title: Annual Research Review: Quality of life and childhood mental and behavioural disorders - a critical review of the research.
abstract: BACKGROUND
  An individual's subjective perception of well-being is increasingly recognized as an essential complement to clinical symptomatology and functional impairment in children's mental health. Measurement of quality of life (QoL) has the potential to give due weight to the child's perspective.
  
  
  METHODS
  Our aim was to critically review the current evidence on how childhood mental disorders affect QoL. First, the major challenges in this research field are outlined. Then we present a systematic review of QoL in children and adolescents aged 0-18 years formally diagnosed with a mental and behavioural disorder, as compared to healthy or typically developing children or children with other health conditions. Finally, we discuss limitations of the current evidence base and future directions based on the results of the systematic review and other relevant literature.
  
  
  CONCLUSIONS
  The systematic review identified 41 eligible studies. All were published after the year 2000 and 21 originated in Europe. The majority examined QoL in neurodevelopmental disorders, including attention-deficit hyperactivity disorder (k = 17), autism spectrum disorder (k = 6), motor disorders (k = 5) and intellectual disability (k = 4). Despite substantial heterogeneity, studies demonstrate that self-reported global QoL is significantly reduced compared to typical/healthy controls across several disorders and QoL dimensions. Parents' ratings were on average substantially lower, casting doubt on the validity of proxy-report. Studies for large diagnostic groups such as depressive disorders, anxiety disorders, (early onset) schizophrenia and eating disorders are largely lacking. We conclude that representative, well-characterized normative and clinical samples as well as longitudinal and qualitative designs are needed to further clarify the construct of QoL, to derive measures of high ecological validity, and to examine how QoL fluctuates over time and is attributable to specific conditions or contextual factors.
authors.affiliation: Neuropsychiatry Unit, Department of Women's and Children's Health, Center of Neurodevelopmental Disorders (KIND), Karolinska Institutet, Stockholm, Sweden.|Child and Adolescent Psychiatry, Center of Psychiatry Research, Stockholm County Council, Stockholm, Sweden.|Department of Neuroscience, Child and Adolescent Psychiatry, Uppsala University, Uppsala, Sweden.
authors.forename: Ulf
authors.initials: U
authors.lastname: Jonsson
authors.affiliation: Neuropsychiatry Unit, Department of Women's and Children's Health, Center of Neurodevelopmental Disorders (KIND), Karolinska Institutet, Stockholm, Sweden.|Department of Neuroscience, Child and Adolescent Psychiatry, Uppsala University, Uppsala, Sweden.
authors.forename: Iman
authors.initials: I
authors.lastname: Alaie
authors.affiliation: Neuropsychiatry Unit, Department of Women's and Children's Health, Center of Neurodevelopmental Disorders (KIND), Karolinska Institutet, Stockholm, Sweden.|Child and Adolescent Psychiatry, Center of Psychiatry Research, Stockholm County Council, Stockholm, Sweden.
authors.forename: Anna
authors.initials: A
authors.lastname: Löfgren Wilteus
authors.affiliation: Neuropsychiatry Unit, Department of Women's and Children's Health, Center of Neurodevelopmental Disorders (KIND), Karolinska Institutet, Stockholm, Sweden.|Child and Adolescent Psychiatry, Center of Psychiatry Research, Stockholm County Council, Stockholm, Sweden.
authors.forename: Eric
authors.identifier: http://orcid.org/0000-0002-2267-5813
authors.initials: E
authors.lastname: Zander
authors.affiliation: Neuropsychiatry Unit, Department of Women's and Children's Health, Center of Neurodevelopmental Disorders (KIND), Karolinska Institutet, Stockholm, Sweden.|iDN - Interdisciplinary Developmental Neuroscience, Institute of Physiology, Medical University of Graz, Graz, Austria.
authors.forename: Peter B
authors.initials: PB
authors.lastname: Marschik
authors.affiliation: Departments of Paediatrics and Psychiatry, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Melbourne, Vic, Australia.|Division of Neuroscience, School of Medicine, University of Dundee, Dundee, UK.
authors.forename: David
authors.initials: D
authors.lastname: Coghill
authors.affiliation: Neuropsychiatry Unit, Department of Women's and Children's Health, Center of Neurodevelopmental Disorders (KIND), Karolinska Institutet, Stockholm, Sweden.|Child and Adolescent Psychiatry, Center of Psychiatry Research, Stockholm County Council, Stockholm, Sweden.
authors.forename: Sven
authors.initials: S
authors.lastname: Bölte
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D006801:Humans; D007223:Infant; D001523:Mental Disorders / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*
keywords: Quality of life; adolescence; mental health; psychopathology