George Maureen, Graff Camille, Bombezin-Domino Alexis, Pain Emilie
Columbia University School of Nursing, New York, USA.
Carenity, 1 rue de Stockholm, 75008, Paris, France.
Pulm Ther. 2022 Jun;8(2):209-223. doi: 10.1007/s41030-022-00190-z. Epub 2022 Apr 26.
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.
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.
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.
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.
我们这项观察性研究的目的是了解未得到有效控制的重度哮喘患者如何看待哮喘控制情况，并评估他们对医疗保健专业人员（HCPs）及其他利益相关者在哮喘管理中所起作用的看法。
共有200名居住在加拿大、法国、德国、意大利、西班牙、英国或美国且在Carenity哮喘社区注册的未得到有效控制的重度哮喘患者参与了一项患者调查。
虽然62%的受访者表示他们对哮喘了解很多，但他们对哮喘的控制情况并不完全满意。在长期哮喘控制中被认为重要的两个最有用的工具都围绕学习展开，即哮喘控制小贴士（76%）以及哮喘及其病因的信息（67%）。尽管不到一半（44%）的受访者能够获得哮喘教育项目，但72%的受访者表示他们会觉得这些项目有用。在前一年，大多数患者（78%）咨询了专科医生；然而，虽然54%的受访者参与了有关其治疗的共同决策（SDM），但不到三分之一（29%）的受访者觉得他们的意见得到了考虑，只有27%的受访者表示这有助于他们的HCPs制定明智的行动计划。然而，48%的受访者认为共同决策会有助于他们在实现长期控制方面更有信心。大多数受访者因未得到有效控制的重度哮喘而咨询了急诊室医生或执业护士，认为他们是有说服力的信息来源。此外，只有少数患者（12%）将患者权益倡导组织（PAGs）视为首选信息来源，或（6%）认为其有说服力。
大多数未得到有效控制的重度哮喘患者对自己的病情了解充分。然而，对于患者而言，在HCPs参与此过程的情况下，获取更多有关哮喘管理的信息会很有用。共同决策受到受访者的欢迎，但要取得成功，在制定哮喘管理行动计划时应考虑患者的意见。
