Informing women about harms as well as benefits:

does it put them off screening?

Kate Gower Thomas

Breast Test Wales

Cardiff

What is the problem?

Uptake over time

Target population

Information available

Ethics

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

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

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

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

TARGET POPULATION

Who were / are they ?

What were / are they doing ?

target population

1988

• Mrs Thatcher PM

• Berlin wall

• Princess Diana alive

• NO Spice Girls, Channel tunnel, National lottery, MMR vaccine, Hep C

• NO internet!!

NHSBSP information

Leaflets

NHSBSP online info

2016

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.”

• 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

"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

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

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

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

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

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

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

Breast Test Wales

market research 2011

BTW survey

• MRUK

• 1084 interviews (>50% were previous attendees)

• CATI

• Resident female aged >40y

• 10 minute survey

Awareness of breast screening

• Generally good (95%)

• 53 – 59 y old (100%)

• in women who had attended for screening

Previous appointments

• 89 % recalled receiving invitation

• Of whom 90% attended

• 92 % would re attend

Why come again?

• Good cause / idea (+++)

• take advantage

• find cancer early

• peace of mind

• FH

Non attendance – multi response

• 10 % responses

• Inconvenient

• unpleasant last time

• frightened / embarrassed

• feel fine / healthy

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)

BTW website

• 4% had used this

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

Hersch Lancet 2015

Key messages

• Need to make it simpler

• Explain so called “over diagnosis” better

• Change terminology for disease states eg

• Non invasive disease

• “Benign cancer”

LETS LOOK AT … ETHICAL ASPECTS

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

Potential benefit

• if patient knows about the possibility of receiving the benefit - she will probably wish to receive it

• A bit like vaccination …

CITIZEN’S JURY DISAGREES OVER WHETHER LEAFLET SHOULD PUT REASSURANCE BEFORE ACCURACY

BMJ 2012

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

epistemological

• Some experts

- did not understand the literature

- or believe it

- respected own personal experience (common sense) more (!!)

Lisa Parker BMJ 2015

Appropriateness of Rx based on benefits and risks

Reducing PROGNOSTIC errors Khullar BMJ 2016

• 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

WHAT INFO ARE WE NOT SHARING ?

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?

Two special screening groups

• More knowledgeable

• eg FH

• Do they attend screening?

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

• 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)

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

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

Questionnaire results

Female non attenders

• 1 radiographer

• 2 radiologists

• 2 breast clinicians

• 1 researcher

What problem?

Uptake over time

Target population

Information available

Ethics

What next?

THANK YOU FOR LISTENING Kate.gower-thomas@wales.nhs.uk