title: Parent and health professional perspectives in the management of adolescents with diabetes: development of assessment instruments for international studies.
abstract: OBJECTIVE
  Assessment of quality of life (QOL) in adolescents with diabetes requires patient, parent and health professional input. Psychometrically robust instruments to assess parent and professional perspectives are required.
  
  
  METHODS
  Questionnaires concerning adolescent QOL were developed for completion by parents and health professionals. In an international study assessing QOL in 2,101 adolescents with diabetes (median age 14 years, range 10-18; from 17 countries including Europe, Japan and North America), parents and health professionals completed their respective questionnaires between March and August 1998.
  
  
  RESULTS
  Feasibility and acceptability of the new questionnaires were indicated by high questionnaire completion rates (adolescents 92%; parents 89%; health professionals 94%). Internal consistency was confirmed (Cronbach's alpha coefficients 0.80 parent; 0.86 health professional). Correlations of Diabetes Quality of Life Questionnaire for Youths (DQOLY) scores with parent and health professional global QOL ratings were generally low (r ranging from 0.12 to 0.36). Parent-rated burden decreased incrementally across adolescence, particularly for girls. Professional-rated burden followed a similar profile but only after age 15 years. Until then, burden was rated as uniformly high. Clinically relevant discrepancies in parent and professional burden scores were noted for one-parent families and families where adolescents had been referred for psychological help. In both cases, health professionals but not one-parent families perceived these as high burden situations. The clinical significance of this relates to the significantly poorer metabolic control recorded for adolescents in both situations.
  
  
  CONCLUSIONS
  Parent and health professional questionnaires were found to have adequate internal consistency, and convergent and discriminant validity in relation to key clinical and QOL outcomes. The questionnaires are brief, easy to administer and score. They may also enable comparisons across countries and languages to facilitate development of international health outcome parameters. The inclusion of the parent and health professional perspectives completes a comprehensive assessment of adolescent QOL relevant to diabetes.
authors.affiliation: Department of Paediatrics, Trinity College, National Children's Hospital, Tallaght, Dublin, 24, Ireland. hhoeydge@indigo.ie
authors.forename: Hilary
authors.initials: H
authors.lastname: Hoey
authors.forename: Hannah M
authors.initials: HM
authors.lastname: McGee
authors.forename: Michael
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authors.lastname: Fitzgerald
authors.forename: Henrik B
authors.initials: HB
authors.lastname: Mortensen
authors.forename: Philip
authors.initials: P
authors.lastname: Hougaard
authors.forename: Helle
authors.initials: H
authors.lastname: Lynggaard
authors.forename: Soren E
authors.initials: SE
authors.lastname: Skovlund
authors.forename: Henk-Jan
authors.initials: HJ
authors.lastname: Aanstoot
authors.forename: Francesco
authors.initials: F
authors.lastname: Chiarelli
authors.forename: Denis
authors.initials: D
authors.lastname: Daneman
authors.forename: Thomas
authors.initials: T
authors.lastname: Danne
authors.forename: Harry
authors.initials: H
authors.lastname: Dorchy
authors.forename: Patrick
authors.initials: P
authors.lastname: Garandeau
authors.forename: Stephen
authors.initials: S
authors.lastname: Greene
authors.forename: Reinhard
authors.initials: R
authors.lastname: Holl
authors.forename: Eero
authors.initials: E
authors.lastname: Kaprio
authors.forename: Mirjana
authors.initials: M
authors.lastname: Kocova
authors.forename: Pedro
authors.initials: P
authors.lastname: Martul
authors.forename: Nobuo
authors.initials: N
authors.lastname: Matsuura
authors.forename: Kenneth
authors.initials: K
authors.lastname: Robertson
authors.forename: Eugen
authors.initials: E
authors.lastname: Schoenle
authors.forename: Oddmund
authors.initials: O
authors.lastname: Sovik
authors.forename: Peter
authors.initials: P
authors.lastname: Swift
authors.forename: Rosa Maria
authors.initials: RM
authors.lastname: Tsou
authors.forename: Maurizio
authors.initials: M
authors.lastname: Vanelli
authors.forename: Jan
authors.initials: J
authors.lastname: Aman
mesh_terms: D000293:Adolescent; D001291:Attitude of Health Personnel; D002648:Child; D017281:Cost of Illness; D003920:Diabetes Mellitus / Q000523:psychology*; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D038622:Internationality; D008297:Male; D010290:Parents / Q000523:psychology*; D000297:Psychology, Adolescent / Q000295:instrumentation*; D011594:Psychometrics / Q000295:instrumentation*; D011788:Quality of Life; D012647:Self-Assessment; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires