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Phung VD, Fetzer SJ, Fang SY. Providing Information or Support Based on Cancer Worry Can Decrease Psychological Distress Among Daughters of Women with Breast Cancer. Semin Oncol Nurs 2025; 41:151760. [PMID: 39617685 DOI: 10.1016/j.soncn.2024.151760] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/26/2024] [Revised: 10/27/2024] [Accepted: 10/31/2024] [Indexed: 02/08/2025]
Abstract
BACKGROUND Cancer Worry (CW) can shape the responses and behaviors of information or support-seeking of daughters of women with breast cancer. OBJECTIVE This study aims to explore the roles of Cancer Worry (CW) as a moderator and mediator in the relationship between information needs, support needs, and psychological distress. METHODS A cross-sectional and correlational design was used in conjunction with a convenience sampling strategy. Daughters of mothers with breast cancer were requested to complete the questionnaires Impact of Event Scale Chinese version (IES-C), Cancer Worry Scale for Genetic Counseling (CWS-GC), and Information and Support Needs Questionnaire (ISNQ). Hayes' PROCESS macro using SPSS for Windows were used to examine the mediator and moderator role of CW. RESULTS A total of 194 daughters provided data. Cancer worry was significantly correlated with total IES (r = 0.352, P < .01), intrusion-IES (r = 0.353, P < .01), avoidance-IES (r = 0.313, P < .01), unmet support needs (r = 0.226, P < .01), and unmet information needs (r = 0.17, P < .05). Cancer worry mediated the relationship between unmet support needs and total IES (β = 0.089, 95% CI: 0.026, 0.171) and moderated the relationship between unmet information needs and total IES (β = -0.395, P = .018, 95% CI: -0.723, -0.066). CONCLUSIONS The role of cancer worry should be paid attention to when clinicians deliver information and provide support as well as tailoring psychological intervention for ameliorating distress in daughters of women with breast cancer. IMPLICATIONS FOR NURSING Providing personalized information and support is essential to address the unmet needs of daughters of women with breast cancer. Healthcare professionals providing interventions to reduce distress and improve overall care should consider individual CW. PLAIN ENGLISH SUMMARY This research looks at how worrying about cancer affects daughters of women who have breast cancer. It focuses on the degree of cancer worry changes the way they feel when they don't get the information and support. Researchers used surveys to gather data from these daughters, examining how their level of cancer worry influenced their needs for information and support and their psychological distress. They found that greater unmet support needs will intensify worry about cancer and then increase psychological stress. However, too much or too little worry about cancer will also heighten their psychological distress due to limited information. The findings suggest that healthcare providers, including nurses, should consider the level of worry about cancer when offering support and information to these individuals to help reduce their stress.
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Affiliation(s)
- Van Du Phung
- Department of Nursing, College of Medicine, National Cheng Kung University, Tainan, Taiwan; Department of Nursing, Hai Duong Medical Technical University, Hai Duong, Vietnam
| | - Susan J Fetzer
- Department of Nursing, College of Medicine, National Cheng Kung University, Tainan, Taiwan
| | - Su-Ying Fang
- Department of Nursing, College of Medicine, National Cheng Kung University, Tainan, Taiwan; Department of Nursing, College of Medicine, National Cheng Kung University Hospital, National Cheng Kung University, Tainan, Taiwan.
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Lu N, Zhang C, You H, Ma Z, Zhu P, Cheng F. Factors Affecting Breast Screening Behavior of First-Degree Relatives of Breast Cancer Patients in China: A Cross-sectional Study. Cancer Nurs 2024; 47:271-280. [PMID: 36480333 DOI: 10.1097/ncc.0000000000001176] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/13/2022]
Abstract
BACKGROUND Breast cancer is the most common cancer in women, and first-degree relatives (FDRs) of breast cancer patients have a significantly higher risk of developing breast cancer. However, the factors affecting breast cancer screening behavior of FDRs in China remain unclear. OBJECTIVE The aim of this study was to determine the social cognitive theory factors influencing screening behaviors of FDRs. METHODS A cross-sectional survey was conducted, and 430 FDRs were recruited. Data were collected using demographic information and self-reported questionnaire based on the social cognitive theory. The structural equation modeling method was used to analyze the influence of social cognitive factors on breast cancer screening behavior. RESULTS The model showed a good fit (goodness of fit = 0.462). Goal setting and self-regulation (β = 0.631, P < .001) and positive outcome expectation (β = 0.098, P = .042) were positively related to breast cancer screening behavior. Negative outcome expectation was negatively related to breast cancer screening behavior (β = -0.102, P = .024). In addition, positive outcome expectation, negative outcome expectation, and goal setting and self-regulation are mediators of self-efficacy (β = 0.475, P < .001) to breast cancer screening behavior. CONCLUSION Goal setting and self-regulation are important influences on breast cancer screening behavior. The social cognitive theory is both applicable to and effective in explaining and predicting breast cancer screening behavior. IMPLICATIONS FOR PRACTICE Health professionals can develop appropriate intervention strategies based on the social cognitive theory among FDRs. It is necessary to focus on the people who influence women, such as spouses, mothers, or daughters.
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Affiliation(s)
- Ningning Lu
- Author Affiliations: School of Nursing, Nanjing Medical University (Mss Lu, Zhang, and Ma); Department of Nursing, Kangda College of Nanjing Medical University (Ms Lu); Department of Social Medicine and Health Education, School of Public Health, and Institute of Healthy Jiangsu Development, Nanjing Medical University (Dr You); and Jiangsu Cancer Hospital; The Affiliated Cancer Hospital of Nanjing Medical University; Jiangsu Institute of Cancer Research (Ms Zhu and Dr Cheng), Nanjing, China
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Nguyen D, Gilad O, Drogan CM, Eilers Z, Liao C, Kupfer SS. Risk perception and surveillance uptake in individuals at increased risk for pancreatic ductal adenocarcinoma. J Med Genet 2024; 61:270-275. [PMID: 37852748 DOI: 10.1136/jmg-2023-109539] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/26/2023] [Accepted: 09/26/2023] [Indexed: 10/20/2023]
Abstract
BACKGROUND Surveillance for pancreatic ductal adenocarcinoma (PDAC) is recommended for high-risk individuals with genetic variants in PDAC-associated genes and/or family history. Surveillance uptake and adherence may depend on the perception of PDAC risk and cancer worry. We aimed to determine PDAC risk perception in at-risk individuals and assess factors associated with PDAC surveillance uptake. METHODS At-risk individuals identified from a prospective academic registry were sent a survey electronically. PDAC risk perception, cancer worry and surveillance uptake were surveyed. Factors associated with increased risk perception and surveillance were assessed. Five-year PDAC risk was calculated using the PancPRO risk assessment model, and correlation with subjective risk assessment was assessed. RESULTS The overall survey response rate was 34% (279/816). The median perceived PDAC risk was twofold (IQR 1-4) above respondents' estimates of general population risk. Factors significantly associated with higher perceived PDAC risk included non-Hispanic white race, post-graduate education level, PDAC-affected first-degree relative, genetic variants and lack of personal cancer history. Cancer worry had a very weak correlation across PDAC risk estimates (r=0.16). No correlation between perceived PDAC risk and 5-year calculated PDAC risk was found. Older age, having a first-degree relative with PDAC, meeting with a medical provider about PDAC cancer risk and awareness of surveillance modalities were significant predictors of undergoing PDAC surveillance. CONCLUSIONS Individuals at risk for PDAC do not report risk perception that correlates with calculated risk. This presents an opportunity for counselling of at-risk patients to individualise management and improve surveillance uptake for eligible individuals.
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Affiliation(s)
- Denis Nguyen
- Pritzker School of Medicine, University of Chicago, Chicago, Illinois, USA
| | - Ophir Gilad
- Section of Gastroenterology, Hepatology and Nutrition, Department of Medicine, University of Chicago, Chicago, Illinois, USA
| | - Christine M Drogan
- Section of Gastroenterology, Hepatology and Nutrition, Department of Medicine, University of Chicago, Chicago, Illinois, USA
| | - Zoe Eilers
- Section of Gastroenterology, Hepatology and Nutrition, Department of Medicine, University of Chicago, Chicago, Illinois, USA
| | - Chuanhong Liao
- Department of Public Health Sciences, University of Chicago, Chicago, Illinois, USA
| | - Sonia S Kupfer
- Section of Gastroenterology, Hepatology and Nutrition, Department of Medicine, University of Chicago, Chicago, Illinois, USA
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Pedrazzani C, Ming C, Bürki N, Caiata-Zufferey M, Chappuis PO, Duquette D, Heinimann K, Heinzelmann-Schwarz V, Graffeo-Galbiati R, Merajver SD, Milliron KJ, Monnerat C, Pagani O, Rabaglio M, Katapodi MC. Genetic Literacy and Communication of Genetic Information in Families Concerned with Hereditary Breast and Ovarian Cancer: A Cross-Study Comparison in Two Countries and within a Timeframe of More Than 10 Years. Cancers (Basel) 2021; 13:cancers13246254. [PMID: 34944873 PMCID: PMC8699808 DOI: 10.3390/cancers13246254] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/06/2021] [Revised: 12/05/2021] [Accepted: 12/07/2021] [Indexed: 12/16/2022] Open
Abstract
Simple Summary This cross-study comparison uses data collected over 10 years from families living in the US and in Switzerland in order to compare genetic literacy between individuals who had genetic counselling for hereditary breast/ovarian cancer (HBOC) and one or more of their relatives who did not, and examines factors influencing genetic literacy both at the individual and at the family level. The study identifies genetic risk factors and signs of HBOC that remain unclear, even to individuals who had genetic consultation, and highlights the gaps in the dissemination of genetic information. Sensitivity analysis examines the dissemination of genetic information from the individual who had counselling to relatives within the same family that did not. Abstract Examining genetic literacy in families concerned with hereditary breast and ovarian cancer (HBOC) helps understand how genetic information is passed on from individuals who had genetic counseling to their at-risk relatives. This cross-study comparison explored genetic literacy both at the individual and the family level using data collected from three sequential studies conducted in the U.S. and Switzerland over ≥10 years. Participants were primarily females, at-risk or confirmed carriers of HBOC-associated pathogenic variants, who had genetic counselling, and ≥1 of their relatives who did not. Fifteen items assessed genetic literacy. Among 1933 individuals from 518 families, 38.5% had genetic counselling and 61.5% did not. Although genetic literacy was higher among participants who had counselling, some risk factors were poorly understood. At the individual level, genetic literacy was associated with having counselling, ≤5 years ago, higher education, and family history of cancer. At the family level, genetic literacy was associated with having counselling, higher education, and a cancer diagnosis. The findings suggest that specific genetic information should be emphasized during consultations, and that at-risk relatives feel less informed about inherited cancer risk, even if information is shared within families. There is a need to increase access to genetic information among at-risk individuals.
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Affiliation(s)
- Carla Pedrazzani
- Department of Clinical Research, Faculty of Medicine, University of Basel, 4055 Basel, Switzerland; (C.P.); (C.M.)
| | - Chang Ming
- Department of Clinical Research, Faculty of Medicine, University of Basel, 4055 Basel, Switzerland; (C.P.); (C.M.)
| | - Nicole Bürki
- Women’s Clinic, University Hospital Basel, 4031 Basel, Switzerland; (N.B.); (V.H.-S.)
| | - Maria Caiata-Zufferey
- Department of Business Economics, Health and Social Care, University of Applied Science and Arts of Southern Switzerland, 6928 Manno, Switzerland;
| | - Pierre O. Chappuis
- Oncogenetics Unit, Service of Oncology, University Hospital of Geneva, 1205 Geneva, Switzerland;
| | - Debra Duquette
- Feinberg School of Medicine, Northwestern University, Chicago, IL 60208, USA;
| | - Karl Heinimann
- Medical Genetics, University Hospital Basel, 4031 Basel, Switzerland;
| | | | | | - Sofia D. Merajver
- University of Michigan School of Public Health, Ann Arbor, MI 48109, USA;
- Roger Comprehensive Cancer Center, University of Michigan, Ann Arbor, MI 48109, USA;
| | - Kara J. Milliron
- Roger Comprehensive Cancer Center, University of Michigan, Ann Arbor, MI 48109, USA;
| | | | - Olivia Pagani
- Oncology Institute of Southern Switzerland, 6900 Lugano, Switzerland; (R.G.-G.); (O.P.)
| | | | - Maria C. Katapodi
- Department of Clinical Research, Faculty of Medicine, University of Basel, 4055 Basel, Switzerland; (C.P.); (C.M.)
- Correspondence: ; Tel.: +41-061-207-0430
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Woo SM, Davis WD, Aggarwal S, Clinton JW, Kiparizoska S, Lewis JH. Herbal and dietary supplement induced liver injury: Highlights from the recent literature. World J Hepatol 2021; 13:1019-1041. [PMID: 34630872 PMCID: PMC8473494 DOI: 10.4254/wjh.v13.i9.1019] [Citation(s) in RCA: 16] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/04/2021] [Revised: 06/08/2021] [Accepted: 08/09/2021] [Indexed: 02/06/2023] Open
Abstract
Herbal-induced liver injury (HILI) is an important and increasingly concerning cause of liver toxicity, and this study presents recent updates to the literature. An extensive literature review was conducted encompassing September 2019 through March 2021. Studies with clinically significant findings were analyzed and included in this review. We emphasized those studies that provided a causality assessment methodology, such as Roussel Uclaf Causality Assessment Method scores. Our review includes reports of individual herbals, including Garcinia cambogia, green tea extract, kratom as well as classes such as performance enhancing supplements, Traditional Chinese medicine, Ayurvedic medicine and herbal contamination. Newly described herbals include ashwagandha, boldo, skyfruit, and 'Thermo gun'. Several studies discussing data from national registries, including the United States Drug-Induced Liver Injury (DILI) Network, Spanish DILI Registry, and Latin American DILI Network were incorporated. There has also been a continued interest in hepatoprotection, with promising use of herbals to counter hepatotoxicity from anti-tubercular medications. We also elucidated the current legal conversation surrounding use of herbals by presenting updates from the Federal Drug Administration. The highlights of the literature over the past year indicate interest in HILI that will continue as the supplement industry in the United States grows.
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Affiliation(s)
- Stephanie M Woo
- Department of Internal Medicine, MedStar Georgetown University Hospital, Washington, DC 20007, United States.
| | - William D Davis
- Department of Internal Medicine, MedStar Georgetown University Hospital, Washington, DC 20007, United States
| | - Soorya Aggarwal
- Department of Gastroenterology, MedStar Georgetown University Hospital, Washington, DC 20007, United States
| | - Joseph W Clinton
- Department of Internal Medicine, MedStar Georgetown University Hospital, Washington, DC 20007, United States
| | - Sara Kiparizoska
- Department of Internal Medicine, MedStar Georgetown University Hospital, Washington, DC 20007, United States
| | - James H Lewis
- Department of Gastroenterology, MedStar Georgetown University Hospital, Washington, DC 20007, United States
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Makhnoon S, Tran G, Levin B, Mattie KD, Dreyer B, Volk RJ, Grana G, Arun BK, Peterson SK. Uptake of cancer risk management strategies among women who undergo cascade genetic testing for breast cancer susceptibility genes. Cancer 2021; 127:3605-3613. [PMID: 34157779 DOI: 10.1002/cncr.33668] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/25/2021] [Revised: 04/21/2021] [Accepted: 04/27/2021] [Indexed: 12/12/2022]
Abstract
BACKGROUND Uptake of cancer risk management based on inherited predispositions, which encompasses bilateral mastectomy (BLM), bilateral salpingo-oophorectomy (BSO), and intensified screening, is the primary motivation for cascade testing for hereditary breast and ovarian cancer (HBOC). However, long-term outcome data for cascade testers are lacking. METHODS Medical records were abstracted for all unaffected women with pathogenic variants in HBOC genes from 2 cancer hospitals (2013-2019) with at least 1 year of follow-up to compare the uptake of surgery and screening between cascade and noncascade testers. RESULTS Cascade testers (79.8%) were younger than noncascade testers (mean age, 37.6 vs 43.5 years; P = .002). Among women aged ≥40 years, 43% underwent BLM, and 71.6% underwent BSO, with no significant difference in uptake between cascade and noncascade testers. The mean time to BSO among cascade testers was shorter among women aged ≥40 years versus those aged <40 years (11.8 vs 31.9 months; P = .04); no such difference was observed among noncascade testers. Mammography and breast magnetic resonance imaging rates were low in the recorded 6 years for both groups after genetic counseling. CONCLUSIONS Management uptake among cascade testers is high with rates comparable to those for unaffected BRCA-positive women. A large proportion of women act on cascade test results, and this represents a novel report of utilization of cancer management strategies.
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Affiliation(s)
- Sukh Makhnoon
- Department of Behavioral Science, The University of Texas MD Anderson Cancer Center, Houston, Texas
| | - Grace Tran
- Clinical Cancer Genetics, The University of Texas MD Anderson Cancer Center, Houston, Texas
| | - Brooke Levin
- William G. Rohrer Cancer Genetics Program, Division of Hematology and Medical Oncology, MD Anderson Cancer Center at Cooper University Health Care, Camden, New Jersey
| | - Kristin D Mattie
- William G. Rohrer Cancer Genetics Program, Division of Hematology and Medical Oncology, MD Anderson Cancer Center at Cooper University Health Care, Camden, New Jersey
| | | | - Robert J Volk
- Department of Health Services Research, The University of Texas MD Anderson Cancer Center, Houston, Texas
| | - Generosa Grana
- William G. Rohrer Cancer Genetics Program, Division of Hematology and Medical Oncology, MD Anderson Cancer Center at Cooper University Health Care, Camden, New Jersey
| | - Banu K Arun
- Clinical Cancer Genetics, The University of Texas MD Anderson Cancer Center, Houston, Texas
| | - Susan K Peterson
- Department of Behavioral Science, The University of Texas MD Anderson Cancer Center, Houston, Texas
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Zhao J, McBride CM, Guan Y. Misinterpretation of Hereditary Breast Cancer Risk and Its Association with Information Sharing Motives among Women at Low Likelihood of Carrying a BRCA1/2 Mutation. Public Health Genomics 2020; 23:252-256. [PMID: 33108784 DOI: 10.1159/000511131] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/16/2020] [Accepted: 08/15/2020] [Indexed: 11/19/2022] Open
Abstract
PURPOSE In this brief report, we ask whether women's interpretation of breast cancer risk based on their low likelihood of carrying a BRCA1/2 mutation is associated with their information-sharing behavior, and whether misinterpretation is associated with motives for sharing the result. METHODS Women in mammography clinics who completed a brief family history assessment and deemed to be at low likelihood of carrying a BRCA1/2 mutation were asked to complete a 1-time online survey between June 2016 and January 2017. RESULTS One-third (44/148) of women shared their family history screen result with someone in their social network. Result information was shared largely with a first-degree female relative to express feelings of relief (77%, 33/43). There were no differences in likelihood of sharing based on breast cancer risk interpretation. However, women who misinterpreted the implications of the result for general breast cancer risk reported more motives to share the result with their social network than those who accurately interpreted their breast cancer risk. CONCLUSIONS As family history-based screening for hereditary breast cancer is broadly implemented, the communication needs of the majority of women who will be unlikely of carrying a BRCA1/2 mutation must be considered. The motives of women who misinterpreted the implications of this result for breast cancer risk suggest the possibility that miscommunication could be spread to the broader family network.
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Affiliation(s)
- Jingsong Zhao
- Department of Behavioral, Social, and Health Education Sciences, Rollins School of Public Health, Emory University, Atlanta, Georgia, USA,
| | - Colleen M McBride
- Department of Behavioral, Social, and Health Education Sciences, Rollins School of Public Health, Emory University, Atlanta, Georgia, USA
| | - Yue Guan
- Department of Behavioral, Social, and Health Education Sciences, Rollins School of Public Health, Emory University, Atlanta, Georgia, USA
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Pokharel M, Elrick A, Canary HE, Clayton MF, Sukovic M, Champine M, Hong SJ, Kaphingst KA. Health communication roles in Latino, Pacific Islander, and Caucasian Families: A qualitative investigation. J Genet Couns 2019; 29:399-409. [PMID: 31605434 DOI: 10.1002/jgc4.1177] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/23/2019] [Revised: 08/28/2019] [Accepted: 09/16/2019] [Indexed: 11/06/2022]
Abstract
Family communication about health is critical for the dissemination of information that may improve health management of all family members. Communication about health issues, attitudes, and behaviors in families is associated with life expectancy as well as quality of life for family members. This study addresses family communication about health by examining individual roles for family health communication and factors related to these roles, among families of three different racial/ethnic groups: Caucasians, Latinos, and Pacific Islanders. Data were collected from 60 participants recruited as 30 family dyads, 10 from each group, through qualitative semistructured interviews. Interviews were conducted with each participant separately and then together in a dyadic interview. Two coders independently coded interview transcripts using NVivo 11. Results identified the family health communication roles of collector, disseminator, health educator, and researcher. We also identified several factors related to these roles using the lens of family systems theory-the presence of chronic conditions in the family, previous experience, medical education, and family hierarchy. Findings demonstrate many similarities and relatively few differences in the family health communication roles and the related factors among the families of different race/ethnicity. Conclusions highlight implications for future research and intervention development.
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Affiliation(s)
- Manusheela Pokharel
- Department of Communication Studies, Texas State University, San Marcos, Texas
| | - Ashley Elrick
- Department of Communication, University of Utah, Salt Lake City, Utah.,Huntsman Cancer Institute, Salt Lake City, Utah
| | - Heather E Canary
- School of Communication, San Diego State University, San Diego, California
| | - Margaret F Clayton
- Huntsman Cancer Institute, Salt Lake City, Utah.,College of Nursing, University of Utah, Salt Lake City, Utah
| | - Masha Sukovic
- Department of Communication, University of Utah, Salt Lake City, Utah
| | | | - Soo Jung Hong
- Department of Communications and New Media, National University of Singapore, Singapore
| | - Kimberly A Kaphingst
- Department of Communication, University of Utah, Salt Lake City, Utah.,Huntsman Cancer Institute, Salt Lake City, Utah
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Himes DO, Davis SH, Lassetter JH, Peterson NE, Clayton MF, Birmingham WC, Kinney AY. Does family communication matter? Exploring knowledge of breast cancer genetics in cancer families. J Community Genet 2019; 10:481-487. [PMID: 30877488 PMCID: PMC6754477 DOI: 10.1007/s12687-019-00413-y] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/24/2018] [Accepted: 02/28/2019] [Indexed: 12/24/2022] Open
Abstract
Knowledge of breast cancer genetics is critical for those at increased hereditary risk who must make decisions about breast cancer screening options. This descriptive study explored theory-based relationships among cognitive and emotional variables related to knowledge of breast cancer genetics in cancer families. Participants included first-degree relatives of women with breast cancer who had received genetic counseling and testing. Study participants themselves did not have breast cancer and had not received genetic counseling or testing. Data were collected by telephone interviews and surveys. Variables analyzed included numeracy, health literacy, cancer-related distress, age, education, and the reported amount of information shared by the participants' family members about genetic counseling. The multiple regression model explained 13.9% of variance in knowledge of breast cancer genetics (p = 0.03). Best fit of the multiple regression model included all variables except education. Reported amount of information shared was the only independently significant factor associated with knowledge (β = 0.28, p = 0.01). Participants who reported higher levels of information shared by a family member about information learned during a genetic counseling session also demonstrated increased knowledge about breast cancer genetics.
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Affiliation(s)
- Deborah O Himes
- College of Nursing, Brigham Young University, 500 Spencer W. Kimball Tower, Provo, UT, USA.
| | - Sarah H Davis
- College of Nursing, Brigham Young University, 500 Spencer W. Kimball Tower, Provo, UT, USA
| | - Jane H Lassetter
- College of Nursing, Brigham Young University, 500 Spencer W. Kimball Tower, Provo, UT, USA
| | - Neil E Peterson
- College of Nursing, Brigham Young University, 500 Spencer W. Kimball Tower, Provo, UT, USA
| | - Margaret F Clayton
- College of Nursing, University of Utah, 10 South 2000 East, Salt Lake City, UT, 84112, USA
| | - Wendy C Birmingham
- Department of Psychology, Brigham Young University, 1054 Spencer W. Kimball Tower, Provo, UT, 84604, USA
| | - Anita Y Kinney
- Department of Epidemiology - School of Public Health, Rutgers University, Piscataway, NJ, 08854, USA
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Breast cancer risk assessment: Evaluation of screening tools for genetics referral. J Am Assoc Nurse Pract 2019; 31:562-572. [PMID: 31425377 DOI: 10.1097/jxx.0000000000000272] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/25/2022]
Abstract
BACKGROUND AND PURPOSE The United States Preventative Services Task Force (USPSTF) recommends breast cancer risk-screening tools to help primary care providers determine which unaffected patients to refer to genetic specialists. The USPSTF does not recommend one tool above others. The purpose of this study was to compare tool performance in identifying women at risk for breast cancer. METHODS Pedigrees of 85 women aged 40-74 years with first-degree female relative with breast cancer were evaluated using five tools: Family History Screen-7 (FHS-7), Pedigree Assessment Tool, Manchester Scoring System, Referral Screening Tool, and Ontario Family History Assessment Tool (Ontario-FHAT). Sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV) were calculated to describe each tool's ability to identify women with elevated risk as defined by Claus Model calculations (lifetime risk ≥15%). Receiver operating curves were plotted. Differences between areas under the curve were estimated and compared through logistic regression to assess for differences in tool performance. CONCLUSIONS Claus calculations identified 14 of 85 women with elevated risk. Two tools, Ontario-FHAT and FHS-7, identified all women with elevated risk (sensitivity 100%). The FHS-7 tool flagged all participants (specificity 0%). The Ontario-FHAT flagged 59 participants as needing referral (specificity 36.2%) and had a NPV of 100%. Area under the curve values were not significantly different between tools (all p values > .05), and thus were not helpful in discriminating between the tools. IMPLICATIONS FOR PRACTICE The Ontario-FHAT outperformed other tools in sensitivity and NPV; however, low specificity and PPV must be balanced against these findings. Thus, the Ontario-FHAT can help determine which women would benefit from referral to genetics specialists.
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Himes DO, Gibbons DK, Birmingham WC, Beckstrand RL, Gammon A, Kinney AY, Clayton MF. Female family members lack understanding of indeterminate negative BRCA1/2 test results shared by probands. J Genet Couns 2019; 28:950-961. [PMID: 31199558 DOI: 10.1002/jgc4.1147] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/04/2018] [Revised: 05/23/2019] [Accepted: 05/26/2019] [Indexed: 11/10/2022]
Abstract
Genetic test results have important implications for close family members. Indeterminate negative results are the most common outcome of BRCA1/2 mutation testing. Little is known about family members' understanding of indeterminate negative BRCA1/2 test results. The purpose of this mixed-methods study was to investigate how daughters and sisters received and understood genetic test results as shared by their mothers or sisters. Participants included 81 women aged 40-74 with mothers or sisters previously diagnosed with breast cancer and who received indeterminate negative BRCA1/2 test results. Participants had never been diagnosed with breast cancer nor received their own genetic testing or counseling. This Institutional Review Board-approved study utilized semi-structured interviews and surveys. Descriptive coding with theme development was used during qualitative analysis. Participants reported low amounts of information shared with them. Most women described test results as negative and incorrectly interpreted the test to mean there was no genetic component to the pattern of cancer in their families. Only seven of 81 women accurately described test results consistent with the meaning of an indeterminate negative. Our findings demonstrate that indeterminate negative genetic test results are not well understood by family members. Lack of understanding may lead to an inability to effectively communicate results to primary care providers and missed opportunities for prevention, screening, and further genetic testing. Future research should evaluate acceptability and feasibility of providing family members letters they can share with their own primary care providers.
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Affiliation(s)
| | | | | | | | - Amanda Gammon
- Department of Genetic Counseling, Huntsman Cancer Institute, Salt Lake City, Utah.,Graduate Program in Genetic Counseling, University of Utah, Salt Lake City, Utah
| | - Anita Y Kinney
- Department of Biostatistics and Epidemiology, School of Public Health, Rutgers, The State University of New Jersey, Piscataway, New Jersey.,Rutgers Cancer Institute of New Jersey, New Brunswick, New Jersey
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Tercyak KP, Bronheim SM, Kahn N, Robertson HA, Anthony BJ, Mays D, O’Neill SC, Peterson SK, Miesfeldt S, Peshkin BN, DeMarco TA. Cancer genetic health communication in families tested for hereditary breast/ovarian cancer risk: a qualitative investigation of impact on children's genetic health literacy and psychosocial adjustment. Transl Behav Med 2019; 9:493-503. [PMID: 31094441 PMCID: PMC6520800 DOI: 10.1093/tbm/ibz012] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/15/2022] Open
Abstract
Children's literacy about the genetics of late-onset hereditary breast/ovarian cancer (HBOC) often develops through conversations with parents about BRCA gene testing and adults' cancer diagnoses. These conversations may promote early understanding of HBOC, but the long-term impact on children's psychosocial adjustment remains unclear. We investigated cancer genetic health communication in BRCA-tested families to consider benefits, risks, and moderating influences on children's understanding and well-being. Adolescent and young adult children (ages 12-24) of mothers who underwent BRCA testing 1+ years previously completed qualitative interviews that were transcribed, coded (intercoder K ≥ .70), and content-analyzed (N = 34). Children readily recalled conversations about BRCA testing and HBOC (100%) that they considered important (94%), but implications for children were ambiguous and obfuscated their concerns. Psychosocial impacts were muted, multifaceted, and displayed a range of favorable (82%), neutral (71%), and unfavorable (59%) response-frequently co-occurring within the same child over different aspects (e.g., medical, concern for self and others). Children verbalized active (50%) and avoidant (38%) coping strategies: about 1:5 endorsed transient thoughts about vulnerability to HBOC, 1:3 had not further considered it, and all reported specific actions they had or would undertake to remain healthy (e.g., diet/exercise). A majority (94%) of children had or would consider genetic testing for themselves, usually later in life (59%). Long-term outcomes highlighted benefits (awareness of HBOC, psychological hardiness, healthier lifestyle behaviors), as well as some psychosocial concerns that could be managed through interventions promoting genetic health literacy.
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Affiliation(s)
- Kenneth P Tercyak
- Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, DC, USA
- Center for Child and Human Development, Georgetown University Medical Center, Washington, DC, USA
| | - Suzanne M Bronheim
- Center for Child and Human Development, Georgetown University Medical Center, Washington, DC, USA
| | - Nicole Kahn
- Center for Child and Human Development, Georgetown University Medical Center, Washington, DC, USA
| | - Hillary A Robertson
- Department of Psychiatry, Georgetown University Medical Center, Washington, DC, USA
| | - Bruno J Anthony
- Center for Child and Human Development, Georgetown University Medical Center, Washington, DC, USA
| | - Darren Mays
- Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, DC, USA
| | - Suzanne C O’Neill
- Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, DC, USA
| | - Susan K Peterson
- Department of Behavioral Science, MD Anderson Cancer Center, Houston, TX, USA
| | - Susan Miesfeldt
- Scarborough Campus, Maine Medical Center Cancer Institute, Scarborough, ME, USA
| | - Beth N Peshkin
- Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, DC, USA
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13
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Joseph G, Lee R, Pasick RJ, Guerra C, Schillinger D, Rubin S. Effective communication in the era of precision medicine: A pilot intervention with low health literacy patients to improve genetic counseling communication. Eur J Med Genet 2018; 62:357-367. [PMID: 30553023 DOI: 10.1016/j.ejmg.2018.12.004] [Citation(s) in RCA: 40] [Impact Index Per Article: 5.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/22/2018] [Revised: 12/05/2018] [Accepted: 12/08/2018] [Indexed: 01/19/2023]
Abstract
Effective communication, where all parties share a common understanding, is necessary to realize the promise of Genomic Medicine. It is especially salient given the imperative to increase the participation of diverse populations in genomics research and to expand the reach of clinical genomics. We have previously shown that cancer genetic counseling is suboptimal for patients with limited health literacy. To address this finding, we implemented a pilot study to improve verbal communication between genetic counselors and their patients of limited health literacy that consisted of: i) curriculum development and delivery of a Genetic Counselors (GC) communication workshop; ii) two-month post-workshop interviews with GC participants (n = 9); iii) observations/audio recordings of counseling sessions involving 24 patients and two GC workshop participants; iv) post-counseling interviews with patients (n = 9). The 4.5-h workshop presented evidenced-based principles and strategies for effective communication with limited health literacy patients (e.g. use of plain language and teach-back), and offered specific techniques and exercises to practice adoption of such practices in the genetic counseling context. GCs expressed appreciation for the opportunity to refine their skills; however, they reported that some strategies were challenging given their professional training and communication habits. For example, GCs were concerned that use of plain language could undermine efforts to obtain informed consent and provide scientifically accurate information. Observations and patient interviews after the workshop revealed that GCs were able to employ the communication strategies with positive effects, with patients indicating sufficient understanding of the genetic test and its implications as well as satisfaction with the counselors' communication. While derived from research on communication with those of limited health literacy, the communication approaches taught in the GC workshop could benefit most patients, given the high rates of low health literacy in many countries, and the many factors beyond health literacy that can contribute to reduced comprehension in health care environments.
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Affiliation(s)
- Galen Joseph
- Department of Anthropology, History & Social Medicine, University of California, San Francisco, United States; Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco, United States.
| | - Robin Lee
- Cancer Genetics & Prevention Program, University of California, San Francisco, United States
| | - Rena J Pasick
- Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco, United States; Department of General Internal Medicine, University of California, San Francisco, United States
| | - Claudia Guerra
- Department of General Internal Medicine, University of California, San Francisco, United States
| | - Dean Schillinger
- Department of Medicine, University of California, San Francisco, United States
| | - Sara Rubin
- Department of Social & Behavioral Sciences, University of California, San Francisco, United States
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14
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LePoire E, Basu B, Walker L, Bowen DJ. What do people think about genetics? A systematic review. J Community Genet 2018; 10:171-187. [PMID: 30406598 DOI: 10.1007/s12687-018-0394-0] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/16/2018] [Accepted: 10/23/2018] [Indexed: 11/27/2022] Open
Abstract
Genetics is increasingly becoming a part of modern medical practice. How people think about genetics' use in medicine and their daily lives is therefore essential. Earlier studies indicated mixed attitudes about genetics. However, this might be changing. Using the preferred reporting items for systematic reviews and meta-analyses (PRISMA) as a guideline, we initially reviewed 442 articles that looked at awareness, attitudes, knowledge, and perception of risks among the general and targeted recruitment populations. After fitting our criteria (from the last 5 years, conducted in the USA, non-provider populations, quantitative results reported, and assessed participants 18 years and older), finally 51 eligible articles were thematically coded and presented in this paper. Awareness is reported as relatively high in the studies reviewed. Attitudes are mixed but with higher proportions reporting positive attitudes towards genetic testing and counseling. Self-reported knowledge is reasonably high, specifically with the effects of specific programs developed to raise knowledge levels of the general and targeted recruited populations. Perception of risk is somewhat aligned with actual risk. With the reasonable positive reports of genetic awareness and knowledge, there is similar positive attitude and perception of risk, supporting the need for continued dissemination of such knowledge. Given interest in incorporating community participation in genomic educational strategies, we provide this review as a baseline from which to launch community-specific educational supports and tools.
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Affiliation(s)
- Erin LePoire
- University of Washington, Box 357120, Seattle, WA, 98195, USA
| | - Baishakhi Basu
- University of Washington, Box 357120, Seattle, WA, 98195, USA
| | - Lorelei Walker
- Health Equity Circle, University of Washington, Seattle, WA, 98195, USA
| | - Deborah J Bowen
- University of Washington, Box 357120, Seattle, WA, 98195, USA.
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15
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Hudson J, Sturm AC, Salberg L, Brennan S, Quinn GP, Vadaparampil ST. Disclosure of diagnosis to at-risk relatives by individuals diagnosed with hypertrophic cardiomyopathy (HCM). J Community Genet 2018; 10:207-217. [PMID: 30121752 DOI: 10.1007/s12687-018-0377-1] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/01/2017] [Accepted: 08/05/2018] [Indexed: 01/28/2023] Open
Abstract
Hypertrophic cardiomyopathy (HCM) affects 1 in 200 people and is the most common cause of sudden cardiac death in the young. Given that HCM usually is inherited in an autosomal dominant pattern, an HCM diagnosis has implications for biologically related family members. The purpose of this study was to explore probands' disclosure of an HCM diagnosis with these biologically related, at-risk family members. An online survey was posted on the website of the Hypertrophic Cardiomyopathy Association (HCMA), an advocacy and support group for HCM patients and their families. Descriptive statistics were used to summarize responses to closed-ended questions and demographics. Using an iterative content analysis with the constant comparison approach, we analyzed the responses to open-ended questions inquiring about the nature and role of disclosure communication with at-risk relatives. A total of 315 individuals with a self-reported diagnosis of HCM completed the survey. Most participants (98%) disclosed their diagnosis to at-risk family members. Sixty-four percent disclosed to family members less than 1 year after diagnosis. Participants also disclosed potential treatment options (74.6%) and the emotional impact of the diagnosis (39%). HCM specialists were ranked by participants as being the most helping in explaining the benefit of genetic counseling, while genetic counselor were ranked as least helpful. Emerging themes address the need to encourage screening and genetic testing among family members and to identify external educational resources for use during the disclosure process. Importantly, our study found that the process of disclosure varies based on individuals' experiences and family communication dynamics. However, almost all participants expressed the importance of disclosing the diagnosis of HCM as well as the importance of being screened and expressed needs for additional support during the disclosure process.
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Affiliation(s)
- Janella Hudson
- Health Outcomes and Behavior Program, H. Lee Moffitt Cancer Center and Research Institute, Tampa, FL, 33612, USA. .,, Tampa, USA.
| | - Amy C Sturm
- Wexner Medical Center and Dorothy M. Davis Heart and Lung Research Institute, The Ohio State University, Columbus, OH, 43210, USA
| | - Lisa Salberg
- Hypertrophic Cardiomyopathy Association, Denville, NJ, 07834, USA
| | - Simone Brennan
- School of Medicine, Wayne State University, Detroit, MI, 48201, USA
| | - Gwendolyn P Quinn
- Health Outcomes and Behavior Program, H. Lee Moffitt Cancer Center and Research Institute, Tampa, FL, 33612, USA.,Department of Oncologic Science, Morsani College of Medicine, University of South Florida, Tampa, FL, 33612, USA.,Department of OB-GYN and Population Health, School of Medicine, New York University, New York, NY, 10016, USA
| | - Susan T Vadaparampil
- Health Outcomes and Behavior Program, H. Lee Moffitt Cancer Center and Research Institute, Tampa, FL, 33612, USA.,Department of Oncologic Science, Morsani College of Medicine, University of South Florida, Tampa, FL, 33612, USA
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16
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Vicuña B, Delaney HD, Flores KG, Ballinger L, Royce M, Dayao Z, Pal T, Kinney AY. Preferences for multigene panel testing for hereditary breast cancer risk among ethnically diverse BRCA-uninformative families. J Community Genet 2018; 9:81-92. [PMID: 28971318 PMCID: PMC5752653 DOI: 10.1007/s12687-017-0322-8] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/03/2017] [Accepted: 08/04/2017] [Indexed: 12/21/2022] Open
Abstract
Until recently, genetic testing for hereditary breast cancer has primarily focused on pathogenic variants in the BRCA1 and BRCA2 (BRCA) genes. However, advances in DNA sequencing technologies have made simultaneous testing for multiple genes possible. We examined correlates of interest in multigene panel testing and risk communication preferences in an ethnically diverse sample of women who tested negative for BRCA mutations previously but remain at high risk based on their family history (referred to as "BRCA-uninformative") and their at-risk female family members. Two-hundred and thirteen women with a previous breast cancer diagnosis and a BRCA-uninformative test result and their first-degree relatives completed a survey on interest in multigene panel testing, communication preferences, and sociodemographic, psychological, and clinical factors. Stepwise logistic regression was used to identify factors associated with testing interest. Chi-square analyses were used to test differences in risk communication preferences. Interest in multigene panel testing was high (84%) and did not considerably differ by cancer status or ethnicity. In multivariable analysis, factors significantly associated with interest in genetic testing were having had a mammogram in the past 2 years (odds ratio (OR) = 4.04, 95% confidence interval (CI) 1.80-9.02) and high cancer worry (OR = 3.77, 95% CI 1.34-10.60). Overall, the most commonly preferred genetic communication modes were genetic counselors, oncologists, and print materials. However, non-Hispanic women were more likely than Hispanic women to prefer web-based risk communication (p < 0.001). Hispanic and non-Hispanic women from BRCA-uninformative families have a high level of interest in gene panel testing. Cancer-related emotions and communication preferences should be considered in developing targeted genetic risk communication strategies.
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Affiliation(s)
- Belinda Vicuña
- Cancer Research Facility, University of New Mexico Comprehensive Cancer Center, University of New Mexico, MSC 07 4025, Albuquerque, NM, 87125, USA
- Department of Psychology, University of New Mexico, Albuquerque, NM, USA
- Robert Wood Johnson Foundation, Center for Health Policy, University of New Mexico, Albuquerque, NM, USA
| | - Harold D Delaney
- Department of Psychology, University of New Mexico, Albuquerque, NM, USA
| | - Kristina G Flores
- Cancer Research Facility, University of New Mexico Comprehensive Cancer Center, University of New Mexico, MSC 07 4025, Albuquerque, NM, 87125, USA
| | - Lori Ballinger
- Cancer Research Facility, University of New Mexico Comprehensive Cancer Center, University of New Mexico, MSC 07 4025, Albuquerque, NM, 87125, USA
| | - Melanie Royce
- Cancer Research Facility, University of New Mexico Comprehensive Cancer Center, University of New Mexico, MSC 07 4025, Albuquerque, NM, 87125, USA
| | - Zoneddy Dayao
- Cancer Research Facility, University of New Mexico Comprehensive Cancer Center, University of New Mexico, MSC 07 4025, Albuquerque, NM, 87125, USA
| | - Tuya Pal
- Department of Medicine, Vanderbilt University Medical Center/Vanderbilt-Ingram Cancer Center, Nashville, TN, USA
| | - Anita Y Kinney
- Cancer Research Facility, University of New Mexico Comprehensive Cancer Center, University of New Mexico, MSC 07 4025, Albuquerque, NM, 87125, USA.
- Robert Wood Johnson Foundation, Center for Health Policy, University of New Mexico, Albuquerque, NM, USA.
- Department of Internal Medicine, University of New Mexico, Albuquerque, NM, USA.
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17
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Scherr CL, Dean M, Clayton MF, Hesse BW, Silk K, Street RL, Krieger J. A Research Agenda for Communication Scholars in the Precision Medicine Era. JOURNAL OF HEALTH COMMUNICATION 2017; 22:839-848. [PMID: 28956728 DOI: 10.1080/10810730.2017.1363324] [Citation(s) in RCA: 14] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 05/24/2023]
Abstract
The 2015 announcement of the Precision Medicine Initiative (PMI) galvanized and energized efforts to reconsider medical practice through tailoring of prevention and treatment recommendations based on genetics, environment, and lifestyle. Numerous disciplines contributed white papers identifying challenges associated with PMI and calling for discipline-specific research that might provide solutions to such challenges. Throughout these white papers, the prominence of communication in achieving the PMI's goals is obviously apparent. In this article, we highlight opportunities for communication scholars' contributions to the PMI based on challenges identified in white papers from other disciplines and work already conducted by research teams in the field of communication.
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Affiliation(s)
- Courtney L Scherr
- a Department of Communication Studies , Northwestern University , Evanston , Illinois , USA
| | - Marleah Dean
- b Department of Communication , University of South, Florida , Tampa , Florida , USA
| | | | - Bradford W Hesse
- d Health Communication and Informatics Research Branch , National Cancer Institute , Bethesda , Maryland , USA
| | - Kami Silk
- e Department of Communication , Michigan State University , East Lansing , Michigan , USA
| | - Richard L Street
- f Department of Communication , Texas A&M University , College Station , Texas , USA
| | - Janice Krieger
- g STEM Translational Communication Center, College of Journalism and Communications , University of Florida , Gainesville , Florida , USA
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18
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Issues Arising in Psychological Consultations to Help Parents Talk to Minor and Young Adult Children about their Cancer Genetic Test Result: a Guide to Providers. J Genet Couns 2016; 26:251-260. [DOI: 10.1007/s10897-016-0010-6] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/29/2016] [Accepted: 08/21/2016] [Indexed: 10/20/2022]
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19
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Flores KG, Steffen LE, McLouth CJ, Vicuña BE, Gammon A, Kohlmann W, Vigil L, Dayao ZR, Royce ME, Kinney AY. Factors Associated with Interest in Gene-Panel Testing and Risk Communication Preferences in Women from BRCA1/2 Negative Families. J Genet Couns 2016; 26:480-490. [PMID: 27496122 DOI: 10.1007/s10897-016-0001-7] [Citation(s) in RCA: 12] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/29/2015] [Accepted: 07/18/2016] [Indexed: 12/12/2022]
Abstract
Scientific advances have allowed the development of multiplex gene-panels to assess many genes simultaneously in women who have tested negative for BRCA1/2. We examined correlates of interest in testing for genes that confer modest and moderate breast cancer risk and risk communication preferences for women from BRCA negative families. Female first-degree relatives of breast cancer patients who tested negative for BRCA1/2 mutations (N = 149) completed a survey assessing multiplex genetic testing interest and risk communication preferences. Interest in testing was high (70 %) and even higher if results could guide risk-reducing behavior changes such as taking medications (79 %). Participants preferred to receive genomic risk communications from a variety of sources including: primary care physicians (83 %), genetic counselors (78 %), printed materials (71 %) and the web (60 %). Factors that were independently associated with testing interest were: perceived lifetime risk of developing cancer (odds ratio (OR) = 1.67: 95 % confidence interval (CI) 1.06-2.65) and high cancer worry (OR = 3.12: CI 1.28-7.60). Findings suggest that women from BRCA1/2 negative families are a unique population and may be primed for behavior change. Findings also provide guidance for clinicians who can help develop genomic risk communications, promote informed decision making and customize behavioral interventions.
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Affiliation(s)
- Kristina G Flores
- University of New Mexico Comprehensive Cancer Center, University of New Mexico, MSC07 4025, 2325 Camino de Salud NE, Albuquerque, NM, 87131-0001, USA.
| | - Laurie E Steffen
- University of New Mexico Comprehensive Cancer Center, University of New Mexico, MSC07 4025, 2325 Camino de Salud NE, Albuquerque, NM, 87131-0001, USA.,Department of Psychology, University of New Mexico, Albuquerque, NM, USA
| | | | - Belinda E Vicuña
- University of New Mexico Comprehensive Cancer Center, University of New Mexico, MSC07 4025, 2325 Camino de Salud NE, Albuquerque, NM, 87131-0001, USA.,Department of Psychology, University of New Mexico, Albuquerque, NM, USA
| | - Amanda Gammon
- Huntsman Cancer Institute, University of Utah, Salt Lake City, UT, USA
| | - Wendy Kohlmann
- Huntsman Cancer Institute, University of Utah, Salt Lake City, UT, USA
| | - Lucretia Vigil
- University of New Mexico Comprehensive Cancer Center, University of New Mexico, MSC07 4025, 2325 Camino de Salud NE, Albuquerque, NM, 87131-0001, USA
| | - Zoneddy R Dayao
- University of New Mexico Comprehensive Cancer Center, University of New Mexico, MSC07 4025, 2325 Camino de Salud NE, Albuquerque, NM, 87131-0001, USA.,Department of Internal Medicine, University of New Mexico, Albuquerque, NM, USA
| | - Melanie E Royce
- University of New Mexico Comprehensive Cancer Center, University of New Mexico, MSC07 4025, 2325 Camino de Salud NE, Albuquerque, NM, 87131-0001, USA.,Department of Internal Medicine, University of New Mexico, Albuquerque, NM, USA
| | - Anita Y Kinney
- University of New Mexico Comprehensive Cancer Center, University of New Mexico, MSC07 4025, 2325 Camino de Salud NE, Albuquerque, NM, 87131-0001, USA.,Department of Internal Medicine, University of New Mexico, Albuquerque, NM, USA
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20
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Daly MB. Family Communication of Genetic Risk: A Personalized Approach. CURRENT GENETIC MEDICINE REPORTS 2016. [DOI: 10.1007/s40142-016-0088-z] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/12/2022]
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21
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Al Zoubi MS. X-ray repair cross-complementing protein 1 and 3 polymorphisms and susceptibility of breast cancer in a Jordanian population. Saudi Med J 2015; 36:1163-1167. [PMID: 26446325 PMCID: PMC4621720 DOI: 10.15537/smj.2015.10.12659] [Citation(s) in RCA: 13] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/11/2015] [Accepted: 09/04/2015] [Indexed: 11/16/2022] Open
Abstract
OBJECTIVES To elucidate the contribution of x-ray repair cross-complementing (XRCC) protein 1 399Gln, XRCC3 241M, and XRCC3-5'-UTR polymorphisms to the susceptibility of breast cancer (BC) in a Jordanian population. METHODS Forty-six formalin fixed paraffin embedded tissue samples from BC diagnosed female patients, and 31 samples from the control group were subjected to DNA sequencing. Samples were collected between September 2013 and December 2014. RESULTS The XRCC1 Arg399Gln genotype did not exhibit any significant correlation with the susceptibility of BC (odds ratio [OR]=1.45, 95% confidence interval [CI]: 0.60-3.51) (p=0.47). Likewise, XRCC3 M241T genotype did not show significant correlation with BC (OR=2.02, 95% CI: 0.50-8.21) (p=0.40). However, distribution of XRCC3-5'UTR (rs1799794 A/G) genotype showed a significant difference between the patient and control group (OR=0.73, 95% CI: 0.06-8.46) (p=0.02). CONCLUSION The XRCC3-5'UTR (rs1799794) G allele frequency was higher in cancer patients while XRCC1 (rs25487) and XRCC3 (rs861539) did not show any significant correlation with susceptibility of BC in the selected Jordanian population. Contribution of other environmental factors should be studied in future works, as well as the response of cancer therapy.
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Affiliation(s)
- Mazhar S Al Zoubi
- Department of Biological Sciences, Yarmouk University, Irbid, Jordan. E-mail.
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