title: Health related quality of life and psychological outcome in patients treated for craniopharyngioma in childhood.
abstract: Patients with craniopharyngioma are at risk for many adverse effects related to the tumour's invasive behaviour and its proximity to many vital structures. Profound psychosocial problems, memory impairment, pituitary and hypothalamic dysfunction in addition to the physical handicap of visual loss are frequently recognized sequelae of craniopharyngioma treatment.
  
  
  OBJECTIVE
  To examine health related quality of life (QoL) and psychological outcomes of patients treated for craniopharyngioma at the Royal Children's Hospital, Melbourne, between January 1980 and September 2003.
  
  
  METHODS
  Seven (17.4%) of 46 (26 male) had died. Thirty-nine remained, of whom 30 were contactable. Eighteen of 30 (8 male), mean age 21.2 +/- 6.7 years, agreed to evaluation, of whom 16/18 (88.9%) had three or more pituitary hormone deficiencies, 11/18 had visual impairment and 9/18 obesity.
  
  
  METHODS
  The Adult GH-Deficient Assessment (AGHDA) and Psychological General Well-Being (PGWB) questionnaires were employed to assess quality of life in patients and age- and sex-matched healthy controls. Additional psychological assessment, including intellectual and academic skills, emotional function, and adaptive behaviour, had been undertaken in 12 patients at a previous time.
  
  
  RESULTS
  High levels of physical morbidity and psychological disability were described. The General Health score of patients was significantly worse than for controls on PGWB (p = 0.025), anxiety was higher in those who had surgery alone (p = 0.008) and subjective QoL associated with GHD using AGHDA was lower (p = 0.006). Few craniopharyngioma survivors (18/30) were available for evaluation, demonstrating difficulties in attempts to assess this complex group. The discrepancy between results of objective and subjective measures of QoL is discussed in terms of adaptation to illness, disabilities and changed perception of life fulfilment.
  
  
  CONCLUSIONS
  Craniopharyngioma and its treatment result in significant, complex medical, social, psychological and emotional difficulties. The degree of global disability is not reflected in subjective QoL reports for this group, highlighting the need for careful selection of assessment instruments.
authors.affiliation: Department of Endocrinology and Diabetes, Royal Children's Hospital, Parkville, Victoria, Australia.
authors.forename: C C
authors.initials: CC
authors.lastname: Pedreira
authors.forename: R
authors.initials: R
authors.lastname: Stargatt
authors.forename: H
authors.initials: H
authors.lastname: Maroulis
authors.forename: J
authors.initials: J
authors.lastname: Rosenfeld
authors.forename: W
authors.initials: W
authors.lastname: Maixner
authors.forename: G L
authors.initials: GL
authors.lastname: Warne
authors.forename: M R
authors.initials: MR
authors.lastname: Zacharin
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology; D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D003397:Craniopharyngioma / Q000401:mortality / Q000523:psychology* / Q000628:therapy; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007031:Hypothalamus / Q000503:physiopathology*; D007223:Infant; D007361:Intelligence Tests; D008297:Male; D009483:Neuropsychological Tests; D009765:Obesity / Q000209:etiology / Q000523:psychology; D010911:Pituitary Neoplasms / Q000401:mortality / Q000523:psychology* / Q000628:therapy; D011788:Quality of Life / Q000523:psychology*; D012647:Self-Assessment; D016896:Treatment Outcome