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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: [email protected]
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
Adv Ther (2021) 38:11–23
https://doi.org/10.1007/s12325-020-01577-7
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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
12 Adv Ther (2021) 38:11–23
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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)
Adv Ther (2021) 38:11–23 13
https://statistics.blf.org.uk/copd
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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
14 Adv Ther (2021) 38:11–23
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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)
Adv Ther (2021) 38:11–23 15
https://goldcopd.org/gold-reports/https://goldcopd.org/gold-reports/
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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)
16 Adv Ther (2021) 38:11–23
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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
Adv Ther (2021) 38:11–23 17
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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
18 Adv Ther (2021) 38:11–23
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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
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exceeds the permitted use, youwill need to obtain permission
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Adv Ther (2021) 38:11–23 23
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