Набор по приглашению NCT03662776

Effect of Treatment Modality on Psychosocial Functioning of Survivors of Unilateral Retinoblastoma

— Наблюдательное Survivors of Unilateral Retinoblastoma

Ориентир для пациента и семьи

Простыми словами

Автоматическая сводка по структурированным данным реестра. Она помогает сориентироваться, но не заменяет официальный протокол или оценку врача.

Что изучают: В протоколе указаны: BASC-3 survey, PROMIS survey.
Кому может быть актуально: Состояния в реестре: Survivors of Unilateral Retinoblastoma. Базовые параметры: 8 лет — 17 лет · Все.
Что важно проверить: Возраст, диагноз и пол — только базовые ориентиры. Предыдущее лечение, анализы и другие обязательные условия указаны ниже в критериях участия.
Где проводится: США
Следующий шаг: Сохраните исследование, покажите его лечащему врачу и уточните актуальный статус у исследовательского центра. Расходы, документы и поездка →

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Обзор

The purpose of this study is to find out about the quality of life and health in patients who had retinoblastoma in one eye (unilateral retinoblastoma), who either received treatment with chemotherapy injected directly into an artery leading to the eye (intra-arterial chemotherapy) or removal of the eye (enucleation). By quality of life, the investigators mean how the participants are feeling about being satisfied with things in their life, including, physical health, emotional health, and their ability to carry out daily activities. The investigators want to see if either treatment option would affect quality of life differently. The investigators hope that this information will help us provide better care to future children with retinoblastoma and better follow-up care for survivors of retinoblastoma.

Вмешательства

Поведенческое BASC-3 survey
A comprehensive questionnaire, incorporating the BASC-3 and PROMIS measures, will be administered to parents of participants ages 8-17. The BASC-3 and PROMIS scales each have a parent and child version; these scales will be used to measure the secondary objective of parent and patient concordance rates for all participants ages 8 and older.
Поведенческое PROMIS survey
A comprehensive questionnaire, incorporating the BASC-3 and PROMIS measures, will be administered to parents of participants ages 8-17. The BASC-3 and PROMIS scales each have a parent and child version; these scales will be used to measure the secondary objective of parent and patient concordance rates for all participants ages 8 and older.

Первичные конечные точки

social-emotional health [Срок оценки: 2 years]
behavioral health [Срок оценки: 2 year]
compare HRQoL [Срок оценки: 2 years]

Критерии участия

Критерии включения

Ability to speak and understand English or Spanish
Diagnosis of unilateral retinoblastoma at any age, confirmed by the enrolling institution
Treatment of retinoblastoma between 2006 or later
Patients must between the age of 8-17 years old
At least 1 year since completion of all cancer-directed therapy
Treatment with enucleation of the affected eye or intra-arterial chemotherapy

Parent of patient:

Ability to speak and understand English or Spanish
Ability to confirm that he or she is the parent of a child treated for unilateral retinoblastoma who meets the eligibility criteria listed above
Ability to provide informed consent