A Patient Charter for Chronic Obstructive Pulmonary Disease
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COMMENTARY
A Patient Charter for Chronic Obstructive Pulmonary Disease John R. Hurst . Tonya Winders . Heinrich Worth . Mohit Bhutani . Kevin Gruffydd-Jones . Daiana Stolz . Mark T. Dransfield
Received: October 13, 2020 / Accepted: November 16, 2020 Ó The Author(s) 2020
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 J. R. Hurst (&) UCL Respiratory, University College London, London, UK e-mail: [email protected] T. Winders Allergy and Asthma Network, Global Allergy and Airways Patient Platform, Vienna, VA, USA H. Worth Vice-Chairman of the German Airways League, Specialists Forum, Furth, Germany M. Bhutani Division of Pulmonary Medicine, Department of Medicine, University of Alberta, Edmonton, AB, Canada K. Gruffydd-Jones Box Surgery, Box, Corsham, Wiltshire, UK D. Stolz Clinic of Respiratory Medicine and Pulmonary Cell Research, University Hospital Basel, Basel, Switzerland M. T. Dransfield Division of Pulmonary, Allergy, and Critical Care Medicine, Lung Health Center, The University of Alabama at Birmingham, Birmingham, AL, USA
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 underreported, 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 flareups 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
Adv Ther
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; T
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