دورية أكاديمية

How do women who are informed that they are at increased risk of breast cancer appraise their risk? A systematic review of qualitative research.

التفاصيل البيبلوغرافية
العنوان: How do women who are informed that they are at increased risk of breast cancer appraise their risk? A systematic review of qualitative research.
المؤلفون: Woof VG; University of Manchester, Oxford Road, Manchester, M13 9PL, UK. victoria.woof@postgrad.manchester.ac.uk., Howell A; University of Manchester, Oxford Road, Manchester, M13 9PL, UK.; The Nightingale Centre, Wythenshawe Hospital, Manchester University NHS Foundation Trust, Southmoor Road, Manchester, M23 9QZ, UK., McWilliams L; University of Manchester, Oxford Road, Manchester, M13 9PL, UK., Gareth Evans D; University of Manchester, Oxford Road, Manchester, M13 9PL, UK.; The Nightingale Centre, Wythenshawe Hospital, Manchester University NHS Foundation Trust, Southmoor Road, Manchester, M23 9QZ, UK., French DP; University of Manchester, Oxford Road, Manchester, M13 9PL, UK.
المصدر: British journal of cancer [Br J Cancer] 2022 Nov; Vol. 127 (11), pp. 1916-1924. Date of Electronic Publication: 2022 Aug 24.
نوع المنشور: Systematic Review; Journal Article; Review; Research Support, Non-U.S. Gov't
اللغة: English
بيانات الدورية: Publisher: Nature Publishing Group on behalf of Cancer Research UK Country of Publication: England NLM ID: 0370635 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1532-1827 (Electronic) Linking ISSN: 00070920 NLM ISO Abbreviation: Br J Cancer Subsets: MEDLINE
أسماء مطبوعة: Publication: 2002- : London : Nature Publishing Group on behalf of Cancer Research UK
Original Publication: London, Lewis.
مواضيع طبية MeSH: Breast Neoplasms*/epidemiology , Breast Neoplasms*/etiology , Breast Neoplasms*/diagnosis, Female ; Humans ; Qualitative Research
مستخلص: This review aimed to synthesise qualitative research on how women notified that they are at increased risk of breast cancer view their risk. Five electronic databases were systematically reviewed for qualitative research investigating how women who have received an increased breast cancer risk estimate appraise their risk status. Fourteen records reporting 12 studies were included and critically appraised. Data were thematically synthesised. Four analytical themes were generated. Women appraise their risk of breast cancer through comparison with their risk of other familial diseases. Clinically derived risk estimates were understood in relation to pre-conceived risk appraisals, with incongruences met with surprise. Family history is relied upon strongly, with women exploring similarities and differences in attributes between themselves and affected relatives to gauge the likelihood of diagnosis. Women at increased risk reported living under a cloud of inevitability or uncertainty regarding diagnosis, resulting in concerns about risk management. Women hold stable appraisals of their breast cancer risk which appear to be mainly formed through their experiences of breast cancer in the family. Healthcare professionals should explore women's personal risk appraisals prior to providing clinically derived risk estimates in order to address misconceptions, reduce concerns about inevitability and increase perceived control over risk reduction.
(© 2022. The Author(s).)
References: NICE. Familial breast cancer: classification, care and managing breast cancer and related risks in people with a family history of breast cancer. National Institute for Health and Care Excellence. 2017. https://www.nice.org.uk/guidance/cg164/resources/familial-breast-cancer-classification-care-and-managing-breast-cancer-and-related-risks-in-people-with-a-family-history-of-breast-cancer-pdf-35109691767493 . Accessed Jan 2022.
French D, Marteau T. Communicating risk. In: Llewellyn C, Ayers S, McManus IC, Newman SP, Petrie K, Revenson T, Weinman J, editors. Cambridge handbook of psychology, health and medicine. Cambridge: Cambridge University Press; 2019.
Brust-Renck PG, Royer CE, Reyna VF. Communicating numerical risk: Human factors that aid understanding in health care. Rev Hum Factors Ergon. 2013;8:235–76. (PMID: 24999307407891810.1177/1557234X13492980)
Weinstein ND. What does it mean to understand a risk? Evaluating risk comprehension. JNCI Monogr. 1999;1999:15–20. (PMID: 10.1093/oxfordjournals.jncimonographs.a024192)
Hopwood P. Breast cancer risk perception: what do we know and understand? Breast Cancer Res. 2000;2:1–5. (PMID: 10.1186/bcr83)
Hilgart J, Phelps C, Bennett P, Hood K, Brain K, Murray A. “I have always believed I was at high risk…” The role of expectation in emotional responses to the receipt of an average, moderate or high cancer genetic risk assessment result: a thematic analysis of free-text questionnaire comments. Fam Cancer. 2010;9:469–77. (PMID: 2011965110.1007/s10689-010-9324-y)
Heiniger L, Butow PN, Charles M, Price MA. Intuition versus cognition: a qualitative exploration of how women understand and manage their increased breast cancer risk. J Behav Med. 2015;38:727–39. (PMID: 2582080910.1007/s10865-015-9632-7)
Spiegelhalter D. Risk and uncertainty communication. Annu Rev Stat Appl. 2017;4:31–60. (PMID: 10.1146/annurev-statistics-010814-020148)
Ozanne EM, Wittenberg E, Garber JE, Weeks JC. Breast cancer prevention: patient decision making and risk communication in the high risk setting. Breast J. 2010;16:38–47. (PMID: 1988916810.1111/j.1524-4741.2009.00857.x)
Lobb EA, Butow PN, Meiser B, Barratt A, Gaff C, Young MA, et al. Women’s preferences and consultants’ communication of risk in consultations about familial breast cancer: impact on patient outcomes. J Med Genet. 2003;40:e56. (PMID: 12746410173547310.1136/jmg.40.5.e56)
Cull A, Anderson EDC, Campbell S, Mackay J, Smyth E, Steel M. The impact of genetic counselling about breast cancer risk on women’s risk perceptions and levels of distress. Br J Cancer. 1999;79:501–8. (PMID: 10027320236243510.1038/sj.bjc.6690078)
Lerman C, Lustbader E, Rimer B, Daly M, Miller S, Sands C, et al. Effects of individualized breast cancer risk counseling: a randomized trial. JNCI: J Natl Cancer Inst. 1995;87:286–92. (PMID: 770742010.1093/jnci/87.4.286)
Bayne M, Fairey M, Silarova B, Griffin SJ, Sharp SJ, Klein WM, et al. Effect of interventions including provision of personalised cancer risk information on accuracy of risk perception and psychological responses: a systematic review and meta-analysis. Patient Educ Counsel. 2020;103:83–95. (PMID: 10.1016/j.pec.2019.08.010)
Klein WM, Ferrer RA, Kaufman AR. How (or do) people “think” about cancer risk, and why that matters. JAMA Oncol. 2020;6:983–4. (PMID: 3243749210.1001/jamaoncol.2020.0170)
Meiser B, Irle J, Lobb E, Barlow-Stewart K. Assessment of the content and process of genetic counseling: a critical review of empirical studies. J Genet Counsel. 2008;17:434–51. (PMID: 10.1007/s10897-008-9173-0)
Fielden HG, Brown SL, Saini P, Beesley H, Salmon P. How do women at increased breast cancer risk perceive and decide between risks of cancer and risk‐reducing treatments? A synthesis of qualitative research. Psychooncology. 2017;26:1254–62. (PMID: 27983769559998310.1002/pon.4349)
NHS Cancer Screening Programmes and Cancer Research Campaign. Familial breast and ovarian cancer: an information pack for primary care. London: Department of Health; 2001.
Moher D, Liberati A, Tetzlaff J, Altman DG, PRISMA Group. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med. 2009;151:264–9. (PMID: 1962251110.7326/0003-4819-151-4-200908180-00135)
Tong A, Flemming K, McInnes E, Oliver S, Craig J. Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Med Res Methodol. 2012;12:1–8. (PMID: 10.1186/1471-2288-12-181)
Gail M, Brinton L, Byar D, Corle D, Green S, Schairer C, et al. Projecting individualized probabilities of developing breast cancer for white females who are being examined annually. J Natl Cancer Inst. 1989;81:1879–86. (PMID: 259316510.1093/jnci/81.24.1879)
Rainey L, van der Waal D, Wengström Y, Jervaeus A, Broeders MJ. Women’s perceptions of the adoption of personalised risk-based breast cancer screening and primary prevention: a systematic review. Acta Oncol. 2018;57:1275–83. (PMID: 2988245510.1080/0284186X.2018.1481291)
Ouzzani M, Hammady H, Fedorowicz Z, Elmagarmid A. Rayyan—a web and mobile app for systematic reviews. Syst Rev. 2016;5:1–10. (PMID: 10.1186/s13643-016-0384-4)
Long HA, French DP, Brooks JM. Optimising the value of the critical appraisal skills programme (CASP) tool for quality appraisal in qualitative evidence synthesis. Res Methods Med Health Sci. 2020;1:31–42.
Tuval-Mashiach R. Raising the curtain: the importance of transparency in qualitative research. Qual Psychol. 2017;4:126. (PMID: 10.1037/qup0000062)
Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. 2008;8:1–10. (PMID: 10.1186/1471-2288-8-45)
Barnett-Page E, Thomas J. Methods for the synthesis of qualitative research: a critical review. BMC Med Res Methodol. 2009;9:1–11. (PMID: 10.1186/1471-2288-9-59)
Anderson EE, Tejada S, Warnecke RB, Hoskins K. Views of low-income women of color at increased risk for breast cancer. Narrat Inq Bioeth. 2018;8:53. (PMID: 631926110.1353/nib.2018.0023)
Appleton S, Fry A, Rees G, Rush R, Cull A. Psychosocial effects of living with an increased risk of breast cancer: an exploratory study using telephone focus groups. Psychooncology. 2000;9:511–21. (PMID: 1118058610.1002/1099-1611(200011/12)9:6<511::AID-PON469>3.0.CO;2-E)
Bennett P, Parsons E, Brain K, Hood K, reTrace Study Team. Long‐term cohort study of women at intermediate risk of familial breast cancer: experiences of living at risk. Psychooncology. 2010;19:390–8. (PMID: 1951401610.1002/pon.1588)
Gunn CM, Bokhour B, Parker VA, Parker PA, Blakeslee S, Bandos H, et al. Exploring explanatory models of risk in breast cancer risk counseling discussions NSABP/NRG Oncology Decision-Making Project (DMP)-1. Cancer Nurs. 2019;42:3. (PMID: 28661894574530510.1097/NCC.0000000000000517)
Gunn CM, Bokhour BG, Parker VA, Battaglia TA, Parker PA, Fagerlin A, et al. Understanding decision making about breast cancer prevention in action: the intersection of perceived risk, perceived control, and social context: NRG Oncology/NSABP DMP-1. Med Decis Mak. 2019;39:217–27. (PMID: 10.1177/0272989X19827258)
Gunn CM. Medically-defined risk and the engagement of patients in health services: a multi-level perspective. Doctoral dissertation, Boston University, 2015.
Hallowell N, Statham H, Murton F. Women’s understanding of their risk of developing breast/ovarian cancer before and after genetic counseling. J Genet Counsel. 1998;7:345–64. (PMID: 10.1023/A:1022072017436)
Robertson A. Embodying risk, embodying political rationality: women’s accounts of risks for breast cancer. Health Risk Soc. 2000;2:219–35. (PMID: 10.1080/713670161)
Schroeder D, Duggleby W, Cameron BL. Moving in and out of the what-ifs: the experiences of unaffected women living in families where a breast cancer 1 or 2 genetic mutation was not found. Cancer Nurs. 2017;40:386–93. (PMID: 27749355)
Schroeder AD. Living at-risk for hereditary breast cancer: the experiences of at-risk unaffected women who live in families where a BRCA gene mutation could not be found. 2016. https://era.library.ualberta.ca/items/09627bdc-08a2-4a09-b091-ecb480b128fc . Accessed July 2021.
Scott S, Prior L, Wood F, Gray J. Repositioning the patient: the implications of being ‘at risk’. Soc Sci Med. 2005;60:1869–79. (PMID: 1568681710.1016/j.socscimed.2004.08.020)
Altschuler A, Somkin CP. Women’s decision making about whether or not to use breast cancer chemoprevention. Women Health. 2005;41:81–95. (PMID: 1621958910.1300/J013v41n02_06)
Holmberg C, Waters EA, Whitehouse K, Daly M, McCaskill-Stevens W. My lived experiences are more important than your probabilities: the role of individualized risk estimates for decision making about participation in the Study of Tamoxifen and Raloxifene (STAR). Med Decis Mak. 2015;35:1010–22. (PMID: 10.1177/0272989X15594382)
Phelps C, Wood F, Bennett P, Brain K, Gray J. Knowledge and expectations of women undergoing cancer genetic risk assessment: a qualitative analysis of free-text questionnaire comments. J Genet Counsel. 2007;16:505–14. (PMID: 10.1007/s10897-007-9086-3)
Walter FM, Emery J. ‘Coming down the line’—patients’ understanding of their family history of common chronic disease. Ann Fam Med. 2005;3:405–14. (PMID: 16189056146692710.1370/afm.368)
Walter FM, Emery J, Braithwaite D, Marteau TM. Lay understanding of familial risk of common chronic diseases: a systematic review and synthesis of qualitative research. Ann Fam Med. 2004;2:583–94. (PMID: 15576545146675710.1370/afm.242)
Chalmers K, Thomson K. Coming to terms with the risk of breast cancer: perceptions of women with primary relatives with breast cancer. Qual Health Res. 1996;6:256–82. (PMID: 10.1177/104973239600600207)
Cameron LD. Illness risk representations and motivations to engage in protective behavior: the case of skin cancer risk. Psychol Health. 2008;23:91–112. (PMID: 2515990910.1080/14768320701342383)
French DP, Astley S, Brentnall AR, Cuzick J, Dobrashian R, Duffy SW, et al. What are the benefits and harms of risk stratified screening as part of the NHS breast screening Programme? Study protocol for a multi-site non-randomised comparison of BC-predict versus usual screening (NCT04359420). BMC Cancer. 2020;20:1–14. (PMID: 10.1186/s12885-020-07054-2)
Esserman LJ, Anton-Culver H, Borowsky A, Brain S, Cink T, Crawford B, et al. The WISDOM Study: breaking the deadlock in the breast cancer screening debate. NPJ Breast Cancer. 2017;3:34. (PMID: 28944288559757410.1038/s41523-017-0035-5)
MyPebs. Personalising breast screening. 2020. https://www.mypebs.eu/ . Accessed Jan 2022.
Harvie M, Pegington M, French D, Cooper G, McDiarmid S, Howell A, et al. Breast cancer risk status influences uptake, retention and efficacy of a weight loss programme amongst breast cancer screening attendees: two randomised controlled feasibility trials. BMC Cancer. 2019;19:1–9. (PMID: 10.1186/s12885-019-6279-8)
Harvie M, French DP, Pegington M, Cooper G, Howell A, McDiarmid S, et al. Testing a breast cancer prevention and a multiple disease prevention weight loss programme amongst women within the UK NHS breast screening programme—a randomised feasibility study. Pilot Feasibility Stud. 2021;7:1–16. (PMID: 10.1186/s40814-021-00947-4)
Hollands GJ, Usher-Smith JA, Hasan R, Alexander F, Clarke N, Griffin SJ. Visualising health risks with medical imaging for changing recipients’ health behaviours and risk factors: systematic review with meta-analysis. PLoS Med. 2022;19:e1003920. (PMID: 35239659889362610.1371/journal.pmed.1003920)
Ferrer RA, Klein WM, Persoskie A, Avishai-Yitshak A, Sheeran P. The tripartite model of risk perception (TRIRISK): distinguishing deliberative, affective, and experiential components of perceived risk. Ann Behav Med. 2016;50:653–63. (PMID: 2696120610.1007/s12160-016-9790-z)
Brentnall AR, Cohn WF, Knaus WA, Yaffe MJ, Cuzick J, Harvey JA. A case-control study to add volumetric or clinical mammographic density into the Tyrer-Cuzick breast cancer risk model. J Breast Imaging. 2019;1:99–106. (PMID: 31423486669042210.1093/jbi/wbz006)
Brentnall AR, Harkness EF, Astley SM, Donnelly LS, Stavrinos P, Sampson S, et al. Mammographic density adds accuracy to both the Tyrer-Cuzick and Gail breast cancer risk models in a prospective UK screening cohort. Breast Cancer Res. 2015;17:147. (PMID: 26627479466588610.1186/s13058-015-0653-5)
Choudhury PP, Brook MN, Hurson AN, Lee A, Mulder CV, Coulson P, et al. Comparative validation of the BOADICEA and Tyrer-Cuzick breast cancer risk models incorporating classical risk factors and polygenic risk in a population-based prospective cohort of women of European ancestry. Breast Cancer Res. 2021;23:1–5.
Lee A, Mavaddat N, Wilcox AN, Cunningham AP, Carver T, Hartley S, et al. BOADICEA: a comprehensive breast cancer risk prediction model incorporating genetic and nongenetic risk factors. Genet Med. 2019;21:1708–18. (PMID: 30643217668749910.1038/s41436-018-0406-9)
van Veen EM, Brentnall AR, Byers H, Harkness EF, Astley SM, Sampson S, et al. Use of single-nucleotide polymorphisms and mammographic density plus classic risk factors for breast cancer risk prediction. JAMA Oncol. 2018;4:476–82. (PMID: 29346471588518910.1001/jamaoncol.2017.4881)
تواريخ الأحداث: Date Created: 20220824 Date Completed: 20221124 Latest Revision: 20230301
رمز التحديث: 20240628
مُعرف محوري في PubMed: PMC9681857
DOI: 10.1038/s41416-022-01944-x
PMID: 36002751
قاعدة البيانات: MEDLINE
الوصف
تدمد:1532-1827
DOI:10.1038/s41416-022-01944-x