Patients with Severe Uncontrolled Asthma: Perception of Asthma Control and its Management

INTRODUCTION: The aim of our observational study was to understand how patients with uncontrolled severe asthma perceive asthma control, and to assess their views on the role of healthcare professionals (HCPs) and other stakeholders in asthma management. METHODS: In total, 200 patients with uncontrolled, severe asthma living in Canada, France, Germany, Italy, Spain, the UK, or the USA registered on the Carenity asthma community responded to a patient survey. RESULTS: While 62% of respondents indicated they knew a lot about asthma, they were not entirely satisfied with its control. The two most helpful tools considered important in long-term asthma control were centered on learning, with tips on asthma control (76%), as well as information on asthma and its causes (67%). Although asthma education programs were accessible to less than half (44%) of the respondents, 72% said they would find them useful. In the previous year, most patients (78%) consulted a specialist; however, while 54% of respondents participated in shared decision-making (SDM) concerning their treatment, less than one-third (29%) felt their opinion had been considered, and only 27% said it helped their HCPs to develop an informed action plan. However, 48% believed that SDM would help them feel more confident in achieving long-term control. Most respondents consulted emergency room doctors or nurse practitioners because of their uncontrolled severe asthma, finding them persuasive sources of information. Additionally, patient advocacy organizations (PAGs) were considered as a preferred (12%) or persuasive (6%) source by only a few patients. CONCLUSION: Most people with uncontrolled severe asthma were well informed about their disease. However, better information on asthma management would be useful for patients, with HCPs involved in this process. SDM was welcomed by respondents, but, to be successful, the patients’ opinions should be taken into consideration when forming an asthma management action plan. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s41030-022-00190-z.