The most bothersome aspects in patients with severe asthma (BIPAR)
Research type
Research Study
Full title
The most bothersome aspects in patients with severe asthma and availability in the severe asthma registries (BIPAR study)
IRAS ID
290021
Contact name
Ben Ainsworth
Contact email
Sponsor organisation
University of Bath
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Research Summary
The aim of this study is to explore discrepancies and similarities between patients and physicians perceptions of the patient’s most bothersome symptoms or problems, and to describe if they are well reflected in the registries. Specific objectives are therefore to:
1. Identify the important symptoms/problems as seen by patients and physicians.
2. Identify differences in perspectives between patients and physicians.
3. Describe discordance between registry variables and patients’ and physicians’ perspectives
This will help increase awareness amongst physicians regarding patients’ perspectives on the burden of severe asthma and provide evidence for any need for the development of a patient-reported outcome measure.3.1. Study design
This is an observational qualitative study with patient and physician surveys. Physicians consecutively recruit severe asthma patients who will remain anonymous throughout the study. Both patients and physicians who manage recruited patients will take part in an online survey to answer questions.We will then compare the survey results (ie which identified aspects of asthma are ‘most bothersome’) with the types of registry variables that are collected from the participating physicians’ own registries, to see if a registry captures bothersome aspects of asthma from patient’s perspectives (note: this comparison will use registry variable titles and descriptions; not the data collected from the register).
This study will be conducted simultaneously across several international centres that are all part of the SHARP (severe asthma group). Separate ethics approval will be sought for each centre. This NHS/IRAS application ONLY refers to the UK patient recruitment.
Summary of Results
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.
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.
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.
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.REC name
London - London Bridge Research Ethics Committee
REC reference
20/PR/0873
Date of REC Opinion
21 Dec 2020
REC opinion
Further Information Favourable Opinion