COMMENTARY

A Patient Charter for Chronic Obstructive PulmonaryDisease

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 / Published online: November 27, 2020� The Author(s) 2020

ABSTRACT

Chronic obstructive pulmonary disease (COPD)has a profound impact on people living withthe disease and has a high global economic andsocial burden. Often, people with COPD areundiagnosed, while those diagnosed are under-treated and undereducated on different aspects

of COPD care. Although there are many pub-lished evidence-based treatment guidelinesfrom different expert groups and societies, theyare frequently not adhered to, which results insignificant gaps in care. In particular, ‘flare-ups’(known as exacerbations of COPD), whichaccelerate disease progression, are often under-reported, despite guidelines recommending anescalation of maintenance treatment to preventsubsequent flare-ups. Management of COPDshould be proactive to prevent worsening ofsymptoms and to reduce the risk of future flare-ups and premature death, rather than a sec-ondary reaction to a worsening health status.Key to this is patient access to accurate diag-nosis, effective treatment and specialist care,which can vary widely due to socioeconomicdifferences, geographical locations and poorguideline implementation. In addition, thestigma associated with COPD can act as a bar-rier, which can result in people being reluctantto access treatment or clinicians being nihilistic.As global patient advocates, we have co-devel-oped this patient charter to set a standard ofcare that people living with COPD shouldexpect, raising awareness and understanding ofthe causes and consequences of COPD as well asthe potential to improve patient care. Patientswith COPD should be empowered to live thehighest quality of life possible with the leastnumber of flare-ups. We set out six principles inline with current COPD guideline recommen-dations, that should be implemented by

J. R. Hurst (&)UCL Respiratory, University College London,London, UKe-mail: j.hurst@ucl.ac.uk

T. WindersAllergy and Asthma Network, Global Allergy andAirways Patient Platform, Vienna, VA, USA

H. WorthVice-Chairman of the German Airways League,Specialists Forum, Furth, Germany

M. BhutaniDivision of Pulmonary Medicine, Department ofMedicine, University of Alberta, Edmonton, AB,Canada

K. Gruffydd-JonesBox Surgery, Box, Corsham, Wiltshire, UK

D. StolzClinic of Respiratory Medicine and Pulmonary CellResearch, University Hospital Basel, Basel,Switzerland

M. T. DransfieldDivision of Pulmonary, Allergy, and Critical CareMedicine, Lung Health Center, The University ofAlabama at Birmingham, Birmingham, AL, USA

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governments, healthcare providers, policymak-ers, lung health industry partners andpatients/caregivers to drive meaningful changein COPD care.

Keywords: Caregivers; Chronic obstructivepulmonary disease; Patient advocacy; Patientcare; Quality of life; Socioeconomic factors;Treatment outcome

Key Summary Points

Why provide this perspective piece?

Although there are many publishedevidence-based treatment guidelines forCOPD from different expert groups andsocieties, they are not always adhered to,which results in significant gaps in care.

In particular, ‘flare-ups’ (known asexacerbations of COPD), which canaccelerate disease progression, are oftenunder-reported or untreated, despiteguidelines recommending an escalation oftreatment to prevent subsequent flare-ups.

What can be learned from thisperspective piece?

Management of COPD should be proactiveto prevent worsening of symptoms,frequent flare-ups and premature death,rather than a secondary reaction to aworsening health status.

Key to this is patient access to effectivediagnosis, treatment and specialist care,which can vary widely due tosocioeconomic differences, geographicallocations and poor guidelineimplementation.

As global patient advocates, we havedeveloped this patient charter to set astandard of care quality that patientsliving with COPD should expect, to raiseawareness and to improve outcomes.

DIGITAL FEATURES

This article is published with digital features,including a summary slide, to facilitate under-standing of the article. To view digital featuresfor this article go to https://doi.org/10.6084/m9.figshare.13241684.

INTRODUCTION

Chronic obstructive pulmonary disease (COPD)is a progressive lung condition characterised bypersistent respiratory symptoms (shortness ofbreath, chronic cough and sputum production)and impaired lung function. Patients alsoexperience ‘flare-ups’ (known as exacerbationsof COPD), which are a period of acute worsen-ing of symptoms that can accelerate diseaseprogression, markedly worsen quality of life,and, when severe, lead to hospitalisation andeven death. The severity of symptoms, lungfunction impairment, impact on daily life andfrequency of flare-ups vary considerablybetween patients and are driven by numerousfactors [1, 2]. In addition, it has been estimatedthat 70% of cases of COPD worldwide may beunderdiagnosed [3], while COPD managementoften does not follow treatment guidelines[4–7].

COPD is estimated to affect 384 millionpeople worldwide [8] and is the third leadingcause of global death [9], impacting high-,middle- and low-income countries (Fig. 1) [10].In addition, the burden of COPD is growing: In2015, 3.2 million people died from COPDworldwide, an increase of nearly 12% comparedwith 1990 [11]. COPD therefore places a signif-icant burden on the global economy, of whichdirect medical costs account for 61–86%[2, 12, 13]. Indirect costs, such as lost produc-tivity, are significant in COPD, as many peoplesuffer with the disease for years, often develop-ing further chronic conditions that can add tothe suffering and result in early death [2].

A number of guidelines and strategy docu-ments that define best practice in COPD carebased on the latest evidence (including thosefrom the Global Initiative for ChronicObstructive Lung Disease (GOLD) [2], the

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American Thoracic Society [14], the EuropeanRespiratory Society [15] and the CanadianThoracic Society [16]) are available. However,further enhancements in the diagnosis andtreatment of COPD are required [17], along withsignificant improvements in guidelineimplementation.

We, as clinicians and representatives ofpatient support groups, have developed a COPDpatient charter comprising six principles ofquality care that patients should expect toreceive, wherever they live. The purpose of thischarter is to mobilise governments, healthcareproviders, policymakers, lung health industrypartners and patients/caregivers to address theunmet need and burden in COPD, ultimatelyworking together to deliver meaningfulimprovements in care, both now and in thefuture.

This article does not contain any studieswith human participants or animals performedby any of the authors.

DEVELOPING THE PATIENTCHARTER

Representatives of three national patientorganisations along with seven clinicians dis-cussed the value of establishing a patient char-ter as a potential starting point for discussionson how to reform care for patients with COPD.This patient charter was subsequently initiatedby AstraZeneca and aims to set a standard forwhat people living with COPD should expectfrom their ongoing care. These expectations arein line with the current best practice under-standing from existing COPD guidelines andaim to offer a consensus on global standards ofCOPD care while driving timely, evidence-basedtreatment to maintain health status, minimisesymptoms and prevent flare-ups.

The three patient organisations involved areall members of the Global Allergy and AsthmaPatient Platform and are dedicated to COPDawareness, education and advocacy; together,their memberships cover more than 50 millionpatients with COPD across the USA, the UnitedKingdom and Spain. The principal concepts

Fig. 1 Top 20 countries with the highest number ofCOPD deaths per million per year, 2001–2010; COPDchronic obstructive pulmonary disease (Modified withpermission from British Lung Foundation, number of

COPD deaths per million per year by country, 2001–10figure. Available from https://statistics.blf.org.uk/copd,accessed 11 November 2020)

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https://statistics.blf.org.uk/copd

were developed by a working group of 20 clin-icians and patient representatives, and weredebated and refined during a discussion held on15 May 2020, organised and funded byAstraZeneca.

Principle 1: I Deserve Timely Accessfor the Diagnosis and Assessment of MyCOPD

Symptoms in the early stages of COPD may beabsent or mild and are not well recognised bypatients, who often assume their symptoms area result of ageing or of exposure to cigarettesmoke or other irritants [18]. As such, COPD isoften diagnosed at a more advanced stage,when it is associated with more severe symp-toms, increased risk of flare-ups and an increasein other chronic conditions and costs [19]. Inaddition, although individual rates of lungfunction decline vary widely [1, 20], a morerapid decline occurs in those with mild andmoderate COPD than with severe/very severeCOPD [20–22]. While almost 90% of cases ofCOPD may be undiagnosed worldwide [23],people who were defined as having COPDaccording to their impaired lung function, butwere not diagnosed by a clinician, were shownto use healthcare services for their symptoms tothe same extent as diagnosed people but with-out being properly managed and treated [24].Consequently, undiagnosed COPD places asignificant burden on people and the healthcaresystem.

COPD symptoms are known to have daily,weekly and seasonal variability [25]; peoplehave reported that the morning is the worsttime of day for symptoms of COPD, with coughand sputum production being most trouble-some [26, 27]. In addition, night-time symp-toms and sleep disturbance are common, yetunder-recognised, and can lead to long-termchanges in lung function, frequency of flare-ups, risk of heart disease, mental function,depression, quality of life and death [28, 29].Therefore, in order for people to better recog-nise the symptoms of COPD, it is vital toincrease awareness of the types and timings ofsymptoms that may occur.

Currently, a diagnosis of COPD can only beconfirmed using spirometry, a physiological testto assess the presence of poorly-reversible air-flow limitation, which should be performed andinterpreted by trained individuals [2]. However,it is estimated that only one-third of peoplenewly diagnosed with COPD have spirometryperformed [30]. In addition, not only are thereother causes of airflow limitation but peoplewithout airflow limitation can have smoking-related lung disease (such as emphysema), maybe at risk of flare-ups [31] and may benefit fromCOPD therapies. Aside from stopping smoking,there are no therapies definitively proven toaffect the rate of change in lung function inpeople with COPD [32], but it is possible toimpact symptoms and quality of life and toprevent flare-ups and early death. As such,spirometry alone is not sufficient to informtreatment decisions and should be used along-side other tools, including diaries, that measureand record symptoms and flare-ups, includingthe modified Medical Research Council ques-tionnaire and COPD assessment test [2].Patients and healthcare professionals shouldhave access to, and use, the tools required tosupport them to recognise the initial symptomsof COPD, and have access to the right resourcesto make an informed and accurate diagnosis.

Principle 2: I Deserve to Understand WhatHaving COPD Means for Me and Howthe Disease May Progress

COPD is a highly variable disease, which can beclinically categorised based on symptom sever-ity and history of flare-ups [2]. However,symptoms may change or worsen over time andcan lead to more frequent and more severe flare-ups. People with COPD can also have otherdiseases such as heart disease, which furthercontribute to reduced quality of life and worsedisease course [33, 34]. These factors shoulddrive a change in how the condition is managedthrough both pharmacological (i.e. medication)and non-pharmacological means (e.g. exercise,education and stopping smoking).

With increasing demand for COPD services,it is important for patients to become active

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participants in their own care. Self-managementinterventions in people with COPD are associ-ated with improved health-related quality oflife, a reduction in hospital admissions andimprovement in symptoms [35]. At an individ-ual patient level, this is not just understandingabout disease progression, but a broader con-cept regarding what having COPD means,understanding their current disease state, theexpectations of worsening disease and whatthat would mean for day-to-day life. It is likelythat greater understanding of the consequencesof the disease would improve patient engage-ment with their treatment regimen, andencourage them to raise their expectationsabout how their life could and should be, withaccess to the right tools and the right treatmentat their disposal. Patients should receive per-sonalised education and training about theirCOPD, and how it interacts with any otherdiseases that they may have, to enable them toactively participate in their own care, learn todetect and react to changes in symptomsaccording to their personalised action plans andreport changes to their healthcare professionalto prevent further disease progression. Toenhance patient engagement, this educationcould be delivered not only by healthcare pro-viders but also through patient supportgroups/societies, online resources and the pro-vision of the latest clinical research in the formof plain language summaries.

Principle 3: I Deserve Access to the BestAvailable Evidence-Based, PersonalisedTreatment, to Ensure I can Live as Welland as Long as Possible

Goals for the treatment of COPD are based onreducing symptoms and the risk of future flare-ups, prevent lung function decline and prema-ture death (Fig. 2) [2]. Many therapies have beenshown to be beneficial across these goals,including suggestions of reduced mortality[36–39]. However, many gaps exist in both thenon-pharmacological and pharmacologicaltreatment of COPD, with access to smokingcessation support, vaccinations and pulmonaryrehabilitation often difficult to obtain [40].

Over two-thirds of people diagnosed withCOPD are not prescribed maintenance inhaledtherapy [41] and, of those receiving treatment,up to three-quarters of people who experiencetwo or more flare-ups continue to be under-treated according to GOLD recommendations[42]. Conversely, pharmacological overtreat-ment has been found in approximately one-third of people, with non-pharmacologicaltreatment used too rarely [6].

Undertreatment and overtreatment of COPDcan happen for several reasons. Lack of clinicianeducation can contribute to treatment guideli-nes not being followed and/or poor knowledgeof new treatments. Access to specialist care isvital in this respect. For example, patient accessto care in the USA varies widely, and healthcaresystems struggle to meet their goals forimproving COPD burden [43]. In addition, it isessential that people are appropriately diag-nosed and that their treatment regimen isreviewed regularly and escalated quickly, ifneeded. Thus, people with COPD shouldrequest an evidence-based and personalisedmanagement plan with the treating clinician atboth the initial diagnosis and follow-up, toenable a more proactive, timely prevention ofdisease progression, rather than reacting to aworsening of health status.

GOLD recommends that the management ofCOPD should include five steps: diagnosis, ini-tial assessment, initial management, review andadjustment (Fig. 3) [2]. Diagnosis is based onsymptoms, risk factors and measurement of

Fig. 2 Goals for the treatment of COPD; COPD chronicobstructive pulmonary disease (Reproduced with permis-sion from Global Initiative for Chronic Obstructive LungDisease 2020 Report; Table 4.1. Available from https://goldcopd.org/gold-reports/, accessed 11 November 2020)

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airflow limitation. This is followed by the initialassessment, which delves further into thespecific details of the disease, such as history offlare-ups, smoking status and other illnesses.The initial management involves steps includ-ing encouraging stopping smoking, lifestylemodifications and non-pharmacological andpharmacological treatment, among others. Thisis followed by regular and repeated review ofpatients’ disease and health status, followed byadjustment of both pharmacological and non-pharmacological treatment, as required [2]. It isthis proactive, regular review and adjustment oftreatment that is key to effective managementof the disease and ensures that each individual

can maximise their potential to live as normal alife as is possible.

Principle 4: I Deserve an Urgent Reviewof My Current Management Plan If IExperience a Flare-Up, to Prevent FurtherFlare-Ups and Disease Progression

Although many people with COPD experienceflare-ups, over half of flare-ups go unreported[44]. Hospitalisations resulting from severeflare-ups account for approximately two-thirdsof all healthcare costs associated with COPD[45], and frequent moderate (community-trea-ted) flare-ups, or one severe (hospitalised) flare-up, significantly increase the risk of death [46].

Fig. 3 Management of COPD; CAT COPD assessmenttest, COPD chronic obstructive pulmonary disease, FEV1forced expiratory volume in 1 s, GOLD Global Initiativefor Chronic Obstructive Lung Disease, mMRC modifiedMedical Research Council dyspnoea score, NIV non-invasive ventilation (Reproduced with permission from

Global Initiative for Chronic Obstructive Lung Disease2020 Report; Fig. 4.1. Available from https://goldcopd.org/gold-reports/, accessed 11 November 2020)

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In addition to this, flare-ups are associated withan increased risk of complications, such as heartattacks and strokes [47]. Flare-ups also appear tohave a significant impact on mental and emo-tional well-being and this may be underesti-mated by clinicians [48]. Thus, flare-ups have adetrimental impact on both patients andsociety.

Despite this, medical review after a flare-up issuboptimal. Studies have estimated that onlyone-quarter of people receive adequate treat-ment to prevent or reduce symptoms after anflare-up [49] and that over half of flare-ups gounreported [44]. Government policymakers andhealthcare professionals should appreciate thesignificant burden associated with COPD andensure that flare-ups trigger an immediatereview of the chronic treatment and diseasemanagement. A shift is needed toward aproactive, evidence-based approach to treat-ment to maintain health status, minimisesymptoms and prevent future flare-ups, asopposed to waiting for disease deteriorationbefore review.

Principle 5: I Deserve Access to SpecialistCare When Needed (Whether Providedin Hospital or in the Community)to Manage My COPD, Irrespectiveof Where I Live

Specialist care refers to care provided by ahealthcare professional who has the expertskills and understanding of COPD required toprovide appropriate care. Staffing levels and theavailability of a specialist respiratory review islinked to reduced risk of death and quality ofservice in COPD [50, 51]. In one study, peoplewho received specialist review within 24 h ofadmission to hospital for a severe flare-up were14% less likely to die as an inpatient comparedwith those who did not receive specialist review[52]. Similarly, barriers exist in access to outpa-tient specialist COPD services and pulmonaryrehabilitation. This is mainly attributed to lim-ited resources and underfunding, particularlywithin rural areas [53], with one study estimat-ing that only 35% of adults in rural areas of theUSA had access to specialist care within 10 miles

(16 km), and residents of many counties in theMidwest had no access to a specialist carewithin 50 miles (80 km) [54]. The developmentof a proactive, planned-care orientation toempower patients and families to collaborateactively with the healthcare team may improvethis situation [55].

With the increasing availability of smart-phones and other digital technologies, includ-ing remote consultations, COPD should becomea benchmark of how such technologies canimprove current services and enable the provi-sion of tailored, specialist care, regardless ofwhere a person lives. A systematic review andmeta-analysis of the effect of smartphoneinterventions on people with COPD found an80% reduction in the odds of experiencing aflare-up in people using smartphone interven-tion compared with usual care [56]. Althoughthe patient numbers involved were small andthere was variability between studies, thesefindings suggest a potential for smartphoneinterventions to reduce the frequency of COPDflare-ups; thus, further investigation is war-ranted. However, as many people with COPDmay not have access to such technology, it isvital that its use does not exaggerate healthinequalities.

Principle 6: I Deserve to Live with COPDFreely While Maximising Quality of LifeWithout Stigma or Guilt

Worldwide, the most common risk factor forCOPD is tobacco smoking [2] and, as a result,there is a stigma that it is largely self-inflictedcondition of the older population. Due to thisstigma, many people experience self-blame,guilt and shame [57]. People with COPD alsodescribe feeling stigmatised by healthcare pro-fessionals in some cases, which can lead to areluctance to access treatment [58]. By way ofcomparison, although people with lung cancerexperienced similar self-blame and guilt, theydid not feel stigmatised by healthcare profes-sionals and did not describe themselves as beingundeserving of treatment [58].

It is becoming increasingly clear that smok-ing is only one of a number of risk factors linked

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with COPD, others include indoor (household)and outdoor air pollution, occupational expo-sure to dust and gases, burning of solid fuels,socioeconomic status and poverty, genetic pre-dispositions, abnormal lung development andaccelerated ageing [2, 59–63]. Healthcare pro-fessionals, patients and the general publicshould therefore be educated about thenumerous risk factors associated with COPD inorder to reduce the associated stigma of thecondition, ensuring that people are not dis-couraged from seeking help.

DISCUSSION

The global burden of COPD on patients andsociety is substantial. Despite this, standards ofcare and appropriate funding can vary widely,and many people do not have adequate accessto accurate timely diagnosis and optimal treat-ment and management programmes. There is aneed to raise the levels of patient education andexpectations of diagnosis, treatment and theopportunities to maximise quality of life, ratherthan people accepting their current disease andsymptom status as something they have to livewith.

The current approach to COPD managementof responding to treatment failure is

inadequate. Through empowering patients andfamilies to collaborate actively with thehealthcare team, COPD management should betransformed into a planned-care approach ofpro-active review and adjustment [55]. This mayneed to include redesigning healthcare deliverysystems to provide same-day primary careappointments, common clinical informationsystems accessible to multiple users, decisionsupport procedures for clinicians and remotespecialist consultations. Furthermore, patientactivation and education, including self-man-agement skills, will enable people to take care ofthemselves in between healthcare visits withinthe community in which they live [64, 65].Brought together, this might improve efficien-cies for both patients and the healthcare systemand make the treatment and management ofCOPD more cost effective.

To implement these principles, we recom-mend the continual and regular review of eachindividual’s treatment regimen and following aflare-up, as indicated in the GOLD guidelines[2]. Flare-ups of COPD are common, but ade-quate treatment is only received by a minorityof people. It is becoming increasingly clear thateven one flare-up can have a significant impacton disease burden, long-term outcomes and thelikelihood of future flare-ups. As flare-ups

Fig. 4 Key recommendations of the COPD patient charter; COPD chronic obstructive pulmonary disease

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generally occur outside of the regular reviewcycle, treatment options should be reviewedimmediately following a flare-up and escalatedas necessary and, in the event of a severe flare-up that results in hospitalisation, patientsshould not be released without a written actionplan, agreed by both the patient and the treat-ing clinician. Treatment should be furtherreviewed to ensure treatment optimisation withthe risk of further flare-ups being reduced fol-lowing any treatment escalation. The key rec-ommendations of our COPD patient charter areoutlined in Fig. 4.

CONCLUSION

As global patient advocates, we believe it isessential to raise the level of awareness andunderstanding among patients, caregivers,healthcare professionals, policymakers and thepublic about the impact of COPD and oppor-tunities to reform and improve patient care. Theprinciples we have set out in this COPD patientcharter are the core elements of quality care thatpeople with COPD should expect to receive. Weurge policymakers and stakeholders to use theseprinciples to build consensus on the care ofpatients with COPD.

ACKNOWLEDGEMENTS

The authors wish to thank all members of thepatient support groups along with the cliniciansand patient representatives involved in thedevelopment of this Patient Charter, namely DrMohit Bhutani, Professor Jaime Correia deSousa, Dr Mark Dransfield, Lilliya Gentet, DrKevin Gruffydd-Jones, Professor MeiLan Han,Nicole Hass, Professor John Hurst, Dr FernandoMartinez, Dr Marc Miravitlles, Susanna Palko-nen, Dr Rudi Peche, Henry Roberts, ProfessorNicolas Roche, Debbie Roots, Professor DaianaStolz, Jamie Sullivan, Dr Hendrik Watz, TonyaWinders and Dr Heinrich Worth.

Funding. This work and the journal’s RapidService and Open Access Fee were supported byAstraZeneca.

Medical Writing and Editorial Assis-tance. Medical writing support, under thedirection of the authors, was provided byRichard Knight, PhD, of CMC Connect,McCann Health Medical Communications andwas funded by AstraZeneca, Gaithersburg, USAin accordance with Good Publication Practice(GPP3) guidelines [66].

Authorship. All named authors meet theInternational Committee of Medical JournalEditors (ICMJE) criteria for authorship for thisarticle, take responsibility for the integrity ofthe work as a whole, and have given theirapproval for this version to be published.

Disclosures. None of the authors werecompensated for the development of thismanuscript. John R Hurst has received supportto attend meetings and payment (personal andto his employer) for educational and advisorywork from pharmaceutical companies includingAstraZeneca, Boehringer Ingelheim, GSK,Novartis and Pfizer that make medicines to treatCOPD. TonyaWinders is the President of GlobalAllergy and Airways Patient Platform (GAAPP),and under a compensatory agreement serves inan advisor capacity only to AstraZeneca inasthma and COPD to support unbranded dis-ease awareness and education. Heinrich Worthhas received speaking and consulting fees fromAstraZeneca, Berlin Chemie, Chiesi,GlaxoSmithKline, Klosterfrau, MSD, Novartisand Omron. Mohit Bhutani has receivedspeaking and consulting fees from AstraZeneca,Boehringer Ingelheim, GlaxoSmithKline,Novartis, Pfizer, Sanofi Genzyme, Grifols andgrants from AstraZeneca, Boehringer Ingelheim,Canadian Institutes of Health Research,GlaxoSmithKline and Novartis outside of thiswork. Kevin Gruffydd-Jones has receviedspeaker fees and honoraria for consultancy workfrom Boehringer Ingelheim, GlaxoSmithkline,AstraZeneca, Napp, TEVA, Chiesi, Nutricia andNovartis. Daiana Stolz has received speakingfees from Novartis, AstraZeneca,

Adv Ther (2021) 38:11–23 19

GlaxoSmithKline, Roche, Zambon, Pfizer andSchwabe Pharma. Her institution has receivedunrestricted research grants from AstraZeneca,Curetis, Boston Scientific, Circassia Pharma-ceuticals and Swiss National Foundation. MarkT Dransfield has received grant support fromthe American Lung Association, Department ofDefense and NIH; personal fees from AstraZe-neca, Boehringer Ingelheim, PneumRx/BTG,Quark Pharmaceuticals, TEVA and GSK; andcontracted clinical trial support from Boehrin-ger Ingelheim, AstraZeneca, Yungjin, PneumRx/BTG, Pulmonx, Boston Scientific, Gala, Nuvairaand GSK.

Compliance with Ethics Guidelines. Thisarticle does not contain any studies withhuman participants or animals performed byany of the authors.

Open Access. This article is licensed under aCreative Commons Attribution-NonCommer-cial 4.0 International License, which permitsany non-commercial use, sharing, adaptation,distribution and reproduction in any mediumor format, as long as you give appropriate creditto the original author(s) and the source, providea link to the Creative Commons licence, andindicate if changes were made. The images orother third party material in this article areincluded in the article’s Creative Commonslicence, unless indicated otherwise in a creditline to the material. If material is not includedin the article’s Creative Commons licence andyour intended use is not permitted by statutoryregulation or exceeds the permitted use, youwill need to obtain permission directly from thecopyright holder. To view a copy of this licence,visit http://creativecommons.org/licenses/by-nc/4.0/.

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A Patient Charter for Chronic Obstructive Pulmonary DiseaseAbstractDigital FeaturesIntroductionDeveloping the Patient CharterPrinciple 1: I Deserve Timely Access for the Diagnosis and Assessment of My COPDPrinciple 2: I Deserve to Understand What Having COPD Means for Me and How the Disease May ProgressPrinciple 3: I Deserve Access to the Best Available Evidence-Based, Personalised Treatment, to Ensure I can Live as Well and as Long as PossiblePrinciple 4: I Deserve an Urgent Review of My Current Management Plan If I Experience a Flare-Up, to Prevent Further Flare-Ups and Disease ProgressionPrinciple 5: I Deserve Access to Specialist Care When Needed (Whether Provided in Hospital or in the Community) to Manage My COPD, Irrespective of Where I LivePrinciple 6: I Deserve to Live with COPD Freely While Maximising Quality of Life Without Stigma or Guilt

DiscussionConclusionAcknowledgementsReferences