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Title: What bothers severe asthma patients most? A paired patient-clinician study across seven European countries
Authors: Ainsworth, Ben
Chatburn, Eleanor
Bansal, Aruna T.
Fulton, Olivia
Hamerlijnck, Dominique
Coleman, Courtney
Eger, Katrien
Hyland, Michael
Holmes, Joshua
Heaney, Liam
Sedlák, Vratislav
Škrgat, Sabina
Edelbaher, Natalija
Ten Brinke, Anneke
Porsbjerg, Celeste
Gaga, Mina
Loureiro, Cláudia 
Djukanovic, Ratko
Berret, Emmanuelle
Kwon, Namhee
Issue Date: May-2023
Publisher: European Respiratory Society
Serial title, monograph or event: ERJ Open Research
Volume: 9
Issue: 3
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, Patientcentred) 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.
ISSN: 2312-0541
DOI: 10.1183/23120541.00717-2022
Rights: openAccess
Appears in Collections:FMUC Medicina - Artigos em Revistas Internacionais

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