title: Quality of life of adult retinoblastoma survivors in the Netherlands.
abstract: BACKGROUND
  To assess the quality of life (QoL) and predictors thereof in Dutch adult hereditary and non-hereditary retinoblastoma (RB) survivors.
  
  
  METHODS
  In this population-based cross-sectional study, a generic QoL questionnaire (SF-36) and a disease-specific interview were administered to 87 adult RB survivors aged 18 to 35 years. Their QoL data were compared with those of a Dutch healthy reference group. Among the RB hereditary/non-hereditary survivors, the QoL was compared and predictors for QoL were identified by linear multiple regression analyses.
  
  
  RESULTS
  As a group, RB survivors scored significantly lower than the reference group on the SF-36 subscale 'mental health' (t = -27, df = 86, p < 0.01). Hereditary RB survivors scored lower on the subscale 'general health' (t = 2.6, df = 85, p < 0.01) than non-hereditary RB survivors. Having experienced bullying, as a child was a predictor for the SF-36 subscales: 'physical functioning' (p < 0.05), 'role functioning physical' (p < 0.01), 'role functioning emotional' (p < 0.05) and 'social functioning' (p < 0.01). Having experienced bullying (p < 0.01), but also subjective experience of impairment related to RB (p < 0.05), was predictors for 'general health'. Subjective experience of impairment was a predictor for 'vitality' (p < 0.01) and 'bodily pain' (p < 0.01).
  
  
  CONCLUSIONS
  In this exploratory study, it appears that the group of adult RB survivors experience a relatively good overall but slightly decreased QoL compared with the reference group. However, they report more problems with regard to their mental health (anxiety, feelings of depression, and loss of control). Hereditary RB survivors differ significantly from non-hereditary RB survivors only in 'general health'. Bullying in childhood and subjective experience of impairment are the main predictors of a worse QoL. In order to prevent worsening of QoL, or perhaps to improve it, clinicians should make an inventory of these issues at an early stage. We recommend further research to assess the specific psychological factors that may lead to mental health problems in this population.
authors.affiliation: Department of Medical Psychology, VU University Medical Center Amsterdam, The Netherlands. jennifer.vandijk@vumc.nl
authors.forename: Jennifer
authors.initials: J
authors.lastname: van Dijk
authors.forename: Saskia M
authors.initials: SM
authors.lastname: Imhof
authors.forename: Annette C
authors.initials: AC
authors.lastname: Moll
authors.forename: Peter J
authors.initials: PJ
authors.lastname: Ringens
authors.forename: Peggy T
authors.initials: PT
authors.lastname: Cohen-Kettenis
authors.forename: Frank
authors.initials: F
authors.lastname: Rijmen
authors.forename: Jaap
authors.initials: J
authors.lastname: Huisman
mesh_terms: D000293:Adolescent; D000328:Adult; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008603:Mental Health; D009426:Netherlands; D011379:Prognosis; D011788:Quality of Life / Q000523:psychology*; D012042:Registries; D019572:Retinal Neoplasms / Q000235:genetics / Q000503:physiopathology / Q000523:psychology*; D012175:Retinoblastoma / Q000235:genetics / Q000503:physiopathology / Q000523:psychology*; D012307:Risk Factors; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*