title: Assessment of health-related quality of life and patient satisfaction in children and adolescents with growth hormone deficiency or idiopathic short stature - part 1: a critical evaluation of available tools.
abstract: The concept of health-related quality of life (HrQoL) reflects the subjective perception of health and includes aspects of well-being and functioning in physical, emotional, mental and social life domains. Nowadays, HrQoL has become a relevant treatment outcome from epidemiological and clinical perspectives and is also broadly employed in health economic analyses. To assess HrQoL generic as well as condition-specific instruments are used. The former are applicable to a wide range of health conditions and aim at measuring HrQoL across different conditions. The latter focus on capturing the impact of a specific disease. Although HrQoL research in adults is now well-advanced, there are still open questions regarding how to assess HrQoL in pediatric conditions, such as short stature. Eight generic (one chronic-generic) and seven condition-specific (one treatment-specific) instruments used in HrQoL research in short stature of youth are described. Additionally, this mini review identifies a need for further research and indicates potential directions.
authors.affiliation: Institute for Medical Psychology, University Hospital Hamburg Eppendorf, Hamburg, Germany. a.bruett@uke.uni-hamburg.de
authors.forename: Anna Levke
authors.initials: AL
authors.lastname: Brütt
authors.forename: David E
authors.initials: DE
authors.lastname: Sandberg
authors.forename: John
authors.initials: J
authors.lastname: Chaplin
authors.forename: Hartmut
authors.initials: H
authors.lastname: Wollmann
authors.forename: Meinolf
authors.initials: M
authors.lastname: Noeker
authors.forename: Maria
authors.initials: M
authors.lastname: Kołtowska-Häggström
authors.forename: Monika
authors.initials: M
authors.lastname: Bullinger
mesh_terms: D000293:Adolescent; D000328:Adult; D004392:Dwarfism / Q000453:epidemiology / Q000523:psychology / Q000628:therapy; D005260:Female; D019382:Human Growth Hormone / Q000172:deficiency*; D006801:Humans; D008297:Male; D011788:Quality of Life / Q000523:psychology*
chemical_list: D019382:Human Growth Hormone