title: Quality of life, developmental milestones, and self-esteem of young adults with congenital hypothyroidism diagnosed by neonatal screening.
abstract: BACKGROUND
  With advances in the treatment of congenital hypothyroidism (CH), the neuropsychological functioning of CH patients is considerably improved. Although much is written about cognitive and motor development, little is known about emotional and social consequences for patients growing up with CH, diagnosed by neonatal screening.
  
  
  OBJECTIVE
  The objectives of the study were to: 1) compare health-related quality of life (HRQoL), developmental milestones also called course of life (CoL), sociodemographical outcomes, and self-esteem of CH patients with the general population; and 2) explore whether severity of CH was related to these outcomes.
  
  
  METHODS
  A total of 69 young adults with CH, born in The Netherlands in 1981-1982, completed the "TNO-AZL Questionnaire for Adult's Health related Quality of Life" questionnaire, the CoL survey (developmental milestones and sociodemographical outcomes), and a self-esteem questionnaire.
  
  
  METHODS
  HRQoL, CoL, social demographical outcomes, and self-esteem in young adults with CH were determined.
  
  
  RESULTS
  CH patients are more often at risk for HRQoL impairment and reported lower HRQoL on several domains (cognitive functioning, P < 0.0001; sleeping, P < 0.004; pain, P < 0.0001; daily activities, P < 0.004; vitality, P < 0.0001; aggressiveness, P < 0.0001; and depressive moods, P < 0.0001) compared with healthy adults. Patients reported a lower self-esteem (P < 0.005) and had a delayed CoL on the domain of social development (P < 0.016). There were no significant within-group differences between the severity groups for HRQoL, CoL, and self-esteem.
  
  
  CONCLUSIONS
  Negative consequences in terms of HRQoL, development, and self-esteem are prevalent in young adults with CH. Health care physicians should be attentive to these consequences and provide additional support (emotional and educational guidance) if necessary.
authors.affiliation: Pediatric Psychosocial Department, Emma Children's Hospital Academic Medical Center, Amsterdam, The Netherlands. L.vandersluijsveer@amc.uva.nl
authors.forename: L
authors.initials: L
authors.lastname: van der Sluijs Veer
authors.forename: M J E
authors.initials: MJ
authors.lastname: Kempers
authors.forename: B F
authors.initials: BF
authors.lastname: Last
authors.forename: T
authors.initials: T
authors.lastname: Vulsma
authors.forename: M A
authors.initials: MA
authors.lastname: Grootenhuis
mesh_terms: D000328:Adult; D002657:Child Development; D003409:Congenital Hypothyroidism / Q000175:diagnosis* / Q000503:physiopathology / Q000523:psychology*; D005260:Female; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D015997:Neonatal Screening; D011788:Quality of Life; D012649:Self Concept