Experience of health changes and reasons for delay in seeking care: A UK study of the months prior to the diagnosis of lung cancer
Section snippets
Background
Lung cancer is the most common cause of death from cancer in the European Union—accounting for over 180,000 deaths, representing nearly one-third of the cancer mortality in EU countries (Bray, Tyczynksi, & Parkin, 2004). Lung cancer also has one of the lowest survival outcomes of any cancer. This is attributed to the fact that ‘late’ diagnosis, when the disease is inoperable, is believed to be inevitable due to biomedical difficulties in detecting the disease at an early stage. Consequently,
The study
Our study set out to examine whether any or all of the types of delay already identified were factors in the timing of diagnosis among patients with lung cancer, and to understand more fully how processes of delay occur. Twenty-two individuals recently diagnosed with lung cancer recruited from outpatient clinics in two UK hospitals participated in interviews about the period of time dating back to the first recalled change in their health prior to diagnosis. Data from interviews were analysed
Methods
A Quota sample (to ensure that not less than one-third of the participants had operable and therefore potentially curable disease) of 12 men and 10 women with lung cancer were interviewed. Following approval from two Local Research Ethics Committees participants were recruited from two cancer centres in the South and North of England. In the main recruitment centre all but four eligible patients over a 3 month period were approached (it was not possible to approach three patients for practical
Findings
Six themes were identified that related to experiences of health changes and reasons for delay in seeking care over the months prior to the participants’ diagnosis of lung cancer. These were:
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experiencing uncertainty over what was ‘normal’ and being slow to go to a doctor for help;
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health changes as part of ‘everyday’ fluctuations of bodily functioning;
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disconnected interpretations of bodily changes;
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the problem of co-morbidity;
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not associating health changes with lung cancer;
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and feeling unworthy of
‘Delay’ in seeking help for symptoms
Participants had all, regardless of whether they were ultimately diagnosed with operable or incurable lung cancer, ‘delayed’ using the definition adopted by Burgess et al. (2001) (that is they had waited for more than 3 months before visiting a doctor with suspicious symptoms). All the participants had experienced symptoms for 4 months or more and most had experienced changes in their health over the previous year, the median time elapsing from first change in health prior to diagnosis and the
Experiencing uncertainty over what was ‘normal’ and whether health changes required medical attention
In trying to understand why participants had ‘delayed’ we were struck by how in their accounts of the months preceding diagnosis participants demonstrated a passivity or lack of agency about their health. Participants had been slow to go to their doctor. For many, symptoms were not perceived as important enough to warrant making an appointment. They were uncertain as to what should be considered normal, or they felt what they were experiencing was probably a minor problem. For example, a man
Health change and the ‘everyday’ experience of the body
Symptoms were attributed to bodily functions or changes and therefore were experienced as part of the everyday fluctuations one experiences of one's body and its functioning. It seemed to have taken participants a long time for them to consider that what they were experiencing was out of the ordinary. For example, a man who experienced chest pain for over 5 months before going to the doctor said:
I could feel what I thought was wind …2–3 months passed and I thought ‘that's a hell of a lot of
Disconnected interpretations of bodily changes
‘Carrying on’ in the face of growing ill-health was common place and was driven by the need to hold down a job, or to keep up familiar roles and responsibilities. Participants appeared not to see that a number of separate bodily events and changes might be connected and because health changes were experienced as entirely unrelated these did not serve as clues that when added together could mean that one might be ill. Individual health changes were understood and interpreted separately and
The problem of co-morbidity
Realising that something was wrong was particularly complicated for individuals who had concurrent medical conditions. Half the participants had other chronic conditions such as asthma, cardiac conditions or diabetes. This complicated the process of becoming aware of a new and different illness and also the process of achieving the correct diagnosis once the problem was raised with a doctor. For example, a woman who had been diagnosed with asthma 12 years previously attributed her shortness of
Health changes not associated with lung cancer
In talking about the symptoms and health changes they recalled prior to their diagnosis, participants immediately described the chronology of recent events that surrounded the process of becoming diagnosed. It appears that breathing changes, pains in the chest, an irritating cough or profound fatigue, for example, had not been associated with the possibility that they might have cancer. Most of the participants were smokers or former smokers, a number had even given up smoking as a result of
Feeling unworthy of treatment
There was evidence in the account of one woman that she felt because she smoked she may not have the right to professional care:
‘… you hear people talk about smokers—‘you don’t get the same treatment or whatever’. It's true what people say. I suppose that was one of the reasons that I expected my doctor might say to me ‘well you are a smoker—look after yourself’ (participant 2).
While she was the only participant to have mentioned issues around smoking and the right to treatment, her account
Discussion
The study has limitations, primarily these relate to the small sample and the fact that we relied on participants’ retrospective accounts of their experiences of the months leading up to diagnosis and therefore data may be influenced by how participants recalled events in the light of knowing they have lung cancer. It is possible that there was recall bias as participants try to account for their past actions in relation to their health. However, interview data appeared to reveal little
Implications
This study indicates that recognition of ‘ill health’ is a complex and difficult process especially among older people and those who have low expectations of their health, and since the peak age for diagnosis of lung cancer is between 70 and 79 years it is pertinent to consider lung cancer as a disease of older age (CRUK, 2004). We have found parallels in the accounts of participants in our study with Saunders, Donovan, and Dieppe (2002) work in relation to older individuals with
Acknowledgements
This work was undertaken by researchers from the University of Southampton who received funding from the Department of Health, UK. The views expressed are those of the authors and not necessarily those of the Department of Health.
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