Stigma and lung disease: what we can do

Lung disease affects one in three Australians and one in seven deaths is a result of lung disease.^1,2 Health professionals need to be aware of the symptoms of lung disease and the incidence of people presenting both with and without risk factors. About one-fifth (21%) of people with lung cancer are lifelong nonsmokers (Box 1).³ To this end, Lung Foundation Australia offers training and resources for health professionals to ensure best-practice diagnosis, treatment and care for their patients (Box 2). Lung disease has never been a simple issue, and it is Lung Foundation Australia’s belief that widespread negative attitudes and social stigma surrounding people with lung disease are significant barriers to improving outcomes.

In 2017, Lung Foundation Australia commissioned a nationally-representative survey to learn more about the stigma associated with lung cancer in particular, as well as lung disease generally, and to gain a deeper understanding of the key issues facing the patient and carer communities.⁴

Stigma and lung cancer

The survey results showed that more than one-third of Australians (35%) consider that people living with lung cancer are ‘their own worst enemy’ and ‘have only themselves to blame’. One in 10 Australians believe that those with lung cancer ‘got what they deserved’, were ‘disgusting’ and ‘filthy’. Further, despite one in three women and one in 10 men diagnosed with lung cancer having no history of smoking, the first question almost 40% of Australians would ask someone diagnosed with lung cancer – without first expressing concern – is whether they were a smoker.^4,5 Almost 90% of Australians believe smoking is the only lung cancer risk factor, despite other proven links including genetics, pollution and occupational exposure, for example.⁴ The survey also revealed that 35% of Australians would not speak out if they were diagnosed with lung cancer because of fear of judgement, or at least were uncertain about whether they would disclose their diagnosis. These findings mirrored results found in a global survey conducted in 15 developed countries. Of all populations measured, Australians had the least sympathy for someone diagnosed with lung cancer compared with other cancers, based on its association with tobacco smoking (Figure 1 and Figure 2).^4-6

The individual impact of these prevailing negative attitudes is well documented. Patients with lung cancer delay seeking help, stop treatment early and experience significant psychological and social consequences.⁷ Lung cancer patients, more so than patients with other cancers, feel stigmatised by their disease, increasing their subjective distress and negatively influencing help-seeking behaviours and overall patient outcomes (Box 3).⁵

Healthcare providers’ attitudes can be as negative as those of patients, caregivers and the general public.⁸ Clinicians tend to underestimate the survival rates for different stages of lung cancer and the likely benefits of chemotherapy.^5,9 This is a rapidly evolving therapeutic area; in recent years highly effective treatments have become available and it can be difficult to stay up to date with the latest advancements. An Australian study showed 11% of patients diagnosed with lung cancer did not see a lung cancer specialist and as many as 33% did not receive cancer-specific treatment after the initial diagnosis.¹⁰

A recent systematic review found that lung cancer patients consistently reported health-related stigma, and stigma was related to poorer psychological and quality of life outcomes as well as fears that medical treatment may be futile or even denied.⁷ To date there is little research exploring the barriers to optimal lung cancer care in Australia. However, one Australian study found beliefs among primary care physicians that nonsmokers with lung cancer were more worthy of sympathy; that delays in treatment occur from the investigation of differential diagnoses; and that anti-tobacco messaging highlighting lung cancer deterred smokers from seeking medical advice.¹¹ In late October 2018, Lung Foundation Australia will release a comprehensive research report that delves further into the issues of stigma, equity of access and psychosocial support to reveal the true burden and impact of lung cancer in Australia.

Stigma is a broader issue in lung disease

The issue of stigma is not isolated to lung cancer; it is felt by patients with all lung diseases. The 2017 Lung Foundation Australia survey found that 30% of patients with lung disease felt less deserving of help than people with other medical conditions and 70% said other people assumed they were a smoker or had previously smoked (Figure 3).⁴

Stigma in lung disease does not only affect patients and hinder the efforts of clinicians; it translates into a lack of action in public policy, research and advocacy. For example, on the basis of the level of research funding directed to specific tumour types, lung cancer is clearly underfunded. Despite causing almost 20% of all cancer deaths in Australia (more than breast, prostate and ovarian cancer combined) lung cancer received only 5% of the total funding measured by the Australian Institute of Health and Welfare from 2009 to 2011. This compared with 14% for colorectal cancer, 13% for prostate cancer and 26% for breast cancer.⁵

Conclusion: what we can do

Early diagnosis is key to improving survival rates for people with lung disease, and GPs play a central role in ensuring all Australians, despite their smoking history, receive equitable care and treatment. GPs should be alert to symptoms of lung disease to ensure timely referrals are made for diagnosis and treatment services.    RMT

References