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

Ben Ainsworth, Eleanor Chatburn, Aruna T. Bansal, Olivia Fulton, Dominique Hamerlijnck, Courtney Coleman, Katrien Eger, Michael Hyland, Joshua Holmes, Liam Heaney, Vratislav Sedlák, Sabina Škrgat, Natalija Edelbaher, Anneke Ten Brinke, Celeste Porsbjerg, Mina Gaga, Claudia Loureiro, Ratko Djukanovic, Emmanuelle Berret, Namhee Kwon

Research output: Contribution to journalArticlepeer-review

5 Citations (SciVal)

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.

Original languageEnglish
Article number00717-2022
Number of pages13
JournalERJ Open Research
Volume9
Issue number3
Early online date30 May 2023
DOIs
Publication statusPublished - 31 May 2023

Bibliographical note

Funding Information:
Support statement: This study was supported by an award from the Severe Heterogeneous Asthma Research collaboration, Patient-centred (SHARP) Clinical Research Collaboration (CRC). The SHARP CRC has been supported by unrestricted financial and in-kind contributions from the following consortium partners: European Respiratory Society, GlaxoSmithKline Research and Development Limited, Chiesi Farmaceutici SPA, Novartis Pharma AG, Sanofi-Genzyme Corporation and Teva Branded Pharmaceutical Products R&D, Inc. Funding information for this article has been deposited with the Crossref Funder Registry.

Publisher Copyright:
© The authors 2023.

ASJC Scopus subject areas

  • Pulmonary and Respiratory Medicine

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