Expert consensus in the development of a European health‐related quality of life measure for children and adolescents: a Delphi study

Abstract

Aim: To determine the level of consensus among experts regarding content, structure and sources of content for a new European measure of health‐related quality of life in children and adolescents. Methods: A three‐round Delphi questionnaire was sent by e‐mail to 24 experts in quality of life measurement in 9 European countries. Consensus was considered reached when ≫90% of experts either agreed or disagreed with a given statement, or where median scores were over 6 on a scale of 1–10, and score dispersion was within predefined limits. Results: Completed questionnaires were received from 20 panellists in each round. It was agreed that the new instrument should be a multidimensional, profile measure with 30–49 items covering 5–8 dimensions, which should take no more than 10–15 min to complete. Agreement was also reached on 8 specific dimensions to include in the questionnaire (psychological well‐being, self‐esteem, body image, cognitive functioning, mobility, energy/vitality, social relations, family/home function). Consensus was against the use of individualized questionnaires. Focus groups with children, parents and workers in the field, literature and instrument reviews were considered appropriate sources for content. Conclusion: Using a Delphi method in this way for the first time showed it to be a feasible and useful method for establishing a conceptual and operational framework for the Kidscreen questionnaire.

Fiabilidad y validez del cuestionario KIDSCREEN-52 para medir calidad de vida relacionada con la salud para población argentina de 8 a 18 años.

“…[8][9][10] El cuestionario KIDSCREEN 11 se desarrolló por medio de una metodología rigurosa acorde a las recomendaciones internacionalmente consensuadas por un grupo de expertos en CVRS. 12,13 Los ítems que componen el cuestionario fueron producidos a partir de grupos focales con niños, niñas y adolescentes de 8 a 18 años de varios paí-ses europeos. Luego fueron clasificados en dimensiones de la CVRS por expertos y probados en entrevistas con niños de las mismas edades para seleccionar aquellas preguntas, períodos temporales y escalas de respuesta que fueran mejor comprendidos por ellos.…”

Health-related quality of life: gender differences in childhood and adolescence

“…It is the first questionnaire in the field of HRQOL of children and adolescents which has been developed from the onset in multiple languages and for the large age span from eight to 18 years. The contents of the questionnaire were compiled from an expert view with a literature research and a delphi study (Rajmil et al 2004;Herdman et al 2002) as well as with input from children's and adolescents' focus groups (Detmar et al 2005). For the translation a forward-backwardtechnique with reconciliation was used and the questionnaires were pre-tested by cognitive interviews in order to guarantee a good cross-cultural validity.…”

Reliability and validity of the KIDSCREEN-52 questionnaire to measure health related quality of life in the 8 to 18 year-old Argentinean population

“…[8][9][10] The KIDSCREEN 11 questionnaire was created using a strict methodology in compliance with the internationally-agreed guidelines submitted by a group of experts on HRQoL. 12,13 The questionnaire items were developed based on focus groups with 8 to 18 year old children and adolescents from different European countries. They were then classified in HRQoL dimensions by experts and tested in interviews with children of the same age in order to select the questions, time periods and answer scales best understood by them.…”