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1.
BMJ Open ; 14(6): e076876, 2024 Jun 13.
Article in English | MEDLINE | ID: mdl-38871662

ABSTRACT

OBJECTIVES: Women who inherit a pathogenic BRCA1 or BRCA2 mutation are at substantially higher risk of developing breast and ovarian cancer than average. Several cancer risk management strategies exist to address this increased risk. Decisions about which strategies to choose are complex, personal and multifactorial for these women. Decision aids (DAs) are tools that assist patients in making health-related decisions. The aim of this scoping review was to map evidence relating to the development and testing of patient DAs for cancer unaffected BRCA mutation carriers. DESIGN: Scoping review conducted according to the Joanna Briggs Institute's (JBI's) scoping review methodological framework. DATA SOURCES: MEDLINE, EMBASE, CINAHL, Web of Science. No restrictions applied for language or publication date. A manual search was also performed. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Studies on DAs for cancer risk management designed for or applicable to women with a pathogenic BRCA1 or BRCA2 mutation who are unaffected by breast or ovarian cancer. DATA EXTRACTION AND SYNTHESIS: Data were extracted using a form based on the JBI instrument for extracting details of studies' characteristics and results. Data extraction was performed independently by two reviewers. Extracted data were tabulated. RESULTS: 32 evidence sources relating to development or testing of 21 DAs were included. Four DAs were developed exclusively for cancer unaffected BRCA mutation carriers. Of these, two covered all guideline recommended risk management strategies for this population though only one of these was readily available publicly in its full version. All studies investigating DA effectiveness reported a positive effect of the DA under investigation on at least one of the outcomes evaluated, however only six DAs were tested in randomised controlled trials. CONCLUSION: This scoping review has mapped the landscape of the literature relating to developing and testing, DAs applicable to cancer unaffected BRCA mutation carriers.


Subject(s)
Breast Neoplasms , Decision Support Techniques , Mutation , Ovarian Neoplasms , Humans , Female , Ovarian Neoplasms/genetics , Breast Neoplasms/genetics , BRCA2 Protein/genetics , Heterozygote , Genetic Predisposition to Disease , Decision Making , BRCA1 Protein/genetics , Genes, BRCA2 , Genes, BRCA1
2.
BMJ Open ; 11(7): e045075, 2021 07 12.
Article in English | MEDLINE | ID: mdl-34253662

ABSTRACT

INTRODUCTION: Women who inherit a pathogenic mutation in Breast Cancer Susceptibility Genes 1 or 2 (BRCA1 or BRCA2) are at substantially higher risk of developing breast and ovarian cancer than the average woman. Several cancer risk management strategies exist to address this increased risk. Decisions about which risk management strategies to choose are complex, personal and multifactorial for these women. This scoping review will map evidence relevant to cancer risk management decision making in BRCA mutation carriers without a personal history of cancer. The objective is to identify and describe the features of patient decision aids that have been developed for BRCA mutation carriers. This information may be beneficial for designing new decision aids or adapting existing decision aids to support decision making in this population. METHODS AND ANALYSIS: This scoping review will be conducted according to the Joanna Briggs Institute's scoping review methodological framework. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist will be used for guidance. Studies on decision aids for women with a BRCA mutation who are unaffected by breast or ovarian cancer will be considered for inclusion. Five electronic databases will be searched (MEDLINE, EMBASE, Cochrane Library, CINAHL, Web of Science) with no restrictions applied for language or publication date. Studies for inclusion will be selected independently by two review authors. Data will be extracted using a predefined data extraction form. Findings will be presented in tabular form. A narrative description of the evidence will complement the tabulated results. ETHICS AND DISSEMINATION: Ethical approval for conducting this scoping review is not required as this study will involve secondary analysis of existing literature. Findings will be published in a peer-reviewed journal and presented at relevant conferences.


Subject(s)
Genes, BRCA2 , Ovarian Neoplasms , Decision Support Techniques , Female , Genes, BRCA1 , Humans , Mutation , Ovarian Neoplasms/genetics , Research Design , Review Literature as Topic , Systematic Reviews as Topic
3.
J Plast Reconstr Aesthet Surg ; 69(9): 1248-53, 2016 Sep.
Article in English | MEDLINE | ID: mdl-27406254

ABSTRACT

BACKGROUND: Patient reported outcomes are increasingly being taken into account in planning health service provision. Few studies have examined how the process of care influences patients' perception of outcome. The aim of the current study was to quantify patient satisfaction with breast reconstruction and to examine the demographic, disease and process-of-care variables that contributed to satisfaction with breasts and overall outcome. METHODS: A cross-sectional study was designed and the BREAST-Q outcomes assessment instrument was used to evaluate patient-reported psychosocial, physical and sexual well-being, as well as satisfaction with breasts, overall outcome and process of care. To identify factors predictive of satisfaction with breasts and overall outcome, the relation between covariates and each of these scales was assessed using linear regression models. RESULTS: Sixty one patients, with a mean age of 50 years, completed the survey. Mean satisfaction with breasts was 59.6% and satisfaction with overall outcome was 73.2%. Satisfaction across health-related quality of life scales ranged from 44.6% for sexual well-being to 74.6% for physical well-being. The mean rating for psychosocial well-being was 67.9%. Satisfaction ratings for surgeon, medical staff and office staff were all over 90%. Satisfaction with plastic surgeon was predictive of satisfaction with outcome and satisfaction with breasts (P = 0.001 and 0.021 respectively). DISCUSSION: The surgeon-patient relationship significantly influences patient reported outcomes in breast reconstruction. Further service development must recognize the need for additional time and personnel to deliver high standard, patient-centered care.


Subject(s)
Breast Neoplasms/surgery , Mammaplasty/psychology , Outcome Assessment, Health Care , Patient Reported Outcome Measures , Patient Satisfaction , Physician-Patient Relations , Quality of Life , Adult , Aged , Cross-Sectional Studies , Female , Humans , Middle Aged , Surveys and Questionnaires
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