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Children and adults who survived retinoblastoma (8-35 years of age)

Children and adults who (might) carry a genetic risk to develop retinoblastoma (8-35 years of age)

Parents of Rb patients, Rb survivors, or Rb risk carriers (6 months-12 years of age)

Estimated intelligence (subtasks of Wechsler Intelligence Scale for Children - Fifth edition -Dutch version \[WISC-V-NL\] or Wechsler Adult Intelligence Scale - Forth edition - Dutch version \[WAIS-IV-NL\]); Vienna reaction time; Rey auditory verbal learning test; Word fluency; Beery-Buktenica Developmental Test of Visual-Motor Integration, 6th Edition; Test of Everyday Attention for Children (TEA-Ch), subtask Score!/ or Test of Everyday Attention (TEA), subtask Elevator task; Trail making test; Word-color interference test

Neuropsychological assesment

Anxiety (PROMIS); Depression (PROMIS); Peer-interaction (PROMIS); Perceived neurocognitive functioning (PROMIS); Participation and activity (PAY-CY); Trauma (KJTS/PCL-5); Health related quality of life (PEDSQL)

Psychosocial functioning and quality of life (questionnaires)

Anxiety (PROMIS); Depression (PROMIS); Distress Thermometer-Parents (DT-P); Trauma (PCL-5)

Parental psychosocial functioning (questionnaires)

Annette C. Moll, MD PhD

A retrospective crosssectional observational study of the effects of oncological treatment and frequent general anesthesia on neuropsychological development, psychosocial functioning (in terms of anxiety, depression, peer relations, perceived cognitive functioning and potential trauma) and health related quality of life in children and young adults who were treated or screened for retinoblastoma.

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, enucleation (removing the eye) is often inevitable. Brothers and sisters or offspring of heredity Rb survivors that are at risk to develop Rb themselves (so called 'Rb risk carriers') will be screened according to the Dutch Rb Screening Protocol. The medical treatment and follow-up of Rb patients and screening of Rb risk carriers takes place under general anesthesia (GA) up to four or five years of age. At this age the brain is still developing and therefore extra vulnerable to iatrogenic damage, including neuropsychological complications. Immediate effects of the oncological treatment, as well as secondary effects due to multiple GA on cognitive development in Rb survivors is still understudied. Rb survivors report disease-related limitations in daily life and lower health related quality of life (HRQoL), which might be related to impaired cognitive functioning. Apart from possible immediate or secondary treatment effects, children with Rb are known to be experiencing psychosocial struggles, including anxiety and depression, declined participation and/or pediatric trauma, which may negatively affect HRQoL as well. Despite the impact on general wellbeing and HRQoL, the cognitive and emotional aspects of Rb are largely under addressed in pediatric care. It is important to gain insight in the cognitive development and psychosocial functioning from childhood into young adulthood of Rb survivors, as well psychosocial functioning of the parents in order to provide timely interventions, minimizing possible long-term consequences. It is hypothesized that extensive treatment and multiple GA is negatively associated with cognitive functioning, psychosocial functioning and HRQoL in Rb survivors and Rb risk carriers. Moreover, that psychological struggles and/or trauma strengthen these associations.

Cognitive Functioning and Health Related Quality of Life in Retinoblastoma Survivors

Cognitive Functioning and Health Related Quality of Life in Retinoblastoma Survivors (8-35 Years): The Role of Cancer Treatment and Repeated Anesthesia

Datasets and statistical codes of the study will be made available upon request to the international science and rehabilitation community

General cognitive functioning, psychosocial functioning and health related Quality of life in Rb survivors and Rb risk carriers

Effects of biological and physiological factors on cognitive functioning, psychosocial functioning and health related quality of life in Rb survivors and Rb risk carriers

To assess psychosocial functioning and HRQoL in parents of Rb patients, Rb survivors and Rb risk carriers (0-12 years old).

Mapping neuropsychological profiles in Rb survivors and Rb risk carriers (8-35 years)

Mapping overall psychosocial functioning in Rb survivors, Rb risk carriers (8-35 years and parents)

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization	Link
Cognitive Functioning and Health Related Quality of Life in Retinoblastoma Survivors	NCT06227962	Retinoblastoma Neurocognitive ... Health-Related ...	Neuropsychologi... Psychosocial fu... Parental psycho...	6 Months - 35 Years	Amsterdam UMC, location VUmc
Cognitive Functioning and Health Related Quality of Life in Retinoblastoma Survivors	NCT06227962	Retinoblastoma Neurocognitive ... Health-Related ...	Neuropsychologi... Psychosocial fu... Parental psycho...	6 Months - 35 Years	Amsterdam UMC, location VUmc

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