Abstract
Introduction Severe asthma is a complex, multi-dimensional 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 bothersome aspect(s) of their asthma. Patients’ responses were linked with their treating clinician who also completed 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 Clinical Research Collaboration were examined to see the extent to which they reflected the most bothersome aspects reported by patients.
Results Eighty-eight 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 their disease. Clinicians accurately identified a most bothersome symptom for 29% of patients. Agreement was particularly low in younger patients and those infrequently using oral corticosteroids. 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 multi-disciplinary treatment teams. The use of questionnaires that include multi-faceted aspects of disease may result in improved asthma research.
Footnotes
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Conflict of interest: BA is a member of the UK Taskforce for Lung Health, has received honoraria for educational talks from Astra-Zeneca and sits on advisory boards for the Medito Foundation, earGym.
Conflict of interest: MH has received grant income from Teva, GSK and Astra-Zeneca.
Conflict of interest: Liam G. 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, and Glaxo Smith Kline, Amgen, Genentech/Hoffman la Roche, Astra Zeneca, MedImmune, Glaxo Smith Kline, 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: VS has received honoraria for educational talks and advisory board from Astra-Zeneca, GSK, Novartis, TEVA, Chiesi and Boheringer Ingelheim.
Conflict of interest: AB has received honoraria for educational talks and advisory board from Astra-Zeneca, GSK, Novartis, Sanofi, TEVA, and grant income from Astra-Zeneca, GSK and TEVA.
Conflict of interest: NE has received honoraria for educational talk and advisory board from Astra-Zeneca, Sanofi, Novartis,GSK, Amgen, Boherringer Ingelheim, Chiesi and Berlin Chemie.
Conflict of interest: CL has received honoraria for educational talks and advisory board from Astra-Zeneca, GSK, Jaba-Recordati, Novartis, Sanofi, TEVA.
Conflict of interest: RD has received honoraria for education talks and advisory board from AZ, GSK, Teva, Novartis and Sanofi. NK is a GSK employee and holds stocks of GSK at the time of manuscript writing.
Conflict of interest: All other authors have no competing interests.
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