A Patient-Centered Description of Severe Asthma: Patient Understanding Leading to Assessment for a Severe Asthma Referral (PULSAR)
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Résumé
Although severe asthma can be life-threatening, many patients are unaware they have this condition. Patient Understanding Leading to Assessment for a Severe Asthma Referral (PULSAR) is a novel, multidisciplinary working group aiming to develop and disseminate a global, patient-centered description of severe asthma to improve patient understanding of severe asthma and effect a change in patient behavior whereby patients are encouraged to visit their healthcare professional, when appropriate. Current definitions from patient organization websites, asthma guidelines, and medication information for key asthma drugs were assessed and informed a multidisciplinary working group, convened to identify common concepts and terminology used to define severe asthma. A patient-centered description of severe asthma and patient checklist were drafted based on working-group discussions and reviewed by an external behavioral scientist for patient understanding and relevance. These were tested using an online US/Canadian survey. The patient-centered description of severe asthma and patient checklist were reviewed and re-drafted by the authors. The text was simplified following the behavioral-scientist review. The survey (n = 153) included 105 patients with severe asthma. Of those with severe asthma, 92.2% of patients reported that the description was consistent with their experiences of severe asthma and 92.6% of patients reported that the PULSAR initiative would encourage them to visit their healthcare provider. A patient-centered description of severe asthma has been developed and tested using patients with severe asthma; this description will allow patients to assess whether they might have severe asthma and prompt them to visit their healthcare provider, if appropriate. Severe asthma is a serious form of asthma. It can be harmful to your health and affect the way you live your life. Some patients do not know that they have severe asthma or visit their doctor and ask for help. A new group, called Patient Understanding Leading to Assessment for a Severe Asthma Referral (PULSAR), would like to help patients understand their asthma symptoms. They have developed a description of severe asthma and a checklist. These may help patients decide if their symptoms require a visit to the doctor. The PULSAR description and checklist were developed in four parts. Part 1 looked at if patients and doctors/nurses defined severe asthma in the same way. Results showed that patients defined severe asthma using symptoms and doctors defined severe asthma using treatments. In Part 2, patients, patient advocacy group members, nurses, doctors, specialists, and a scientist talked about the ways severe asthma were described in Part 1. The group agreed on a set of words to describe severe asthma. These words were then used in the PULSAR description and checklist. In Part 3, a behavioral scientist reviewed the PULSAR description and checklist. They said that simple language would make it easy to understand. In Part 4, patients with severe asthma were asked what they thought about the description and checklist using an online survey. The survey showed that almost all patients understood the description and checklist. Many patients said that the description and checklist encouraged them to see a doctor. A new description of severe asthma and checklist have been developed by PULSAR. Testing shows that they should encourage patients to visit their doctor when needed. This may help patients understand their symptoms and help doctors make the correct diagnosis. This should help patients get the support and treatment they need.
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| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,000 | 0,000 |
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| Méta-épidémiologie (sens large) | 0,001 | 0,000 |
| Bibliométrie | 0,000 | 0,000 |
| Études des sciences et des technologies | 0,000 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,000 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 0,000 |
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