Application of the EULAR recommendations16 in the development of the PsAID
| EULAR recommendations | Application in PsAID | |
|---|---|---|
| 1 | Participation of PRPs is strongly recommended for clinical research projects and for the development of recommendations and guidelines, and should be considered for all other research projects | Patient participation has been an essential feature of the project to ensure that the PRO truly reflects the perspective of patients with psoriatic arthritis |
| 2 | Participation of PRPs should be considered in all phases of the project to provide experiential knowledge, with the aim of improving the relevance, quality and validity of the research process | Patients with psoriatic arthritis were involved in every phase of the development and validation process. The contribution varied depending on their patient role |
| 3 | A minimum of two PRPs should be involved in each project | PRPs were proportionally represented, their number was similar to that of the physician-researchers |
| 4 | Identification of potential PRPs should be supported by a clear description of expected contributions | Potential candidates received a comprehensive invitation, explaining in detail what was expected from them |
| 5 | The selection process of PRPs should take into account communication skills, motivation and constructive assertiveness in a team setting | PRPs were selected by their treating physicians based on a set of criteria, among which were communication skills, English reading and speaking and ability to travel |
| 6 | The principal investigator must facilitate and encourage the contribution of PRPs, and consider their specific needs | Support was provided by premeeting update sessions for patients. Identification of domains took place in a homogeneous patient meeting to guarantee a safe environment. During team meetings patients were encouraged to take part in the discussions and were regularly asked for their opinion |
| 7 | The principal investigator must ensure that PRPs receive information and training appropriate to their roles | The steering group provided regular updates and produced patient information packs before every team meeting, including a glossary of terms |
| 8 | The contribution of PRPs to projects should be appropriately recognised, including coauthorship when eligible | All PRPs whose participation maintained throughout the project became coauthor of the scientific manuscript |
EULAR, European League Against Rheumatism; PRO, patient-reported outcome; PRPs, patient research partners; PsAID, Psoriatic Arthritis Impact of Disease.