| Literature DB >> 25341112 |
Robin H Juthe1, Amber Zaharchuk2, Catharine Wang3.
Abstract
PURPOSE: On 14 May 2013, actress Angelina Jolie disclosed that she had a BRCA1 mutation and underwent a prophylactic bilateral mastectomy. This study documents the impact of her disclosure on information-seeking behavior, specifically that regarding online genetics and risk reduction resources available from the National Cancer Institute.Entities:
Mesh:
Year: 2014 PMID: 25341112 PMCID: PMC4408206 DOI: 10.1038/gim.2014.141
Source DB: PubMed Journal: Genet Med ISSN: 1098-3600 Impact factor: 8.822
National Cancer Institute (NCI) Resources
| Title | Resource Type | Audience |
|---|---|---|
| | Fact sheet | Public |
| | Fact sheet | Public |
| | Fact sheet | Public |
| PDQ®
| PDQ® summary | Health professionals |
| | Directory of genetics professionals | Public |
| | Fact sheet | Public |
| PDQ®
| PDQ® summary | Health professionals |
| PDQ®
| PDQ® summary | Health professionals |
| PDQ®
| PDQ® summary | Health professionals |
| PDQ®
| PDQ® summary | Health professionals |
| PDQ®
| PDQ® summary | Health professionals |
Fact sheets are Web documents that provide information on cancer topics in a question-and-answer format for the public. Fact sheets are developed by NCI science writers and edited and approved by NCI experts in each topic. The fact sheet collection can be accessed at the following URL: http://www.cancer.gov/cancertopics/factsheet.
The Preventive Mastectomy fact sheet was renamed Surgery to Reduce the Risk of Breast Cancer in October 2013.
Physician Data Query (PDQ are evidence-based summaries written for health professionals about risk assessment, screening, and treatment of inherited cancer syndromes and topics related to genetic testing, genetic counseling, and psychosocial factors. The summaries are written and updated by expert members of the PDQ® Cancer Genetics Editorial Board, which is editorially independent of NCI. The PDQ® cancer genetics summaries can be accessed at the following URL: http://www.cancer.gov/cancertopics/pdq/genetics.
The Cancer Genetics Services Directory is an online listing of individuals who provide genetic services including cancer risk assessment, genetic counseling, and genetic susceptibility testing. This directory is provided for the public. To be included in the directory, individuals must be licensed, board certified, or board eligible in their profession and meet other specific criteria. The Cancer Genetics Services Directory can be accessed at the following URL: http://www.cancer.gov/cancertopics/genetics/directory.
Daily Page Views of NCI’s Cancer Information Resources, April–June 2013
| 23-Apr | 30-Apr | 7-May | 14-May | 21-May | 28-May | 4-Jun | 11-Jun | 18-Jun | 25-Jun | |
|---|---|---|---|---|---|---|---|---|---|---|
| | ||||||||||
| | 1 880 | 2 229 | 1 787 | 4 694 | 3 250 | 2 446 | 1 915 | 1 956 | 1 836 | |
| | 103 | 118 | 106 | 204 | 143 | 172 | 131 | 159 | 180 | |
| | 93 | 110 | 87 | 1 046 | 452 | 278 | 206 | 216 | 131 | |
| | ||||||||||
| | 121 | 103 | 83 | 176 | 94 | 81 | 135 | 88 | 171 | |
| | 59 | 65 | 67 | 126 | 214 | 78 | 91 | 113 | 98 | |
| | ||||||||||
| PDQ®
| 302 | 293 | 257 | 403 | 409 | 329 | 368 | 306 | 302 | |
| | ||||||||||
| PDQ®
| 59 | 60 | 63 | 101 | 82 | 71 | 54 | 66 | 64 | |
| PDQ®
| 97 | 110 | 44 | 67 | 93 | 76 | 40 | 49 | 65 | |
| PDQ®
| 326 | 224 | 322 | 305 | 274 | 243 | 236 | 249 | 193 | |
| PDQ®
| 118 | 76 | 120 | 112 | 93 | 82 | 106 | 87 | 78 | |
| PDQ®
| 244 | 175 | 189 | 283 | 272 | 211 | 163 | 166 | 151 |
Angelina Jolie’s op-ed, My Medical Choice, was published in The New York Times.
Figure 1Monthly page views of NCI’s breast cancer resources from January 2012 through December 2013, including the (a) Preventive Mastectomy fact sheet for the public; (b) BRCA1 & BRCA2: Cancer Risk and Genetic Testing fact sheet for the public; and (c) Physician Data Query (PDQ®) Genetics of Breast and Ovarian Cancer summary for health professionals. These trends reveal the magnitude of the increase in page views during May 2013, when Jolie’s op-ed was published.
Referralsa to NCI’s Breast Cancer Resourcesb, April–June 2013
| 23-Apr | 30-Apr | 7-May | 14-May | 21-May | 28-May | 4-Jun | 11-Jun | 18-Jun | 25-Jun | |
|---|---|---|---|---|---|---|---|---|---|---|
| 1 751 (83%) | 1 872 (75%) | 1 691 (84%) | 3 874 (67%) | 2 705 (70%) | 2 157 (74%) | 1 762 (76%) | 1 877 (79%) | 1 715 (78%) | ||
| 1(0%) | 266(11%) | 8(0%) | 624(11%) | 257(7%) | 138(5%) | 76(3%) | 81(3%) | 27(1%) | ||
| 367(17%) | 375(15%) | 319(16%) | 1 324 (23%) | 898(23%) | 617(21%) | 471(20%) | 433(18%) | 457(21%) | ||
Referral data were captured and reported for viewers who came to NCI’s breast cancer resources from sources other than NCI’s main website, www.cancer.gov.
Preventive Mastectomy fact sheet, BRCA1 & BRCA2: Cancer Risk and Genetic Testing fact sheet, Breast Reconstruction After Mastectomy fact sheet, PDQ® Genetics of Breast and Ovarian Cancer summary
Angelina Jolie’s op-ed, My Medical Choice, was published in The New York Times.
News outlets include the following: The New York Times, China Times, CNN, Forbes, PBS, US News & World Report, NPR, Chicago Tribune, Washington Post, MSN, National Geographic, Global Post, Fox, Sun-Sentinel, The Oregonian, Business insider, The Guardian, Natural Health News, Times of Israel, CBS News, USA Today, NBC News, The Guardian, Huffington Post, LA Times, Bloomberg News, People, Jezebel, Wet Paint, The Blaze, The Examiner, Boston Magazine, The Wire, and Extra.
Other referral sources include other NCI websites, typed URLs, bookmarked links, and other websites.
Figure 2Referral sources to NCI’s breast cancer resources from April 23, 2013 through June 25, 2013, including three fact sheets for the public (Preventive Mastectomy, BRCA1 & BRCA2: Cancer Risk and Genetic Testing, and Breast Reconstruction After Mastectomy) and one summary for health professionals (Physician Data Query [PDQ®] Genetics of Breast and Ovarian). Websites of news outlets account for a large portion of the referrals to NCI’s Preventive Mastectomy fact sheet on May 14, 2013.