{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T15:40:36Z","timestamp":1785512436504,"version":"3.56.0"},"reference-count":44,"publisher":"Elsevier BV","issue":"4","license":[{"start":{"date-parts":[[2023,4,1]],"date-time":"2023-04-01T00:00:00Z","timestamp":1680307200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2023,4,1]],"date-time":"2023-04-01T00:00:00Z","timestamp":1680307200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2022,12,19]],"date-time":"2022-12-19T00:00:00Z","timestamp":1671408000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["gimjournal.org","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Genetics in Medicine"],"published-print":{"date-parts":[[2023,4]]},"DOI":"10.1016\/j.gim.2022.100001","type":"journal-article","created":{"date-parts":[[2022,12,19]],"date-time":"2022-12-19T11:37:32Z","timestamp":1671449852000},"page":"100001","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":17,"title":["Informational needs of individuals from families harboring BRCA pathogenic variants: A systematic review and content analysis"],"prefix":"10.1016","volume":"25","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3560-8369","authenticated-orcid":false,"given":"Sun Young","family":"Park","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yoonjoo","family":"Kim","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sue","family":"Kim","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3903-3750","authenticated-orcid":false,"given":"Maria C.","family":"Katapodi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"key":"10.1016\/j.gim.2022.100001_bib1","unstructured":"Petrucelli N, Daly MB. Pal T. BRCA1- and BRCA2-associated hereditary breast and ovarian cancer. In: Adam MP, Ardinger HH, Mirzaa GM, et\u00a0al, eds. Gene Reviews [Internet]. University of Washington; 1993-2022."},{"issue":"5","key":"10.1016\/j.gim.2022.100001_bib2","doi-asserted-by":"crossref","first-page":"454","DOI":"10.1056\/NEJMra1503523","article-title":"The role of risk-reducing surgery in hereditary breast and ovarian cancer","volume":"374","author":"Hartmann","year":"2016","journal-title":"N\u00a0Engl J Med"},{"issue":"1","key":"10.1016\/j.gim.2022.100001_bib3","doi-asserted-by":"crossref","first-page":"24","DOI":"10.1016\/j.eururo.2019.08.025","article-title":"Prostate cancer risks for male BRCA1 and BRCA2 mutation carriers: a prospective cohort study","volume":"77","author":"Nyberg","year":"2020","journal-title":"Eur Urol"},{"issue":"24","key":"10.1016\/j.gim.2022.100001_bib4","doi-asserted-by":"crossref","first-page":"2311","DOI":"10.1056\/NEJMra1707939","article-title":"Breast cancer in men","volume":"378","author":"Giordano","year":"2018","journal-title":"N\u00a0Engl J Med"},{"key":"10.1016\/j.gim.2022.100001_bib5","doi-asserted-by":"crossref","first-page":"22","DOI":"10.1186\/s13053-020-00154-x","article-title":"An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia","volume":"18","author":"Yuen","year":"2020","journal-title":"Hered Cancer Clin Pract"},{"issue":"6","key":"10.1016\/j.gim.2022.100001_bib6","doi-asserted-by":"crossref","first-page":"1154","DOI":"10.1002\/jgc4.1167","article-title":"Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?","volume":"28","author":"Young","year":"2019","journal-title":"J\u00a0Genet Couns"},{"issue":"2","key":"10.1016\/j.gim.2022.100001_bib7","doi-asserted-by":"crossref","first-page":"178","DOI":"10.3109\/0284186X.2015.1049292","article-title":"Peer support and additional information in group medical consultations (GMCs) for BRCA1\/2 mutation carriers: a randomized controlled trial","volume":"55","author":"Visser","year":"2016","journal-title":"Acta Oncol"},{"issue":"6","key":"10.1016\/j.gim.2022.100001_bib8","doi-asserted-by":"crossref","first-page":"1494","DOI":"10.1086\/316907","article-title":"Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling","volume":"67","author":"Liede","year":"2000","journal-title":"Am J Hum Genet"},{"issue":"2","key":"10.1016\/j.gim.2022.100001_bib9","doi-asserted-by":"crossref","first-page":"122","DOI":"10.1080\/10410236.2016.1250187","article-title":"Previvors\u2019 uncertainty management strategies for hereditary breast and ovarian cancer","volume":"33","author":"Dean","year":"2018","journal-title":"Health Commun"},{"issue":"3","key":"10.1016\/j.gim.2022.100001_bib10","first-page":"313","article-title":"Concerns and expectations of risk-reducing surgery in women with hereditary breast and ovarian cancer syndrome","volume":"8","author":"Modaffari","year":"2019","journal-title":"J\u00a0Clin Med"},{"issue":"3","key":"10.1016\/j.gim.2022.100001_bib11","doi-asserted-by":"crossref","first-page":"383","DOI":"10.1016\/j.pec.2016.10.008","article-title":"The information needs of adult cancer survivors across the cancer continuum: a scoping review","volume":"100","author":"Fletcher","year":"2017","journal-title":"Patient Educ Couns"},{"issue":"9","key":"10.1016\/j.gim.2022.100001_bib12","doi-asserted-by":"crossref","first-page":"1738","DOI":"10.1016\/j.pec.2017.03.013","article-title":"\u2018When information is not enough\u2019: A model for understanding BRCA-positive previvors\u2019 information needs regarding hereditary breast and ovarian cancer risk","volume":"100","author":"Dean","year":"2017","journal-title":"Patient Educ Couns"},{"issue":"1","key":"10.1016\/j.gim.2022.100001_bib13","doi-asserted-by":"crossref","first-page":"72","DOI":"10.1007\/s13187-019-01599-y","article-title":"The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1\/2-positive families","volume":"36","author":"Peshkin","year":"2021","journal-title":"J\u00a0Cancer Educ"},{"issue":"6","key":"10.1016\/j.gim.2022.100001_bib14","doi-asserted-by":"crossref","first-page":"1417","DOI":"10.1007\/s10897-018-0276-y","article-title":"\u2018I Am Uncertain About What My Uncertainty Even Is\u2019: men\u2019s uncertainty and information management of their BRCA-related cancer risks","volume":"27","author":"Rauscher","year":"2018","journal-title":"J\u00a0Genet Couns"},{"key":"10.1016\/j.gim.2022.100001_bib15","doi-asserted-by":"crossref","first-page":"38","DOI":"10.1016\/j.breast.2021.08.011","article-title":"Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1\/2 or PALB2 pathogenic variant","volume":"60","author":"Br\u00e9dart","year":"2021","journal-title":"Breast"},{"issue":"11","key":"10.1016\/j.gim.2022.100001_bib16","doi-asserted-by":"crossref","first-page":"1818","DOI":"10.1002\/pon.4379","article-title":"Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users","volume":"26","author":"Jacobs","year":"2017","journal-title":"Psychooncology"},{"issue":"11","key":"10.1016\/j.gim.2022.100001_bib17","doi-asserted-by":"crossref","first-page":"866","DOI":"10.1136\/jmg.37.11.866","article-title":"An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling","volume":"37","author":"Metcalfe","year":"2000","journal-title":"J\u00a0Med Genet"},{"issue":"1","key":"10.1016\/j.gim.2022.100001_bib18","doi-asserted-by":"crossref","first-page":"21","DOI":"10.1007\/s10689-021-00232-6","article-title":"The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study","volume":"21","author":"Sa\u2019at","year":"2022","journal-title":"Fam Cancer"},{"issue":"1","key":"10.1016\/j.gim.2022.100001_bib19","doi-asserted-by":"crossref","first-page":"180","DOI":"10.1186\/s12911-021-01528-4","article-title":"Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making","volume":"21","author":"Kautz-Freimuth","year":"2021","journal-title":"BMC Med Inform Decis Mak"},{"issue":"3","key":"10.1016\/j.gim.2022.100001_bib20","doi-asserted-by":"crossref","first-page":"294","DOI":"10.1007\/s10897-011-9350-4","article-title":"Development and evaluation of a decision aid for BRCA carriers with breast cancer","volume":"20","author":"Culver","year":"2011","journal-title":"J\u00a0Genet Couns"},{"issue":"4","key":"10.1016\/j.gim.2022.100001_bib21","doi-asserted-by":"crossref","first-page":"992","DOI":"10.1177\/1460458215602939","article-title":"Health information needs, sources, and barriers of primary care patients to achieve patient-centered care: a literature review","volume":"22","author":"Clarke","year":"2016","journal-title":"Health Informatics J"},{"key":"10.1016\/j.gim.2022.100001_bib22","doi-asserted-by":"crossref","first-page":"n71","DOI":"10.1136\/bmj.n71","article-title":"The PRISMA 2020 statement: an updated guideline for reporting systematic reviews","volume":"372","author":"Page","year":"2021","journal-title":"BMJ"},{"issue":"3","key":"10.1016\/j.gim.2022.100001_bib23","doi-asserted-by":"crossref","first-page":"246","DOI":"10.1002\/1098-240X(200006)23:3<246::AID-NUR9>3.0.CO;2-H","article-title":"Combining qualitative and quantitative sampling, data collection, and analysis techniques in mixed-method studies","volume":"23","author":"Sandelowski","year":"2000","journal-title":"Res Nurs Health"},{"issue":"3","key":"10.1016\/j.gim.2022.100001_bib24","doi-asserted-by":"crossref","first-page":"240","DOI":"10.3163\/1536-5050.104.3.014","article-title":"De-duplication of database search results for systematic reviews in EndNote","volume":"104","author":"Bramer","year":"2016","journal-title":"J\u00a0Med Libr Assoc"},{"issue":"1","key":"10.1016\/j.gim.2022.100001_bib25","doi-asserted-by":"crossref","first-page":"210","DOI":"10.1186\/s13643-016-0384-4","article-title":"Rayyan-a web and mobile app for systematic reviews","volume":"5","author":"Ouzzani","year":"2016","journal-title":"Syst Rev"},{"issue":"4","key":"10.1016\/j.gim.2022.100001_bib26","first-page":"285","article-title":"The Mixed Methods Appraisal Tool (MMAT) version 2018 for information professionals and researchers","volume":"34","author":"Hong","year":"2018","journal-title":"Educ Inf"},{"issue":"3","key":"10.1016\/j.gim.2022.100001_bib27","doi-asserted-by":"crossref","first-page":"121","DOI":"10.1097\/XEB.0000000000000052","article-title":"A\u00a0mixed-methods approach to systematic reviews","volume":"13","author":"Pearson","year":"2015","journal-title":"Int J Evid Based Healthc"},{"issue":"1","key":"10.1016\/j.gim.2022.100001_bib28","doi-asserted-by":"crossref","first-page":"107","DOI":"10.1111\/j.1365-2648.2007.04569.x","article-title":"The qualitative content analysis process","volume":"62","author":"Elo","year":"2008","journal-title":"J\u00a0Adv Nurs"},{"issue":"9","key":"10.1016\/j.gim.2022.100001_bib29","doi-asserted-by":"crossref","first-page":"1277","DOI":"10.1177\/1049732305276687","article-title":"Three approaches to qualitative content analysis","volume":"15","author":"Hsieh","year":"2005","journal-title":"Qual Health Res"},{"issue":"3","key":"10.1016\/j.gim.2022.100001_bib30","doi-asserted-by":"crossref","first-page":"E33","DOI":"10.1097\/NCC.0b013e3182642cb5","article-title":"Understanding the needs of women considering risk-reducing salpingo-oophorectomy","volume":"36","author":"Cherry","year":"2013","journal-title":"Cancer Nurs"},{"issue":"3","key":"10.1016\/j.gim.2022.100001_bib31","doi-asserted-by":"crossref","first-page":"467","DOI":"10.1007\/s13187-012-0373-9","article-title":"Closing the loop: action research in a multimodal hereditary cancer patient conference is an effective tool to assess and address patient needs","volume":"27","author":"Espenschied","year":"2012","journal-title":"J\u00a0Cancer Educ"},{"issue":"1","key":"10.1016\/j.gim.2022.100001_bib32","doi-asserted-by":"crossref","first-page":"79","DOI":"10.1007\/s10689-010-9384-z","article-title":"What I wish I\u2019d known before surgery: BRCA carriers\u2019 perspectives after bilateral salipingo-oophorectomy","volume":"10","author":"Campfield Bonadies","year":"2011","journal-title":"Fam Cancer"},{"issue":"24","key":"10.1016\/j.gim.2022.100001_bib33","doi-asserted-by":"crossref","first-page":"6270","DOI":"10.1002\/cncr.27695","article-title":"Incorporating information regarding preimplantation genetic diagnosis into discussions concerning testing and risk management for BRCA1\/2 mutations: a qualitative study of patient preferences","volume":"118","author":"Hurley","year":"2012","journal-title":"Cancer"},{"issue":"1","key":"10.1016\/j.gim.2022.100001_bib34","doi-asserted-by":"crossref","first-page":"407","DOI":"10.1186\/s12913-015-1076-9","article-title":"Studies analysing the need for health-related information in Germany\u2212a systematic review","volume":"15","author":"Pieper","year":"2015","journal-title":"BMC Health Serv Res"},{"issue":"2","key":"10.1016\/j.gim.2022.100001_bib35","doi-asserted-by":"crossref","first-page":"319","DOI":"10.3390\/ijerph15020319","article-title":"Patient-centered care in breast cancer genetic clinics","volume":"15","author":"Br\u00e9dart","year":"2018","journal-title":"Int J Environ Res Public Health"},{"issue":"2","key":"10.1016\/j.gim.2022.100001_bib36","doi-asserted-by":"crossref","first-page":"342","DOI":"10.1002\/jgc4.1374","article-title":"Risk assessment and genetic counseling for hereditary breast and ovarian cancer syndromes-practice resource of the National Society of Genetic Counselors","volume":"30","author":"Berliner","year":"2021","journal-title":"J\u00a0Genet Couns"},{"key":"10.1016\/j.gim.2022.100001_bib37","doi-asserted-by":"crossref","first-page":"2321","DOI":"10.2147\/CMAR.S189627","article-title":"A\u00a0systematic review of international guidelines and recommendations for the genetic screening, diagnosis, genetic counseling, and treatment of BRCA-mutated breast cancer","volume":"11","author":"Forbes","year":"2019","journal-title":"Cancer Manag Res"},{"issue":"8","key":"10.1016\/j.gim.2022.100001_bib38","doi-asserted-by":"crossref","first-page":"1630","DOI":"10.1016\/j.gim.2022.04.009","article-title":"Health equity in the implementation of genomics and precision medicine: a public health imperative","volume":"24","author":"Khoury","year":"2022","journal-title":"Genet Med"},{"issue":"1","key":"10.1016\/j.gim.2022.100001_bib39","doi-asserted-by":"crossref","first-page":"77","DOI":"10.6004\/jnccn.2021.0001","article-title":"Genetic\/familial high-risk assessment: breast, ovarian, and pancreatic, version 2.2021, NCCN clinical practice guidelines in oncology","volume":"19","author":"Daly","year":"2021","journal-title":"J\u00a0Natl Compr Canc Netw"},{"issue":"5","key":"10.1016\/j.gim.2022.100001_bib40","doi-asserted-by":"crossref","first-page":"1111","DOI":"10.1007\/s10897-018-0230-z","article-title":"Operationalizing the reciprocal engagement model of genetic counseling practice: a framework for the scalable delivery of genomic counseling and testing","volume":"27","author":"Schmidlen","year":"2018","journal-title":"J\u00a0Genet Couns"},{"issue":"11","key":"10.1016\/j.gim.2022.100001_bib41","doi-asserted-by":"crossref","first-page":"2018","DOI":"10.1093\/tbm\/ibab089","article-title":"Multiple approaches to enhancing cancer communication in the next decade: translating research into practice and policy","volume":"11","author":"Conley","year":"2021","journal-title":"Transl Behav Med"},{"issue":"5","key":"10.1016\/j.gim.2022.100001_bib42","doi-asserted-by":"crossref","first-page":"1090","DOI":"10.1007\/s10897-017-0089-4","article-title":"Information mismatch: cancer risk counseling with diverse underserved patients","volume":"26","author":"Joseph","year":"2017","journal-title":"J\u00a0Genet Couns"},{"issue":"11","key":"10.1016\/j.gim.2022.100001_bib43","doi-asserted-by":"crossref","first-page":"1021","DOI":"10.1158\/1940-6207.CAPR-20-0642","article-title":"Novel models of genetic education and testing for pancreatic cancer interception: preliminary results from the GENERATE Study","volume":"14","author":"Furniss","year":"2021","journal-title":"Cancer Prev Res (Phila)"},{"issue":"9","key":"10.1016\/j.gim.2022.100001_bib44","doi-asserted-by":"crossref","first-page":"1141","DOI":"10.1089\/tmj.2019.0144","article-title":"Assessment of the intention to use mobile health applications using a technology acceptance model in an Israeli adult population","volume":"26","author":"Shemesh","year":"2020","journal-title":"Telemed J E Health"}],"container-title":["Genetics in Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1098360022010681?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1098360022010681?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,10,22]],"date-time":"2025-10-22T01:55:24Z","timestamp":1761098124000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S1098360022010681"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,4]]},"references-count":44,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2023,4]]}},"alternative-id":["S1098360022010681"],"URL":"https:\/\/doi.org\/10.1016\/j.gim.2022.100001","relation":{},"ISSN":["1098-3600"],"issn-type":[{"value":"1098-3600","type":"print"}],"subject":[],"published":{"date-parts":[[2023,4]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Informational needs of individuals from families harboring BRCA pathogenic variants: A systematic review and content analysis","name":"articletitle","label":"Article Title"},{"value":"Genetics in Medicine","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.gim.2022.100001","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2022 Published by Elsevier Inc. on behalf of American College of Medical Genetics and Genomics.","name":"copyright","label":"Copyright"}],"article-number":"100001"}}