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Cancer candidacy: implications for public health

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Presentation on theme: "Cancer candidacy: implications for public health"— Presentation transcript:

1 Cancer candidacy: implications for public health
Tom Sanders

2 Prevention Paradox Coronary candidacy (Geoffrey Rose 1981; Davison et al 1991) The ‘candidate’ who survives to a ripe old age The case of Uncle Norman Last person you’d expect Individual vs Population level explanations Candidacy definition: ‘A person who is deserving of or seems destined for a certain end or fate’

3 Background Barriers to presentation of possible cancer symptoms
Highest perceived barriers in the UK (Forbes et al., 2013) Embarrassment Wasting the doctor’s time Fear of what the doctor may discover/denial Other factors implicated in delay in help-seeking (deficit approach): Nature of symptoms: less common – greater delay (Macleod et al., 2009) Lack of recognition of seriousness (Macleod et al., 2009; Smith et al., 2009) Lack of knowledge (Mitchell et al., 2008; Tod et al., 2008) Normalisation (Corner et al., 2006; Brindle et al., 2012)

4 Method To gain insight into processes of symptom interpretation and decision-making for help-seeking Semi-structured interviews (patients with lung and colorectal ca.), January – March 2013 Diagnosed within previous 12 months Patients invited to participate by research nurses at a hospital clinic 9 lung and 20 colorectal patients (seven declined)

5 Symptom perception and help-seeking
PRE SYMPTOM PERCEPTION SYMPTOM PERCEPTION Development of alternative explanations for symptoms: Arguments/rationales underlying alternative explanations: No pain, no problem Inconsistency of symptoms Lack of ‘obvious’ symptoms Types of alternative explanation adopted by patients: Comorbidity/Potential link to previous illness/Side-effect of medication Benign explanation available Old age Validation/provision of alternative explanations by family/friends/colleagues Triggers to action: Alternative explanation(s) no longer viable Persistence of symptoms Loss of function Progression of symptoms Ineffectiveness of self- Pressure from others HELP-SEEKING DIAGNOSIS Hindsight: Possible symptoms No regret/could not have changed outcome What participant might have done differently Alternative explanations endorsed by HCPs Alternative explanations refuted by HCPs No satisfactory explanation No satisfactory explanation

6 Symptom perception: arguments/rationales
No pain, no problem: “No pain, no chest pain, or anything, no pain anywhere, just this [fatigue], so I just attributed it to being tired, if you like.” (CQ4, M, L) “No it wasn't a pain; I think if I'd have been in pain I would have gone to the doctors earlier.” (CQ25, F, C) SYMPTOM PERCEPTION Development of alternative explanations for symptoms: Arguments/rationales underlying alternative explanations: No pain, no problem Inconsistency of symptoms Lack of ‘obvious’ symptoms Types of alternative explanation adopted by patients: Comorbidity/Potential link to previous illness/Side-effect of medication Benign explanation available Old age Validation/provision of alternative explanations by family/friends/colleagues Inconsistency of symptoms: “It was every now and then, like, you know [bowel movements], so that's why I didn't put it down to anything serious, sort of, thing.” (CQ1, M, C) PRE SYMPTOM PERCEPTION Lack of obvious symptoms: “...there was nothing obvious, there was no blood or you know obvious blood in the toilet or anything that would make me...” (CQ15, F, C)

7 Symptom perception: alternative explanations
Development of alternative explanations for symptoms: Arguments/rationales underlying alternative explanations: No pain, no problem Inconsistency of symptoms Lack of ‘obvious’ symptoms Types of alternative explanation adopted by patients: Comorbidity/Potential link to previous illness/Side-effect of medication Benign explanation available Old age Validation/provision of alternative explanations by family/friends/colleagues Comorbidity/Potential link to previous illness/Side effect of medication: “Yeah, well, I'm asthmatic, see, anyway, because you have a tendency to cough a bit more, being asthmatic.” (CQ19, M, L) Benign explanation available: “Yeah, and it [rectal bleeding] stopped and it was probably a slight cut, maybe, an abrasion of some form for whatever reason, whether it was sport or anything. I played a lot of sport and stuff. So yeah, that's where you get to dismiss it a little more.” (CQ8, M, C) PRE SYMPTOM PERCEPTION Old age “So I thought, 'I'm getting a bit old here [laughs]. I'm losing it a bit, like, with just being stuck in one position on the engine, just doing the levering.' So I just put it down to that.” (CQ1, M, C)

8 Symptom perception: validation
Development of alternative explanations for symptoms: Arguments/rationales underlying alternative explanations: No pain, no problem Inconsistency of symptoms Lack of ‘obvious’ symptoms Types of alternative explanation adopted by patients: Comorbidity/Potential link to previous illness/Side-effect of medication Benign explanation available Old age Validation/provision of alternative explanations by family/friends/colleagues Validation of alternative explanations by family/friends/colleagues “But everybody was saying at that time they'd got a cough, the people we were with at [place], he was cough, cough, cough, all the while. He's been going to the doctors ever since and they can't find anything wrong with him.” (CQ5, M, L) PRE SYMPTOM PERCEPTION Provision of alternative explanations by family/friends/colleagues “My niece did go to the chemist and got some tablets because she thought it was just stomach cramps. She thought it was something I’d eaten that was giving me stomach pains and stomach cramps because she said she gets them.” (CQ21, M, C)

9 Triggers to action SYMPTOM PERCEPTION PRE SYMPTOM PERCEPTION
Persistence of symptoms: “I thought, ‘it’s [bowel symptom] not gone away. I need to make a doctor’s appointment’.” (CQ20, M, C) SYMPTOM PERCEPTION Development of alternative explanations for symptoms: Arguments/rationales underlying alternative explanations: No pain, no problem Inconsistency of symptoms Lack of ‘obvious’ symptoms Types of alternative explanation adopted by patients: Comorbidity/Potential link to previous illness/Side-effect of medication Benign explanation available Old age Validation/provision of alternative explanations by family/friends/colleagues Triggers to action: Alternative explanation(s) no longer viable Persistence of symptoms Loss of function Progression of symptoms Ineffectiveness of self- medication Pressure from others Loss of function: “I just couldn’t breathe, and my job is plastering, which is all physical work.” (CQ14, M, L) PRE SYMPTOM PERCEPTION Pressure from others: “Yes they [family] were concerned. They were ringing all the time. I’ve a nephew who lives in [place] and he rung the doctor a couple of times. I rang for an emergency doctor and he rang.” (CQ21, M, C) HELP-SEEKING

10 Alternative explanations refuted
“Yeah I went along and she just said well you'd better go for an x-ray, and that was about it really. Asked me a few questions about how long it had been going on for and that sort of thing. But really the decision was to go and get an x-ray. And I think I went on the Friday, she'd got the results on the Tuesday I think.” (CQ5, M, L) SYMPTOM PERCEPTION Development of alternative explanations for symptoms: Arguments/rationales underlying alternative explanations: No pain, no problem Inconsistency of symptoms Lack of ‘obvious’ symptoms Types of alternative explanation adopted by patients: Comorbidity/Potential link to previous illness/Side-effect of medication Benign explanation available Old age Validation/provision of alternative explanations by family/friends/colleagues Triggers to action: Alternative explanation(s) no longer viable Persistence of symptoms Loss of function Progression of symptoms Ineffectiveness of self- medication Pressure from others Alternative explanations refuted by HCPs DIAGNOSIS Hindsight: Possible symptoms No regret/could not have changed outcome What participant might have done differently HELP-SEEKING

11 Alternative explanations endorsed
SYMPTOM PERCEPTION Development of alternative explanations for symptoms: Arguments/rationales underlying alternative explanations: No pain, no problem Inconsistency of symptoms Lack of ‘obvious’ symptoms Types of alternative explanation adopted by patients: Comorbidity/Potential link to previous illness/Side-effect of medication Benign explanation available Old age Validation/provision of alternative explanations by family/friends/colleagues Alternative explanations endorsed by HCPs Triggers to action: Alternative explanation(s) no longer viable Persistence of symptoms Loss of function Progression of symptoms Ineffectiveness of self- medication Pressure from others “I knew something was wrong and I knew, I thought is it asthma, is it COPD, and the first GP he did say to me oh, you're going down the road now to COPD.” (CQ30, F, L) “What was your reaction when you noticed the spots? Did you think anything of it at first?” “No. I thought what I was told [later], because I had haemorrhoids anyway and I thought it was just breaking piles…… I went to the doctors and they said to me that it was haemorrhoids, bleeding haemorrhoids. I went about six times.” (CQ26, M, C)   HELP-SEEKING

12 Hindsight DIAGNOSIS HELP-SEEKING
What participant might have done differently: “Well I suppose I should have gone sooner, shouldn’t you really, rather than putting it off hoping that it would go away. I think if you’ve got something the matter, you want to get off as early as you can, don’t you? Gives everybody a better chance doesn't it? Rather we all leave these things too late don’t we, and that’s what causes the trouble.” (CQ5, M, L) Triggers to action: Alternative explanation(s) no longer viable Persistence of symptoms Loss of function Progression of symptoms Ineffectiveness of self- medication Pressure from others Alternative explanations refuted by HCPs Possible symptoms: “But that's with hindsight I think that I should have twigged a bit on the tiredness, because it was sudden. And what I do for a living is a very heavy game, and I don’t get tired. It doesn't bother me. But yes, with hindsight, tiredness, I think when they were warning people about bowel cancer, I think they also should say are you lethargic, do you feel tired more often? I know that can be a million and one things, but in my case I think it was the symptom.” (CQ3, M, C) DIAGNOSIS Hindsight: Possible symptoms No regret/could not have changed outcome What participant might have done differently HELP-SEEKING

13 Conclusions Uncle Norman implicit within alternative explanations?
People engage in active reasoning regarding symptoms (contrary to ‘deficit’ model implying passivity) Logical explanations Delay in presentation inevitable? Role of significant others not only in ‘triggering’presentation of symptoms but also in perpetuating alternative explanations Importance of pre-diagnostic ‘patient journey’ (negated by theories of ‘biographical disruption’)

14 Qualitative Study Team:
Dr Tom Sanders Dr Sarah Yardley Dr Sarah McLachlan Ms Gemma Mansell Professor Danielle van der Windt Professor Carolyn Chew-Graham SPCR Partners Southampton team: Professor Paul Little, Dr Gerry Leydon, Dr Lucy Brindle Thanks also to the research nurses who helped with the recruitment of patients This presentation presents independent research funded by the National Institute of Health Research (NIHR) School of Primary Care Research (Grant No. 121c. The National Institute of Health Research (NIHR) School for Primary Care Research is a partnership between the universities of Bristol, Birmingham, Keele, Manchester, Nottingham, Oxford, Southampton and University College London. The School of Primary Care Research is supported by the National Institute of Health Research (NIHR). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.


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