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COMMENTARY A Charter to Improve Patient Care in Severe Asthma Andrew Menzies-Gow . G-Walter Canonica . Tonya A. Winders . Jaime Correia de Sousa . John W. Upham . Antje-Henriette Fink-Wagner Received: July 13, 2018 / Published online: September 4, 2018 Ó The Author(s) 2018 ABSTRACT Severe asthma is a subtype of asthma that is difficult to treat and control. By conservative estimates, severe asthma affects approximately 5–10% of patients with asthma worldwide. Severe asthma impairs patients’ health-related quality of life, and patients are at risk of life- threatening asthma attacks. Severe asthma also accounts for the majority of health care expenditures associated with asthma. Guideli- nes recommend that patients with severe asthma be referred to a specialist respiratory team for correct diagnosis and expert manage- ment. This is particularly important to ensure that they have access to newly available biologic treatments. However, many patients with severe asthma can suffer multiple asthma attacks and wait several years before they are referred for specialist care. As global patient advocates, we believe it is essential to raise awareness and understanding for patients, caregivers, health care professionals, and the public about the substantial impact of severe asthma and to cre- ate opportunities for improving patient care. Patients should be empowered to live a life free of symptoms and the adverse effects of tradi- tional medications (e.g., oral corticosteroids), reducing hospital visits and emergency care, the loss of school and work days, and the con- straints placed on their daily lives. Here we provide a Patient Charter for severe asthma, consisting of six core principles, to mobilize national governments, health care providers, payer policymakers, lung health industry part- ners, and patients/caregivers to address the unmet need and burden in severe asthma and ultimately work together to deliver meaningful improvements in care. Funding: AstraZeneca. Enhanced digital content To view enhanced digital content for this article go to https://doi.org/10.6084/ m9.figshare.6979331. A. Menzies-Gow (&) Royal Brompton Hospital, London, UK e-mail: [email protected] G.-W. Canonica Personalized Medicine Asthma and Allergy Center, Humanitas University and Research Hospital, Milan, Italy T. A. Winders Allergy & Asthma Network / Global Allergy & Asthma Patient Platform (GAAPP), Vienna, VA, USA J. Correia de Sousa School of Medicine, ICVS/3B’s–PT Government Associate Laboratory, Life and Health Sciences Research Institute, University of Minho, Braga, Portugal J. W. Upham Diamantina Institute, The University of Queensland, Brisbane, Australia A.-H. Fink-Wagner Global Allergy & Asthma Patient Platform (GAAPP), Vienna, Austria Adv Ther (2018) 35:1485–1496 https://doi.org/10.1007/s12325-018-0777-y

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Page 1: A Charter to Improve Patient Care in Severe Asthma · asthma INTRODUCTION Worldwide, up to 334 million people are esti-mated to be living with asthma [1]. Patients with asthma experience

COMMENTARY

A Charter to Improve Patient Care in Severe Asthma

Andrew Menzies-Gow . G-Walter Canonica . Tonya A. Winders .

Jaime Correia de Sousa . John W. Upham . Antje-Henriette Fink-Wagner

Received: July 13, 2018 / Published online: September 4, 2018� The Author(s) 2018

ABSTRACT

Severe asthma is a subtype of asthma that isdifficult to treat and control. By conservativeestimates, severe asthma affects approximately5–10% of patients with asthma worldwide.Severe asthma impairs patients’ health-related

quality of life, and patients are at risk of life-threatening asthma attacks. Severe asthma alsoaccounts for the majority of health careexpenditures associated with asthma. Guideli-nes recommend that patients with severeasthma be referred to a specialist respiratoryteam for correct diagnosis and expert manage-ment. This is particularly important to ensurethat they have access to newly available biologictreatments. However, many patients with severeasthma can suffer multiple asthma attacks andwait several years before they are referred forspecialist care. As global patient advocates, webelieve it is essential to raise awareness andunderstanding for patients, caregivers, healthcare professionals, and the public about thesubstantial impact of severe asthma and to cre-ate opportunities for improving patient care.Patients should be empowered to live a life freeof symptoms and the adverse effects of tradi-tional medications (e.g., oral corticosteroids),reducing hospital visits and emergency care, theloss of school and work days, and the con-straints placed on their daily lives. Here weprovide a Patient Charter for severe asthma,consisting of six core principles, to mobilizenational governments, health care providers,payer policymakers, lung health industry part-ners, and patients/caregivers to address theunmet need and burden in severe asthma andultimately work together to deliver meaningfulimprovements in care.Funding: AstraZeneca.

Enhanced digital content To view enhanced digitalcontent for this article go to https://doi.org/10.6084/m9.figshare.6979331.

A. Menzies-Gow (&)Royal Brompton Hospital, London, UKe-mail: [email protected]

G.-W. CanonicaPersonalized Medicine Asthma and Allergy Center,Humanitas University and Research Hospital, Milan,Italy

T. A. WindersAllergy & Asthma Network / Global Allergy &Asthma Patient Platform (GAAPP), Vienna, VA, USA

J. Correia de SousaSchool of Medicine, ICVS/3B’s–PT GovernmentAssociate Laboratory, Life and Health SciencesResearch Institute, University of Minho, Braga,Portugal

J. W. UphamDiamantina Institute, The University ofQueensland, Brisbane, Australia

A.-H. Fink-WagnerGlobal Allergy & Asthma Patient Platform (GAAPP),Vienna, Austria

Adv Ther (2018) 35:1485–1496

https://doi.org/10.1007/s12325-018-0777-y

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Keywords: Health care policy; Patientadvocacy; Patient care; Respiratory; Severeasthma

INTRODUCTION

Worldwide, up to 334 million people are esti-mated to be living with asthma [1]. Patientswith asthma experience respiratory symptoms,such as wheezing, shortness of breath, chesttightness, cough, and airway obstruction, thatcan vary over time [2]. Overall, asthma is oftenregarded as a controllable condition, butasthma constitutes a significant public healthproblem across all countries, regardless ofdevelopment level [3]. Asthma varies betweenindividual patients in its underlying diseasemechanisms, the type and intensity of symp-toms, and treatment response [2]. Some sub-types, such as severe asthma, do not fullyrespond to established treatments. In 2010,345,000 asthma-related deaths were reportedworldwide (Fig. 1) [1, 4]. Many of these asthma-associated deaths potentially could have beenprevented with improved patient management,more complete implementation of existingrecommendations, and increased access to spe-cialist care [5–7].

Severe asthma is hard to control and affects5–10% of patients with asthma [8]. This may bea conservative estimate. For many patients withsevere asthma, symptoms do not improve withthe usual standard of care [inhaled corticos-teroids (ICS)], even when medicines are takencorrectly and other potential causes of symp-toms have been ruled out [8]. Therefore, tradi-tional treatments are either less effective forthese patients or must be taken in extremelyhigh dosages, exposing patients to associatedand substantial adverse effects. Patients withsevere asthma also have more frequent life-threatening asthma attacks, which can have adevastating impact on people’s lives [9]. Thestruggle to breathe can be a day-to-day chal-lenge that overshadows much of the sufferer’sdaily activities, potentially resulting in hospitaladmissions, intensive care, and even death[9, 10].

In addition to the burden on the individualwith severe asthma, the disease impacts onhealth systems and society [11]. The relativelysmall severe asthma patient population drives asignificant percentage of health care cost, esti-mated in some countries to be 50% of allasthma-related costs [12]. In other health sys-tems, the care required to treat a patient withsevere asthma can be up to five times moreexpensive than the care required for mildasthma ($1579 vs. $298 US dollars, respectively)[11].

Guidelines written by the American ThoracicSociety (ATS) and the European RespiratorySociety (ERS) in 2014 are recognized as the bestclinical guidance for severe asthma diagnosisand treatment [8]. However, understanding ofthe biology and needs of patients with severeasthma is rapidly evolving, and new treatments(e.g., biologics) are being introduced [13].Approaches to care must reflect these changesand the increasing treatment options available.In response to these changes, we, as represen-tatives of the academic treating community,patient support groups, and professional orga-nizations, have developed a Patient Charter forthe care of patients with severe asthma with sixprinciples for consideration (see Box 1 inAppendix). These principles set out to definewhat patients should expect for the manage-ment of their severe asthma and what shouldconstitute a basic standard of care, in line withthe latest science and best practice under-standing from existing severe asthma careservices.

PRINCIPLE 1: I DESERVE A TIMELY,STRAIGHTFORWARD REFERRALWHEN MY SEVERE ASTHMACANNOT BE MANAGEDIN PRIMARY CARE

Internationally recognized guidelines for themanagement of asthma state that severe asthmais a complex condition that requires input fromexperts to confirm the diagnosis and forappropriate management [6, 8]. However, peo-ple with severe asthma often experience several

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asthma attacks (also known as exacerbations)and admission to emergency departmentsbefore they are referred for specialist care [6, 7].

Some patients spend up to 7 years experiment-ing with different treatments and suffering fromassociated debilitating treatment adverse effects

Fig. 1 Age-standardized asthma mortality rates for asthmaoverall for all ages, 2001–2010 [1]. Average number ofdeaths and average population for each 5-year age groupover the period 2001–2010, using all available data foreach country (the number of available years over this

period ranged from 1 to 10). Reproduced with kindpermission from the Global Asthma Network from:Global Asthma Network. The Global Asthma Report2014. http://www.globalasthmareport.org/resources/Global_Asthma_Report_2014.pdf

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before being referred to a respiratory specialist[6, 9, 14]. Four patient journey phases wereidentified from semistructured in-depth inter-views with a small sample of patients from TheNetherlands diagnosed with severe asthma:‘‘looking for a solution,’’ ‘‘recognition andhope,’’ ‘‘given up,’’ and ‘‘accepting the disease’’(Fig. 2) [15]. During this lengthy journey, severeasthma was reported to dominate patients’lives, making it difficult for them to live thelives they imagined [15]. Shortening the patientjourney is key to improving the health-relatedquality of life for patients with severe asthma.However, it appears that many health careprofessionals do not recognize severe asthma asa distinct form of asthma. They perhaps pre-sume that people with regularly uncontrolledsymptoms have poorly controlled mild/moder-ate asthma caused by poor treatmentadherence.

Patients who present to their general practi-tioner with difficult-to-manage asthma shouldbe adequately assessed using a structuredmethodology, such as the ‘‘SIMPLES’’ approach,before severe asthma is considered and thepatient is referred to a severe asthma specialistclinic [16]. The ‘‘SIMPLES’’ approach, alignedwith cooperation between primary and special-ist care, can avoid inappropriate escalation oftreatment, streamline clinical assessment andmanagement, and optimize patient referrals[16]. Patients and health care professionalsshould also have access to a simple, under-standable set of criteria for identifying severeasthma based on best practice guidance, such asthe ATS/ERS and Global Initiative for Asthma(GINA) guidelines [2, 8]. In general, patientsexperiencing any of the following should bereferred to an expert respiratory physician: oralcorticosteroid (OCS) use for[3 months, morethan two rounds of OCS treatment in the past

Looking fora solution1

Recognitionand hope 2 Given up3

Accepting the disease 4

Patient journey: severe asthma

Start biologicsBiologic works: patient disappearsfrom journey, biologic doesn’t work,patient goes to phase 3 (Given up)

Inta

ke/e

xace

rbat

ion

of c

ompl

aint

s

Per

iod

of h

ospi

taliz

atio

nVi

sit t

o ge

nera

l pra

ctiti

oner

and

poss

ible

adj

ustm

ents

to m

edic

ine

Last

ing

com

plai

nts

Ref

erra

l pul

mon

olog

ist/a

ppoi

ntm

ent

Med

ical

test

s an

d ad

just

men

ts to

trea

tmen

t

Adm

issi

on to

spe

cial

ist

asth

ma

unita

Con

ditio

n pe

rsis

ts

Sto

p w

orki

ng

Dia

gnos

is s

ever

e as

thm

aR

efer

ral t

o un

iver

sity

hos

pita

l

Adm

issi

on to

spe

cial

ist a

sthm

a un

ita

Rep

eat p

erio

d of

find

ing

the

right

co

mpo

sitio

n of

med

icat

ion

(fine

tuni

ng)

Pos

sibl

e cl

inic

al tr

ial p

artic

ipat

ion

Sto

p w

orki

ng

Hav

ing

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uste

d al

l opt

ions

Acc

epta

nce

of s

ituat

ion

(pos

sibl

ead

mis

sion

to s

peci

alis

t ast

hma

unita )

Live

with

sev

ere

asth

ma

(with

ups

and

dow

ns)

Fig. 2 Patient perspective on severe asthma: four phases ofthe patient journey [15]. Results based on semistructuredin-depth interviews with patients (and their relatives) intheir own homes that lasted * 2 h. All patients werediagnosed with severe asthma by a pulmonologist (six

patients were diagnosed with severe allergic disease). Nopatients had a diagnosed comorbidity with symptomssimilar to asthma. aAdmission to Heideheuvel/Davos.Reproduced with kind permission from Beautiful Lives,Hilversum, The Netherlands

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12 months, hospitalization for asthma in thepast 12 months, or impaired lung functiondespite optimized standard therapy.

Education within the health care and patientcommunities on these referral criteria wouldfacilitate rapid referral, and systems already inplace in many health authorities could be usedto automate this process. Studies have reportedthat patients under the care of an asthma spe-cialist have a reduced risk of being hospitalizedfor an asthma attack compared with those beingmanaged by a nonspecialist [6].

PRINCIPLE 2: I DESERVE A TIMELY,FORMAL DIAGNOSIS OF MY SEVEREASTHMA BY AN EXPERT TEAM

An accurate diagnosis is the foundation ofeffective asthma care [2, 6]. An initial diagnosisof asthma usually occurs in primary care, basedon objective testing over a period of time.However, a formal diagnosis of severe asthmarequires a more complex assessment followingreferral to a respiratory specialist [6]. Part of thereason why a diagnosis of severe asthma iscomplex is the lack of a clear and consistentlyused definition of severe asthma. Definitions ofsevere asthma have historically been based onthe degree of symptoms, but newer guidanceconsiders the treatment required to attain con-trol. According to international guidelines,asthma is considered severe if, despite theelimination of modifiable factors (e.g., poorinhaler technique/adherence, persistent envi-ronmental exposure to disease triggers), itrequires high-dosage ICS plus a second con-troller with or without oral OCS to prevent itfrom becoming uncontrolled or if it remainsuncontrolled despite this treatment [2].

It is recommended that a diagnosis of severeasthma should be completed by a specialistmultidisciplinary team (MDT) with access to theappropriate resources [6, 7, 17]. However, priorto referral, patients presenting with uncon-trolled asthma in primary care initially shouldbe assessed to ensure that their symptoms donot remain uncontrolled because of factorsother than severe disease [2]. It should first bedetermined if patients are taking their

prescribed medication properly, with goodinhaler technique. The presence of uncon-trolled comorbid conditions that may reducethe effectiveness of asthma medications (e.g.,chronic sinusitis, obesity, gastroesophagealreflux disease) should also be investigated [2].Measures to improve the accuracy of diagnosisfor patients with mild and moderate asthmaand persistent symptoms caused by poor medi-cation adherence or triggers other than asthmawould also help to ensure appropriate use ofspecialist care [6].

In other conditions, such as rheumatoidarthritis, cardiovascular disease, and cancer,there are clear referral pathways and set waitingtime targets to ensure rapid diagnosis [18, 19].Establishing similar targets and clear referralpathways for patients with asthma would helppatients receive an accurate, early diagnosis andappropriate treatment.

PRINCIPLE 3: I DESERVE SUPPORTTO UNDERSTAND MY TYPEOF SEVERE ASTHMA

Although severe asthma is complex [20], scien-tific understanding of the disease is progressingrapidly. The existence of disease subtypes andthe complexity of the causes of severe asthma,including genetic, allergic, and environmentalfactors, contribute to the requirement for tai-lored specialist care [9]. Different subtypes ofthe disease (known as phenotypes and endo-types) have been characterized based onpatients’ underlying disease mechanisms, trig-gers, and responses to treatment (Table 1). Somebiologic markers (substances that can identifydisease processes) have also been identified thatcan accurately characterize the underlying cau-ses of a patient’s disease and how it should bemanaged [9, 21]. Thus, the treatment of asthma,and particularly severe asthma, has moved awayfrom the established trial-and-error, step-upmethod of treatment and toward a more per-sonalized approach [22]. This follows the trendtoward personalized medicine in other diseases.Patients with cancer, for example, increasinglyreceive treatment with therapies targeted at thecharacteristics of their cancer cells, as opposed

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to traditional chemotherapy, which uses drugsthat are toxic to many cells besides cancer cells[23].

The published European Charter of Patients’Rights states, ‘‘Each individual has the right tofreely choose from among different treatmentprocedures and providers on the basis of ade-quate information’’ [24]. Patients should receiverelevant information from his or her health careprofessional in a simple and clear format tobetter understand the treatment options avail-able and the consequences of different man-agement approaches. Such provision representsa definite unmet need for patients with severeasthma [22].

PRINCIPLE 4: I DESERVE CARETHAT REDUCES THE IMPACTOF SEVERE ASTHMA ON MY DAILYLIFE AND IMPROVES MY OVERALLQUALITY OF CARE

Severe asthma differs from mild and moderateasthma, in part because the patient experienceis much worse. Symptoms can affect relation-ships, careers, parenting, and social lives, andsometimes patients’ abilities to undertake themost basic daily tasks [25]. Patients with severeasthma also have more frequent life-threateningasthma attacks, resulting in hospital admissionand potentially death [9]. Furthermore, the

Table 1 Summary of recognized asthma subtypes (endotypes and phenotypes) based on disease characteristics, treatmentresponse, and disease mechanisms

Description Markersassociated withthe disease

Diseaseonset

Clinical features

Allergic asthma Blood IgE [36] Early/

childhood

[37]

Genetic tendency to develop allergies is associated with all

asthma types, but prevalence is increased in those with early

onset [37]

Eosinophilic

asthma

Eosinophils (IL-5)

[38]

Late/adult

[39]

Blood/sputum eosinophil count is a predictive biomarker for

increased severity of asthma attacks [40]

Targeting eosinophils may improve asthma control [39]

Aspirin-exacerbated

respiratory

disease

Eosinophils, also

IgE

Late/adult Often severe and exhibits sinusitis and nasal polyposis

Presents as an NSAID allergy

May be genetic [41]

Neutrophilic

asthma

Neutrophils (IL-8) Late/adult

[42]

Neutrophils in the airways are associated with reduced lung

function and thicker airway walls [42]

Typically experienced by patients treated with corticosteroids,

limited management options [42]

Obesity-associated

asthma

Lack of biomarkers

[42]

Late/adult Poor response to corticosteroid therapy [43]

Weight loss may improve symptoms [44]

Exercise-induced

asthma

Cytokines,

leukotrienes

Early Presents intermittently with strenuous exercise

More common in athletes with a genetic tendency to develop

allergies [41]

Ig immunoglobulin, IL interleukin, NSAID nonsteroidal antiinflammatory drug

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adverse effects associated with treatments tomanage and prevent such asthma attacks (in-cluding OCS, on which patients can becomedependent) can also represent a significantburden for people with severe asthma [26].

The goal of asthma management is toachieve disease control. The definition ofasthma control is based on symptoms, lungfunction, sleep disturbance, limitations of dailyactivity, use of rescue medication, and theoverall assessment of patients and physicians[27]. Assessment of asthma control is used toinform changes made to a patient’s asthmamanagement plan and for prompt referral to aspecialist for diagnosis of severe asthma [27].The benefits of good asthma control includereduced health care resource utilization, fewermissed work/school days, and a lesser risk ofasthma attacks [28].

An international study of nonspecialistphysicians treating patients with asthmareported that only 10% used validated patientquestionnaires to determine if their patients’asthma was controlled and just 37% of patientshad a written asthma action plan [29]. It hasbeen reported that many patients with severeasthma underestimate the severity of theircondition and overestimate how well it is con-trolled [30]. In addition, as many as 70% ofpatients have become accustomed to compro-mising their daily activities to accommodateliving with severe asthma [10]. GINA guidelinesdefine goals for asthma treatment and expectedhealth outcomes. However, a European studyreported that a low percentage of patients withsevere asthma are achieving these goals (Fig. 3)[10], highlighting the unmet need for improvedtreatment and management of patients withsevere asthma.

There is a need to educate patients livingwith severe asthma to recognize persistentsymptoms and know to seek expert treatment topotentially achieve a better health-relatedquality of life. Frequent patient education oncorrect inhaler technique is also important toensure the optimal effect of currently prescribedmedications. There should be shared decision-making between patients and their clinicians toensure that care focuses on limiting the impactof symptoms and the adverse effects of

treatment on physical, mental, and emotionalhealth. Each person will be different, so careshould be personalized to address what mattersmost to each individual [22].

PRINCIPLE 5: I DESERVE NOT TO BERELIANT ON ORALCORTICOSTEROIDS

Compared with patients with milder controlleddisease, patients with severe asthma also expe-rience adverse effects from treatments that areused to manage asthma attacks (e.g., OCS). Ifthese treatments are used long term, theresulting adverse effects may include weightgain, diabetes, osteoporosis, glaucoma, anxiety,cardiovascular disease, and impaired immunity[17]. These can be debilitating, with a signifi-cant impact on both other conditions thatpatients may have and overall health-relatedquality of life [9]. Adverse effects also have asignificant impact on the utilization of addi-tional health care services [31, 32]. Asthma UKreports that patients ‘‘loathe’’ these treatmentsand that the substantial adverse effects are asignificant reason they do not comply withtheir prescribed medications, which puts themat risk of experiencing a future asthma attack[9, 14]. Now that new, targeted treatmentoptions based on increased understanding ofthe biology of the underlying disease are avail-able, there is a growing call for severe asthmacare to be less reliant on the long-term use ofOCS to prevent asthma attacks [9].

PRINCIPLE 6: I DESERVE TO ACCESSCONSISTENT QUALITY CARE,REGARDLESS OF WHERE I LIVEOR WHERE I CHOOSE TO ACCESS IT

Severe asthma requires input from a specialistteam to confirm a diagnosis and determine thebest treatment/management approach for indi-vidual patients [6, 8]. However, managementpractices and patients’ experiences of asthmacare exhibit geographic variation, and there isalso inconsistency within countries in how

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patients are managed [6]. A study in sevenEuropean countries reported that managementand control of asthma were below the standarddefined in the GINA guidelines, with mostadults (49.5–73.0%) and many children(38.4–70.6%) only having a follow-up visit fortheir asthma when they experienced an asthmaattack [31, 33]. Furthermore, in our experience,it can take patients an astounding 10–20 yearsto be referred to a respiratory specialist in manycountries.

New care models should be considered forthe delivery of severe asthma services toimprove efficiency and ensure that patientshave access to consistent quality care. Treat-ment of conditions such as diabetes and strokehas been transformed using networks andtechnology to deliver efficient but effectivespecialized care [34]. People with severe asthmashould receive a personalized approachthroughout their treatment journey based ontheir own individual needs [22].

DISCUSSION

Severe asthma places a significant burden onhealth systems and the lives of patients. Despiteexisting treatment guidelines, the managementof patients with severe asthma in practice all toooften fails to sufficiently achieve outlined goals.

There is, therefore, a need to urgently reviewthe current care provided for patients withasthma and raise the expectations regardingtheir diagnosis and treatment. Improvements inthe quality of care for patients with asthma fallsbehind that achieved for other diseases. Forexample, a patient experiencing a heart attackwould not be released from the hospital after aninitial attack had been controlled without aplan for follow up and treatment to preventfuture attacks. Yet this is the experience ofmany patients hospitalized for an asthmaattack, even though these patients are verylikely to experience another attack that could bepotentially fatal.

During the past 20 years, the introduction ofbiologics for the treatment of rheumatoidarthritis, along with improved care from a MDT,has transformed the experience of patients withthis disease. Early diagnosis and effective treat-ment have resulted in a reduction in the num-ber of surgeries and hospitalizations required forthe management of rheumatic disease [35].Steroid therapy is no longer overused. The samerevolution is occurring in the treatment ofpatients with severe asthma, with new biologictreatments becoming available that havedemonstrated effectiveness in reducing futureasthma attacks for patients with defined sub-types of severe asthma [13]. However, ensuringthat patients with severe asthma who may

Fig. 3 Percentage of patients with severe asthma achievinginternational treatment goals [10]. Reproduced with kindpermission from the European Federation of Allergy andAirways Diseases Patients Association (EFA) from: Euro-pean Federation of Allergy and Airways Diseases Patients

Association (EFA). A European patient perspective onsevere asthma: Fighting for breath http://www.efanet.org/images/2012/07/Fighting_For_Breath1.pdf

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potentially benefit from these new treatmentsare identified and seen by specialists is funda-mental to achieving these improvements. Earlydiagnosis is particularly important to facilitatethe prescribing of these new biologics or toenable patients to enroll in clinical studies ofother novel therapies.

To implement these principles, we recom-mend the following. Asthma patients shouldrequest written asthma treatment action plansfrom physicians, with specific goals detailed, asa mandatory part of the care they receive. Theyshould also request that both their physiciansand pharmacists provide or make availabletraining of inhaler technique to them beforethey fill new prescriptions. This ‘‘double check’’can help avoid errors. In addition, patientorganizations should reinforce the need forwritten action plans and frequent checks ofinhaler technique. Many patient organizationshave programs to detail what should be in awritten action plan and why is it useful andoften provide instructional recordings demon-strating correct inhaler techniques. Patientorganization representatives should screenmeeting participants as they demonstrate theirinhaler techniques and review written actionplans to verify they understand them correctly.

The principles we have set out in the Charterto Improve Patient Care in Severe Asthmademonstrate the core elements of quality carethat patients with severe asthma should expectto receive. They are based on the latest under-standing of the disease and how care should bestructured. These principles should be used tobenchmark current service provision. We urgepolicymakers, those responsible for the deliveryof severe asthma care, and advocates for bettercare to use the principles and action plan wehave set out here to build consensus on whatsevere asthma care should look like in theirhealth system, place people with asthma at thecenter of care, identify the current gaps andareas for improvement, and implement mea-sures to improve the quality of care and

outcomes for people with severe asthma with aview to promoting a life with minimalsymptoms.

ACKNOWLEDGEMENTS

The Patient Charter was initiated by AstraZe-neca to inform a discussion about what qualitycare should look like in the provision of severeasthma services. These principles were debatedand refined during a discussion held on 8September 2017 in Milan, Italy, organized andfunded by AstraZeneca. Twelve academic,patient organization, and professional groupexperts discussed the value of establishing aPatient Charter as a potential starting point fordiscussions on how to improve severe asthmacare.

Funding. Funding for this study, the articleprocessing charges, and the open access chargewas provided by AstraZeneca.

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. Theauthors thank Umit Kaynak and Nella vanRhijn-van Gemert of Beautiful Lives, a humaninsights research firm in Hilversum, TheNetherlands, for providing the sample severeasthma patient journey described in thismanuscript and illustrated in Fig. 2. This wasfunded by AstraZeneca, The Netherlands.

Medical Writing and/or Editorial Assis-tance. Writing and editing assistance, includ-ing preparation of a draft manuscript under thedirection and guidance of the authors, incor-porating author feedback, and manuscript sub-mission, was provided by Debra Scates, PhD, of

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JK Associates, Inc., and Michael A. Nissen, ELS,of AstraZeneca. This support and charges relatedto the publication of this article were funded byAstraZeneca.

Disclosures. Andrew Menzies-Gow has con-sultancy agreements with AstraZeneca and Vec-tura; was an advisory board member forAstraZeneca, Boehringer Ingelheim, GSK, Novar-tis, and Teva; received speaker fees from AstraZe-neca, Boehringer Ingelheim, Novartis, Teva, andVectura; has received clinical funding fromAstraZeneca; has participated in research that hisinstitution has been remunerated from Boehrin-ger Ingelheim,GlaxoSmithKline, andHoffmanLaRoche; and has attended international confer-ences sponsored by AstraZeneca and BoehringerIngelheim. Jaime Correia de Sousa has been anadvisory board member with AstraZeneca, Boeh-ringer Ingelheim,GlaxoSmithKline, andNovartis;has receivedpayment for lectures fromBoehringerIngelheim and Mundipharma; and has receivedpayment for development of educational presen-tations from Boehringer Ingelheim. John W.Uphamhas received consultancy and speaker feesfrom AstraZeneca, Boehringer Ingelheim,GlaxoSmithKline, Menarini, and Novartis. Antje-Henriette Fink-Wagner has consulted for Astra-Zeneca, Novartis and Teva on severe asthma.G-Walter Canonica has been an advisory boardmemberwithAstraZeneca,Boehringer Ingelheim,GlaxoSmithKline, Novartis, Mundipharma,Menarini, Chiesi, ALK, Stallergenes, Hal Allergy,Sanofi Regeneron; has received payment for lec-tures from GlaxoSmithKline, Novartis, Menarini,Chiesi, Stallergenes, Hal Allergy; and has partici-pated in research for his institution supported byAstraZeneca, GlaxoSmithKline, Novartis, Mundi-pharma, Menarini, Chiesi. Sanofi Regeneron.Tonya A. Winders has consultancy agreementswith AstraZeneca for the PRECISION program.

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

Data Availability. Data sharing is notapplicable to this article as no data sets weregenerated or analyzed during the current study.

Open Access. This article is distributedunder the terms of the Creative CommonsAttribution-NonCommercial 4.0 InternationalLicense (http://creativecommons.org/licenses/by-nc/4.0/), which permits any noncommer-cial use, distribution, and reproduction in anymedium, provided you give appropriate creditto the original author(s) and the source, providea link to the Creative Commons license, andindicate if changes were made.

APPENDIX

Box 1: Charter to improve patient carein severe asthma principles

Principle 1: I deserve a timely, straightforward referral

when my severe asthma cannot be managed in primary

care.

Principle 2: I deserve a timely, formal diagnosis of my

severe asthma by an expert team.

Principle 3: I deserve support to understand my type of

severe asthma.

Principle 4: I deserve care that reduces the impact of severe

asthma on my daily life and improves my overall quality

of care.

Principle 5: I deserve not to be reliant on oral

corticosteroids.

Principle 6: I deserve to access consistent quality care,

regardless of where I live or where I choose to access it.

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