{"id":6391,"date":"2023-12-03T12:12:00","date_gmt":"2023-12-03T11:12:00","guid":{"rendered":"https:\/\/ver-ooginoog.nl\/bibliotheek\/rbneuroqol-study-begins\/"},"modified":"2026-09-10T14:42:17","modified_gmt":"2026-09-10T12:42:17","slug":"rbneuroqol-study-begins","status":"publish","type":"library_pt","link":"https:\/\/ver-ooginoog.nl\/en\/library\/retinoblastoma\/rbneuroqol-study-begins\/","title":{"rendered":"RbNeuroQoL Study Begins"},"content":{"rendered":"<div class=\"wp-block-post-date\"><time datetime=\"2023-12-03T12:12:00+01:00\">03 December 2023<\/time><\/div>\n<p class=\"wp-block-paragraph\">At this time, doctors do not know whether cancer treatment and\/or anesthesia affect cognitive abilities (such as learning, memory, and planning), psychosocial functioning (how a person feels and approaches life), and long-term quality of life. In the coming years, this will be investigated at Amsterdam UMC as part of the RbNeuroQoL Study, led by Professor A.C. Moll, an ophthalmologist on the retinoblastoma team. In 2028, Mieke Ouwendijk-Andrea, a clinical psychologist and researcher on the retinoblastoma team, hopes to present the results of this research in a dissertation. We asked Mieke to tell us a little more about this important research.      <\/p>\n<h2 class=\"wp-block-heading\">What is the current treatment for retinoblastoma?<\/h2>\n<p class=\"wp-block-paragraph\">All children in the Netherlands who are diagnosed with this form of cancer are referred to the Retinoblastoma Expertise Center Netherlands, which is located at Amsterdam UMC. Once a child is registered, things move quickly: the team aims to begin treatment within two weeks. If the tumor is still small, it can be treated with laser therapy, freezing (cryotherapy), chemotherapy, and\/or radiation therapy. If the tumor turns out to be too large, or if it does not respond well to treatment, the entire eye is often removed. The diagnosis, all treatments, and follow-up checkups (until the fourth or fifth year of life, depending on the treatment) are performed under general anesthesia, as this is the only way to properly examine the retina.      <\/p>\n<h2 class=\"wp-block-heading\">Having to be put under anesthesia over and over again\u2014isn&#8217;t that incredibly stressful for the children?<\/h2>\n<p class=\"wp-block-paragraph\">That\u2019s right. In addition to the fact that all the trips to and from Amsterdam place a heavy demand on parents\u2019 organizational skills, the period of diagnosis, treatment, and checkups or screenings under anesthesia is extremely stressful for both parents and the child. It\u2019s not just the uncertainty of whether the treatment will be effective or whether retinoblastoma will develop (in the other eye), but also the repeated trips to the operating room and\/or adjusting to the new situation with an ocular prosthesis or severely limited vision.    <\/p>\n<h2 class=\"wp-block-heading\">In the study, you\u2019ll also be looking at people at risk for Rb. What does that mean? <\/h2>\n<p class=\"wp-block-paragraph\">Retinoblastoma is sometimes hereditary and sometimes not. In the hereditary form, there is a chance that siblings\u2014or, later, their children\u2014may also be at risk of developing retinoblastoma. These are the \u201cRb risk carriers.\u201d Whenever there is a risk, no matter how small, Rb risk carriers are screened. This screening, like the treatment, takes place until the age of four, with a large portion of it performed under general anesthesia.      <\/p>\n<h2 class=\"wp-block-heading\">What exactly are you going to investigate in the RbNeuroQoL Study?<\/h2>\n<p class=\"wp-block-paragraph\">The study consists of neuropsychological testing and\/or questionnaire-based assessments and focuses on three groups:  <\/p>\n<p class=\"wp-block-paragraph\"><strong>Group 1:<\/strong> Neurocognitive and psychosocial functioning and quality of life among retinoblastoma survivors and individuals at risk for retinoblastoma (Rb) aged 8 to 35 years.<\/p>\n<p class=\"wp-block-paragraph\"><strong>Group 2:<\/strong> Psychosocial functioning and quality of life among children with retinoblastoma, retinoblastoma survivors, and those at risk for retinoblastoma, ages 0 to 12.<\/p>\n<p class=\"wp-block-paragraph\"><strong>Group 3: The <\/strong>impact of diagnosis and treatment on the psychosocial functioning of parents of children with retinoblastoma, retinoblastoma survivors, and Rb carriers aged 0 to 12 years.  <\/p>\n<p class=\"wp-block-paragraph\">If people want to learn more about this study or participate in it, where should they go? <\/p>\n<p class=\"wp-block-paragraph\">If people have questions about this study or are considering participating, they can email us at <a href=\"rbneuroqolstudie@amsterdamumc.nl\">rbneuroqolstudie@amsterdamumc.nl<\/a>. People can also always contact their treating physician with any questions. <\/p>\n","protected":false},"excerpt":{"rendered":"<p>Retinoblastoma is the most common form of eye cancer in young children. In the Netherlands, approximately 12 children are diagnosed with this condition each year, most of whom are under five years old. Retinoblastoma occurs only in childhood, and the frequent treatments and checkups\/screenings under anesthesia take place at an age when the brain is still developing rapidly.    <\/p>\n","protected":false},"featured_media":6392,"template":"","meta":{"_acf_changed":false,"_daextauttol_enable_tooltips":""},"library_cat":[123],"class_list":["post-6391","library_pt","type-library_pt","status-publish","has-post-thumbnail","hentry","library_cat-retinoblastoma"],"acf":[],"_links":{"self":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_pt\/6391","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_pt"}],"about":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/types\/library_pt"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/media\/6392"}],"wp:attachment":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/media?parent=6391"}],"wp:term":[{"taxonomy":"library_cat","embeddable":true,"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_cat?post=6391"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}