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Evaluating the participation of junior members and patient and healthcare professionals representatives in EULAR task forces: results from an international survey.
Juge, Pierre-Antoine; Kragstrup, Tue Wenzel; Perez-Garcia, Luis Fernando; Frãzao-Mateus, Elsa; Makri, Souzi; Boyd, Peter; Primdahl, Jette; Ferreira, Ricardo J O; Vliet Vlieland, Theodora P M; Ndosi, Mwidimi; Kiltz, Uta; Landewé, Robert; Lauper, Kim; de Hooge, Manouk.
Afiliação
  • Juge PA; Service de Rhumatologie, Hôpital Bichat-Claude Bernard, AP-HP, Paris, France.
  • Kragstrup TW; INSERM UMR 1152, Université de Paris, Paris, France.
  • Perez-Garcia LF; Department of Biomedicine, Aarhus University, Aarhus, Denmark.
  • Frãzao-Mateus E; Department of Rheumatology, Aarhus Universitetshospital, Aarhus, Denmark.
  • Makri S; Sector for Rheumatology, Diagnostic Center, Silkeborg Regional Hospital, Silkeborg, Denmark.
  • Boyd P; Rheumatology, Erasmus MC, Rotterdam, The Netherlands.
  • Primdahl J; Portuguese League Against Rheumatic Diseases (LPCDR), Lisbon, Portugal.
  • Ferreira RJO; EULAR Patient Research Partner Network, EULAR, Zurich, Switzerland.
  • Vliet Vlieland TPM; Cyprus League Against Rheumatism, Nicosia, Cyprus.
  • Ndosi M; School of Pharmacy, Medical Biology Centre, Queen's University Belfast, Belfast, UK.
  • Kiltz U; University Hospital of Southern Denmark, Danish Hospital for Rheumatic Diseases, Sønderborg, Denmark.
  • Landewé R; Department of Regional Health Research, University of Southern Denmark, Odense, Denmark.
  • Lauper K; Danish Hospital for Rheumatic Diseases, University Hospital of Southern Denmark, Sønderborg, Denmark.
  • de Hooge M; Nursing Research, Innovation and Development Centre of Lisbon (CIDNUR), Higher School of Nursing of Lisbon, Lisboa, Portugal.
RMD Open ; 10(2)2024 Jun 12.
Article em En | MEDLINE | ID: mdl-38866591
ABSTRACT

OBJECTIVE:

European Alliance of Associations for Rheumatology (EULAR) task forces (TF) requires participation of ≥2 junior members, a health professional in rheumatology (HPR) and two patient research partners for the development of recommendations or points to consider. In this study, participation of these junior and representative members was compared with the one of traditional TF members (convenor, methodologist, fellow and expert TF members).

METHODS:

An online survey was developed and emailed to previous EULAR TF members. The survey comprised multiple-choice, open-ended and 0-100 rating scale (fully disagree to fully agree) questions.

RESULTS:

In total, 77 responded, 48 (62%) women. In total, 46 (60%) had participated as a junior or representative TF member. Most junior/representative members reported they felt unprepared for their first TF (10/14, 71%). Compared with traditional members, junior/representative members expressed a significantly higher level of uncertainty about their roles within the TF (median score 23 (IQR 7.0-52.0) vs 7 (IQR 0.0-21.0)), and junior/representative members felt less engaged by the convenor (54% vs 71%). Primary factors that facilitated interaction within a TF were experience, expertise and preparation (54%), a supportive atmosphere (42%) and a clear role (12%).

CONCLUSION:

Juniors, patients and HPR experience various challenges when participating in a EULAR TF. These challenges differ from and are generally less pronounced than those experienced by traditional TF members. The convenor should introduce the participants to the tasks, emphasise the value of their contributions and how to prepare accordingly for the TF meeting.
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Reumatologia / Pessoal de Saúde / Comitês Consultivos Limite: Adult / Female / Humans / Male / Middle aged País como assunto: Europa Idioma: En Ano de publicação: 2024 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Reumatologia / Pessoal de Saúde / Comitês Consultivos Limite: Adult / Female / Humans / Male / Middle aged País como assunto: Europa Idioma: En Ano de publicação: 2024 Tipo de documento: Article