Abstract
Background
Antimicrobial resistance (AMR) represents a significant global health threat, particularly for people with chronic respiratory diseases. However, their experiences, knowledge, priorities and concerns have not been comprehensively assessed. This study aimed to gauge patients’ perspectives of AMR burden in chronic respiratory disease.
Methods
An anonymous web-based patient survey was developed by the AMR-Lung European Respiratory Society Clinical Research Collaboration and members of the European Lung Foundation patient advisory groups, consisting of 39 questions, translated into 20 languages and held online over a 2-month period. Multivariable logistic regression analyses were used to explore disease-specific burden and factors potentially affecting AMR across different healthcare settings.
Results
Among 2012 respondents from 57 countries on all six continents, 30.7% recalled having an AMR-associated infection, while 12.6% perceived their last antimicrobial course as ineffective. 30.5% received long-term prophylactic antimicrobials, with 44.6% of them recalling an AMR-associated infection. 17.6% reported antimicrobial use without medical prescription, while 9.5% perceived prescriptions as delayed. Respondents recognised mostly their healthcare professionals as an information source regarding AMR, but 27% were unaware of AMR prior to the survey. Patients from high-income countries were more likely to be knowledgeable about AMR, to avoid using antimicrobials without prescription and to perceive them as ineffective. Respondents overwhelmingly viewed AMR as a personal (76.4%) and global (79.6%) threat.
Conclusions
This global large-scale survey ascertains for the first time the high AMR burden from the perspective of people with chronic respiratory diseases, accentuating the need to promote AMR awareness, judicious antimicrobial use and accessibility to quality healthcare.
Shareable abstract
A global survey showed a high antimicrobial resistance burden from the perspective of patients with chronic respiratory disease, with disparities across healthcare settings highlighting the need for greater awareness and judicious antimicrobial use. https://bit.ly/3SvX0Mk
Introduction
Antimicrobial resistance (AMR) refers to the natural process of microbes developing or acquiring structural and functional properties to withstand antimicrobial treatments over time [1]. AMR is aggravated by the overuse and misuse of antimicrobials and poses a prominent threat to public health globally with devastating consequences, potentially undermining the advancements of modern medicine [1]. In 2019, 1.27 million deaths were attributable to bacterial AMR and 4.95 million deaths were associated with it, exceeding previous estimates [2]. This is expected to reach 10 million deaths per year and impose an economic toll of USD 2.0–6.1 trillion annually by 2050 [3]. Although vulnerable populations experience a disproportionate burden across the world [2], AMR-associated pathogens defy geographical boundaries and societal determinants, warranting both national and global action plans to safeguard antimicrobial effectiveness [1, 4].
Antimicrobial treatments are pivotal to people with chronic respiratory disease (e.g. COPD, bronchiectasis and cystic fibrosis), who commonly suffer from lower respiratory tract infections, exacerbations and chronic colonisation, necessitating repeated and/or prolonged antimicrobial courses [5]. Increased exposure to antimicrobials exerts selection pressure on the microbiome with subsequent development of AMR and unfavourable outcomes [6–8]. Structural and immunological disorders associated with chronic respiratory diseases also predispose patients to infections from pathogens exhibiting intrinsic resistance, such as nontuberculous mycobacteria [9]. In parallel, the misuse of broad-spectrum antibiotics in nonbacterial exacerbations remains a problematic issue aggravating AMR [10, 11]. In this light, AMR-associated infections are especially relevant for people with chronic respiratory disease. The European Respiratory Society (ERS) Antimicrobial Resistance in Lung Infections (AMR-Lung) Clinical Research Collaboration (CRC) has been established with the aim to better understand and mitigate AMR burden in chronic respiratory disease [12].
A deeper understanding of patient stakeholder views is critical to the development and consistent implementation of strategies against AMR that resonate meaningfully with high-risk patients’ needs, priorities and concerns. Although a previously published survey of individuals with cystic fibrosis and their healthcare providers highlighted concerns about AMR [13], there is currently a dearth of comprehensive data on patient perspectives of AMR in chronic respiratory disease worldwide.
Given this gap in the literature, a global survey was developed by AMR-Lung in collaboration with the European Lung Foundation (ELF) patient advisory groups to gauge the perspectives and knowledge of people with chronic respiratory disease on AMR.
Methods
Survey design
A multilingual, web-based, anonymous survey was developed for people with chronic respiratory disease, based on literature searches regarding AMR, by an international working group consisting of respiratory and microbiology specialists with expertise in AMR within AMR-Lung, in collaboration with patient representatives from ELF. The survey content was refined by consensus among the survey development team and subsequently piloted with 10 patients diagnosed with chronic respiratory diseases. The survey was finalised after incorporating patient feedback regarding content, clarity and relevance (supplementary appendix 1). Members of the AMR-Lung CRC translated the survey from English into 20 languages (table S1).
Survey content
An introductory vignette explained AMR in plain language and presented the aims of the survey, while informing participants about the collection and use of their anonymised data. The survey comprised specific closed-ended questions, with optional free-text comments, addressing four major themes, as follows: 1) demographic characteristics and health status, including respiratory disease and any comorbidities; 2) experience with infections and antimicrobials use; 3) knowledge of AMR; and 4) AMR-related priorities and concerns. There was a final open question for patients to share their experience with AMR and an optional further link for those interested in future projects.
Survey distribution
A survey flyer (supplementary appendix 2) was created to inform individuals with chronic respiratory disease and their close contacts or caregivers, as well as patient organisations and healthcare professionals about the survey. Apart from the AMR-Lung network, the main promotional channels included the ELF and ERS newsletters, alongside social media platforms (X, Facebook).
The survey was held online on SurveyMonkey platform, accessible through the ELF website, over a 2-month period (from 31 May to 29 July 2024) in 21 languages. It was also possible for caregivers or close contacts to complete the survey on behalf of patients with limited computer literacy or functional status, as well as children.
Data analysis
Categorical and ordinal data for each survey question were presented as absolute and relative frequencies, based on the total number of valid responses received per question. Free-text comments were further analysed for each question and incorporated as frequencies of either existing survey options (identification as paraphrases) or additional options (coding into recurrent themes).
We performed multivariable binary logistic regression analyses to explore the potential impact of several parameters on recall of AMR-associated infection, perceived lack of antimicrobial effectiveness, occasional use of antimicrobials without medical prescription, perceived delay in antimicrobials prescription, AMR knowledge prior to participation in the survey and AMR perception as a personal threat. For each regression analysis, independent variables were selected based on both their clinical importance and statistical significance in preliminary univariate analyses (p<0.2). The number of independent variables did not exceed the acceptable limit based on the number of events or nonevents (whichever had lower occurrence) for the dependent variable. Finally, we checked potential multicollinearity by estimating the variance inflation factors for all independent variables in each analysis. We report our findings from the multivariable analyses as adjusted odds ratios together with 95% confidence intervals and p-values.
IBM SPSS Statistics, version 25 (IBM Corp., Armonk, NY, USA) was used for statistical analyses and the level of statistical significance was set to α=5% (two-tailed).
Results
A total of 2012 respondents from 57 countries took part in the patient survey (figures 1 and S1), with a 70.6% completion rate. About 16% (315/1972), predominantly individuals under 18 years, had a caregiver or close contact respond on their behalf.
FIGURE 1.
Respondents’ country of residence with colours representing the number of respondents. Total number of valid responses: 1799. Created with mapchart.net.
Demographic characteristics and health status
As presented in table 1, most respondents were female (69.7%, 1255/1801), between 25–74 years of age (80.7%, 1454/1801) and from high-income countries (76.5%, 1377/1799). The majority had attained secondary or higher levels of education (88.6%, 1595/1801).
TABLE 1.
Respondents’ demographic characteristics and health status
| Respondents, n (%) | |
|---|---|
| Gender (n=1801) | |
| Female | 1255 (69.7) |
| Male | 523 (29.0) |
| Nonbinary | 8 (0.4) |
| Age range, years (n=1801) | |
| <18 | 77 (4.3) |
| 18–24 | 116 (6.4) |
| 25–34 | 275 (15.3) |
| 35–44 | 261 (14.5) |
| 45–54 | 258 (14.3) |
| 55–64 | 319 (17.7) |
| 65–74 | 341 (18.9) |
| 75+ | 150 (8.3) |
| Country of residence# (n=1799) | |
| High income | 1377 (76.5) |
| Upper-middle income | 267 (14.8) |
| Lower-middle income | 155 (8.6) |
| Low income | 0 (0) |
| Education level (n=1801) | |
| Primary | 128 (7.1) |
| Secondary | 398 (22.1) |
| Trade/technical/vocational training | 293 (16.3) |
| Bachelor's degree or equivalent | 473 (26.3) |
| Master's degree or equivalent | 431 (23.9) |
| Respiratory disease course, years (n=1801) | |
| <1 | 140 (7.8) |
| 1–5 | 394 (21.9) |
| 6–10 | 313 (17.4) |
| >10 | 923 (51.2) |
| Main respiratory-related healthcare contact (n=1775) | |
| Family doctor/general practitioner | 204 (11.5) |
| Local or regional hospital | 563 (31.7) |
| Specialist national centre | 966 (54.4) |
| Respiratory-related burden within 12 months (n=1775) | |
| Hospital admission | 474 (26.7) |
| Other emergency healthcare contact | 687 (38.7) |
| Any comorbidity (n=1801) | 1133 (62.9) |
| Medications of interest, long-term use (n=1742) | |
| Immunosuppressive medications | 431 (24.7) |
| Prophylactic antimicrobials | 532 (30.5) |
Noninformative responses (“do not know/not sure”, “prefer not to say”) are not shown. n: total number of valid responses per survey question. #: country classification by income level as per the World Bank (https://blogs.worldbank.org/en/opendata/world-bank-country-classifications-by-income-level-for-2024-2025).
Respondents had a range of self-reported chronic respiratory diseases, most commonly bronchiectasis (40.8%, 735/1801), followed by cystic fibrosis (27.2%, 489/1801) and asthma (25.3%, 455/1801) (figure 2). The majority had been diagnosed more than 5 years previously (68.6%, 1236/1801). 54.4% were followed-up at national specialist centres for their respiratory disease (966/1775). 26.7% (474/1775) and 38.7% (687/1775) had respiratory-related hospital admissions or other emergency healthcare contacts, respectively, in the preceding 12 months.
FIGURE 2.
Number of respondents per chronic respiratory disease (self-reported). Total number of valid responses: 1801. Multiple answers and free-text comments were allowed.
The most common self-reported comorbidities were gastro-oesophageal reflux disease (18.2%, 327/1801), sinusitis (16.9%, 305/1801), diabetes (13.8%, 249/1801) and cardiovascular disease (12.8%, 231/1801), although a significant minority acknowledged no diagnosed comorbidity (37.1%, 668/1801), as shown in figure 3. Immunosuppressive medications were reportedly taken long-term by 24.7% (431/1742) of respondents.
FIGURE 3.
Number of respondents per nonrespiratory comorbidity (self-reported). Total number of valid responses: 1801; multiple answers and free-text comments were allowed.
Infections and antimicrobials use
Figure 4 outlines the AMR- and antimicrobial-related burden, as captured in the survey. In total, 30.7% (518/1689) of respondents recalled having an AMR-associated infection (at any time-point), particularly individuals who perceived their last antimicrobial course as ineffective (12.6%, 212/1689; OR 1.89, 95% CI 1.30–2.75). This was more likely in case of a prolonged antimicrobial course (36.1%, 609/1689; OR 2.88, 95% CI 1.34–6.19). A significant proportion (42.7%, 721/1689) stated they had no sample sent for culture and/or sensitivity testing prior to their last treatment with antimicrobials.
FIGURE 4.
Interdependent burden of infections, antimicrobials and healthcare services, as captured in the survey. AMR: antimicrobial resistance; i.v.: intravenous. #: referring to the respondents’ last antimicrobial course. ¶: percentage of individuals receiving prophylactic antimicrobials.
Prophylactic antimicrobials were reportedly prescribed for long-term use in 30.5% of respondents (532/1742). Among them, 44.6% (229/513) recalled having an AMR-associated infection (OR 1.73, 95% CI 1.33–2.24). Intravenous antimicrobial courses had been administered within the last 12 months in 40.0% (209/523), with 53.1% of them (111/209) recalling at least two i.v. courses. 51.7% (272/526) of individuals receiving prophylactic courses took inhaled antimicrobials, most commonly for more than 4 months (75.2%, 203/270).
17.6% of respondents (298/1689) reported occasional use of antimicrobials without medical prescription, as leftovers or through direct over-the-counter purchase. These individuals had a higher likelihood of perceiving their last antimicrobial course as ineffective (OR 1.92, 95% CI 1.18–3.10). 9.5% (161/1689) of respondents felt that their physician prescribed antimicrobials too late and were more inclined to avoid seeking a prescription (OR 1.71, 95% CI 1.10–2.66).
Knowledge of AMR
While 26.8% of respondents (452/1684) acknowledged never having heard of AMR prior to the survey, the majority (62.3%, 1041/1670) reported a self-perceived moderate to excellent understanding. Most respondents identified discussions with their healthcare professionals (58.2%, 683/1174) as their main information source regarding AMR, followed by information from the hospital (25.3%, 297/1174) and patient associations (21.1%, 248/1174) (table 2).
TABLE 2.
Respondents’ information sources regarding antimicrobial resistance
| Information sources | Respondents, n (%) |
|---|---|
| Healthcare professionals | 683 (58.2) |
| Hospital information | 297 (25.3) |
| Patient associations | 248 (21.1) |
| Government information | 193 (16.4) |
| Journalism/broadcast media | 107 (9.1) |
| School/professional education | 96 (8.2) |
| Social media | 85 (7.2) |
| General knowledge | 17 (1.4) |
| Family/friends | 16 (1.4) |
| Medical/scientific journals | 16 (1.4) |
| Do not know/not sure | 90 (7.7) |
Total number of valid responses: 1174. Multiple answers and free-text comments were allowed.
Understanding of AMR was further assessed by specific questions which revealed considerable levels of familiarity with AMR-associated pathogens and contributors (figures S2 and S3). 64.7% (919/1420) of respondents identified AMR-associated pathogens, most commonly Pseudomonas aeruginosa (48.9%, 695/1420). 76.6% (1088/1420) of respondents were able to identify AMR contributors, most commonly antimicrobial overuse (69.9%, 993/1420), incorrect antimicrobial dosing and/or duration (52.0%, 738/1420) and inadequate diagnosis (35.9%, 510/1420). Prevention strategies against AMR (figure S4) were identified by 83.9% (1192/1420), with the most commonly proposed approaches being a better ability to diagnose (59.2%, 841/1420) or treat (48.9%, 695/1420) infections, as well as the availability of newer treatments (50.1%, 711/1420).
AMR-related priorities and concerns
Respondents’ priorities on AMR are illustrated in figure S5. The vast majority agreed on the significance of raising patient awareness of AMR (90.3%, 1283/1421) and expressed a desire to understand how AMR may impact their future health (89.9%, 1277/1421) and why it is important to avoid unnecessary antimicrobial use (89.9%, 1277/1421). Respondents expressed their interest in preventing AMR (89.7%, 1275/1421) and in recognising signs of bacterial infections (91.6%, 1302/1421). Over 80% were interested in more specific practical issues, including how often AMR tests should be performed (84.4%, 1199/1421) and the impact of vaccination on AMR (80.1%, 1138/1421).
Respondents overwhelmingly viewed AMR as a significant (medium to major) threat, both at an individual level (76.4%, 1276/1670) and globally (79.6%, 1330/1670). The impact of AMR on medical procedures (74.6%, 1060/1421) and antimicrobial effectiveness (74.0%, 1052/1421), as well as the transmission of AMR-associated pathogens from other patients (73.0%, 1037/1421) and from the environment (72.5%, 1030/1421), emerged as shared concerns. Respondents also expressed their worries about transmitting pathogens to other patients (62.1%, 883/1421) or to friends and family (58.5%, 831/1421) (figure S6).
Approximately 90% would value research on new antimicrobials (90.6%, 1287/1421), prevention of pathogens transmission between individuals or from the environment (90.0%, 1279/1421) and on differentiating bacterial from other infections (89.7%, 1275/1421) (figure S7).
Logistic regression analyses
A detailed report of the preliminary univariate and multivariable logistic regression models is available as supplementary material. Table 3 provides an overview of the effect of each independent variable on the adjusted odds ratio of the dependent variable in each logistic regression model.
TABLE 3.
Effect of the independent variables in the adjusted odds ratio of the dependent variable per each multivariable logistic regression model
| Dependent variables (columns)/independent variables (rows) | Recall of AMR-associated infection | Perceived antimicrobials inefficacy¶ | Antimicrobial use without prescription | Perceived delay in antimicrobials prescription | AMR knowledge prior to survey | AMR perception as a personal threat |
|---|---|---|---|---|---|---|
| Country of residence (high versus middle income) | ↑ | ↓ | ↓ | – | ↑ (high versus lower-middle) | ↑ (upper- versus lower-middle) |
| Education level (≥secondary versus primary level) | ↑ | NA | ↑ | NA | ↑ | NA |
| Main healthcare contact (specialist centre versus regional hospital or family doctor) | ↑ (specialist centre versus family doctor) | ↓ | NA | – | ↑ | NA |
| Bronchiectasis | NA | ↑ | ↑ | – | NA | ↑ |
| Asthma, COPD | ↓ | NA | NA | NA | ↓ | NA |
| Cystic fibrosis, PCD | ↑ | NA | ↑ | NA | ↑ | NA |
| TB, NTM, aspergillosis | - | NA | ↓ | NA | – | NA |
| Interstitial lung diseases | ↓ | NA | NA | NA | – | NA |
| Prophylactic antimicrobials | ↑ | – | NA | – | – | – |
| Longer diagnosis (>5 years) | ↑ | NA | NA | ↓ | – | – |
| Higher disease burden# | ↑ | NA | NA | ↑ | NA | ↑ |
| Immunosuppressants | NA | – | – | – | – | NA |
| Recall of AMR-associated infection | NA | ↑ | NA | NA | NA | ↑ |
| Perceived antimicrobials inefficacy¶ | ↑ | NA | NA | ↑ | NA | NA |
| Antimicrobial use without prescription | – | ↑ | NA | NA | NA | NA |
| Perceived delay in antimicrobials prescription | NA | ↑ | ↑ | NA | NA | NA |
| AMR knowledge prior to survey | NA | NA | NA | ↓ | NA | NA |
| Longer antimicrobial course (≥2 weeks versus <1 week)¶ | NA | ↑ | NA | NA | NA | NA |
The reference for independent variables is the absence of the independent variable, unless stated otherwise. ↑: increase in the adjusted odds ratio; ↓: decrease in the adjusted odds ratio; –: no statistically significant effect in the adjusted odds ratio; AMR: antimicrobial resistance; NA: not applicable; PCD: primary ciliary dyskinesia; TB: tuberculosis; NTM: nontuberculous mycobacteria. #: hospital admission or other emergency healthcare contact within 12 months due to chronic respiratory disease. ¶: referring to the respondents’ last antimicrobial course.
Of note, assuming that all other variables remained constant, the odds of patients recalling having an AMR-associated infection increased in high-income compared to middle-income countries, among those with secondary or higher education level, among those treated at national specialist centres rather than family doctors, those with a longer (>5 years) respiratory disease course, those who had been admitted to hospital or other emergency care for respiratory disease during the preceding 12 months, and those using prophylactic antimicrobials.
Discussion
This is the first study exploring the global AMR burden from the perspective of people with a range of chronic respiratory diseases. Based on a large-scale survey of over 2000 responses across 57 countries, we ascertained a high AMR burden in respondents, with notable disparities across different healthcare settings.
Within our survey, the significant proportion of respondents receiving long-term antimicrobials with further systemic courses over the preceding year appears to accentuate the risk of selection pressure driving AMR in chronic respiratory disease. Almost one in three respondents recalled having an AMR-associated infection, reflecting a burden consistent with findings reported in the published literature [6, 7, 9, 14, 15]. Increased AMR prevalence in this population has so far been inferred from limited retrospective microbiological data [8, 16–18], with wider prospective epidemiological analysis warranted to determine AMR prevalence, clinical burden and specific risk factors.
Indiscriminate antimicrobial use decidedly impinges on their efficacy [1]. In our survey, an alarming number of respondents reported occasional antimicrobial consumption without medical prescription, accompanied by a higher likelihood of perceiving antimicrobials as ineffective. This may reflect misuse in inappropriate settings, incomplete treatment cycles or AMR-associated infection. Especially prone to eschew medical prescription were respondents who perceived it as delayed, stressing the overarching need for prompt diagnosis and treatment. Investment in the development and uptake of rapid diagnostic tests, although currently limited, holds promise for enabling timely and appropriate antimicrobial treatment, while helping to restrict nonindicated administration within AMR stewardship programmes [19–21].
Apart from delayed diagnosis and treatment, self-medication may arise from patient distrust in local healthcare. Prior studies have shown that physician reluctance to prescribe antimicrobials can lead to patient dissatisfaction [22], while, conversely, patient expectations may drive antimicrobial prescription [23], suggesting the importance of patient–physician trust and patient education on AMR [24] in curtailing both self-medication and overprescription. This is corroborated by the survey results, as individuals with knowledge of AMR were less inclined to perceive a delay in prescriptions (OR 0.58, 95% CI 0.37–0.91), possibly reflecting an attenuated demand for antimicrobial therapy.
Patient understanding of antimicrobial use and the risk of AMR is crucial to stewardship strategies and was prioritised by the vast majority of respondents. However, more than one in four respondents admitted they were unaware of AMR prior to the survey. Understanding of AMR is intricately contingent on individual background and knowledge, interactions with healthcare professionals, healthcare systems and national structures, including the media [24]. Collaborative multidimensional efforts are, therefore, required to enhance AMR awareness among patients and ensure that accessible information to individuals with chronic respiratory disease is scientifically robust and appropriate.
Nonetheless, our analyses revealed increased use of antimicrobials without prescription among individuals with higher level of education (OR 2.95, 95% CI 1.22–7.10), perhaps attempting to self-manage their health. This implies that AMR awareness may not suffice to guide prudent antimicrobial attitudes [24], in agreement with literature favouring tangible behaviour-changing approaches to prescribing practices within wider policy measures [25]. A brief digital intervention appeared promising in resetting expectations for antimicrobials among adult participants residing in the UK [26], but poor computer literacy and access in many middle- and low-income countries would intensify education disparities [24], calling for much-needed tailored policy commitments [25].
The global inequity in infrastructure and healthcare services dictates distinct AMR determinants and burden [27]. Correspondingly, our analyses detected striking differences. Respondents residing in high-income countries were more likely to be cognisant of AMR, compared to lower-middle-income countries, and less likely to use antimicrobials without prescription and to perceive them as ineffective compared to individuals from middle-income countries. The latter were less likely to recall AMR-associated infection, which implies a lack of awareness or restricted diagnostic services [2, 28, 29]. Due to a lack of responses, our findings do not apply to low-income countries, where disparate aetiology and significant underdiagnosis of chronic respiratory disease [30, 31], alongside deficiencies in medications and environmental contamination [27], alter AMR burden.
Despite the higher recall of AMR-associated infections among individuals treated at national specialist centres, they were less inclined to perceive antimicrobials as ineffective, in stark contrast to those followed up at regional hospitals or primary care. This perhaps reflects prior studies highlighting inappropriate antimicrobial prescription in acute hospitals [32] and primary care [33]. The driving reasons, including guidance-practice gaps and patient influence [23], may resolve in part with behavioural interventions, training and rapid diagnostics [20, 34].
Chronic respiratory diseases differ substantially in their pathophysiology, trajectory and, presumably, risk for AMR [8, 16–18]. This was supported by our multivariable analyses, revealing marked differences within specific chronic respiratory diseases. Bronchiectasis was associated with a suggested increased burden; conversely, people with asthma or COPD were less likely to have heard of AMR prior to the survey and those with interstitial lung diseases were less likely to recall AMR-associated infection. This probably reflects the differences in infection burden necessitating tailored approaches; however, a limitation to these findings is an underrepresentation of individuals with COPD within our survey.
Overall, this is the largest survey investigating patient perception of AMR in chronic respiratory disease, while analysing disease-specific burden and factors potentially affecting AMR in this population. However, the sparseness and lack of responses from middle- and low-income countries weakened the generalisability of our findings. Targeted efforts must be directed to collect data in these settings.
As in all studies with volunteer recruitment of participants, self-selection bias likely led to higher participation of individuals on long-term antimicrobials or those affected by or knowledgeable about AMR. Given the predominance of respondents with bronchiectasis and cystic fibrosis, where AMR is likely a higher priority, our survey possibly overestimates antimicrobial use and AMR awareness. Although the survey did not target any specific patient group within chronic respiratory disease, nor specific countries, disparities in access and personal motivation to participate led to skewed patient populations, particularly with underrepresentation of individuals with COPD. This, however, may also reflect a reduced awareness of the implications of AMR for individuals with COPD. Wider data capture across the full diagnostic and severity spectrum of chronic respiratory disease is therefore required to enhance generalisability and fully understand patients’ perspectives on AMR and its associated burden.
Although the online anonymous delivery of the survey potentially motivated respondents to openly share their attitudes, poor computer literacy, internet access or functional status may have introduced sampling bias. To minimise this, close contacts and caregivers were encouraged to complete the survey on behalf of patients. Additionally, our findings are susceptible to recall bias, as we did not juxtapose responses with medical records, considering that the survey centred on patients’ perspectives and knowledge. Our results need validation in large epidemiologic studies that link AMR prevalence with clinical burden, as well as in qualitative studies pinpointing the key factors shaping patients’ attitudes.
Despite the World Health Organization Member States’ global action plan [35] and several national action plans on AMR [36], progress in mitigating AMR has been limited, largely due to challenges in implementation and monitoring, especially in low- and middle-income countries [37]. People with chronic respiratory diseases carry a considerable risk for AMR [6, 12], which remains largely overlooked. Our survey can inform future interventions and efforts to increase AMR awareness and help shape a prudent attitude towards antimicrobial consumption in the context of a more active, coordinated patient-centred framework at an international community level [38].
Our survey also provides actionable insights for daily clinical practice. In view of the observed significant antimicrobial use in chronic respiratory diseases, with increased odds of AMR-associated infections, healthcare providers should deliberately enquire about antimicrobial consumption and discourage nonindicated use within informative interactions with patients tailored to patient needs and literacy levels, while refraining from empirical prescription.
With organisational constraints, practice norms and patients’ expectations frequently driving empirical treatment decisions [32, 34], withholding antimicrobials is particularly challenging in the absence of rapid diagnostics to discern bacterial-related exacerbations [39]. This was highlighted in a recent international healthcare professional survey, where 76.4% recognised inappropriate antimicrobial prescriptions in chronic respiratory disease as common in their region [40]. Multidisciplinary discussions with a pharmacist, microbiologist and infectious disease specialist may partially compensate for diagnostic uncertainty supporting judicious administration [32]. To counter unwarranted variation in practice, public health policies need to reinforce regulation restricting over-the-counter antimicrobial consumption, while improving referral systems and establishing seamless access to quality healthcare services [28, 29].
In summary, we present the first global large-scale comprehensive survey of AMR burden from the perspective of people with chronic respiratory disease. Our results suggest a significant AMR burden with over three-quarters of respondents perceiving AMR as a personal and global threat, while revealing gaps in AMR education and policy. Given that patient awareness and involvement is critical to the consistent implementation of strategies against AMR [38], our findings point to unaddressed, pressing priorities invoking the necessity for urgent promotion of AMR awareness, judicious antimicrobial use and accessibility to quality healthcare.
Acknowledgements
We would like to thank all survey respondents for their valuable input and national patient organisations for survey promotion. We also acknowledge the contribution to the survey translation and dissemination by AMR-Lung Clinical Research Collaboration members.
This article has been revised according to the correction published in ERJ Open Res 2026; 12: 50271-2025 [https://doi.org/10.1183/23120541.50271-2025].
Provenance: Submitted article, peer reviewed.
AMR-Lung Clinical Research Collaboration: Paulina Aleksander (Department of Pediatric Respiratory Medicine, Immunology and Critical Care Medicine, Charité – Universitätsmedizin Berlin, Berlin, Germany), Gina Amanda (Primaya Hospital Bekasi Utara, Bekasi, and Jakarta Islamic Hospital Cempaka Putih, Jakarta, Indonesia), Ayşe Önal Aral (Pulmonary Diseases Clinic, Gölbaşı State Hospital, Ankara, Turkey), Vipula Bataduwaarachchi (Department of Pharmacology, Faculty of Medicine, University of Colombo, Colombo, Sri Lanka), Vikram Damaraju (Department of Pulmonary Medicine, All India Institute of Medical Sciences, Mangalagiri, India), Nazanin Farahbakhsh (Pediatric Pulmonary Department, Mofid Children's Hospital, Shahid Beheshti University of Medical Sciences, Tehran, Iran), Thomas Guillard (Université de Reims Champagne-Ardenne, INSERM, CHU de Reims, Laboratoire de Bactériologie-Virologie-Hygiène hospitalière, P3Cell, U 1250, Reims, France), Satenik Harutyunyan (Yerevan State Medical University, Department of Pediatrics # 1, Muratsan University Hospital, Cystic Fibrosis Center, Yerevan, Armenia), Malvina Hoxha (Department of Chemical-Toxicological and Pharmacologic Evaluation of Drugs, Faculty of Pharmacy, Catholic University Our Lady of Good Counsel, Tirana, Albania), Despoina Karamitrou (Primary Health Center, Nea Madytos, Greece), Rahul Karwa (Apollo Excelcare Healthcare, Guwahati, India), Wang Chun Kwok (Department of Medicine, School of Clinical Medicine, LKS Faculty of Medicine, The University of Hong Kong, Hong Kong, China), Lam Nguyen-Ho (Department of Internal Medicine, University of Medicine and Pharmacy at Ho Chi Minh City, Ho Chi Minh, Vietnam), Sarang Patil (Department of Pulmonary, Critical Care and Sleep Medicine, Maharashtra University of Health Sciences, Nashik, India), Chiara Premuda (Respiratory Unit and Cystic Fibrosis Adult Center, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, and Department of Pathophysiology and Transplantation, University of Milan, Milan, Italy), Annie Navarro Rolon (Department of Pneumology, Hospital Sant Joan de Deu de Martorell, Barcelona, Spain), Andriy Serediuk (Department of Internal Medicine, St Paraskeva Medical Center Lviv, Lviv, Ukraine), Hélida Conceição Cavalcante Torres (Primeiro Passo Clínica Médica, São Paulo, Brazil), Quoc-Khanh Tran-Le (Department of Internal Medicine, University of Medicine and Pharmacy at Ho Chi Minh City, Ho Chi Minh City, Vietnam), Stavros Tryfon (Pulmonology Department, “G. Papanikolaou” General Hospital of Thessaloniki, Exochi, Greece), Tsang Long Kiu (Li Ka Shing Faculty of Medicine, University of Hong Kong, Hong Kong, China), Koen Verbeke (Department of Pulmonary Medicine, CHU Saint Pierre, Brussels, Belgium).
Ethics statement: Ethical approval was not required for this study restricted to the collection and documentation of nonidentifiable data through a survey without any risk of harm. The research was conducted according to the principles of the World Medical Association Declaration of Helsinki. All subjects participated voluntarily providing informed consent to the collection and analysis of their strictly nonidentifiable data.
Author contributions: Conceptualisation: M. Ekkelenkamp, S. Thee, and A. Shah; survey design: all authors; data collection: J. Boyd; data analysis: E. Papadopoulou, D.L. Sykes and A. Shah; visualisation: E. Papadopoulou; writing – original draft: E. Papadopoulou, D.L. Sykes and A. Shah; writing – review and editing: all authors; supervision: A. Shah.
Conflicts of interest: E. Papadopoulou is a member of the ERJ Open Research early career Editorial Team mentoring programme. P. Goeminne reports advisory board consultancy fees from AstraZeneca and Pfizer, speaker fees from GSK, AstraZeneca and Chiesi, travel grants for conferences from Chiesi, Insmed and AstraZeneca, and participation in the Data Monitoring Committee of Boehringer Ingelheim. A. Machado reports support for travel and attending meetings from European Respiratory Society and American Thoracic Society. A. Shoemark reports consultancy fees from ReCode Therapeutics, speaker fees from Insmed, grants from AstraZeneca and Lifearc and unpaid leadership or fiduciary roles for EMBARC, BEATPCD and AMR Lung. J. Boyd is an employee of the European Lung Foundation. M. Ekkelenkamp reports speaker fees from the University of Amsterdam and is a board member of the Dutch Antibiotic Policies Working Group and the Dutch Genetic Modification Advisory Board to the government. S. Thee reports a Vertex innovation award paid to their institution, speaker fees from Vertex Pharmaceuticals, Viatris, PARI GmbH and Chiesi and unpaid leadership or fiduciary roles for ERS CRC AMR Lung, ECFS exacerbation working group and ECFS telehealth in CF working group. A. Shah reports support for the manuscript from the European Respiratory Society paid to their institution, consultancy fees from AstraZeneca, Mundipharma and Gilead Sciences, speaker fees from Insmed, research grants from AstraZeneca, Gilead Sciences and Pfizer and payment for participation on a data safety monitoring board or advisory board for Mundipharma and Astra Zeneca. D.L. Sykes, D. Marghlani, L. McNeil, J. Norwell and C. Paixão report no conflicts of interest.
Support statement: This survey was supported through funding from the European Respiratory Society as part of the AMR-Lung Clinical Research Collaboration. A. Shoemark is supported by the Asthma and Lung UK Chair of Respiratory Research. A. Shah is supported by the MRC centre grant (MR/X020258/1). Funding information for this article has been deposited with the Open Funder Registry.
Supplementary material
Please note: supplementary material is not edited by the Editorial Office, and is uploaded as it has been supplied by the author.
Supplementary material 00271-2025.SUPPLEMENT (2MB, pdf)
Data availability
The data that support the findings of this study are available from the corresponding author upon reasonable request.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Please note: supplementary material is not edited by the Editorial Office, and is uploaded as it has been supplied by the author.
Supplementary material 00271-2025.SUPPLEMENT (2MB, pdf)
Data Availability Statement
The data that support the findings of this study are available from the corresponding author upon reasonable request.