What bothers severe asthma patients most? A paired patient-clinician study across seven European countries

Ben Ainsworth^{1

2

3}, Eleanor Chatburn^{2

4}, Aruna T Bansal⁵, Olivia Fulton⁶, Dominique Hamerlijnck⁶, Courtney Coleman⁶, Katrien Eger⁷, Michael Hyland^{8

9}, Joshua Holmes¹⁰, Liam Heaney¹⁰, Vratislav Sedlák¹¹, Sabina Škrgat^{12

13}, Natalija Edelbaher¹⁴, Anneke Ten Brinke¹⁵, Celeste Porsbjerg¹⁶, Mina Gaga¹⁷, Claudia Loureiro^{18

19}, Ratko Djukanovic¹⁹, Emmanuelle Berret²⁰, Namhee Kwon²¹

Affiliations

¹ School of Psychology, Faculty of Environmental and Life Sciences, University of Southampton, Southampton, UK.
² Department of Psychology, University of Bath, Bath, UK.
³ NIHR Southampton Respiratory Biomedical Research Centre, Faculty of Medicine, University of Southampton, Southampton, UK.
⁴ Department of Clinical Psychology, University of East Anglia, Norwich, UK.
⁵ Acclarogen Ltd, Cambridge, UK.
⁶ European Lung Foundation, Sheffield, UK.
⁷ Department of Respiratory Medicine, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, the Netherlands.
⁸ School of Psychology, University of Plymouth, Plymouth, UK.
⁹ School of Sport, Health and Wellbeing, Plymouth Marjon University, Plymouth, UK.
¹⁰ Wellcome-Wolfson Institute for Experimental Medicine, Queen's University Belfast, Belfast, UK.
¹¹ Department of Respiratory Medicine, University Hospital Hradec Králové, Charles University in Prague, Prague, Czech Republic.
¹² Department of Pulmonary Diseases and Allergy, University Medical Centre Ljubljana, Ljubljana, Slovenia.
¹³ Medical Faculty, University of Ljubljana, Ljubljana, Slovenia.
¹⁴ Department of Pulmonary Diseases, University Medical Center Maribor, Maribor, Slovenia.
¹⁵ Medical Centre Leeuwarden, Leeuwarden, Netherlands.
¹⁶ Department of Respiratory Medicine, Bispebjerg University Hospital, Copenhagen, Denmark.
¹⁷ Athens Chest Hospital Sotiria, Athens, Greece.
¹⁸ Pulmonology Unit, Hospitais da Universidade de Coimbra, Centro Hospitalar e Universitário de Coimbra, Coimbra, Portugal.
¹⁹ Centre of Pulmonology, Faculty of Medicine, University of Coimbra, Coimbra, Portugal.
²⁰ European Respiratory Society (ERS), Lausanne, Switzerland.
²¹ Respiratory Clinical Sciences, GSK, Brentford, UK.

PMID: 37260457
PMCID: PMC10227631
DOI: 10.1183/23120541.00717-2022

What bothers severe asthma patients most? A paired patient-clinician study across seven European countries

Ben Ainsworth et al. ERJ Open Res. 2023.

. 2023 May 30;9(3):00717-2022.

doi: 10.1183/23120541.00717-2022. eCollection 2023 May.

Authors

Affiliations

¹ School of Psychology, Faculty of Environmental and Life Sciences, University of Southampton, Southampton, UK.
² Department of Psychology, University of Bath, Bath, UK.
³ NIHR Southampton Respiratory Biomedical Research Centre, Faculty of Medicine, University of Southampton, Southampton, UK.
⁴ Department of Clinical Psychology, University of East Anglia, Norwich, UK.
⁵ Acclarogen Ltd, Cambridge, UK.
⁶ European Lung Foundation, Sheffield, UK.
⁷ Department of Respiratory Medicine, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, the Netherlands.
⁸ School of Psychology, University of Plymouth, Plymouth, UK.
⁹ School of Sport, Health and Wellbeing, Plymouth Marjon University, Plymouth, UK.
¹⁰ Wellcome-Wolfson Institute for Experimental Medicine, Queen's University Belfast, Belfast, UK.
¹¹ Department of Respiratory Medicine, University Hospital Hradec Králové, Charles University in Prague, Prague, Czech Republic.
¹² Department of Pulmonary Diseases and Allergy, University Medical Centre Ljubljana, Ljubljana, Slovenia.
¹³ Medical Faculty, University of Ljubljana, Ljubljana, Slovenia.
¹⁴ Department of Pulmonary Diseases, University Medical Center Maribor, Maribor, Slovenia.
¹⁵ Medical Centre Leeuwarden, Leeuwarden, Netherlands.
¹⁶ Department of Respiratory Medicine, Bispebjerg University Hospital, Copenhagen, Denmark.
¹⁷ Athens Chest Hospital Sotiria, Athens, Greece.
¹⁸ Pulmonology Unit, Hospitais da Universidade de Coimbra, Centro Hospitalar e Universitário de Coimbra, Coimbra, Portugal.
¹⁹ Centre of Pulmonology, Faculty of Medicine, University of Coimbra, Coimbra, Portugal.
²⁰ European Respiratory Society (ERS), Lausanne, Switzerland.
²¹ Respiratory Clinical Sciences, GSK, Brentford, UK.

PMID: 37260457
PMCID: PMC10227631
DOI: 10.1183/23120541.00717-2022

Abstract

Introduction: Severe asthma is a complex, multidimensional disease. Optimal treatment, adherence and outcomes require shared decision-making, rooted in mutual understanding between patient and clinician. This study used a novel, patient-centred approach to examine the most bothersome aspects of severe asthma to patients, as seen from both perspectives in asthma registries.

Methods: Across seven countries, 126 patients with severe asthma completed an open-ended survey regarding most the bothersome aspect(s) of their asthma. Patients' responses were linked with their treating clinician who also completed a free-text survey about each patient's most bothersome aspect(s). Responses were coded using content analysis, and patient and clinician responses were compared. Finally, asthma registries that are part of the SHARP (Severe Heterogeneous Asthma Research collaboration, Patient-centred) Clinical Research Collaboration were examined to see the extent to which they reflected the most bothersome aspects reported by patients.

Results: 88 codes and 10 themes were identified. Clinicians were more focused on direct physical symptoms and were less focused on "holistic" aspects such as the effort required to self-manage the disease. Clinicians accurately identified a most bothersome symptom for 29% of patients. Agreement was particularly low with younger patients and those using oral corticosteroids infrequently. In asthma registries, patient aspects were predominantly represented in questionnaires.

Conclusions: Results demonstrated different perspectives and priorities between patients and clinicians, with clinicians more focused on physical aspects. These differences must be considered when treating individual patients, and within multidisciplinary treatment teams. The use of questionnaires that include multifaceted aspects of disease may result in improved asthma research.

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Conflict of interest statement

Conflict of interest: B. Ainsworth is a member of the UK Taskforce for Lung Health, has received honoraria for educational talks from AstraZeneca, and sits on advisory boards for the Medito Foundation and earGym. Conflict of interest: C. Coleman is an employee of the European Lung Foundation. Conflict of interest: M. Hyland has received grant income from Teva, GSK and AstraZeneca. Conflict of interest: L. Heaney has received grant funding, participated in advisory boards and given lectures at meetings supported by Amgen, AstraZeneca, Boehringer Ingelheim, Chiesi, Circassia, Hoffmann la Roche, GlaxoSmithKline, Novartis, Theravance, Evelo Biosciences, Sanofi and Teva; he has received grants from MedImmune, Novartis UK, Roche/Genentech Inc., GlaxoSmithKline, Amgen, Genentech/Hoffman la Roche, AstraZeneca, MedImmune, Aerocrine and Vitalograph; he has received sponsorship for attending international scientific meetings from AstraZeneca, Boehringer Ingelheim, Chiesi, GSK and Napp Pharmaceuticals; he has also taken part in asthma clinical trials sponsored by AstraZeneca, Boehringer Ingelheim, Hoffmann la Roche and GlaxoSmithKline for which his institution received remuneration; he is the Academic Lead for the Medical Research Council Stratified Medicine UK Consortium in Severe Asthma, which involves industrial partnerships with a number of pharmaceutical companies including Amgen, AstraZeneca, Boehringer Ingelheim, GlaxoSmithKline, Hoffmann la Roche, and Janssen. Conflict of interest: V. Sedlák has received honoraria for educational talks and advisory boards from AstraZeneca, GSK, Novartis, TEVA, Chiesi and Boehringer Ingelheim. Conflict of interest: N. Edelbaher has received honoraria for educational talks and advisory boards from AstraZeneca, Sanofi, Novartis, GSK, Amgen, Boherringer Ingelheim, Chiesi and Berlin Chemie. Conflict of interest: A. ten Brinke has received honoraria for educational talks and advisory board from AstraZeneca, GSK, Novartis, Sanofi and TEVA, and grant income from AstraZeneca, GSK and TEVA. Conflict of interest: C. Loureiro has received honoraria for educational talks and advisory boards from AstraZeneca, GSK, Jaba-Recordati, Novartis, Sanofi and TEVA. Conflict of interest: R. Djukanovic has received honoraria for education talks and advisory board from AZ, GSK, Teva, Novartis and Sanofi. Conflict of interest: N. Kwon is a GSK employee and held stocks in GSK at the time of manuscript writing. Conflict of interest: All other authors have no competing interests.

Figures

**FIGURE 1**
Distribution of responses by the number of distinct themes reported by patients *versus* clinicians.The size of each bubble represents the number of responses and the numbers within each bubble indicate the number of responses. For example, clinicians reported only one theme for 76 of the patients. By contrast, 48 patients reported only one theme.

**FIGURE 2**
A comparison of the percentage of responses for each theme, by responder group. For more detail on how the themes were defined, refer to the supplementary material. *: p<0.05.

**FIGURE 3**
Percentage of responses for each theme, by patient subgroup: a) age <55 years (68 patients; 161 patient responses; 106 clinician responses); b) age ≥55 years (56 patients; 113 patient responses; 79 clinician responses); c) female (88 patients; 200 patient responses; 138 clinician responses); d) male (36 patients; 74 patient responses; 47 clinician responses); e) oral corticosteroid (OCS) low use (75 patients; 146 patient responses; 106 clinician responses); f) OCS high use (49 patients; 128 patient responses; 79 clinician responses). *: p<0.05.

See this image and copyright information in PMC

References

1. Chung KF, Wenzel SE, Brozek JL, et al. . International ERS/ATS guidelines on definition, evaluation and treatment of severe asthma. Eur Respir J 2014; 43: 343–373. doi:10.1183/09031936.00202013 - DOI - PubMed
1. Holguin F, Cardet JC, Chung KF, et al. . Management of severe asthma: a European Respiratory Society/American Thoracic Society guideline. Eur Respir J 2020; 55: 1900588. doi:10.1183/13993003.00588-2019 - DOI - PubMed
1. Anderson GP. Endotyping asthma: new insights into key pathogenic mechanisms in a complex, heterogeneous disease. Lancet 2008; 372: 1107–1119. doi:10.1016/S0140-6736(08)61452-X - DOI - PubMed
1. World Allergy Organization . The Management of Severe Asthma: Economic Analysis of the Cost of Treatments for Severe Asthma. 2005. www.worldallergy.org/educational_programs/world_allergy_forum/anaheim200.... Date last accessed: June 2018.
1. Siddiqui S, Gonem S, Wardlaw AJ. Advances in the management of severe asthma. Semin Respir Crit Care Med 2012; 33: 666–684. doi:10.1055/s-0032-1326964 - DOI - PubMed

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What bothers severe asthma patients most? A paired patient-clinician study across seven European countries

Affiliations

What bothers severe asthma patients most? A paired patient-clinician study across seven European countries

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

Associated data

LinkOut - more resources

Full Text Sources