Cognitive Functioning and Health Related Quality of Life in Retinoblastoma Survivors

Launched by AMSTERDAM UNIVERSITY MEDICAL CENTER · Jan 18, 2024

Keywords

ClinConnect Summary

Retinoblastoma (Rb) is the most common form of ocular cancer in children, with high survival rates in developed countries (\>90%). Rb can develop unilateral (one eye affected, sometimes hereditary), or bilateral (both eyes, always hereditary). Children are usually diagnosed at a young age (\<5 years) and are subjected to an intensive treatment and follow-up protocol immediately after. If Rb is diagnosed in early disease stages, eye-saving treatment could be provided, such as laser, cryo-, chemotherapy and/or radiotherapy -or a combination of these. When discovered in a later disease stage, ...

Gender

ALL

Eligibility criteria

• Inclusion Criteria Rb survivors and Rb risk carriers (age 8-35 years):
• • Rb diagnosis, (main) treatment and follow-up of Rb patients and -survivors, or Rb screening took place at the Dutch Retinoblastoma Expertise Center of the Amsterdam University Medical Center,
• • Rb survivor or former Rb risk carriers is between 8 and 35 years old,
• • Average understanding of the Dutch language.
• Inclusion Criteria parents of Rb patients, Rb survivors or Rb risk carriers (6 months - 12 years):
• • Being a caregiver of a Rb survivor or Rb risk carrier that have been diagnosed and receive(d) (main) treatment and follow-up or screening at the Dutch Retinoblastoma Expertise Center of the Amsterdam University Medical Center,
• • The related Rb survivor or Rb risk carrier is \< 12 years old,
• • Average understanding of the Dutch language.
• Exclusion Criteria:
• • Pre-existing documented developmental delay and/or severe cognitive impairments (IQ \<70),
• • Having an active, uncontrolled psychiatric illness,
• • Rb diagnostic trajectory, treatment and follow-up at another hospital or before the founding of the Dutch Retinoblastoma Expertise Center in 1991. With exception of Rb survivors (diagnosed \>1991) who apart from treatment at the Dutch Retinoblastoma Center also required specialized treatment (such as radiation) at another center: they are illegible for inclusion.