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Chart MSGraph.Chart.804Microsoft Graph 2000 Chart@ Chart MSGraph.Chart.804Microsoft Graph 2000 ChartJ "PowerPoint.Show.80BMicrosoft PowerPoint Presentation/ 0DTimes New Roman,v0,0$DTahomaew Roman,v0,0$" DWingdingsRoman,v0,0$0DArialngsRoman,v0,0$"@DTimesngsRoman,v0,0$PDArial Rounded MT Bold,0$h" C0.  @n?" dd@  @@`` $v>  )"$+/13579; -   !%#&*,.02468:<='5   5 >> (>?4$"$kFL1o0Ud$$$$"$*Mo)Dd 0e0e A@A5%8c8c     ?1d0u0@Ty2 NP'p<'p@A)BCD|E?@8H!I"3ʚ;ʚ;g4KdKdD0jTppp@ <4!d!dph0<<4ddddph0< <4BdBdp̨0g43d3dD0Pp@ ppA9___PPT10 6? %O<fLondon IDEAS Cancer Genetics Workshop 26 April 2006 VAudrey Ardern-Jones - "Too much, too soon?"B.Audrey Ardern-Jones,1* Regina Kenen ,2* Rosalind Eeles3 * co-first authors 1. 1 The Royal Marsden NHS Trust, Downs Road, Sutton, Surrey SM2 5PT UK. 2. 2* The College of New Jersey, Department of Sociology and Anthropology, Social Science Building , The College of New Jersey, P.O. Box 7718, Ewing, NJ. 08628 U.S.A. 3.3Institute of Cancer Research and The Royal Marsden NHS Trust, Downs Road, Sutton, Surrey SM2 5PT UK Mb"*"*"*"*""*J"*""*e" Introduction  Women who develop breast cancer aged 30  34yrs - 10  27% chance of being a BRCA1 gene carrier. Tumour histology  evidence to suggest that: High grade tumours. Negative for oestrogen and progesterone receptors. (Lakhani et al 2002 J of Clinical Oncology) bZiZAZZK x*(PURPOSE OF STUDY3IN THE FUTURE: WILL WOMEN WANT INFORMATION ABOUT BRCA 1 AND BRCA 2 MUTATIONS AT TIME OF BREAST CANCER DIAGNOSIS? DO THE HEALTH PROFESSIONALS TREATING THEM SUPPORT THIS IDEA? TO GAIN INSIGHT INTO THE PERSPECTIVES OF HEALTH PROFESSIONALS & WOMEN WHO HAVE DEVELOPED BREAST CANCER <40 & WHO ARE BRCA CARRIERS. *4Z1C"NCLINICAL MANAGEMENT OF HIGH GRADE OESTROGEN NEGATIVE TUMOURS OF WOMEN UNDER 40.O"( 6$(N MANAGEMENT ISSUES ARE COMPLICATED AND DEPEND ON SIZE, GRADE AND STAGE OF BREAST CANCER DIAGNOSIS. THE MAIN DIFFERENCE FOR SURGICAL MANAGEMENT OF BRCA CARRIERS RELATES TO THE SIGNIFICANT RISK OF DEVELOPING CANCER TO OTHER BREAST (UP TO 60%). IF A WOMAN HAS RADIOTHERAPY THEN RECONSTRUCTION IS MORE DIFFICULT. SO IF A WOMAN CHOOSES TO HAVE PREVENTION SURGERY AT A LATER DATE WITH RECONSTRUCTION IT MAY BE MORE DIFFICULT. OVARIAN SCREENING ADVICE: *P AB METHODSQUALITATIVE RESEARCH DESIGN. FOCUS GROUPS & INTERVIEWS. KEY FEATURE OF FOCUS GROUP & INTERVIEWS IS THE ABILITY TO OBTAIN IN-DEPTH RESPONSES & RICH DATA. DIRECT QUOTES TO VALIDATE FINDNGS.Z Confidentiality:Ethics committee approval. Written consent from all participants. All focus groups and interviews were taped and tapes destroyed afterwards. All names have been changed. FOCUS GROUPS  20 WOMEN WHO WERE KNOWN BRCA CARRIERS AND WHO HAD DEVELOPED BREAST CANCER < 40 WERE INVITED. 13 WOMEN ATTENDED. 3 FOCUS GROUPS ARRANGED SUPPORT & DEBRIEFING ARRANGED. Z (17 INTERVIEWS WITH HEALTH PROFESSIONALS )'L BREAST SURGEONS BREAST NURSES CANCER GENETIC NURSES ONCOLOGISTS GENETICISTS ML"Focus Groups & Interviews(Focus groups  patients told their stories and described their experiences. A few prompted questions by RK monitor related to the purpose of the study. Interviews were semi- structured to allow openness and ensure that questions were asked related to the purpose of the study.3 Themes identified from focus groups & interviews41wToo much too soon. No perfect time Wanted to be tested immediately Benefits of waiting Delivery of Genetic information.xv  Too much too soonI felt at the time I was diagnosed that there was so much information& ..and they were bringing me in for other tests, you know, the bone test to look for secondaries, and all that, and then sitting me down and telling me it was positive and telling me my 20 options of treatment, that s what it felt like at the time, being in this room& I think if they d said at the end of it,  And we re going to give you a genetics test , I m afraid, I think it would have been just one bit of information too many for me in that particular circumstance. Jenny, aged 43, 1 child, 2 primary breast cancers, no prophylactic surgery.&iPLNo perfect time: I think just saying,  Look this information is available and just kind of leave it a while, and then the person can do it in their own time, when they feel ready. I mean, I don t think there is an exact time . Bonnie aged 42 2 children 2 primary breast cancers has had oophorectomy & is considering bilateral prophylactic mastectomies2QZ} Wanted to be tested immediately F I think I would have liked to have known straight away, because, I think from a practical point of view I might have decided on a different option. & & ..but I also feel that& it took me 3-4 years, I think that I was actually able to look ahead and stop thinking&  Am I going to be at the Christmas concert with my kids next year& &  Caroline age 42 2 children. 1 breast cancer planning to have prophylactic mastectomies 2ZKW Benefits of waiting. If I had been given the gene diagnosis at the time of surgery, I would have had everything off& but now even though I have had cancer twice, first in my twenties and now again in my forties& I am glad I am me and I mind much more now in my forties that I have my own breasts. Somehow it matters much more now. Tess aged 42, 2 children, 2 primary breast cancers0hZ43Delivery of Genetic Information The women agreed how the information was very important. They wanted someone who had the time and was an expert in the field.  & ..It is not so much who but certainly how the information is given&  (Uta aged 44& planning on bilateral mastectomies) ^ZC0G$Delivery of Genetic Information  ( I think that the Genetics Department here, and I don t know whether it is the same elsewhere is like the sisterhood. It makes you feel very comfortable and & you know that the information s accurate and I think that was very important and that there s no rush. Caroline age 42, children , 1 breast cancer planning to have bilateral prophylacitc mastectomies HkPb&M   Findings: Focus GroupsMajority of women felt that they probably could not have coped with a breast cancer diagnosis and the whole process of genetic testing and informing other relatives at the time of a breast cancer diagnosis. Both the emotional and physical stresses at the time were enough to cope with. However, some women in the study regretted not having the genetic information earlier because it would have changed their decisions.P1Perspectives of professionals: Too much too soon.22$Cancer Genetics Nurse Specialist  & .I would worry about the amount of information, kind of bad news that women have got to take in all at once& ..so taking all the , sort of, cancer stuff in and the genetic stuff, its s a big blow .&! Value of early genetic testingxONCOLOGIST  If further studies bore out that, say BRCA women had a poorer survival and maybe therefore you should treat them differently, you should use more intensive treatment, then there d be a real argument. I think there d be a real push from the oncology community to have this as part of the initial work up := 15 Who should give the genetic info to the patient?*6 0 RBreast Surgeon  I personally don t see the need for my women to come to genetics so long as they are meeting someone who understands genetics. I find all these things very strange& ..I don t see why a woman needs to come back and discuss their liver function tests with a palliative care doctor .:*Who should tell?xGeneticist  I think you should allow the people to see a clinical geneticist or nurse counsellor& .remember we are talking busy oncology clinics, you re talking to surgeons and physicians& who don t have half an hour to spend with them talking about really sensitive issues which demand time and pause and reflection .Z=Z 0Summary of Findings`Mainly agreement between women and professionals  providing information about genetic testing at approximately the same time as the cancer diagnosis was likely to result in both informational and emotional overload at a time when women where overwhelmed with cancer treatment options, anxiety and fear. 115Suggestions for the future from women & professionals66$3Genetic information leaflets to be available in breast clinics. Joint breast & genetics clinics Staggered clinics on the same day: or an available trained Genetic Counsellor in clinic Additional cross professional genetic education A system whereby breast clinic women can self refer to a genetic counsellor4Z4Concerns Possible limited NHS resources and funding. Limited time  current clinics are overcrowded.\\Limitations to the studyEAll women were middle class and white. All women were recruited from one cancer centre. This was not a prospective study. The investigators asked retrospective and hypothetical questions. Small sample of women and professionals Time span of diagnosis to testing ranged 1 - 7 years (genetic testing done at different points).FZF Thank you: `To the women who participated in the study. 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Genetic testing information offered at the same time as a breast cancer diagnosis in women under forty years of age.,H  0޽h ? ̙33y___PPT10Y+D=' = @B + !L0  0(   x  c $~ U   x  c $l    H  0޽h ? ̙33y___PPT10Y+D=' = @B + !L0 0(  x  c $@U U  U x  c $kU   U H  0޽h ? ̙33y___PPT10Y+D=' = @B +"L0 0(  x  c $Q p Q x  c $Q    Q H  0޽h ? 3333___PPT10i.cPO-+D=' = @B +_!L0 nfP(    ZA ??~xW   Td{Ugֳgֳ?   ?BRCA2   N4Ugֳgֳ?Hx  ?BRCA1   TGUgֳgֳ?o XC  E General Pop    TUgֳgֳ? ! a'BREAST CANCER RISKS IN BRCA1/2 CARRIERS( (  TUgֳgֳ?u  V Breast Cancer Linkage Consortium! !H  0޽h ? y___PPT10Y+D=' = @B +`!L0 og`(    ZA ??0X   T8Ugֳgֳ?  ?BRCA2   NԓUgֳgֳ?x` L ?BRCA1   TUgֳgֳ? .{  E General Pop    TUgֳgֳ?@ b(OVARIAN CANCER RISKS IN BRCA1/2 CARRIERS) )  TUgֳgֳ?u  V Breast Cancer Linkage Consortium! !H  0޽h ? y___PPT10Y+D=' = @B + !L0  0(  x  c $0U U  U x  c $ԣU   U H  0޽h ? ̙33y___PPT10Y+D=' = @B + !L0 @p0(  px p c $U U  U x p c $U   U H p 0޽h ? 3333y___PPT10Y+D=' = @B + !L0 `0(  x  c $pU U  U x  c $DU   U H  0޽h ? ̙33y___PPT10Y+D=' = @B + !L0  0(   x  c $U U  U x  c $U   U H  0޽h ? ̙33y___PPT10Y+D=' = @B + !L0 0(  x  c $$U U  U x  c $U   U H  0޽h ? 3333___PPT10i.1@[+D=' = @B + !L0 t0(  tx t c $tU U  U x t c $(U   U H t 0޽h ? 3333y___PPT10Y+D=' = @B + ! 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L0  H0(  Hx H c $t)c U  c x H c $H*c   c H H 0޽h ? 3333y___PPT10Y+D=' = @B +"L0 p8$(  8r 8 S 8c P  c r 8 S 9c   c H 8 0޽h ? 3333___PPT10i.c+D=' = @B + !L0 $0(  $x $ c $dJc U  c x $ c $8Kc   c H $ 0޽h ? ̙33y___PPT10Y+D=' = @B + !L0 L0(  Lx L c $[c U  c x L c $D\c   c H L 0޽h ? 3333y___PPT10Y+D=' = @B + !L0 0(  x  c $ec U  c x  c $ec   c H  0޽h ? 3333y___PPT10Y+D=' = @B + !L0 T0(  Tx T c $|qc U  c x T c $tc   c H T 0޽h ? 3333y___PPT10Y+D=' = @B + !L0 X0(  Xx X c $c U  c x X c $c   c H X 0޽h ? 3333y___PPT10Y+D=' = @B + !L0 0\0(  \x \ c $8c U  c x \ c $ c   c H \ 0޽h ? 3333y___PPT10Y+D=' = @B + !L0 P`0(  `x ` c $ĥc U  c x ` c $c   c H ` 0޽h ? 3333y___PPT10Y+D=' = @B + !L0 pd0(  dx d c $$c U  c x d c $c   c H d 0޽h ? 3333y___PPT10Y+D=' = @B + !L0 h0(  hx h c $c U  c x h c $c   c H h 0޽h ? 3333y___PPT10Y+D=' = @B + !L0 l0(  lx l c $c U  c x l c $c   c H l 0޽h ? 3333y___PPT10Y+D=' = @B +4!L0 C;p(    Zc ??@n  g REFERENCE: Ardern-Jones A, Kenen R, Eeles R (2005) Too much, too soon? Patients and health professionals' views concerning the impact of genetic testing at the time of breast cancer diagnosis in women under the age of 40. Eur J Cancer Care (Engl). 2005 Jul;14(3):272-81. 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Box                 .-@"Tahoma-. 2 p 7718, Ewing,    .-@"Tahoma-. 2 NJ. 08628 U.S.A.     .-@"Tahoma-.  2 3. .-@"Tahoma-.  2 3 .-@"Tahoma-. g2 @Institute of Cancer Research and The Royal Marsden NHS Trust, Do                 .-@"Tahoma-.  2 wns  .-@"Tahoma-. 62 Road, Sutton, Surrey SM2 5PT UK         .-@Times New Roman-. 33.2 @ Too much too soon? Genetic)2"""0".-@Times New Roman-. 33<2 #testing information offered at the ""2""".-@Times New Roman-. 33B2 'same time as a breast cancer diagnosis 22!"!".-@Times New Roman-. 33:2  "in women under forty years of age."-2""#!.-՜.+,D՜.+,    On-screen Show_ &Times New RomanTahoma WingdingsArialTimesArial Rounded MT BoldBlendsMicrosoft Graph 2000 Chart"Microsoft PowerPoint Presentation. IntroductionPURPOSE OF STUDYOCLINICAL MANAGEMENT OF HIGH GRADE OESTROGEN NEGATIVE TUMOURS OF WOMEN UNDER 40Slide 5Slide 6METHODS Confidentiality:FOCUS GROUPS )17 INTERVIEWS WITH HEALTH PROFESSIONALS Focus Groups & Interviews4 Themes identified from focus groups & interviewsToo much too soonNo perfect time: Wanted to be tested immediatelyBenefits of waiting. Delivery of Genetic Information Delivery of Genetic InformationFindings: Focus Groups2Perspectives of professionals: Too much too soon.Value of early genetic testing6 Who should give the genetic info to the patient?Who should tell?Summary of Findings6Suggestions for the future from women & professionals ConcernsLimitations to the study Thank you: Slide 29  Fonts UsedDesign TemplateEmbedded OLE Servers Slide TitlesL@ @_AdHocReviewCycleID_EmailSubject _AuthorEmail_AuthorEmailDisplayName_ReviewingToolsShownOnce3re talk in philly Audrey.Ardern-Jones@rmh.nhs.ukArdern-Jones, Audrey"_]O gLisa EvansLisa Evans  !"#$%&'()*+,-./0123456789:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~Root EntrydO)PicturesCurrent UserSummaryInformation(\PowerPoint Document(ODocumentSummaryInformation8