TableĀ 1

Application of the EULAR recommendations16 in the development of the PsAID

EULAR recommendationsApplication in PsAID
1Participation 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 projectsPatient participation has been an essential feature of the project to ensure that the PRO truly reflects the perspective of patients with psoriatic arthritis
2Participation 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 processPatients with psoriatic arthritis were involved in every phase of the development and validation process. The contribution varied depending on their patient role
3A minimum of two PRPs should be involved in each projectPRPs were proportionally represented, their number was similar to that of the physician-researchers
4Identification of potential PRPs should be supported by a clear description of expected contributionsPotential candidates received a comprehensive invitation, explaining in detail what was expected from them
5The selection process of PRPs should take into account communication skills, motivation and constructive assertiveness in a team settingPRPs 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
6The principal investigator must facilitate and encourage the contribution of PRPs, and consider their specific needsSupport 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
7The principal investigator must ensure that PRPs receive information and training appropriate to their rolesThe steering group provided regular updates and produced patient information packs before every team meeting, including a glossary of terms
8The contribution of PRPs to projects should be appropriately recognised, including coauthorship when eligibleAll 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.