gms | German Medical Science

G-I-N Conference 2012

Guidelines International Network

22.08 - 25.08.2012, Berlin

Added value of end-users and patients involvement in a GRADEing world: insights from a case study

Meeting Abstract

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  • L. Pinsonneault - Institut national d'excellence en santé et en services sociaux (INESSS), Montréal, Canada; Département des sciences de la santé communautaire, Université de Sherbrooke, Sherbrooke, QC, Canada
  • M. Fournier - Institut national d'excellence en santé et en services sociaux (INESSS), Montréal, Canada
  • V. Déry - Institut national d'excellence en santé et en services sociaux (INESSS), Montréal, Canada; Département de médecine sociale et préventive, Université de Montréal, Montréal, Canada

Guidelines International Network. G-I-N Conference 2012. Berlin, 22.-25.08.2012. Düsseldorf: German Medical Science GMS Publishing House; 2012. DocO44

doi: 10.3205/12gin076, urn:nbn:de:0183-12gin0765

Veröffentlicht: 10. Juli 2012

© 2012 Pinsonneault et al.
Dieser Artikel ist ein Open Access-Artikel und steht unter den Creative Commons Lizenzbedingungen ( Er darf vervielfältigt, verbreitet und öffentlich zugänglich gemacht werden, vorausgesetzt dass Autor und Quelle genannt werden.



Background: It is widely recommended that end-users and patient representatives be involved in guideline development groups (GDG). There is still some debate about the actual benefits of such involvement.

Objective: To examine the effects of end-users’ and patient representatives’ involvement on evidence appraisal and on the formulation and grading of recommendations.

Methods: In the development of our guideline on the management of childhood obesity, end-users/parents met as a separate group and as a part of the GDG, together with experts and stakeholders. We determined, through discourse analysis, their influence at outset (i.e. on selecting relevant outcomes) and in later stages while establishing the acceptability of adverse effects and the preferences and values about treatment.

Results: End-users and parents put more emphasis on treatment outcomes related to psychosocial well-being. Their tolerance of adverse effects was very low. They also had a low acceptability of anti-obesity drugs.

Discussion: The information supplied by end-users and parents facilitated our use of GRADE. It contributed to the choice of treatment outcomes to include in evidence appraisal. It also gave us information to help answer some of the questions required to determine the strength of the recommendations, such as acceptability of the risk/benefit ratio and treatment preferences.

Implications for guideline developers: Involving end-users and parents in the development of our guideline gave us more information than could be obtained in the literature and helped us in using GRADE. However, it was also time and resource consuming. Methods for effective involvement requiring fewer resources hould be developed.