That is the message of a report from researchers in New South Wales, Australia, a country with one of the highest per capita rates of malignant mesothelioma in the world.
Experts in public health and behavioral science at the University of Newcastle performed an extensive review of the medical literature for evidence of stigma-related experiences and their potential impact on outcomes in mesothelioma patients and others with NCRDs.
Although they found that the risks of stigma-related experiences were low to moderate in this population (and most prevalent in those with lung cancer), they found that those who did feel stigmatized tended to have worse outcomes.
The Stigma of Respiratory Disease
People with respiratory diseases like pleural mesothelioma may experience or perceive a stigma against them for a number of reasons.
Former smokers who develop lung cancer may suffer psychologically because of their own or the public’s perception that they are responsible for their cancer. People with asthma may be embarrassed by the need to use an inhaler in public.
Since mesothelioma has virtually only one cause – exposure to asbestos – mesothelioma patients may feel the stigma of having been “victimized” by an employer who failed to warn or protect them. If a mesothelioma patient was warned about the danger of asbestos but failed to use adequate protective equipment, he or she may also experience feelings of guilt or shame.
According to the authors of “Stigma-related experiences in non-communicable respiratory diseases”, shame, blame, guilt and stigma have all been shown to negatively impact survival.
“It is therefore important for clinicians to…identify potential patient stigma or related experiences to understand and appropriately discuss concerns sensitively to alleviate the impact,” writes researcher and lead author Shiho Rose.
Emotional Impact of Mesothelioma Still Not Well-Documented
One study included in the Australian review found that people with lung cancer who were also depressed were less likely to follow their treatment plan and, as a result, had worse outcomes.
Although Rose and her colleagues did find some studies pointing to the stigma and associated emotional impact of pleural mesothelioma and other lung diseases, they say more rigorous research on the subject is needed.
“Evidence suggests that patients with a range of NCRDs report feelings of perceived stigma, shame, blame or guilt,” states the report. “However, a comprehensive and current review of the data regarding stigma-related experiences and their broader impacts on a range of respiratory diseases is lacking.”
A separate study conducted in the UK in December 2016 found that “psychological distress”, including feelings of stigma, blame and guilt, is “historically high” in patients with mesothelioma and can impact their care experience.
Rose, S, et al, “Stigma-related experiences in non-communicable respiratory diseases”, Jan 2017, Chronic Respiratory Disease, Epub ahead of print
Ball, H, “A systematic literature review comparing the psychological care needs of patients with mesothelioma and advanced lung cancer”, December 2016, European Journal of Oncology Nursing, pp 62-67