Stigma related to chronic obstructive disease (COPD) and the ways in which the disease is developed may have affected both the provision of healthcare services and the way that research is conducted regarding the disease, according to an expert from the University of Toronto. Even though Andrea Gershon believes that the situation has been corrected over time, smoking is the main cause for developing COPD, leading to patient stigma regarding the disease.
“Unfortunately, I believe that a tendency to blame the patient has contributed to COPD getting less attention than other common chronic diseases,” Andrea Gershon, an assistant professor of medicine at the University of Toronto, said on an interview to David McNamee from the Medical News Today. “There was a belief that, because people with COPD smoked, they were deserving of their fate and not deserving of resources put towards their disease. I think this is wrong on many levels. Luckily, things are changing.”
Gershon recently led a study in which she examined the efficacy of several COPD treatments, as well as determined gaps in research regarding the disease, the results of which were recently published at the JAMA journal. Even though the disease is the third leading cause of death in the United States, only a small amount of data exists on how to effectively treat COPD patients, especially older patients, as well as patients suffering from other respiratory conditions, like asthma.
The research led by Gershon enrolled 2,129 older adults who were being treated for COPD with long-acting beta agonists, and compared their administrative health records with the ones from 5,594 adults who were prescribed both long-acting beta agonists and corticosteroids. She concluded that the second group registered eight percent fewer hospitalizations and deaths than the first one, a discrepancy that she classified as “modest but significant.”
But the divergence was more significant in patients suffering from both COPD and asthma, as the ones being treated with two medications registered a lower risk of 16 percent regarding hospitalizations and death, in comparison with the first group. In addition, the researcher noted that from the participants in the study, more than quarter suffered from both asthma and COPD, patients that were commonly excluded from trials, since physicians did not “really known how to treat these patients,” she explained.
“I believe this was because the effectiveness of interventions in people with COPD would be known with more certainty, for instance, without having to wonder if an intervention was effective because it was treating another disease, like asthma, that was also present. While this approach has its merits, it means that many patients with both COPD and asthma were excluded. As a result, there is little evidence on which to base our treatment recommendations for these patients,” Gershon added.
The COPD Foundation is also concerned about the stigma associated with COPD patients, and points out the fact that all diagnoses start with the question “did you smoke?” “So much is insinuated in three simple words, and so many in our community have to withstand the stigma associated with the disease. All too often, people with COPD are afraid to reach out for help, let alone raise awareness for the disease, because they believe in the end they will be shamed and blamed for smoking,” explains the foundation.
Despite the fact that smoking is the number one cause for COPD, 25 percent of patients were never smokers, according to the numbers of the foundation, since the disease may also be triggered by environmental, occupational, and genetic factors. However, blaming and shaming smokers for their disease is still rooted in society, leading patients to seek methods of disguising it and even avoiding medical help.
Research focused on self-blame and stigmatization among COPD patients, which was published in the Scandinavian Journal of Caring Studies in 2011, revealed that COPD patients reported they no longer belong to a healthy world after they were diagnosed, and that they felt themselves discredited and judged, since they believed people considered COPD as self-inflicted.
“In Western societies, there is now an increasing awareness of personal responsibility for promoting one’s health. This awareness includes possible messages of guilt, and vulnerable individuals’ well-being can potentially be threatened if they feel discredited because of their illness,” the authors of the study wrote.
Other features were noted as unpleasant, including the insistence of health care providers to emphasize patients’ smoking habits, or public campaigns, which identified COPD patients as tobacco addicts. Feeling pressured, patients reported that they often avoided experiences that may reveal the condition. Therefore, patients tend to hide it from other people, and even avoid medical help, according to the results of the research.
“I think a lot of the COPDs who still smoke do harbor certain emotions that make it impossible to relax. They blame themselves and get angry with anyone who tries to influence their smoking. It gets on their nerves, because they know smoking is wrong. They kind of isolate themselves due to the feeling of being losers, because they think of themselves as having failed,” one of the participants in the study said.