gms | German Medical Science

G-I-N Conference 2012

Guidelines International Network

22.08 - 25.08.2012, Berlin

Exploring values and preferences of patients and their families for childhood Leukemias and Lymphomas Clinical Practice Guidelines. Concept mapping as an efficient methodological approach

Meeting Abstract

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  • H.F. Molina Leon - Clinical Research Institute, Universidad Nacional de Colombia, Bogotá, Colombia
  • D.P. Rivera Triana - Clinical Research Institute, Universidad Nacional de Colombia, Bogotá, Colombia

Guidelines International Network. G-I-N Conference 2012. Berlin, 22.-25.08.2012. Düsseldorf: German Medical Science GMS Publishing House; 2012. DocO21

doi: 10.3205/12gin053, urn:nbn:de:0183-12gin0533

Veröffentlicht: 10. Juli 2012

© 2012 Molina Leon 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: Concept mapping has been proposed as a method to explore patients preferences and values for health care services planning, however there is a lack of experience in the context of Clinical Practice Guidelines (CPG)

Objectives: To explore the preferences and values of patients and their relatives regarding the process of care, of the childhood most prevalent leukemias and lymphomas, that are to be included in a CPG.

Methods: A concept mapping workshop was held with a group of 24 participants purposely selected. A four-phase process was accomplished to generate a structured visual representation of the participants' ideas and opinions about the process of care. The results were interpreted by the same group and then used in the CPG development activities.

Results: Eight groups of factors assure an adequate process of care for childhood leukemias and lymphomas: Hospital infrastructure, professionals´ technical capacity, health care insurance, hospital environment adaptation, family-given care, home-hospitals links, emotional support, information and family support. Those results were translated into clinical questions and outomes for a CPG development.

Discussion: From patients and carer prespective, institutional care, family care and health systems factors impact the quality of life of children with leukemia/lymphoma and should be considered when formulatin recommendations for a CPG. Improving communication between health care personnel and families is also regarded as highly important.

Implications for guidelines developers/users: Concept mapping is an efficient methodology to explore patients´ preferences and values. A transparent approach was proposed to translate our research results into information useful for a CPG developer.