A Patient Charter for Chronic Obstructive Pulmonary Disease

Abstract

Chronic obstructive pulmonary disease (COPD) has a profound impact on people living with the disease and has a high global economic and social burden. Often, people with COPD are undiagnosed, while those diagnosed are undertreated and undereducated on different aspects of COPD care. Although there are many published evidence-based treatment guidelines from different expert groups and societies, they are frequently not adhered to, which results in significant gaps in care. In particular, 'flare-ups' (known as exacerbations of COPD), which accelerate disease progression, are often under-reported, despite guidelines recommending an escalation of maintenance treatment to prevent subsequent flare-ups. Management of COPD should be proactive to prevent worsening of symptoms and to reduce the risk of future flare-ups and premature death, rather than a secondary reaction to a worsening health status. Key to this is patient access to accurate diagnosis, effective treatment and specialist care, which can vary widely due to socioeconomic differences, geographical locations and poor guideline implementation. In addition, the stigma associated with COPD can act as a barrier, which can result in people being reluctant to access treatment or clinicians being nihilistic. As global patient advocates, we have co-developed this patient charter to set a standard of care that people living with COPD should expect, raising awareness and understanding of the causes and consequences of COPD as well as the potential to improve patient care. Patients with COPD should be empowered to live the highest quality of life possible with the least number of flare-ups. We set out six principles in line with current COPD guideline recommendations, that should be implemented by governments, healthcare providers, policymakers, lung health industry partners and patients/caregivers to drive meaningful change in COPD care.

Keywords: Caregivers; Chronic obstructive pulmonary disease; Patient advocacy; Patient care; Quality of life; Socioeconomic factors; Treatment outcome.

Fig. 1

Top 20 countries with the highest number of COPD deaths per million per year, 2001–2010; COPD chronic obstructive pulmonary disease (Modified with permission from British Lung Foundation, number of COPD deaths per million per year by country, 2001–10 figure. Available from https://statistics.blf.org.uk/copd, accessed 11 November 2020)

Fig. 2

Goals for the treatment of COPD; COPD chronic obstructive pulmonary disease (Reproduced with permission from Global Initiative for Chronic Obstructive Lung Disease 2020 Report; Table 4.1. Available from https://goldcopd.org/gold-reports/, accessed 11 November 2020)

Fig. 3

Management of COPD; CAT COPD assessment test, COPD chronic obstructive pulmonary disease, FEV₁ forced expiratory volume in 1 s, GOLD Global Initiative for Chronic Obstructive Lung Disease, mMRC modified Medical Research Council dyspnoea score, NIV non-invasive ventilation (Reproduced with permission from Global Initiative for Chronic Obstructive Lung Disease 2020 Report; Fig. 4.1. Available from https://goldcopd.org/gold-reports/, accessed 11 November 2020)

Fig. 4

Key recommendations of the COPD patient charter; COPD chronic obstructive pulmonary disease