6/9/2017 M ANDATORY B REAST D ENSITY D ISCLOSURES AND R EPORTING : P ATIENT A CKNOWLEDGEMENTS U NDERSTANDING AND E FFECTS ON � I have no disclosures to report M AMMOGRAPHY S CREENING , R ISK � Robert Wood Johnson Foundation Health and P ERCEPTION AND W ORRY Society Scholars Seed Grant � Co-Investigators � Rulla M. Tamimi, BWH � Andy S. Tan, DFCI � Robyn Birdwell, BWH (retired) Erica T. Warner, ScD MPH � DFCI Survey Data Management Core Massachusetts General Hospital � Nora Sporn Harvard Medical School � Anna Revette 8 th International Breast Densitometry and � Participant Recruitment Breast Cancer Risk Workshop � Madeline Schuck June 8, 2017 M ASSACHUSETTS L AW � Effective January 1, 2015 � Requires written notification after a mammogram regarding: � Whether and to what degree dense breast tissue was PINK : Enacted identified on their mammogram Law RED : Introduced � Dense breast tissue is common and not abnormal Bill � Dense breasts may increase breast cancer risk and may BLUE : In Progress make it more difficult to identify breast cancer on a WHITE : No mammogram Action BLACK : � Women with dense breasts may need additional screening Insurance Coverage Law tests and they should discuss results with their physician � Direction to resources for additional information on dense breast tissue From: http://www.areyoudenseadvocacy.org/dense/ 1
6/9/2017 R ATIONALE S TUDY A IMS � Known difficulties understanding mammography reports and � Aim 1: Using qualitative methods, assess women’s beliefs and knowledge about breast abnormal results density, comprehension of mammography � Evidence from other states reports, and their interactions with health professionals regarding breast density � Reports from local radiologists of patients misunderstanding the term � Aim 2 : Evaluate the effect of breast density “dense” to mean “stupid” notification on breast cancer screening, perceived breast cancer risk, and worry S TUDY P OPULATION AND E LIGIBILITY C RITERIA I NTERVIEW G UIDE � Boston Mammography Cohort Study (BMCS) � Mammography beliefs, breast cancer risk factor � 2787 women receiving routine screening mammograms at awareness and risk perception Brigham and Women’s or Massachusetts General Hospital � Purpose of mammograms, who gets them, personal � Eligibility criteria for qualitative density notification study motivations � Highest category of Volpara density grade (VDG) � Breast density knowledge and awareness � No personal history of breast cancer � What is breast density, how did they learn about density, � Had a mammogram at Brigham and Women’s since Jan 1, 2015 have they talked about density with a healthcare provider � English speaking � Mammogram report review � Semi-structured phone interviews with 20 women � Comprehension, readability, need for more information � 60 minutes or less � Intentions for future screening � Density debriefing Review fact sheet from Susan G. Komen Foundation � 2
6/9/2017 R ESULTS : D EFINITION OF D ENSITY R ESULTS : P ARTICIPANT C HARACTERISTICS � Most women defined density as related to Characteristic Mean SD breast tissue composition Age 59.7 8.3 � Masking Age at first birth 31.2 6.7 � The majority of the participants (17) BMI 24.2 4.6 N % expressed some degree of doubt about Race their definition White 15 75% � Unsure or guessing about the definitions they Black or African-American 5 25% provided Family history of breast cancer 5 25% � One participant had not heard of breast Ashkenazi Jewish heritage 2 10% density before Nulliparous 5 25% Age at Menarche ≤12 4 20% R ESULTS : D EFINITION OF D ENSITY R ESULTS : I NTERACTIONS WITH H EALTHCARE PROVIDERS � “I think it’s just like fatty tissue or something � Nine participants had spoken with their doctor or that makes it difficult to see , um... through other healthcare professional about breast the thick tissue?” density Seven specified that they had spoken with a breast � � “Um, um, well, there’s a lot of tissue in there, technician and if it’s a lot of dense tissue, and it’s harder, � Eight participants had not spoken with their there could be hidden, um, cancers behind the tissue that they can’t see everything … is doctor about breast density one thing, and, um, I just have dense breasts, � Three participants could not remember if they dense tissue in my breasts.” had spoken with anyone about breast density 3
6/9/2017 R ESULTS : I NTERACTIONS WITH R ESULTS : I NTERACTIONS WITH H EALTHCARE PROVIDERS H EALTHCARE PROVIDERS � “Through the series of mammograms that I’ve � “You know, this is something that they had, it was always mentioned … They almost SHOULD go over with you, be telling you always mention it. Not just … It wasn’t just that, you know, “These are the things that mentioned when I had the biopsy, it’s you need to...” that we’re talking about. I mentioned, you know, usually almost every know... I know my doctor didn’t go over time that I get a mammogram . it with me. ” � Interviewer: Is this by the radiologist who completes the mammogram, who talks to you about it? � ”You don’t ever see the radiologist. Have you had one of these lately? … the technician, a well- trained excellent technician . The radiologist then reviews it and you meet with the radiologist, I guess, if you have something.” R ESULTS : N OTIFICATION A WARENESS R ESULTS : A WARENESS AND E FFECTS OF N OTIFICATION � Eleven participants said they had been notified � “ You don’t get notification . They’re doing it about having dense breasts [the mammogram] and they tell you [about breast density]. I don’t know – I mean, you � Two were aware of the state law don’t sound like you’ve been for a mammography � Participants’ feelings about breast density lately. [ Participant then finds the letter she notification largely fit into three main categories received after her last mammogram ] “You should � No significant feelings about it be calling the people who get it to see what they � Concern or stress about the notification think. Oh, here, I’ve got something in my folder � Increased awareness or appreciation of breast screening called breast density information for patients, mammogram bill of rights, I don’t even read that stuff .” 4
6/9/2017 R ESULTS : E FFECTS OF N OTIFICATION R ESULTS : N OTIFICATION A WARENESS � “... I know I have dense breasts, just � “ Um, hm, well, at first it was like, it was because I think a letter I get every year like, “Oh.” And then, um, I mean, it doesn’t, SAYS that I do…But, no one’s ever talked to it doesn’t bother me. It didn’t make me feel, me about it … Yeah, like for, I’ve been going to it didn’t really make me feel one way or the Brigham for maybe five years? And, you the other. Just knowledge, you know .” know, they usually just send a letter saying “everything is fine,” and on that letter it says, like, it has a whole big thing it says about breast density, but ... I know it says that I have dense breasts. And, that’s, that’s the only place I ever remember seeing anything about it. ” R ESULTS : E FFECTS OF N OTIFICATION � “…And just learning, on top of the previous concerns, learning that, “ Yes, you DO have dense breasts, and that can be, one of these risk factors.” I wouldn’t say the, it’s exclusively having dense breasts? It’s that, alongside of the other things that we’ve been talking about, that only makes you more, um, affirmed in your, wanting to have this [mammogram] done every year .” 5
6/9/2017 R ESULTS : M AMMOGRAM R EPORT F EEDBACK � Women were generally pretty positive about the layout, amount of information and readability of the report � Among the women that provided critiques common responses were: � Too much technical jargon � Needs section headings � Density notification too far down the page—easy to miss � Even split between too much/too little information R ESULTS : U SE OF S UPPLEMENTAL R ESULTS : M AMMOGRAM R EPORT S CREENING F EEDBACK � 15 were familiar with supplemental screening � “Um, so you go back to the first page where options you say negative or benign findings, if you � Five only knew about one supplemental screening checked that off, um, that would be the option � Doctor recommendation or previous screening by MRI or end of it for me . And yet, there probably ultrasound should be something on here about breast � Other information sources: friends/family, internet, medical journals density … I don’t think there’s anything on � Four women were not familiar with supplemental here about - - on this page about breast screening options density…what reason would I have to go to � All of the participants would consider the additional screening options the second page? I didn’t even know � If they had an issue or a problem (10) there was a backside to this .” � Doctor’s recommendation (7) � Would consider supplemental screening but had some concerns (4) 6
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