gms | German Medical Science

G-I-N Conference 2012

Guidelines International Network

22.08 - 25.08.2012, Berlin

How to develop a quality patient version guideline: the experience from a National Clinical Practice Guideline for Sleep Disorders of Childhood and Adolescence

Meeting Abstract

  • P. Díaz Del Campo - Agencia Laín Entralgo. Health Technology Assessment Unit (UETS), Madrid, Spain
  • J. Gracia - Agencia Laín Entralgo. Health Technology Assessment Unit (UETS), Madrid, Spain
  • F. Izquierdo - Agencia Laín Entralgo. Health Technology Assessment Unit (UETS), Madrid, Spain
  • M. Guerra - Agencia Laín Entralgo. Health Technology Assessment Unit (UETS), Madrid, Spain
  • B. Nieto - Agencia Laín Entralgo. Health Technology Assessment Unit (UETS), Madrid, Spain
  • J.A. Blasco - Agencia Laín Entralgo. Health Technology Assessment Unit (UETS), Madrid, Spain

Guidelines International Network. G-I-N Conference 2012. Berlin, 22.-25.08.2012. Düsseldorf: German Medical Science GMS Publishing House; 2012. DocO43

DOI: 10.3205/12gin075, URN: urn:nbn:de:0183-12gin0754

Published: July 10, 2012

© 2012 Díaz Del Campo et al.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by-nc-nd/3.0/deed.en). You are free: to Share – to copy, distribute and transmit the work, provided the original author and source are credited.


Outline

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Background: Development of quality clinical practice guidelines (CPGs) implies the inclusion of patient’s version as part of the full CPG. That version should be based on the CPG for professionals and aimed at patients/family/caregivers.

Objectives: To develop a quality parents´ version of a CPG for the management of Sleep Disorders of Childhood and Adolescence in Primary Care.

Methods: A subgroup of the guideline development group, with patients and patients' representatives, was formed. A systematic review (SR) of the evidence from relevant quantitative and qualitative studies was done. We also performed a qualitative research (QR)(focus group) with patients. An external review of the final draft was done by parents. An illustrator helped with illustrations and design.

Results: Information from the SR and QR provides parents and teens the knowledge and management of sleep problems. Preventive recommendations about sleep hygiene are included. It also contains practical advises about what to do when visiting the health centre and measure tools (sleep diaries). Useful information about patient organizations, Internet web sites, reference books and other resources of interest is also included.

Discussion: Relevant evidence and patients´ views are the key elements for a quality patient version. These versions help parents to understand the recommendations of the CPG and improve communication between health professional and patients. This also facilitates a better dissemination and implementation of the CPG.

Implications for guideline developers/users: Patients’ participation helps to achieve quality patients’ versions of the CPG. Patient involvement should be promoted in all CPGs Development Programs.