Cancer early detection and prevention strategy

Social marketingworkstream

22 October 2008

A presentation for:

MCCN update Page 2

Why are we here?

To share progress in developing a social marketing intervention to reduce the health inequalities found in the early detection and prevention of cancer

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Our framework for action

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What have we done so far?

Segmenting target groups to understand: What are the risk factors for prevention? Who is late presenting? What are their lifestyles, attitudes

and behaviours?

Understanding the context

Understanding the audience

Understanding behaviours

Analysis of excess incidence and mortalityto identify: Which are the largest cancers? Which cancers kill the most people? What is the scale of inequality for each cancer?

Where are the differences across the network?

Research among healthcare professionalsand at risk groups to establish: What are their underlying motivations for action? What are the key benefits and barriers to

prevention and early detection? What can MCCN do to add most value?

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Excess incidence and mortality by cancer

Source: NHS/NWCIS data – 2001 – 2005

-15.5%

-16.5%

-41.3%

-11.4%

-32.3%

-17.5%

-14.6%

1.4%

3.6%

3.1%

-50% -40% -30% -20% -10% 0% 10%

Breast - Females

Bladder - males

Bladder Females

Colorectal - Males

Colorectal -Females

Skin - Males

Skin - Females

Cervix - Females

Lung - Males

Lung - Females

Excess Incidence 6.1%

3.2%

0.0%

16.9%

2.0%

-30.9%

30.1%

76.5%

23.5%

32.1%

-40% -20% 0% 20% 40% 60% 80% 100%

Breast - Females

Bladder - males

Bladder Females

Colorectal - Males

Colorectal -Females

Skin - Males

Skin - Females

Cervix - Females

Lung - Males

Lung - Females

Excess Mortality

% Mortality (from

Incidence) Total IncidenceTotal All Cancers 34.5% 6257

Bladder total 34.5% 1179Breast total 18.9% 5520Colorectal total 32.2% 4340Lung total 55.7% 5701Skin total 12.4% 1069Cervix total 32.1% 324

Lung cancer accounts for majority of excess deaths. Below average incidence for most other cancers but high excess mortality suggests need for earlier detection focus

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Some key differences across the network

Low: Excess between 6 and 19.9% lower than region

Very Low: Excess more than 20% lower than region

Average: Excess between 5.9% lower or 5.9% higher than regionHigh: Excess between 6 and 19.9% higher than region

Very High: Excess more than 20% higher than region

Given total region has higher than expected excess for all except female bladder and male skin cancer, only those regions with a “Very Low” difference to total region have lower than expected mortality compared to national average

Source: NHS database, all comparisons with region average in % point

 Total

regionCentral

CheshireEastern Cheshire Halton St Helens Knowsley

North Liverpool

Central Liverpool

South Liverpool

Breast - Females 6.1% very low very low very high low average average high very high

Bladder - males 3.2% high very low very high average very high very high low very low

Bladder Females 0.0% high very low very low very high very low very low very high low

Colorectal - Males 16.9% low low low low high very high very high very low

Colorectal - Females 2.0% average very low very high high very low very high average very high

Skin - Males -30.9% low very high very low very low very high very low very high average

Skin - Females 30.1% high very low very low very low very low very high very low very high

Cervix - Females 76.5% very low very low very high very high very high very low very low high

Lung - Males 23.5% low very low high high high very high very high very high

Lung - Females 32.1% very low very low very high low very high very high very high low

Excess mortality

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Understanding the audience

Source: Cancer reform strategy, NHS, Dec. 07, Background information to inform the Cancer Early Detection and Prevention Strategy – Oct 07Reducing Health Inequalities through improved Early Detection and Prevention of cancer – a strategy for 2008-2010, Jan 08

Smoking Drinking Obesity/ diet Genetics Sunbed use

Sexually active (many

partners / STDs)

Deprivation (lifestyle factors)

Lung Cancer          

Breast Cancer          

Cervical Cancer       

Bowel Cancer    

Bladder Cancer      

    

Malignant Melanoma            

Secondary factor

Primary factor

  BME's Older MenLearning

DisabilitiesMental Health

Muslim religion

Sexually active (many

partners/STDs)

Deprivation (attitude to authority)

Lung Cancer          

Breast Cancer        

Cervical Cancer    

Bowel Cancer  

Bladder Cancer          

Malignant Melanoma          

Prevention – what are the risk factors?

Detection – who presents late?

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Inequality groups

Sources: Cancer reform strategy, NHS, Dec. 07, Background information to inform the Cancer Early Detection and Prevention Strategy – Oct 07, Reducing Health Inequalities through improved Early Detection and Prevention of cancer – a strategy for 2008-2010, Jan 08, Wirral Cancer Equity Audit, Apr 08, National Audit Office 2001, Tracking Obesity in England, the stationary office

BME’s Diverse group with inherent cultural

differences (e.g. 44% of Bangladeshi men smoke, Caribbean women are more likely to be obese)

Particular issues around detection of Cervical and Bowel cancer: Not aware of symptoms to look out for Talking about bodily functions is

a cultural taboo Females cannot be seen by a

male doctor Religion might prevent from

seeking help and perceptions of screening as “unclean”

Learning disabilities Particularly relevant to cervical

and breast cancer, but also for bladder and bowel

Late detection as low percentage attend screening

Less aware, do not understand the importance of symptoms and therefore don’t go to the doctor as quickly

Mental health Particular issues for breast,

cervical and bowel cancer less likely to attend screenings may not be monitored sufficiently

to pick up issues Perception that symptoms

can be overlooked or assumed to be part of the pre-existing condition

Schizophrenics are 84% more likely to get bowel cancer than average

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Profiling risk groups

Used TGI to segment the population by risk factors:Heavy smokers Light smokersMedium smokers

“I’ve got to die of something

anyway”

Heavy drinkers

“Drinking is just part of my everyday life”

OverweightObese

“I’m not very confident and am self conscious”

Unhealthy diet

“I’m too young to worry about

my health”

Sun-bed users

“It’s important for me to look

good”

“Life’s for living - I enjoy a smoke and a drink”

“I’m too busy with the kids to look after myself”

“I’m a big foodie and know I should lose a few pounds”

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For example - Sun bed user Louisa from Liverpool, 16 years old

Louisa lives at home and is at college taking a vocational qualification in hairdressing. She really cares what people think of her and outward appearance is everything. Status conscious, she looks up to celebs and is a fashion conscious shopaholic. She is always on a diet and feels self conscious about her weight so she skips meals to keep in shape. She likes taking risks, trying new things and adventure. Always out, she binge drinks with her mates and tries to get in the bars to be seen in. She pops to the doctors periodically – perhaps to pick up her contraceptive prescription

14.1% of the NW population aged 15+ likely to use a sun-bed. (1.6% above national average) – 2/3 are female, all social grades

“It’s important for me to look good”

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Understanding behaviours

Charities

At risk patients

GPs

Pharmacists Nurses

One to one depth research, focus groups and workshops among healthcare professionals and at risk groups to understand knowledge and attitudes and to identify any potential barriers and opportunities for the future

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Achieving behaviour change

Perceived benefits Perceived barriers

Increase benefits

Decrease benefits

Personal and social benefits of action

Decrease barriers

Increase barriers

Personal and social losses from inaction

New Behaviour

Competing behaviour

Messages

Source: Fostering Sustainable Behaviour – Doug McKenzie Mohr, William Smith

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GP – barriers

Time Not enough appointments

available/phone-lines are busy Not in QOF/not my responsibility Work overload for primary care staff Approachability of HCP

Apathy/denial Attitude: “it’s nothing serious” Age – too young to be anything serious /

too old for it to matter now no family history “People are too busy – they don’t check

and they don’t ask” Don’t want to bother doctor

Fear Fear of cancer and of screening

process itself Embarrassment at symptoms (esp

males)Awareness/information/mis-information Lack of awareness of symptoms Lack of information getting through

to public Lack of information for staff Carers of learning disability

patients need education

What barriers do we need to overcome to improve early detection and prevention of cancer?

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GP - opportunities

Easy access to screening More opportunities in different locations to give

patients choice, including open clinics and drop in

Better information and education Patient education and awareness raising Simple checklists of what to do to prevent

cancer and what to look out for Signposting to clinics and screening Practice website, Newsletter, Message on

prescriptions, leaflets, TV ads and storylines, schools and colleges

Training for staff and on screen reminders Reward patients/ better follow-up Good system for rewarding patients especially

if miss initial screening Follow up and education of non-attendees

What can we do to increase early detection and prevention of cancer?

Relationship building/more conducive environment:

Approachability of staff Good relationship GP or practice nurse

encouraging patients to mention symptoms

Confidential areas to speak with staff/patients

Refer earlierReferral system: Change referral form to not include

irrelevant symptoms Fast-track referral when not

symptomatic One-stop anaemia clinic Not sticking too rigidly to guidelines Hunch clinic (sixth sense)

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Pharmacy - barriers

Time Pharmacists are enthusiastic but “there is a

limit to what we can do” “the workload, we are near saturation

point...the government is asking us to do more year on year”

Confidence Pharmacists aren’t specialists, can’t diagnose

and will always refer patients to their GP “we don’t get an in depth view of patients

symptoms” “you have to be really wary about how you say

things” “you can’t force people to go to their GP if you

think it is cancer” “Drs are trained to break news like that using

their skills”

All keen to emphasise their willingness to help, but practical barriers exist:

Fear “people think cancer means death they don’t want to know ”

Embarrassment “some screening is invasive and people don’t like that...or bowel cancer you have to provide a sample”

Apathy/denial “Biggest thing about screening - what I don’t know, won’t hurt me’...

Awareness“Education, education, education’ is the main barrier to early detection - we don’t expect to get screening unless you pay for private healthcare’“half the battle is getting people to the hospital even if they do make an appointment for screening, 50% don’t turn up - perhaps a small charge should be made for appointments?”

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Pharmacy - opportunities

Building knowledge and extending signposting

Training as part of CPD “If you train the pharmacists to know

where people could go to get extra help and say ‘these are the options”

“Remember pharmacists don’t always know as much as people think they do – there are new drugs mentioned all the time and everyone wants to know about it”

Communicating via the RPS, professional press and post

Providing information to patients Leaflets and posters in store and

inserts into prescription bags ‘‘make things more accessible”

What can we do to increase early detection and prevention of cancer?

Education “it’s an ongoing battle... education is

always going to be needed” “Make people more aware of self checks

or what is available at pharmacies”Follow up “targeting those requiring smear tests but

following up with a phone call”Referrals “Pharmacists might not want to advise

people so they would need a suitable way to refer them”

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Risk groups – attitudes to health

Combination of drinking, smoking and poor diet is the norm – yet they do not link this to the possibility of cancer

Heart problems more of an immediate concern and many visit GP for blood pressure and cholesterol checks

Generally unwilling to bother doctor un-necessarily – only visit if everyday life is threatened

More likely to worry about the health of others (e.g. partner) than their own

Biggest fear is not being independent and having to rely on others – leveraging this concern around the process of cancer may be a key trigger to behaviour change

Eat, drink and be merry for

tomorrow you might die.

The last thing I want is to become

dependant on someone else.

Life is for living – when my time is up,

it’s up.It’s all in the genes anyway.

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For the majority, cancer is not a major concern, despite having seen the suffering of close family or friends

If you get cancer, you will die -

eventually it will get you and treatment

will only prolong the inevitable.

I’m not in pain at the moment, so I

don’t need to worry about my

health.

If you don’t talk or think about

cancer, it won’t happen to you.

There’s very little you can do to

prevent cancer happening – it’s more about the luck of the draw.

Attitudes to cancer

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Attitude to screening services

Majority positive to screening if it is suggested to them but do not actively seek it out because it is not on their radar

Women more familiar than men via cervical and breast programmes

Some experience of bowel screening via DIY postal packs - a couple rejected as they didn’t like the idea of the test and subsequent colonoscopy

A few would resist screening: Fear of having to change lifestyle – once you know

you can’t ignore it Would rather not know they might die Scared of the treatment for cancer if positive Cancer would mean too much emotional and

financial pressure for their partner (men) Scared of the other consequences of cancer –

colostomy bags

I would like to know if there was something

wrong with me because I think I’m half way there

now (50 yrs) so I’m thinking anything that

can make my life better at my age no matter

how big or small it is a good thing.

The NHS sent me a simple test and I haven’t bothered.

There’s nothing you can do about it if

you’ve got it you’ve got it. If you’re

numbers up, your numbers up.

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Barriers - Attitudes to prevention

People not sufficiently motivated to alter their lifestyles in the hope of avoiding cancer

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Key insight: Communication needs to be straightforward and simple to understand. There is a need to dispel the belief that cancer is solely about genes

Very poor knowledge and lack of desire to know moreVirtually nobody could articulate the causes – when pushed,

most mention genes, polluted environment and smoking Information gained via shock stories in the media leaving the

majority unable to separate myths from facts

They reckon smoking causes cancer but I won’t have that. You see babies with it in the paper. It’s not healthy but it doesn’t

cause cancer.

Barriers - Cancer knowledge

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Barriers - Symptom awareness Limited awareness of symptoms and common misconceptions Strongest knowledge of lung symptoms accompanied by denial and written off as “just

winter” Bowel symptoms assumed to be tummy bug or piles – would self medicate Bladder symptoms assumed to be infection and most likely to be ignored Strong desire to know more as a trigger to action: One respondent had all 3 bowel symptoms but hadn’t realised they could be connected.

She vowed to make an appointment that day showing that once symptoms are known, the information would be acted upon

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MostlyDon’t believe their symptoms are seriousSymptoms too trivial for doctor, don’t want to waste

doctors timeMiss self diagnose (Flu, piles etc.) and self medicateDifficult to get an appointment at the doctors Embarrassed about talking about their symptoms

(men)Too proud (illness is a sign of weakness for some

men)For someToo old to do anything about it – when time’s up it’s

upProtecting their loved ones from what they suspect

deep downBelieve that treatment will only delay the inevitableFrightened about what will be foundProbably too far gone for treatmentNervous of the effects of the treatment

Barriers - ignoring symptoms

Sometimes I think I’ll leave it because I’ll go round the corner to the chemist and he’ll give me

something.

It’s hard work to get an appointment at the doctors. You

could be dead by the time you’ve got one in a fortnight’s

time

I went to the doctor because I found blood when I was coughing. He told me I’d burst a blood vessel in my throat. I cough up blood all the time now but I don’t go to the doctor because I know what it is

It’s not that he doesn’t want to tell his wife, he’s afraid to tell her. He doesn’t want to

worry her.”

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Playing on symptoms people may be experiencing can exacerbate fear although there is a need to elevate perceptions of minor ailment to overcome unwillingness to bother doctor.

Opportunities – clear symptom information

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Unanimously positive to mobile clinics – convenient, local, friendly nurses. Seen as more specialist and more approachable than the GP. Strong desire for signposting to find out more

Opportunities - Reaching out

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Opportunities – peer to peer

Engaging real people to share positive early detection stories and tools to pass on knowledge to others

My husband wouldn’t go to the doctor unless he really had to. He had bleeding and wouldn’t do anything about it until I found out. (female)

I’ve just been to Ireland with this man and I heard him getting up in the middle of the night and he was taking forever to wee and I said to him you need to go to the doctors. He said there’s nothing wrong with me and I said there is, there must be, you were up and down all night and I could hear you. I said look, it could be prostrate, it’s no big deal, just go, most men suffer with it.

I have a mate down at the pub. He goes to the toilet, like every five minutes. I’ve told him he should go to get checked out, we’ve all told him, but he won’t listen. He says, ‘I’ll be fine, I’m fine’, I think he thinks it’s too late and he’s a bit frightened.

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Consequences of in-action...More shocking and personally relevant for those who persistently don’t attend screening. Link to trauma they would put their family through resonates highly.

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Driving earlier detection offers more opportunities than prevention There are significant barriers to overcome among healthcare

professionals as well as risk groups To trigger people to act:

— Symptom education must be simple, consistent and sustained across all channels

— Screening should be heavily promoted and followed up— Services should be more accessible within the community — Maximise opportunities to engage during routine visits to

pharmacy, practice nurses, workplaces— Grass roots activity using peer pressure and impact on loved

ones – tools for positive role models who bust the myth that cancer is death and inspire others to come forward early

Summary – emerging insights

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Further research among patients - one to one depths among risk groups for cervical, breast and skin cancer

Interviews with experts in specific inequality areas of mental health and learning disability

Stakeholder engagement to share insights and prioritise actions

Articulate the social marketing strategy and design interventions to reduce inequalities among key groups

Next steps

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Thank youAny questions?For more information please contact belinda.miller@corporateculture.co.uk

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Health and the Muslim community

‘Health’ is highly valued – it is the teaching of the Koran to take care of body and health

Belief that God decides your fate and you need to accept that

Did not look out for the symptoms of cancerNo awareness of screeningLanguage barriers mean letters/information in

English are ignoredWomen unwilling to discuss screening with

daughters –culturally not donePreferences for screening would be for it to be

conducted in the GP’s or via a mobile unit (near the Community Centre) by a female nurse

Although we are not supposed to drink

alcohol if a doctor said drink alcohol for 2

weeks and then you would be better we

would do it, we would be expected to do it.

Health overrides.

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Many see weight loss as symptom of any cancer. If blood is detected anywhere, this would signal that something is wrong and probably trigger a visit to the doctor – but their immediate thought is not cancer!

Key insight: All were genuinely interested in what to look out for. Although they wouldn’t change their behaviour to prevent cancer , if they found out they had signs of cancer they claimed they would seek treatment for it

Lung Wide knowledge of link to smoking,

accompanied by much denial. Some mention environmental and industrial pollution

Some recall of symptoms (coughing, phlegm, breathless) often written off as “just winter”.

Bowel Most unaware of causes Belief it may be linked with contaminated

food rather than lack of fibre Most did not know the symptoms and

would self medicate for “tummy bug” A few mention blood in stools –

assumed to be piles

BladderMost unaware of causes Belief it could be linked to alcoholMost did not know the symptoms –

generally passed off as a urinary tract infection and particularly likely to be ignored

Some mention pain when passing water

Knowledge of the causes and symptoms