Patient and Public Involvement focus on the engagement of patients, carers and citizens in research. In Portugal, training to involve patients with asthma in their health decisions or in research is not available. Our goal is to co-create an online educational programme for asthma patients/carers tailored to their needs. The first step was to identify the prominent topics perceived by patients/carers and health professionals (HP) to be included in the programme.
A committee of 6 patients/carers and 13 researchers developed a web-based cross-sectional study. Participants were asked to rank 19 predefined topics as ?very important/important/less important/non-important?. A topic was considered prominent when classified as ?very important? by ?80% of participants.
A total of 36 patients/carers and 38 HP participated. Both stakeholders classified ?Asthma attack? as prominent (patients/carers %,95%CI; 81,64-92 and HP 84,68-94). For the HP, ?Correct use of the inhaler? (89,75-97) and ?Physical activity & asthma? (82,66-92) were also prominent. Perceptions between patients/carers and HP were different in ?Asthma healthcare services?Public vs Private? (64,46-79 and 24,11-40); and tended to differ in ?Living with asthma? (75, 55-86 and 45, 29-62), and ?Written action plan? (42,26-59 and 71,54-85).
Patients/carers and HP identified the most prominent topics to be included. Discrepancies between stakeholders will be explored in the following rounds. Considering patients/carers' perceptions and needs is relevant to the design and effectiveness of interventions. By the end, we anticipate having implemented a high-quality,online self-learning programme on asthma