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Community workshop: lung cancer

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1 Community workshop: lung cancer
Dr Kate Brain Division of Population Medicine, Cardiff University

2 The need to improve lung cancer outcomes=
AB? Lung cancer survival in Wales is particularly poor and lung cancer is the leading cause of cancer related death in Wales. This is a graph showing 1 year survival for lung cancer. In Wales, we have some of the poorest outcomes for lung cancer in Europe. Because of this the need to improve lung cancer outcomes in Wales was prioritised in policy in 2015. The need to improve lung cancer outcomes= a national priority

3 Lung cancer stage at diagnosis in Wales
AB? Poor survival is associated with stage of lung cancer at diagnosis. We know that only 20% of people are diagnosed with lung cancer in the first two stages where a cure is more likely. This can be explained by prolonged symptom presentation, so we need to think of ways we can encourage high risk groups to engage in early detection of lung cancer.

4 National Awareness and Early Diagnosis Initiative Updated NAEDI Pathway
Backdrop to this talk is the NAEDI pathway - the idea that low public awareness and negative beliefs about cancer influence help seeking behaviour and therefore survival. So it’s the first part of the pathway that this talk addresses. People who have low awareness or knowledge about cancer symptoms and negative beliefs about cancer are more likely to delay going to see their doctor with symptoms, are less likely to take up screening, and more likely to be diagnosed in A&E as an emergency case. This is thought to then lead to advanced stage at diagnosis and ultimately poorer survival. The NAEDI pathway was recently updated to include influences on awareness and behaviour including age, sex, ethnicity and SE deprivation. Hiom S. Diagnosing cancer earlier: reviewing the evidence for improving cancer survival. Brit J Cancer 2015, 112:S1-S5.

5 Lung cancer early detection
Grace McCutchan Division of Population Medicine, Cardiff University

6 Lung cancer inequalities
There are inequalities in lung cancer. People living in deprived communities are more likely to be diagnosed with lung cancer, but they are more likely to die from lung cancer.

7 Diagnosing lung cancer earlier
Symptomatic route Screening?

8 National Awareness and Early Diagnosis Initiative Updated NAEDI Pathway
Backdrop to this talk is the NAEDI pathway - the idea that low public awareness and negative beliefs about cancer influence help seeking behaviour and therefore survival. So it’s the first part of the pathway that this talk addresses. People who have low awareness or knowledge about cancer symptoms and negative beliefs about cancer are more likely to delay going to see their doctor with symptoms, are less likely to take up screening, and more likely to be diagnosed in A&E as an emergency case. This is thought to then lead to advanced stage at diagnosis and ultimately poorer survival. The NAEDI pathway was recently updated to include influences on awareness and behaviour including age, sex, ethnicity and SE deprivation. Hiom S. Diagnosing cancer earlier: reviewing the evidence for improving cancer survival. Brit J Cancer 2015, 112:S1-S5.

9 Knowledge of lung cancer symptoms in a UK sample
These are some data from a population survey of lung cancer awareness in the UK which was funded by CRUK and DH in 2010, based on data from just under 1500 participants. Knowledge of alarm symptoms coughing up blood and shortness of breath was good, but was much lower for persistent cough - so cough was targeted in the Be Clear on Cancer lung campaign in England. [Survey based on random location quota sampling for age, gender and employment – NOT smoking.] [Based on prompted recognition measures. Overall response for recall was lower – but still the same pattern that cough was less known.] Simon AE, Juszczyk D, Smyth N, Power E, Hiom S, Peake M, Wardle J. Knowledge of lung cancer symptoms and risk factors in the UK: development of a measure and results from a population-based survey. Thorax 2012; 67:

10 Socioeconomic barriers to early help seeking
‘’I think a lot of people they’re afraid to go to the doctor’s in case they actually say “yes, you have got cancer” ...so a lot of them will just sort of put it off until they’re so ill they’ve got to go’’ “Well a lot of people with cancer would rather die from the cancer than go through the treatment” When I go down [to the doctor] and she’ll say “I know you’re not drinking, but how about smoking?” and I say “do you want me to cut my throat?” ‘‘They don’t pay you to go to the doctor…I can’t afford to lose time off work …I’ve got to wait for a bus, get down on the bus, and then go back to work which would take me an hour’’ “I clams up [when I go to the doctor]… [my wife would] do all the talking…I’m not a very good talker she’s a better talker than me” “Phone the funeral director, I’ve got cancer!” As you can see, participants described barriers relating to fear of being diagnosed, fear of cancer treatment and fatalistic beliefs about cancer. Also barriers to accessing primary care such as lack of money and having to take time off work, lack of trust in disclosing to the GP and lack of confidence in talking to the GP. ‘’[The doctor said] ‘’I can only see you about 1 thing I’ve got 5 minutes‘’. I thought well it’s a waste of space coming to see you...’’ McCutchan G, Wood F, Smits S, Edwards A, Brain K. Barriers to cancer symptom presentation among people from low socioeconomic groups: a qualitative study. BMC Public Health 2016; 16: 1052.

11 Barriers to uptake in UK Lung Screening trial
Non uptake N=2756 Uptake N=4061 multivariable OR (95% CI) p value Female 986 (36%) 1020 (25%) 0.64 ( ) <0.001 Older age (>71 yrs) 831 (30%) 1070 (26%) 0.73 ( ) Current smokers 1334 (48%) 1568 (39%) 0.70 ( ) Most deprived 924 (34%) 1090 (27%) 0.56 ( ) Lung cancer concern 329 (44%) 1478 (36%) 0.52 ( ) “I do not wish to know if I had lung cancer, so I try not to think about it” “Frightened” There is currently no lung screening service in Wales, but there have been trials to understand how effective lung screening is. From these trials the people who are least likely to take part in the screening are the same people who are less likely to go to their doctor with symptoms- smokers from low SE groups. We also know that the reasons people decide not to take part in lung screening are similar to the reasons people do not decide to go to their doctor with a symptom- fear and not wanting to know if they had lung cancer. These are some data we published from the UKLS trial of low dose CT screening which shows under-representation of certain groups including active smokers and people from low SE groups…. Women, older people and smokers less likely to take part in the trial. People in the most deprived quintile were less likely to take part, as were those reporting higher levels of concern or worry about developing lung cancer*. When we asked people to self-report their reasons for non uptake, smokers were more likely to report emotional barriers relating to fear and avoidance of lung cancer information. Ali, N., Lifford, K., Carter, B., McRonald, F., Yadegarfar, G., Baldwin, D.R., Weller, D., Hansell, D.M., Duffy, S.W., Field, J.K., Brain, K. Barriers to uptake among high-risk individuals declining participation in lung cancer screening: A mixed-methods analysis of the United Kingdom Lung Cancer Screening (UKLS) trial BMJ Open 2015;5:e doi: /bmjopen

12 Interventions Awareness campaigns
Mass media campaigns most effective in affluent groups1 I 1Moffat J, Bentley A, Ironmonger L, Boughey A, G Radford, Duffy S. The impact of national cancer awareness campaigns for bowel and lung cancer symptoms on sociodemographic inequalities in immediate key symptom awareness and GP attendances. BJC 31;112 Suppl 1:S doi: /bjc

13 How can we engage high risk/hard to reach groups in lung cancer early detection?
The problem- High risk groups who delay presenting with lung symptoms in primary care also don’t engage with lung screening (fear, stigma, low motivation) Prompt: Is it through primary care? Or community groups? Target group – eg screening-eligible community sample of adults aged years living in deprived areas of Wales, who are predominantly current smokers with 30 pack-year history. Potential participants identified by age, smoking, quit intention and deprivation via community smoking cessation services/Stop Smoking Wales - population database registry of all smokers in Wales registered in primary care and secondary care [leading to different layers of intervention i.e. stop smoking counsellors based in community groups/pharmacies, GP practices or secondary care - thus a heterogeneous sample with/without COPD*]? Randomise to receive targeted community-based invitation materials (designed to address barriers including fear, fatalism, stigma, emphasising benefits of earlier diagnosis and treatment, men & women, normalisation/non-judgemental, regardless of comorbidities, without mention of cancer, risk or smoking cessation) vs control information (standard lung screening information materials e.g. modelled on bowel screening programme booklet, smoking cessation advice)? Invite to hospital based, nurse led lung health clinic - informed consent, medical and smoking history, data collection, spirometry, CO reading, LDCT scan if eligible. Provide stepped smoking cessation advice for quit non-intenders. *COPD annual reviews by GP practice nurses across UHBs - but might be contraindicated for CT because symptomatic and already having scans.


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