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青少年和青年脑肿瘤幸存者父母的生活质量

Quality of Life Among Parents of Adolescent and Young Adult Brain Tumor Survivors.

作者信息

Buchbinder David K, Fortier Michelle A, Osann Kathryn, Wilford Justin, Shen Violet, Torno Lilibeth, Sender Leonard S, Parsons Susan K, Wenzel Lari

机构信息

*CHOC Children's Hospital, Division of Hematology †Department of Anesthesiology and Perioperative Care, University of California, Irvine, Orange ‡Department of Medicine, Division of Hematology-Oncology §Program in Public Health, University of California, Irvine ∥CHOC Children's Hospital, Division of Oncology ¶CHOC Children's Hospital, Division of Oncology, Chao Family Comprehensive Cancer Center, University of California, Irvine, Orange **Department of Medicine and Public Health, Chao Family Comprehensive Cancer Center, University of California, Irvine, CA #Departments of Medicine and Pediatrics, Tufts Medical Center, Institute of Clinical Research and Health Policy Studies, Boston, MA.

出版信息

J Pediatr Hematol Oncol. 2017 Nov;39(8):579-584. doi: 10.1097/MPH.0000000000000947.

Abstract

We aimed to describe the quality of life (QOL) among parents of adolescent and young adult brain tumor survivors as well as parent, survivor, and diagnosis/treatment-related factors associated with adverse QOL. A cross-sectional study of 28 parents of adolescent and young adult brain tumor survivors (who were on average 10 y postdiagnosis) was used to assess QOL. Parent QOL was measured using the Patient-Reported Outcomes Measurement Information System Global Health measure. Factors associated with adverse parent QOL were explored using logistic regression including: parent, survivor, and diagnosis/treatment-related factors. Parent QOL was within the normal range; however, 40% scored below the clinical threshold of 0.5 SD below the mean for physical and mental health. Parent perceptions of greater family impact, survivor emotional/behavioral health problems, improved cognitive function, and recurrence were associated with adverse parent physical health. Parent anger/sorrow, uncertainty, survivor emotional/behavioral health problems, speech/language problems, and recurrence were associated with adverse parent mental health. Parental emotional resources and perceptions of improved survivor peer relationships were associated with greater parent physical and mental health. The impact of a brain tumor diagnosis and treatment on the QOL of parents may be significant. Interventions are needed to ensure that the needs of parents are met.

摘要

我们旨在描述青少年及年轻成人脑肿瘤幸存者的父母的生活质量(QOL),以及与不良生活质量相关的父母、幸存者和诊断/治疗相关因素。一项对28名青少年及年轻成人脑肿瘤幸存者的父母(平均在确诊后10年)进行的横断面研究用于评估生活质量。使用患者报告结局测量信息系统全球健康指标来测量父母的生活质量。使用逻辑回归探索与不良父母生活质量相关的因素,包括:父母、幸存者和诊断/治疗相关因素。父母的生活质量在正常范围内;然而,40%的人在身心健康方面得分低于平均值0.5个标准差的临床阈值。父母对家庭影响更大的认知、幸存者的情绪/行为健康问题、认知功能改善和复发与父母的不良身体健康相关。父母的愤怒/悲伤、不确定性、幸存者的情绪/行为健康问题、言语/语言问题和复发与父母的不良心理健康相关。父母的情感资源以及对幸存者同伴关系改善的认知与父母更好的身心健康相关。脑肿瘤诊断和治疗对父母生活质量的影响可能很大。需要采取干预措施以确保满足父母的需求。

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