Behavioural functioning of retinoblastoma survivors.
OBJECTIVE
To assess behavioural problems in retinoblastoma (RB) survivors.


METHODS
This population-based cross-sectional study included 148 RB survivors (8-35 years), registered in the Dutch national RB register. Survivors and parents were asked to fill in behavioural questionnaires. Prevalence rates were computed, based on both self-reports and proxy reports. One-sample T-tests were applied to analyse differences compared with healthy reference samples. Multiple regression analyses were performed to identify predictors for behavioural problems within the RB sample.


RESULTS
Between-group differences varied across informants and across age groups. Parents reported significantly elevated total problem behaviour in 30% of their offspring (aged 8-17 years); this against 9% in adolescents (12-17 years) and 12% in adults (18-35 years) based on self-report. Parental reports showed significantly elevated rates of (1) internalising problems in boys and (2) somatic complaints in both girls and boys. Self-reports indicate significantly lowered levels of (1) externalising problems in adolescent and adult women and (2) thought problems in female adolescents and in adult men. Especially survivors who suffered hereditary RB, who had undergone more intensive treatment, and who came from a single-parent family were identified to be at most behavioural risk.


CONCLUSIONS
Perception of severity and the nature of behavioural problems seem to differ between beholder, and to vary between age groups, if not between life stages. Health professionals should be aware that especially those who are confronted with hereditary RB and who subsequently undergo intensive treatment, and who grow up in broken families, run the risk of developing behavioural difficulties.
van Dijk
J
J
Department of Medical Psychology, VU University Medical Center, Amsterdam, The Netherlands. jennifer.vandijk@vumc.nl
Oostrom
K J
KJ
Imhof
S M
SM
Moll
A C
AC
Schouten-van Meeteren
A Y N
AY
Bezemer
P D
PD
Huisman
J
J
D000293:Adolescent; D000328:Adult; D017677:Age Distribution; D016022:Case-Control Studies; D002648:Child; D002653:Child Behavior Disorders / Q000453:epidemiology*; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D015999:Multivariate Analysis; D009426:Netherlands / Q000453:epidemiology; D015995:Prevalence; D012044:Regression Analysis; D019572:Retinal Neoplasms / Q000523:psychology / Q000534:rehabilitation*; D012175:Retinoblastoma / Q000523:psychology / Q000534:rehabilitation*; D012307:Risk Factors; D017678:Sex Distribution; D012920:Social Behavior Disorders / Q000453:epidemiology*; D017741:Survivors / Q000523:psychology*