gezondheidsgerelateerde kwaliteit van leven Eye cancer retinoblastoma
Conditions
Interventions
None listed
Sponsors
Amsterdam UMC
Eligibility
Age
2 Years to 64 Years
Inclusion criteria
Inclusion criteria: Cognitive functioning, psychosocial functioning and HRQoL in Rb survivors and former Rb risk carriers (neuropsychological assessment and questionnaires): In order to be eligible for inclusion the potential participant must meet all inclusion criteria: 1. 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 Centers, 2. Rb survivor or former Rb risk carriers is between 8 and 35 years old, 3. Average understanding of the Dutch language. Psychosocial wellbeing of the caregiver and pediatric trauma (only questionnaires): In order to be eligible for inclusion the potential participant must meet all inclusion criteria: 1. 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 Centers, 2. The related Rb survivor or Rb risk carrier is
Exclusion criteria
Exclusion criteria: A potential participant who meets any of the following criteria will be excluded from participation in this study: 1. Pre-existing documented developmental delay and/or severe cognitive impairments (IQ 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.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1. To assess cognitive functioning (C1), psychosocial functioning (C2 ) and HRQoL (C3) in Rb survivors and Rb risk carriers 2. To investigate the effects of biological and physiological factors on cognitive functioning, psychosocial functioning and HRQoL in Rb survivors and Rb risk carriers. 3. To assess psychosocial functioning (C2) and HRQoL (C3) in parents (child 0-12 years old). 4. To study associations between outcomes (C0, C1, C2 and C3) in Rb survivors and Rb risk carriers, and their parents. | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. To map neuropsychological profiles in Rb survivors and Rb risk carriers (8-35 years)(within C1). 2. To map symptoms of psychosocial functioning in Rb survivors, Rb risk carriers (8-35 years and parents)(within C2). | — |
Countries
Netherlands
Outcome results
None listed