A group of researchers in Manchester and Watford (UK) published an important article on the negative impact of stigmatisation often suffered by people with Chronic Obstructive Pulmonary Disease (COPD).
The article reminds us that as many of 1-in-5 people with COPD have never smoked tobacco. COPD is in fact multi-factorial in its cause, while acknowledging that smoking is the biggest avoidable risk factor.
The use of outdated and derogatory terms when referring to patients who have COPD might also precipitate stigma. Even the choice of the term “rehabilitation”, describing one of the most effective treatments for these patients, was unfortunate, as it carries negative connotations. This term is also used in the recovery programme for patients getting over a heart procedure. There are very few other medical conditions where such labels are used in clinical practice and medical literature or are taught to health-care students when their judgement of patients is easily pliable.
“The presence of noticeable respiratory symptoms that are considered by the public to signify a communicable disease, such as cough, expectoration, and wheeze, undoubtedly adds to the problem.”
“This issue is given a whole new dimension in a post-COVID world, where displaying respiratory symptoms in public more often attracts negative attention from others.”
“For example, other passengers on a bus or train might choose to move away from a person with COPD, and while one can empathise with this behaviour to an extent, it reinforces the belief among people with COPD that they are social outcasts.”
This stigmatisation and bias also has measurable impacts. The authors describe how bias against patients with COPD might also explain why COPD research remains under-funded compared with other conditions that are less stigmatised.
For example, in 2019, COPD received 96% less funding than cancer from the National Institutes of Health (USA), despite accounting for 64% more lost disability-adjusted life-years.
The article explores several ways in which the public and our doctors could reduce stigmatisation and bias, such as:
- Public health campaigns to raise awareness about the features and management of COPD, so that non-COPD members of the public can empathise with patients.
- Without diminishing the importance of smoking as a risk factor, medical training of our future doctors should also emphasise that COPD can have other causes, and that tobacco dependence is a recognised medical condition.
- Championing patient organisations would strengthen peer-to-peer support in the COPD community.
- Psychological support and opportunities to socialise should be provided during pulmonary rehabilitation programmes.
- Perhaps most importantly, clinicians should explore how to improve patient mental wellbeing to stop negative thoughts before they damage mental health. Even the briefest of conversations about a patient’s mental well-being can have a lasting impact.
We fully support the changes suggested. Starting with rebranding the successful and evidence-based programmes which help people living with COPD get well again after a period of ill health. If we renamed these programmes as “Pulmonary Recovery” perhaps more patients might attend.
As our part, our programme is called Active⁺me REMOTE Pulmonary Recovery. The name signifies that this is a patient-led process in which we as patients become activated as expert patients and we increase our levels of physical activity. The term “REMOTE” is used to signify that this can be used alongside, in addition to, or instead of in-person group-based classes, without having to travel to them. Finally, it is about recovery and not rehabilitation, which removes the negative connotations associated with the term “rehabilitation or rehab”.
Aseptika’s products are designed for patients by patients, with expert clinical guidance, clinical assessment and certification as a medical device by the regulatory authorities and developed in line with the new Digital Technology Assessment Criteria (DTAC) developed by the UK’s NHS and National Institute of Health and Care Excellence (NICE).
Original article was written by Alexander G Mathioudakis, Sachin Ananth and Jørgen Vestbo, from the Division of Infection, Immunity and Respiratory Medicine, School of Biological Sciences, The University of Manchester, Manchester Academic Health Science Centre, Manchester, M23 9LT, UK (AGM, JV); The North West Lung Centre, Wythenshawe Hospital, Manchester University NHS Foundation Trust, Manchester, UK (AGM, JV); and West Hertfordshire Hospital NHS Trust, Watford, UK.
The full article can be found at: Lancet Respir Med 2021 Published Online June 28, 2021 https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(21)00316-7/fulltext