title: [Well-being in adulthood of patients with chronic conditions in childhood: The GEDEPAC-2 questionnaire].
abstract: BACKGROUND
  In France, chronic diseases affect 3 million children. In children with chronic conditions, long-term somatic outcome has been well described, but little is known about the psychosocial aspects of well-being.
  
  
  METHODS
  Our aim was to build a self-administered questionnaire of global well-being in adults who had a chronic disease since or during childhood using a multidimensional and nonspecific approach. The questionnaire was constructed by a multidisciplinary group (epidemiologists, clinicians, sociologist, statistician). Items were built in compliance with reference data from the French general population (national surveys, free access) to allow comparative analysis adjusted for age and sex (and eventually other confounding factors) by indirect standardization (qualitative variables) or Z-scores (quantitative variables).
  
  
  RESULTS
  The GEDEPAC-2 includes 108 items exploring 11 domains: education, employment, housing, material security, social links, civic engagement, leisure, environment, physical health/risky behavior, health-related quality of life and sex life. Factual questions and satisfaction scales jointly explore social well-being. Quality of life is analyzed in terms of physical quality of life, mental quality of life, fatigue and burden of treatment by 3 questionnaires validated in French (SF-12; MFI-20; Burden of Treatment Questionnaire). Experience of transition from pediatric to adult healthcare is described in 21 items. Paper and electronic versions were developed.
  
  
  CONCLUSIONS
  Built in a multidimensional approach to well-being and in line with the available reference data, GEDEPAC-2 will facilitate the implementation of future studies on impact in adulthood of chronic disease in childhood.
authors.affiliation: ECEVE, UMRS 1123, université Paris Diderot, Sorbonne Paris Cité, 10, avenue de Verdun, 75010 Paris, France; Inserm, ECEVE U1123, CIC-EC, CIC 1426, 10, avenue de Verdun, 75010 Paris, France; Unité d'épidémiologie clinique, hôpital Robert-Debré, Assistance publique-Hôpitaux de Paris, 48, boulevard Sérurier, 75019 Paris, France. Electronic address: helene.mellerio@inserm.fr.
authors.forename: H
authors.initials: H
authors.lastname: Mellerio
authors.affiliation: U1018, équipe d'épidémiologie des radiations, centre de recherche en épidémiologie et santé des populations, 114, rue Édouard-Vaillant, 94805 Villejuif cedex, France.
authors.forename: A
authors.initials: A
authors.lastname: Dumas
authors.affiliation: ECEVE, UMRS 1123, université Paris Diderot, Sorbonne Paris Cité, 10, avenue de Verdun, 75010 Paris, France; Inserm, ECEVE U1123, CIC-EC, CIC 1426, 10, avenue de Verdun, 75010 Paris, France; Unité d'épidémiologie clinique, hôpital Robert-Debré, Assistance publique-Hôpitaux de Paris, 48, boulevard Sérurier, 75019 Paris, France.
authors.forename: S
authors.initials: S
authors.lastname: Guilmin-Crépon
authors.affiliation: Service de néphrologie pédiatrique, hôpital Robert-Debré, Assistance publique-Hôpitaux de Paris, 48, boulevard Sérurier, 75019 Paris, France.
authors.forename: C
authors.initials: C
authors.lastname: Loirat
authors.affiliation: Inserm, pôle recherche clinique, 101, rue de Tolbiac, 75013 Paris, France.
authors.forename: C
authors.initials: C
authors.lastname: Lévy-Marchal
authors.affiliation: Service de néphrologie et transplantation, institut francilien de recherche en néphrologie et transplantation, hôpital Henri-Mondor, Assistance publique-Hôpitaux de Paris, 51, avenue du Maréchal-de-Lattre-de-Tassigny, 94010 Créteil, France; Université Paris-Est Créteil, 61, avenue du Général-de-Gaulle, 94010 Créteil cedex, France.
authors.forename: V
authors.initials: V
authors.lastname: Audard
authors.affiliation: U1018, équipe d'épidémiologie des radiations, centre de recherche en épidémiologie et santé des populations, 114, rue Édouard-Vaillant, 94805 Villejuif cedex, France; Institut Gustave-Roussy, 114, rue Édouard-Vaillant, 94805 Villejuif cedex, France; Université Paris Sud, 91405 Orsay cedex, France.
authors.forename: F
authors.initials: F
authors.lastname: de Vathaire
authors.affiliation: ECEVE, UMRS 1123, université Paris Diderot, Sorbonne Paris Cité, 10, avenue de Verdun, 75010 Paris, France; Inserm, ECEVE U1123, CIC-EC, CIC 1426, 10, avenue de Verdun, 75010 Paris, France; Unité d'épidémiologie clinique, hôpital Robert-Debré, Assistance publique-Hôpitaux de Paris, 48, boulevard Sérurier, 75019 Paris, France.
authors.forename: C
authors.initials: C
authors.lastname: Alberti
mesh_terms: D000293:Adolescent; D000328:Adult; D017668:Age of Onset; D002648:Child; D002669:Child Welfare; D002908:Chronic Disease / Q000453:epidemiology* / Q000523:psychology*; D004651:Employment; D005260:Female; D005602:France / Q000453:epidemiology; D006801:Humans; D008297:Male; D011788:Quality of Life; D012649:Self Concept; D011795:Surveys and Questionnaires; D060305:Transition to Adult Care / Q000592:standards / Q000706:statistics & numerical data; D055815:Young Adult
keywords: Child; Chronic disease; Enfant; Maladie chronique; Participation sociale; Quality of life; Qualité de vie; Questionnaires; Sexuality; Sexualité; Social participation; Transition aux soins pour adultes; Transition to adult care