. Primary care providers, who are often women’s first point of contact, should help spread awareness concerning breast cancer screening. Strategies that can be implemented include utilizing social media, implementing more public service campaigns, and offering free mammograms to women who cannot afford to pay for them. Hopefully, these measures will also reduce the burden of breast cancer treatment on national healthcare systems. Acknowledgements We express our deep gratitude to Milany, Baverleen, Heba, Shadia, and Khaleel, who were the charge nurses of the primary care centers, for their hard work, patience, and help in distributing the questionnaires confidentially. There was no compensation given to the participants; they volunteered to help us with the research. References 1. World Health Organization. Cancer. Available from: http:// www.who.int/cancer/prevention/diagnosis-screening/ breast-cancer/en/ 2. Bray F, Ferlay J, Soerjomataram I, Siegel RL, Torre LA, Jemal A. Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin. 2018;68:394- 424. 3. Statistical yearbook of Abu Dhabi 2016. Statistic Center. Available from: https://www. s c a d . a e / R e l e a s e % 2 0 D o c u m e n t s / S Y B – 2016%20EN%202016AUG14.pdf 4. Cancer Incidence in United Arab Emirates Annual Report of the UAE – National Cancer Registry – 2014. United Arab Emirates Ministry of Health & Prevention. Available from: http://www.mohap.gov.ae/Files/MOH_OpenData/520/UA E%20Cancer%20Regustry%20Report%202024_En.pdf 5. Check S. Cancer Facts & Statistics. Available from: https://www.haad.ae/simplycheck/tabid/140/Default.aspx 6. UICC. IARC release the latest world cancer statistics. 2013. Available from: https://www.uicc.org/iarc-release- latest-world-cancer-statistics 7. Shaheen R. Abu Dhabi and United Arab Emirates: breast cancer overview. In: Global Perspectives of Cancer: Incidence, Care, & Experience; 2014. pp. 267-275. 8. Elobaid Y, Aw T, Grivna M, Nagelkerke N. Breast cancer screening awareness, knowledge, and practice among Arab women in the United Arab Emirates: a cross-sectional survey. PLoS ONE. 2014;9:e105783. 9. Ahmed AM, Farghaly S, Darwish E. Knowledge, attitude and practice of breast cancer screening among women visiting primary care centers in Dubai. The Egyptian journal of community medicine. 2010. Vol 28. No 4.____ 10. Albeshan S, Hossian S, Mackey M, Osmani S, Brennan P. Understanding better the knowledge, beliefs, and attitudes toward breast cancer and breast screening practices among women living in Ras al Khaimah, United Arab Emirates (UAE). Sri Lanka: the 3rd International Conference on Public Health. 2017. doi: 10.17501/ icoph.2017.3224 11. Alshahrani M, Alhammam S, Al Munyif H, Alwadei A, Alwadei A, Alzamanan S et al. Knowledge, attitudes, and practices of breast cancer screening methods among female patients in primary healthcare centers in Najran, Saudi Arabia. J Cancer Educ. 2018;1-6. doi: 10.1007/ s13187-018-1423-8 O R I G I N A L C O N T R I B U T I O N Copyright ofMiddle EastJournal ofFamily Medicine isthe property ofMedi+WORLD International Pty.Ltdand itscontent maynotbecopied oremailed tomultiple sitesorposted to alistserv without thecopyright holder’sexpresswrittenpermission. However,usersmay print, download, oremail articles forindividual use.
Good day, I have a research I need help doing for my Principles of Evaluation and Research for Health Care Programs class. It is due on Tuesday by 6pm so I have time to read over before submission. O
Comme ntary: Utilizing Community -Engaged Approaches to Investigate and Address Hmong Women’s Cancer Disparities by Shannon M.A. Sparks , Pang C. Vang, Beth Peterman, Lisa Phillips and Mayhoua Moua . Hmong Studies Journal, 15(1): 1 -18. 1 Commentary : Utilizing Community -Engaged Approaches to Investigate and Address Hmong Women’s Cancer Disparities By Shannon M.A. Sparks, PhD 1 Pang C. Vang, RN, CHES, MEd 2 Beth Peterman, BS, MSN, APNP -BC 2 Lisa Phillips, MEd, CHES 3 Mayhoua Moua 4 Hmong Studies Journal, 15(1): 1 -18. Abstract Cancer is a growing concern for women in the Hmong community. Hmong women experience poor health outcomes for both cervical and breast cancer, largely due to low rates of screening and resultant late -stage at diagnosis. Both breast and cervical cancer screening are complicated by a multitude of social, cultural and environmental factors which influence health care decision -making and can otherwise serve to restrict access. We argue that c ommunity -engaged research , an orientation which prioritizes collaborative, equitable partnerships and community voice in identifying both problems and solutions, can be a valuable approach to helping address cancer health disparities for Hmong women. Using the Milwaukee -based “He althy Hmong Women” project as a case example, we detail how the community -engaged approach implemented by the project partners was critical in identifying factors contributing to Hmong cancer disparities and appropriate interventions, as well as the overal l acceptance and success of the project. Specifically, we discuss how this approach : (1) promoted community investme nt and ownership in the project; (2) facilitated the integration of local perspectives and ex periences; (3) built capacity to addre ss cance r screening disparities; (4) facilitated the creation of interventions targeting multiple ecological levels ; and (5) framed the community as the foundation and driver of positive change. 1 Department of Civil Society and Community Studies, School of Human Ecology, University of Wisconsin –Madison, Madison, Wisconsin 2 Institute for Urban Health Partnerships , College of Nursing, University of Wisconsin – Milwaukee, Milwaukee, WI 3 City of Milwaukee Health Department, Milwaukee, WI 4 Moua Consulting Group, Milwaukee, WI Comme ntary: Utilizing Community -Engaged Approaches to Investigate and Address Hmong Women’s Cancer Disparities by Shannon M.A. Sparks , Pang C. Vang, Beth Peterman, Lisa Phillips and Mayhoua Moua . Hmong Studies Journal, 15(1): 1 -18. 2 Introduction In recent years, awareness of and attention to health disparities in Hmong communities in the United States (U.S.) has been increasing. Based on a growing coll ection of regional and local studies, we know that Hmong -Americans suffer from elevated rates of cancer, cardiovascular disease, diabetes, hepatitis, hypertension and gout (Smalkoski et al., 2012; Xiong et al., 2013) . However, to date there have been no large scale studies examining Hmong health disparities , and little data exists to evaluate the prevalence or burden of these diseases nationally (Smalkoski et al., 2012) . What research does exist tends to focus on specific dise ases or specific communities with larg e Hmong populations, or includes Hmong as one of several populations of interest. The reasons behind this relative neglect of Hmong Americans in the health disparities literature are twofold. First, while the Hmong population has increased significantly over the past two decades, they still constitute only a very small percentage (.08% ) of the U .S. population (Pfeifer & Yang, 2013) . Consequently, the Hmong tend to get lumped toge the r with other Asian/ Pacific Islander (A PI) groups for purposes of research and data reporting . This practice leads to the second problem. T he A PI population has the lowest all -cause mortality rate of any racial ethnic group in the United States (Population Reference Bureau, 200 2) , thus any disparities in health experienced by Hmong Americans get masked by their inclusion within the broader A PI category (Ro, 2002) . Cancer is one area of concern where significant disparities have been masked by their inclusion within the comparatively low cancer -risk A PI category. While overall cancer rates in the Hmong community are lower than those for Asian Pacific Islanders (API ) or non -Hispanic whites (NHW), Hmong demonstrate elevated ra tes of several cancers, most notably liver, stomach, nasopharyngeal, and cervical as well as leukemia (Mills, Yang, & Riordan, 2005) . And unfortunately, for many of these cancers, the Hmong experience poorer health outcomes, a consequence of low screening rates and resultant diagnosis at later disease stage (Mills et al., 2005; Yang, Mills, & Dodg e, 2006) . For Hmong women, cervical and breast cancer are of particular concern . Hmong women exhibit rates of invasive cervical cancer that are particularly high. Incidence and mortality rates in all age groups are elevated, and overall are more than three times the API rate and four times the rate of NHW s (Mills et al., 2005; Yang, Mills, & Riordan, 2004) . Hmong women are also less likely to have their cancers diagnosed at a more readily treatable, in situ stage – only 55% of Hmong cervical cancers are dis covered in situ, compared with 68% and 82% of API and NHW women, respectively (Yang et al., 2004) . While breast cancer incidence rates are lower compared to API and NHW populations, Hmong breast cancer patients also tend to be diagnosed at a significantly later stage (9.3% in situ for Hmong compared to 40% and 46% for API & NHW women, respectively), similarly resulting in poorer breast cancer outcomes (Mills et al., 2005; Warner et al., 2012) . Critical to improving both cervical and breast cancer health outcomes for Hmong women are regular screening s and, in cases where disease is discovered, prompt Comme ntary: Utilizing Community -Engaged Approaches to Investigate and Address Hmong Women’s Cancer Disparities by Shannon M.A. Sparks , Pang C. Vang, Beth Peterman, Lisa Phillips and Mayhoua Moua . Hmong Studies Journal, 15(1): 1 -18. 3 treatment. Five -year s urviva l rates are quite high (>90%) for women whose cancer is discovered in situ, but drop quickly as the cancer spreads. However, cancer screening efforts presuppose a Western ori entation to health and illness; they are difficult to interpret from the traditional Hmong perspective that equates illness with the presentation of physical symptoms, and challenging to implement in the context of Hmong views of illness and the body as pr ivate matters (Cu lhane -Pera & Xiong, 2003; Schroepfer, Waltz, Noh, Matloub, & Kue, 2010) . Consequently, cervical and breast screening rates for Hmong women are very low. In a study of breast and cervical cancer screening utilization among Hmong women in California, Yang and colleagues found that only 27.7% of Hmong women reported ever receiving a Pap Test, while only 15.8% reported ever receiving a mammogram (Yang et al., 2006) . Key to improving screening rates and cancer health outcomes for Hmong women is a deep understanding of the local context that impacts decisions about screening and treatment. Central to this are culturally -informed understandings of health, beliefs about cancer as a disease, its cause and meaning, and the consequences of action and inacti on. Also relevant are perceptions of – and access to – Western medicine and the role of family in decision -making regarding utilization of health care resources . Finally, other factors that impact health care access such as insurance, literacy, and socio -economic status are also important considerations in Hm ong cancer health disparities. This paper details the importance of a multi -year community -based research partnership to the development and success of a program in Milwaukee, Wisc onsin to improve breast and cervical cancer screening rates for Hmong women. The development of this program – known locally as “Healthy Hmong Women ” – was guided by the Milwaukee Consortium for Hmong Health, a coalition of academics, community -based orga nizations, clinics, and members of the Hmong commun ity . The Consortium utilizes a community -engaged approach in its work with the Milwaukee Hmong community, an orientation that prioritizes collaborative, non -hierarchical partnerships and community voice i n identifying and solving problems . This approach is reflected not only in the processes utilized by the Consortium to ascertain local perspectives, needs, and priorities and develop and implement interventions , but also in the engaged nature of the specific intervention selected. This paper discusses the importance of such community -engaged approaches to understanding the socio -ecological context within which health and health disparities are produced, and identifying and developing i nterventions that improve health outcomes . In addition, we describe the role of community -engaged approaches in building trust w ith the community , facilitating community ownership of the project, and building community capacity to address health outcomes. The Socio -Ecological Context of Hmong Cancer Disparities Health and illness , at both the individual and community level , are closely linked to the larg er socio -ecological environment. They are a product of a variety of aspects of the environment – physical, social, cultural , economic, political, and historical – both directly and as a result of interactive effects between the environment and the individual (Green, Richard, & Potvin, 1996; Sto kols, 1996) . Consequently, h ealth and health disparities are Comme ntary: Utilizing Community -Engaged Approaches to Investigate and Address Hmong Women’s Cancer Disparities by Shannon M.A. Sparks , Pang C. Vang, Beth Peterman, Lisa Phillips and Mayhoua Moua . Hmong Studies Journal, 15(1): 1 -18. 4 locally produced but distally influenced , an outcome of fit between multiple aspects of the individual or community and multiple dimensions of the environmental context (Grzywacz & Fu qua, 2000; Stokols, 1996) . The socio -ecological environment influences health in two key ways. First, it shapes understandings of health and illness and culturally -appropriate reactions to illness . Secondly, it frames the universe of options available to individuals and families as they make decisions regarding the maintenance of heal th and the treatment of illness (Berman, Kendall, & Bhattacharyya, 1994; Denham, 2002; Schumann & Mosley, 1994) . Such health decisions are influenced by the famil y’s culture and collective beliefs about the world and characteristics of the community setting, as well as more pragmatic issues such as cost, access, distance, conflicting responsibilities, etc. (Frye, 1991; Grzywacz & Fuqua, 2000; Wenger, 1995) . Hmong understandings of illness generally , and cancer more specifically , figure prominently into decisions about cancer screening and treatment. Cancer is viewed as a new disease, one that they were never expos ed to in their homeland and for which they do not even have a name (Baisch, Vang, & Peterman, 2008; Schroepfer et al., 2010; Vang, 2008) . While there is increasing awareness of it as a disease, there is a lack of understanding of its causes and consequently significant fear. More traditional Hmong may view cancer as spiritual in origin and consequently seek out a traditional healer. Oth ers may view it as within the purview of Western medicine, but incurable and untreatable, essentially a death -sentence (Culhane -Pera & Xiong, 2003; Schroepfer et al., 2010) . Cancer is challenging to address in the Hmong community because, in the early stages where it is more likely to be s uccessfully treated, it is “invisible” or “silent,” presenting few if any symptoms. In the traditional Hmong view of illness, an individual must be feeling ill or sick to seek treatment (Schroepfer et al., 2010; Vang, 2008) – there is no conception of an illness that could be developing invisibly within the body without causing symptoms. Therefore, it can be difficult to convince a Hmong individual to undergo screening for disea se in the absence of symptoms, particularly if the procedures are viewed as embarrassing or risky (Culhane -Pera & Xiong, 2003) . Cancer screening procedures involving the breasts or reproductive organs tend to be particularly problematic for women (Culhane -Pera & Xiong, 2003) . Traditional Hmong are modest and view the body as private (Schroepfer et al., 2010) . Furthermore, sex and sexual organs are culturally silent issues that are rarely dis cussed (Yang et al., 2004) . Consequently, Hmong women are often extremely embarrassed and uncomfortable with the intrusiveness of a gynecological exam, particularly if it is conducted by a male physician (Vang, 2008; Yang et al., 2004) . In addition, Hmong women who are not yet married or are be yond their childbearing years often do not find gynecological exams (and the associated Pap test) warranted or appropriate (Fang, Lee, Stewart, Ly, & Chen, 2010; Vang, 2008) . Screening access is further complicated by linguistic and literacy barriers, as well as low rates of insurance. While rates of English literacy among younger Hmong women in the U.S. are high, many older Hmong women have limited English proficiency. Comme ntary: Utilizing Community -Engaged Approaches to Investigate and Address Hmong Women’s Cancer Disparities by Shannon M.A. Sparks , Pang C. Vang, Beth Peterman, Lisa Phillips and Mayhoua Moua . Hmong Studies Journal, 15(1): 1 -18. 5 Consequently, translators are needed for interactions with Western medical professionals. The availability and quality of translators varies significantly, however, creating communication barriers for Hmong women with limited English proficiency (Fang & Baker, 2013; Lor, Khang, Xiong, Moua, & Lauver, 2013) . In addition, there is a lack of specific terminology in the Hmong language for discussing cancer and health care screening which creates challenges for translators trying to explain procedures and diagnoses to their Hmong -speaking clients (Fang & Baker, 2013) . Hmong women may face additional barriers accessing health care resources due to low rates of insurance. Census 2010 data indicate that l ess than 50% of the Hmong population has private insurance, and 15% are comple tely uninsured, which can lead to barriers or delays in accessing screening (Pfeifer & Yang, 2013) . Even those with insurance, h owever, may not prioritize their own health needs . As Fang and Baker (2013) note, traditional Hmong values dictate that women should place the needs of their children, husband and in -laws above their own, thus Hmong women overwhelmed by other family and household responsibilities may neglect their own health needs. Utilization of Community -Engaged Approaches to Reduce Cancer Health Disparities To be effective and accepted in communities, health promotion and intervention programs must be designed with a deep understanding of the socio -ecological context of people’s lives. In rega rds to cancer, this includes understanding culturally -mediated beliefs regarding etiology, prevention and treatment, where cancer prevention “fits in” with regard to daily life priorities, as well as linguistic and econo mic barriers and other factors (Meade, Menard, Luque, Martinez -Tyson, & Gwede, 2011) . This deep attention to socio – ecological contexts impacting health and health disparities is best accomplished through methodologies which prioritize engagement with communities to identify their concerns, needs and priorities and develop research and interventions that directly respond to these community -identified needs. Community -engaged research refers to a collection of epistemological approaches to research which share a commit ment to giving people a voice in identifying and solving problems affecting their communities (Culhane -Pera et al., 2010) . For the pur poses of this paper, we will utilize the term community -based participatory research (CBPR). CBPR is a model of community -engaged research commonly used in health disparities research. Minkler and Wallerstein (2003, p. 4) describe it as … a collaborative approach to research [that] equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community with the aim of combining knowledge and action for social change to improve commu nity health and eliminate health disparities. Central to CBPR is the creation of collaborative, non -hierarchical partnerships comprised of community members, researchers, organizational representatives, and other key stakeholders. These partnerships prac tice shared decision -making and emphasize mutual Comme ntary: Utilizing Community -Engaged Approaches to Investigate and Address Hmong Women’s Cancer Disparities by Shannon M.A. Sparks , Pang C. Vang, Beth Peterman, Lisa Phillips and Mayhoua Moua . Hmong Studies Journal, 15(1): 1 -18. 6 ownership of all stages of the research process (Minkler & Wallerstein, 2003) . In addition, they recognize that all partners bring relevant knowledge and expertise to the partnership and that co -learning is a critical aspect of a successful partnership (Israel, Eng, Schulz, & Parker, 2005) . This has the effect, as Hartwig, Calleson, and Williams (2006) note, of transforming research from “a relationship where researchers act upon a community … to one where researchers work side by side with community members.” While research is central to the process, ultimately its goal is to produce knowledge that can lead to action. Consequently, CBP R emphasizes building upon a community’s existing strengths and resources, capacity -building within the community, and long -term commitments from all partners (Israe l et al., 2005; Minkler & Wallerstein, 2003) . And, because CBPR recognizes community members as cultural experts and key partners in the research process, the research and programming it generates is more valid , effective, and rele vant to the community and has more sustainable outcomes (Culhane -Pera et al., 2010; Tung Thoa Nguye n et al., 2006) . CBPR has been utilized in many minority and immigrant communities in the U.S. to investigate cancer disparities and design and implement effective, community -based cancer interventions (Adams, 2007; Christopher, Gidley, Letiecq, Smith, & McCormick, 2008; Luque, Mason, Reyes -Garcia, Hinojosa, & Meade, 2011; Luque, Rivers, et al., 2011; Tung T Nguyen et al., 2010; Tung Thoa Nguyen et al., 2006; White, Haas, & Williams, 2012) . These commonly integrate lay education, health worker or navigation models that train community members to provide services and programming . In a few cases, these have been layered with other programs to created multi -level interventions targeting multipl e ecological levels. CBPR is likewise being increasingly utilized in Hmong communities to investigate and address a number of health concerns . To date , cancer has been the most common target of CBPR efforts (Fang & Baker, 2013; Kagawa -Singer, Tanjasiri, Valdez, Yu, & Foo, 2009; Schroepfer e t al., 2010; Tanjasiri et al., 2001) , although mental health (Collier, Munger, & Moua, 2012) , domestic violence (Yoshihama & Carr, 2002) , and immunization utilization (Baker, Dang, Ly, & Diaz, 2010) have also been investiga ted. The Milwaukee Consortium for Hmong Health: A Case Example Key to improving Hmong women’s cancer health outcomes is finding ways to increase knowledge of cancer as a disease and the importance of early screening and detection in ways that are culturally and linguistically appropriate (Tanjasiri et al ., 2007) . For the past five years , my colleagues and I have been working with the Milwaukee community – home to the fourth largest Hmong population (11,904) in the US (Pfeifer & Yang, 2013) – to improve screening rat es and cancer health outcomes for Hmong women. Key to our success has been a slow process of partnership -building with the Milwaukee Hmong community and the utilization of a community -engaged approach since the partnership’s inception that prioritize s the needs, perspectives and voices of the community. In 2008, academic and community partners working on this health issue established the Milwaukee Co nsortium for Hmong Health to facilitate engagement with the Hmong Comme ntary: Utilizing Community -Engaged Approaches to Investigate and Address Hmong Women’s Cancer Disparities by Shannon M.A. Sparks , Pang C. Vang, Beth Peterman, Lisa Phillips and Mayhoua Moua . Hmong Studies Journal, 15(1): 1 -18. 7 community around women’s cancer health and wellness and build capacity to address this issue . As has been detailed elsewhere (Sparks and Vang , accepted ), the C onsortium grew out of a small partnership between the University of W isconsin -Madison and the House of Peace Communit y Nursing Center in Milwaukee (part of the University of Wisconsin – Milwaukee Institute for Urban Health Partnerships) investigating anecdotal reports of high rates of cervical cancer and late stage at diagnosis in the Wisconsin Hmong population. Today, the Consortium includes 20+ members representing numerous academic institutions, local and national non -profits, state and local government, Hmong -serving clinics and organization s and the local Hmong community . This broad representation allows us to build upon the diverse knowledge and resour ces of these different players and pool the limited capacity of each member . The Consortium’s mission is to “engage the Hmong community of Milwaukee for positive change regarding women’s cancer health and wellness” mor e broadly. It operates from the premise that the Hmong families in the community are central to identifying strategies to address barriers to cancer screening and implementing solutions. The Consortium serves primarily as an advisory board, providing imp ortant guidance and feedback on the mission, vision, and priorities as well as Consortium education, research and outreach efforts. Specifically, the group works to (1) provide communication, education and outreach on cancer issues; (2) build capacity to a ddress cancer issues; and (3) address barriers to and encourage cancer screening and follow -up. Community Dialogues One of the first priorities of the Consortium after its establishment was to assess the perspectives and needs of the Milwaukee Hmong community in relation to women’s cancer health. While many of the Consortium members had extensive experience in the community and a sense of barriers to cancer screening and treatment, we felt it was important to engage the Hmong community directly in dis cussions and priority -setting regarding future strategies . Our goal was to facilitate community ownership and alignment of the Consortium with community needs and priorities. Thus, i n the fall of 2008, the Consortium sponsored a series of three facilitate d community dialogues to (1) discuss how understandings of cancer and perceptions of risk affect decision -making regarding cancer screenings, and (2) explore with community members effective ways to overcome barriers to accessing cancer screening and treat ment. These community dialogues resulted in a set of six community recommendations aimed at improving Hmong women’s health outcomes which are guiding the Consortium’s efforts moving forward. These recommendations, which are detailed in Sparks and Pang (a ccepted ), are summarized in Table 1. Comme ntary: Utilizing Community -Engaged Approaches to Investigate and Address Hmong Women’s Cancer Disparities by Shannon M.A. Sparks , Pang C. Vang, Beth Peterman, Lisa Phillips and Mayhoua Moua . Hmong Studies Journal, 15(1): 1 -18. 8 Table 1: Community Recommendations for Overcoming Barriers to Accessing Cancer Screening & Treatment 1. Provide in -depth information and education about the importance a nd consequences of annual exams 2. Explore ways to ma ke annual exams a “requirement” 3. Ensure t hat annual exams are affordable 4. Ensure that Hmong women have access to female doctors 5. Offer a peer education program 6. Offe r a free community -based clinic Lay Health Education Community recommendations 1 and 5 – which center on the idea of peer education and information sharing around preventive health and cancer screening – framed the development of “Healthy Hmong Women” (“Poj Niam Hmoob Kev Noj Qab Haus Huv” ) which the Consortium launched in 2011 . This two -year lay health education pilot project wa s modeled after lay health promotion programs successfully utilized i n other A PI communities to increase cancer literacy as well as access to and rates of cancer screening (Kagawa -Singer et al., 2009; Lo et al., 2010; T. -U. N. Nguyen et al., 2008; T. -U. N. Nguyen, Tran, Kagawa -Singer, & Foo, 2009; Tanjasiri et al., 2007) . “Healthy Hmong Women” takes a two -pronged approach, providing both lay cancer health education to the greater Milwaukee Hmong community and support to Hmong women recently diagnosed with breast or cervical cancer. For our lay health education module, we trained seven local bilingual/bicultural Hmong women as community health workers (CHWs). Our CHWs c onduct small, family -based workshops educating Hmong women and their families about cervical and breast cancer, cancer prevention and screening tests . Women due and elig ible for breast and/or cervical cancer screening are encouraged to get screened and connected with resources to access screening and translation services if needed. The CHWs have also conducted several large community education luncheons, one of which was specifically designed to engage Hmong men in the conversation about women’ s cancer screenings , an addition considered important by the community given the role of men in health care decision making for women in their family (Parker & Neng, 1999) . To work with newly diagnosed cancer patients, we trained two Hmong cancer survivors as community health me ntors (CHMs). The CHMs provide emotional and instrumental support to Hmong women with cervi cal or breast cancer after their diagnosis . Utilizing their own cancer diagnosi s and treatment experiences, these survivors provide support to Hmong women facing the beginning of their own cancer journey and Comme ntary: Utilizing Community -Engaged Approaches to Investigate and Address Hmong Women’s Cancer Disparities by Shannon M.A. Sparks , Pang C. Vang, Beth Peterman, Lisa Phillips and Mayhoua Moua . Hmong Studies Journal, 15(1): 1 -18. 9 encouragement to engage in recom mended treatments. Evaluation of both the CHW and CHM programs is currently underway. Importance and Value of Community -Engaged Approaches The community -engaged approach utilized by the Consortium in its work with the Hmong community has been beneficial i n many ways: 1. This approach has promoted community investment and ownership in the Consortium and its work. The process of involving and engaging the community since the Consort ium’s i nception has established two -way communication between the Hmong commun ity and providers and academics, providing an opening and forum for discussion and priority -setting with the community. Consequently, while the Consortium was initially established by outside entities, the communit y is now well represented in its membership and is coming to see the Consortium as part of the community itself. In addition, because the Hmong community views itself as helping to direct the Consortium’s work, that work is legitimized within the Hmong community. The Consortium and its academic partners a re understood to be working to further the community’s goals rather than imposing their own agenda upon the community. 2. Engagement with the community has facilitated the integration of local perspectives and experiences. From the outs et, the Consortium recognized the need to understand the community’s perspective on – and understanding of – cancer and cancer screening, and the community dialogues were a valuable part of this process. We were able to identify an array of barriers to sc reening and treatment specifically faced by Hmong women in Milwaukee, understand their priorities for action, and design int erventions with these in mind. Consequently , Consortium initiative s fit with the community’s needs and p riorities because they have been designed in direct response to the perspective and insights that emerged through the community dialogues. In addition, we have continued to respond to issues and concerns brought forth by the community and our lay health educators during our implemen tation process and adjust accordingly. 3. We have been able to build capacity in the community to address cancer screening disparities through community engagement. Participants in our project have indicated to us that, prior to the Consortium -sponsored comm unity dialogues and lay health education workshops, Pap tests and mammograms were not part of their conversations. They emphasized, however, that it was important for Hmong women to talk with one another and share their health experiences, and the communi ty dialogues and health education workshops provide a valuable opportunity and safe environment to start doing so. In addition, by training a cadre of local bilingual/bicultural Hmong women as community health workers with expertise in cancer and cancer screening, we are helping increase capacity within the Hmong community to improve cancer health literacy and cancer screening rates and continue the se conversations. Comme ntary: Utilizing Community -Engaged Approaches to Investigate and Address Hmong Women’s Cancer Disparities by Shannon M.A. Sparks , Pang C. Vang, Beth Peterman, Lisa Phillips and Mayhoua Moua . Hmong Studies Journal, 15(1): 1 -18. 10 4. We have put in place interventions and resources aimed at addressing barriers to access at multiple ecological levels. While “Healthy Hmong Women” is primarily about peer lay health education and creating change at the individual level, the range of partners that we have brought into the Consortium has increased our capacity to address a range of other critical barriers to screening tied to lack of insurance, cost, language barriers, etc. Multilevel interventions which target the contextual determinants of health at multiple ecological levels are important to successful ly addressing disparities in health (Trickett & Beehler, 2013) , and our engaged approach has facilitated the inclusion of partners and resources that are able to address a greater range of health determinants. 5. The community is framed as the foundation and driver of positive change rather than a barrier or “high risk” public. Too often, the culture or beliefs of minority and immigrant communities are construed as being at the root of their health problems, and populations consequently constructed as “at risk .” Culturally – rooted health beliefs, for example, may be framed as erroneous or incorrect, and blamed for the existence of health disparities. However, culture can also be an asset that can be leveraged to improve health and well -being, as in the case descri bed here. By engaging the community in identification and prioritizatio n of needs, barriers, and modes of intervention, the community settled upon a strategy that builds upon a cultural strength – the utilization of peer networks for the communication of information. Thus, by training Hmong community health workers, important health information is being introduced into existing lay networks and reproduced through a traditional mode of communication (i.e., women’s peer networks) . These networks are thus c onstructed as an asset and important frame for facilitating change rather than a barrier. Summary and Conclusion The community -engaged approaches utilized by the Consortium and the “Healthy Hmong Women” project – (1) community dialogues and (2) lay health education – have in our view been critical to the acceptance and success of the Consortium and the project . The process has been critical in identifying factors within the community contributing to the production of Hmong cancer disparities and identifyin g appropriate interventions. And, as a result of this process, we are engaged in work that fits with the priorities and needs of the community and is consequently building community capacity . The community health workers and community health mentors have become important resources in the community, and have had success in increasing cancer health literacy and intent to screen . While the ultimate impact of the project on rates of screening and treatment initiation are still being assessed, it is clear tha t the project has been successful in increasing awareness of breast and cervical cancer as issues of concern in the Hmong community and encouraging conversations about these diseases. In addition, the community has indicated that it sees value in the peer health education model and has already pushed to expand the scope of the intervention to include men and other pressing health concerns. To this end, the Consortium is in the process of broadening our CHW program to engage Hmong men more integrally in conversations and workshops focusing on women’s cancer health and Comme ntary: Utilizing Community -Engaged Approaches to Investigate and Address Hmong Women’s Cancer Disparities by Shannon M.A. Sparks , Pang C. Vang, Beth Peterman, Lisa Phillips and Mayhoua Moua . Hmong Studies Journal, 15(1): 1 -18. 11 preventive screenings. In addition, we are integrating other cancers such a s liver cancer which disproportionately affect Hmong men into our lay health education curriculum and workshops an d planning to train men as CHWs. Our hope and goal is that the community will increasingly guide and drive the Consortium’s health improvement efforts . As the community’s partners , our aim is to support their goals, priorities and agenda. Comme ntary: Utilizing Community -Engaged Approaches to Investigate and Address Hmong Women’s Cancer Disparities by Shannon M.A. Sparks , Pang C. Vang, Beth Peterman, Lisa Phillips and Mayhoua Moua . Hmong Studies Journal, 15(1): 1 -18. 12 References Cited Adams, M. Lou. (2007). The African American Breast Cancer Outreach Project: Partnering with Communities. Family & Community Health , 30 , S85 –S94. Retrieved from http://journals.lww.com/familyandcommunityhealth/Fulltext/2007/01001/The_Afri can_American_Breast _Cancer_Outreach.11.aspx Baisch, M. J., Vang, P. C., & Peterman, B. R. 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Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/16629521 Yang, R. C., Mills, P. K., & Riordan, D. G. (2004). Cervical cancer among Hmong women in California, 1988 to 2000. American Journal of Preventive Medicine , 27 (2), 132 –8. doi:10.1016/j.amepre.2004.04.003 Yoshihama, M., & Carr, E. S. (2002). Community Participation Reconsidered. Journal of Community Practice , 10 (4), 85 –103. doi:10.1300/J125v10n04 Comme ntary: Utilizing Community -Engaged Approaches to Investigate and Address Hmong Women’s Cancer Disparities by Shannon M.A. Sparks , Pang C. Vang, Beth Peterman, Lisa Phillips and Mayhoua Moua . Hmong Studies Journal, 15(1): 1 -18. 17 About the Authors : Shannon Sparks, PhD, is an Assistant Professor in the Department of Civil Society and Community Studies in the University of Wisconsin -Madison School of Human Ecology. Dr. Sparks was trained as a cultural and medical anthropologist at the University of Arizona, where she received her doctorate in 2007. She is an applied, qualitative researcher whose work examines social determinants of health and health disparities as we ll as health care decision making and barriers to care. Dr. Sparks has been a member of the Milwaukee Consortium for Hmong Health since its inception, and is the academic partner for the Consortium’s “Healthy Hmong Women” project. Pang Vang is a registered nurse and a certified health educator specialist with a master’s degree in health education. She has expertise with health education program planning, assessment, implementation, and evaluation. Pang has been a key member with the Milwauke e Consortium for Hmong Health since its inception. Her passion is engaging communities to achieve maximal health and wellbeing. Beth Peterman is a Family Nurse Practitioner at the UW -Milwaukee (UWM) College of Nursing and the Nursing Center Director for t he UWM House of Peace Community Nursing Center. She is also a clinical instructor for the College of Nursing. Beth has a Master’s Degree in both Comme ntary: Utilizing Community -Engaged Approaches to Investigate and Address Hmong Women’s Cancer Disparities by Shannon M.A. Sparks , Pang C. Vang, Beth Peterman, Lisa Phillips and Mayhoua Moua . Hmong Studies Journal, 15(1): 1 -18. 18 Nursing and Business Management and has worked in community health, the hospital setting, as well as in the pri vate sector as a clinical consultant. Her passion in nursing is focused on community, social justice and health inequity issues in both health and health care delivery. She has been a member of the Milwaukee Hmong Consortium for Health since its inception in 2006 and is the project manager for the Consortium’s “Healthy Hmong Women” project. Lisa Phillips has worked for the City of Milwaukee Health Department since December 1999 and has been the Wisconsin Well Woman Program manager since January 2008. Lisa has been involved with the Milwaukee Consortium for Hmong Health for the past several years in many capacities. Lisa has been involved in public health her entire working career and is compassionate about providing excellent breast and cervical cancer scre ening to women who are underinsured or uninsured. Lisa’s goal is to ensure that all women who are eligible have access to the Wisconsin Well Woman program and that barriers to receiving these services are non – existent. Mayhoua Moua owns and operates Moua Consulting Group, LLC in which she provides consultation on culture and diversity and Hmong language interpretation and translation services. Mayhoua’s interpretation service allows her to interact with Hmong patients in clinics and hospital settings wher e she sees first -hand health concerns affecting the Hmong community. Prior to her consulting business, Mayhoua worked in the non -profit social service sector for fourteen years assisting Hmong refugees to resettle and adapt to western ways of life, including job training and employment placements, family strengthening programs, and leadership development for women and girls. Mayhoua has been involved with the Milwaukee Consortium for Hmong Health since 2007 and is currently the Community Health Worker Coordin ator. Copyright ofHmong StudiesJournalisthe property ofMark Pfeifer anditscontent maynot be copied oremailed tomultiple sitesorposted toalistserv without thecopyright holder’s express writtenpermission. However,usersmayprint, download, oremail articles for individual use.

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