Cognitive and Psychosocial Functioning of Children Treated for Retinoblastoma

视网膜母细胞瘤治疗儿童的认知和心理社会功能

• 批准号: 9186509
• 负责人: Victoria W. Willard
• 金额: $ 8.98万
• 依托单位: ST. JUDE CHILDREN'S RESEARCH HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-12-01 至 2018-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9186509
• 关键词: 10 year old; 5 year old; Adjuvant Therapy; Affect; Age; Behavioral; Bilateral; Blindness; Child; Child Rearing; Childhood; Cognitive; Data; Development; Diagnosis; Disease; Early Diagnosis; Emotional; Employee Strikes; Enrollment; Environment; Evaluation; Eye; Family; Goals; Handedness; Home environment; Impairment; Intervention; Investigation; Knowledge; Longitudinal Studies; Malignant Childhood Neoplasm; Malignant Neoplasms; Measures; Medical; Minor; Modality; Moods; Morbidity - disease rate; Neurocognitive; Neurocognitive Deficit; Operative Surgical Procedures; Outcome; Parents; Participant; Patient Self-Report; Patients; Perception; Population; Protocols documentation; Psychosocial Assessment and Care; Psychosocial Influences; Public Health; Publishing; Quality of life; Questionnaires; Reporting; Research; Retinoblastoma; Risk; Risk Factors; Saint Jude Children' s Research Hospital; School-Age Population; Survival Rate; Survivors; Time; Treatment Protocols; Visual impairment; clinical care; cognitive function; design; early childhood; executive function; expectation; experience; follow up assessment; follow-up; functional decline; improved; improved outcome; irradiation; knowledge base; patient subsets; peer; prospective; psychologic; psychosocial; public health relevance; rehabilitation service; stressor; teacher; therapy development

 DESCRIPTION (provided by applicant): Retinoblastoma is an ocular cancer with an excellent survival rate. However, little is known about the quality of life of survivors, particularly with regards to cognitive functioning. We recently published an investigation of the cognitive and adaptive functioning of 94 patients who were assessed multiple times from diagnosis through age five. Analyses revealed that, contrary to expectations, there was a decline in functioning over time, with global functioning in the low average range at age 5. Declines were particularly apparent in children treated with surgery (enucleation) only. This was surprising as prior research, though limited, suggested functioning in the average to above average range. Thus, we now propose to complete a follow-up assessment with these children at age 10 to gain an appreciation of their long-term outcomes. Specific Aims: To evaluate the cognitive and psychosocial functioning of children with retinoblastoma at approximately 10 years of age and in relation to developmental functioning previously assessed. To assess the impact of parent and family factors (mood, perceptions of child vulnerability, family environment) on cognitive and psychosocial functioning in children with retinoblastoma. Hypotheses: Cognitive functioning will be below normative means, but stable in comparison to global functioning at age 5. Cognitive functioning of all survivors, regardless of treatment modality, will be commensurate. A significant subset of patients will demonstrate impairments in psychosocial functioning. Psychosocial functioning will be associated with neurocognitive functioning. Parent and family factors will be associated with cognitive and psychosocial functioning in children with retinoblastoma. Design: Patients enrolled on St. Jude Children's Research Hospital institutional protocol RET5 will be approached at age 10 (±1 year) to complete a battery of cognitive, academic, and psychosocial assessments. Measures include objective assessments of cognitive, academic, and executive functioning, as well as parent-, teacher- and self-report questionnaires of emotional, behavioral, and adaptive functioning. Additional measures will assess parent and family factors (mood, family environment, perceptions of child vulnerability) that may influence psychosocial functioning. Analyses will seek to both extend the longitudinal trajectory of cognitive and adaptive functioning post-diagnosis for retinoblastoma by using data collected as part of the earlier study, as well as to describe the current cognitive and psychosocial functioning of school-aged survivors of retinoblastoma.

 描述（由申请人提供）：视网膜母细胞瘤是一种生存率很高的眼癌，然而，人们对幸存者的生活质量知之甚少，特别是在认知功能方面。对 94 名患者从诊断到 5 岁进行了多次评估，分析显示，与预期相反，随着时间的推移，患者的功能有所下降，5 岁时整体功能处于较低的平均范围。在接受过治疗的儿童中，下降尤其明显。这令人惊讶，因为之前的研究虽然有限，但表明功能处于平均水平至高于平均水平的范围内。因此，我们现在建议对这些 10 岁时的儿童进行后续评估，以了解他们的情况。具体目标：评估 10 岁左右患有视网膜母细胞瘤的儿童的认知和心理社会功能，以及与先前评估的发育功能的影响（情绪、对儿童脆弱性的看法）。 ， 家庭假设：认知功能将低于正常水平，但与 5 岁时的整体功能相比稳定。无论治疗方式如何，所有幸存者的认知功能将是相当的。 部分患者将表现出社会功能障碍。 父母和家庭因素将与视网膜母细胞瘤儿童的认知和心理社会功能相关。 设计：参加圣裘德儿童研究医院机构方案 RET5 的患者。在 10 岁时（±1 岁）完成一系列认知、学业和社会心理评估，措施包括对认知、学业和执行功能以及家长、教师和社会心理的客观评估。情绪、行为和适应性功能的自我报告问卷将评估可能影响心理社会功能的父母和家庭因素（情绪、家庭环境、对儿童脆弱性的看法）。通过使用早期研究中收集的数据来评估视网膜母细胞瘤诊断后的适应性功能，并描述视网膜母细胞瘤学龄幸存者当前的认知和心理社会功能。

项目成果

Cognitive and Adaptive Functioning in Youth With Retinoblastoma: A Longitudinal Investigation Through 10 Years of Age.

视网膜母细胞瘤青少年的认知和适应性功能：10 岁的纵向调查。

• 发表时间: 2021
• 作者: Willard, Victoria W;Qaddoumi, Ibrahim;Pan, Haitao;Hsu, Chia;Brennan, Rachel C;Wilson, Matthew W;Rodriguez;Goode, Kristin;Parris, Kendra;Phipps, Sean
• 通讯作者: Phipps, Sean