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Informing women about harms as well as benefits:
does it put them off screening?
Kate Gower Thomas
Breast Test Wales
Cardiff
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What is the problem?
Uptake over time
Target population
Information available
Ethics
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60.0
62.0
64.0
66.0
68.0
70.0
72.0
74.0
76.0
78.0
80.0
Uptake - all invites 1989 - 2015
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60.0
62.0
64.0
66.0
68.0
70.0
72.0
74.0
76.0
78.0
80.0
Uptake - first invites 1989 - 2015
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60.0
62.0
64.0
66.0
68.0
70.0
72.0
74.0
76.0
78.0
80.0
Uptake - by age band 1989 - 2015
49 50-54 55-59 60-64 65-70
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80
82
84
86
88
90
92
94
Uptake - by previous screen assessment history 1992 - 2015
Not assd Assd but no needlebx Assd with needlebx
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TARGET POPULATION
Who were / are they ?
What were / are they doing ?
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target population
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1988
• Mrs Thatcher PM
• Berlin wall
• Princess Diana alive
• NO Spice Girls, Channel tunnel, National lottery, MMR vaccine, Hep C
• NO internet!!
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NHSBSP information
Leaflets
NHSBSP online info
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2016
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Dr Caitlin Palframan, of the charity Breakthrough Breast
Cancer, said: “The rate of over-diagnosis in breast cancer
screening has been debated widely and led to confusing
messages for women on the effectiveness of breast
screening.
"However, we believe that screening is vital as it helps
detect breast cancer early when treatment options are
likely to be less aggressive and have more successful
outcomes.”
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• For every woman whose life is saved by breast cancer screening, up to 10 undergo unnecessary treatment, including surgery and radiotherapy, according to another study that casts doubt on mammography.
• The problem could also get worse, not better, as screening technology improves, according to doctors writing in the journal Annals of Internal Medicine.
• The research is the latest to question the majority view that the benefits of screening far outweigh its harms
• 'over diagnosis' rate of 15 to 25 per cent
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"Over diagnosis and unnecessary treatment of
non fatal cancer creates a substantial ethical
and clinical dilemma and may cast doubt on
whether mammography screening programs
should exist."
At the very least, women "need to be
comprehensively informed about the risk for
over diagnosis”.
Harvard Public School of Health 2012
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Concerning mammography, which is true?
USA no (%) UK no (%) TOTAL no (%)
Prevents risk of breast cancer
262 (26) 191 (17) 879 (21)
Reduces risk of breast cancer
315 (31) 572 (52) 1931 (41)
No influence on risk of breast cancer
369 (37) 243 (22) 1056 (26)
Int J Epidemiol 2003
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Concerning mammography , which is true?
USA no (%) UK no (%) TOTAL no (%)
Prevents risk of breast cancer
262 (26) 191 (17) 879 (21)
Reduces risk of breast cancer
315 (31) 572 (52) 1931 (41)
No influence on risk of breast cancer
369 (37) 243 (22) 1056 (26)
Int J Epidemiol 2003
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To what extent can regular mammo reduce cancer deaths in >50y women screened 2yearly for 10 years?
USA no (%) UK no (%) total no (%)
Hardly reduces 36 (4) 48 (4) 191 (5)
By about a quarter 123 (12) 241 (22) 788 (19)
By about a half 336 (33) 354 (32) 1372 (33)
By about 3/4 288 (29) 187 (17) 830 (20)
Prevents nearly all 93 (9) 53 (5) 354 (9)
Don’t know 127 (13) 225 (20) 605 (15)
Int J Epidemiol 2003
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To what extent can regular mammo reduce cancer deaths in >50y women screened 2 yearly for 10 years?
USA no (%) UK no (%) total no (%)
Hardly reduces 36 (4) 48 (4) 191 (5)
By about a quarter 123 (12) 241 (22) 788 (19)
By about a half 336 (33) 354 (32) 1372 (33)
By about 3/4 288 (29) 187 (17) 830 (20)
Prevents nearly all 93 (9) 53 (5) 354 (9)
Don’t know 127 (13) 225 (20) 605 (15)
Int J Epidemiol 2003
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How many breast cancer deaths can be prevented among 1000 women aged >50 going for 2 yrly
mammograms for 10 years?
USA no (%) UK NO 113 11)(%) Total No (%)
none 9 (1) 14 (1) 75 (2)
About 5 deaths 27 (3) 28 (3) 147 (4)
About 10 48 (5) 60 (6)) 243 (6)
About 20 83 (8) 115 (10) 382 (9)
About 40 117 (12) 153 (14) 628 (15)
About 80 151 (15) 111 (10) 553 (14)
>100 455 (45) 302 (27) 1283 (31)
Don’t know 113 (11) 325 (29) 829 (20)
Int J Epidemiol 2003
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How many breast cancer deaths can be prevented among 1000 women aged >50 going for 2 yrly
mammograms for 10 years?
USA no (%) UK NO 113 11)(%) Total No (%)
none 9 (1) 14 (1) 75 (2)
About 5 deaths 27 (3) 28 (3) 147 (4)
About 10 48 (5) 60 (6)) 243 (6)
About 20 83 (8) 115 (10) 382 (9)
About 40 117 (12) 153 (14) 628 (15)
About 80 151 (15) 111 (10) 553 (14)
>100 455 (45) 302 (27) 1283 (31)
Don’t know 113 (11) 325 (29) 829 (20)
Int J Epidemiol 2003
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Breast Test Wales
market research 2011
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BTW survey
• MRUK
• 1084 interviews (>50% were previous attendees)
• CATI
• Resident female aged >40y
• 10 minute survey
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Awareness of breast screening
• Generally good (95%)
• 53 – 59 y old (100%)
• in women who had attended for screening
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Previous appointments
• 89 % recalled receiving invitation
• Of whom 90% attended
• 92 % would re attend
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Why come again?
• Good cause / idea (+++)
• take advantage
• find cancer early
• peace of mind
• FH
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Non attendance – multi response
• 10 % responses
• Inconvenient
• unpleasant last time
• frightened / embarrassed
• feel fine / healthy
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Clients suggested
• More flexibility of appointment times
• evening / weekends
• ability to change appointment to different location
• more information about screening needed (3% of non attenders)
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BTW website
• 4% had used this
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information
• confusing and not easily absorbed by most women
• women must become familiar with concepts they have never come across
• And appreciate the statistical aspects of the information they are given
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Hersch Lancet 2015
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Key messages
• Need to make it simpler
• Explain so called “over diagnosis” better
• Change terminology for disease states eg
• Non invasive disease
• “Benign cancer”
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LETS LOOK AT … ETHICAL ASPECTS
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To prevent harm
straightforward and compelling to prevent harm BUT . . . screening as an intervention may not . . . Improve health (these are healthy women!)
Improve quantity and quality of life Just because we can does not mean we should Certain screening programmes have ceased Others never started
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Potential benefit
• if patient knows about the possibility of receiving the benefit - she will probably wish to receive it
• A bit like vaccination …
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CITIZEN’S JURY DISAGREES OVER WHETHER LEAFLET SHOULD PUT REASSURANCE BEFORE ACCURACY
BMJ 2012
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Respecting autonomy
• Conflicting values
• respecting autonomy vs delivering benefit
Autonomy more important : maximise information provision = informed choice
OR
Advocated limiting information : avoid ‘scaring women away’ Lisa Parker BMJ 2015
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epistemological
• Some experts
- did not understand the literature
- or believe it
- respected own personal experience (common sense) more (!!)
Lisa Parker BMJ 2015
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Appropriateness of Rx based on benefits and risks
Reducing PROGNOSTIC errors Khullar BMJ 2016
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• Technology advances
• at risk of trying to make women better than well and thus harming them in the process
Conversely
• if the intervention works and outcome is desired, people freely accept trade off even at risk of bodily harm
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WHAT INFO ARE WE NOT SHARING ?
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ICA
• “Screening will miss some cancers, and some cancers will develop between screening.”2009
• “Rarely, breast screening can miss cancers. It picks up most breast cancers, but it misses breast cancer in about 1 in 2,500 women screened.” 2013
• concept not well understood • Should we tell clients that over a quarter of their
cancers are not found through screening • And a quarter of those we actually miss?
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Two special screening groups
• More knowledgeable
• eg FH
• Do they attend screening?
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FH Results 2015 -16
prevalent incident ICA TOTAL
invited 313 1804 2117
screened 264 1592 1856
uptake 84 % 88 %
assessed 12 % 7.2 %
cancer 1 5 0 6 3.2 / 1000
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• THIS QUESTIONNAIRE IS FOR ALL DELEGATES and is linked to a presentation on uptake tomorrow
• 1. ARE YOU MALE or FEMALE? • 2. ARE YOU OF SCREENING AGE? YES NO • 3. DO YOU or WOULD YOU GO FOR BREAST
SCREENING? YES NO • 4. If NO then please state briefly why not • 5. WHAT IS YOUR PRIMARY OCCUPATION? RADIOLOGIST SURGEON • • RADIOGRAPHER FILM READER •
RADIOGRAPHER
BREAST CLINICIAN
PATHOLOGIST RESEARCHER NON MEDICAL COMMERCIAL REPRESENTATIVE
OTHER (PLEASE SPECIFY)
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Questionnaire results
• 178 replies • 36 radiologists • 83 radiographers • 27 advanced practice • 13 breast clinicians • 7 researchers • 5 specialist nurses • 3 (other clinicians) • 3 non medical • 1 spoil
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Questionnaire results
• Male 8 (5 N/A) 3 would not attend
• Female 170
• Screening age 95 current attendees
• Below age 65 would be “ “
• 6 non attenders - of 5 screening age
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Questionnaire results
Female non attenders
• 1 radiographer
• 2 radiologists
• 2 breast clinicians
• 1 researcher
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What problem?
Uptake over time
Target population
Information available
Ethics
What next?
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