儿童实体恶性肿瘤的研究活检的家长和参与者观点。

IF 2.3 3区 医学 Q2 HEMATOLOGY
Meaghann S Weaver, Liza-Marie Johnson, Jami S Gattuso, Mary Caples, Alberto Pappo, Samira Deshpande, Belinda Mandrell
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引用次数: 0

摘要

目的:联邦机构最近发布了关于研究活检的建议草案,其中特别考虑了儿童。很少知道父母或患者对研究活检实践的看法。本研究的目的是量化接受或不接受研究活检,探讨决策原因,并测量手术后决策一致性或后悔。患者和方法:年龄2-21岁,诊断为复发性或进展性实体瘤,可进行活检(基于安全审查小组)的参与者符合条件。本文报告了调查问卷前后的调查结果,以描述他们接受或不接受研究活检程序。结果:所有接近的候选人都同意参加(n = 8)。参与研究活检的原因包括利他主义、个人利益、并发手术的便利性和诊断目标。研究活检术前的平均痛苦评分为2.4(1 =不痛苦,5 =非常痛苦)。参与者认可高水平的决策一致性和低水平的后悔后活检使用经过验证的决策后悔工具。参与者报告活检是正确的决定(平均4.3/5分),他们会再次选择相同的(平均4.3/5分)。参与者报告了低后悔(平均1.7/5)和低感知与研究活检决定相关的危害(平均1.3/5)。结论:在某些情况下,父母可能会认为研究活检是可以接受的,并可能在手术后保持决定一致性。国家指导方针和伦理考虑可以帮助应对儿童研究活检的复杂性。由于存在治疗误解,最佳实践知情同意程序是必要的。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Parent and Participant Perspectives on Research Biopsies in Pediatric Solid Malignancies.

Purpose: Federal agencies recently released draft recommendations for research biopsies with special considerations for children. Little is known about parent or patient perspectives on research biopsy practices. The purpose of this study was to quantify acceptance or non-acceptance of a research biopsy, to explore the decisional reasons, and to measure post-procedure decisional congruence or regret.

Patients and methods: Participants aged 2-21 years diagnosed with a recurrent or progressive solid tumor amenable to biopsy (based on safety review team) were eligible. This paper reports findings from a pre- and post-questionnaire to describe their acceptance or non-acceptance of the research biopsy procedure.

Results: All approached candidates agreed to participate (n = 8). Reasons for participation in the research biopsy included altruism, personal benefit, convenience of a concurrent procedure, and diagnostic goals. The average distress score for the research biopsy pre-procedure was 2.4 (1 = not distressed, 5 = very distressed). Participants endorsed a high level of decisional congruence and a low level of regret post-biopsy using a validated Decisional Regret Instrument. Participants reported that the biopsy was the right decision (average 4.3/5-point scale) and they would choose the same again (average 4.3/5). Participants reported low regret (average 1.7/5) and low perception of harm associated with the research biopsy decision (average 1.3/5).

Conclusions: Parents may consider research biopsies acceptable under certain circumstances and may maintain decisional congruence post-procedure. National guidelines and ethical considerations can help navigate the complexities of research biopsies in children. Best practice-informed consent processes are necessary due to the existence of therapeutic misconceptions.

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来源期刊
Pediatric Blood & Cancer
Pediatric Blood & Cancer 医学-小儿科
CiteScore
4.90
自引率
9.40%
发文量
546
审稿时长
1.5 months
期刊介绍: Pediatric Blood & Cancer publishes the highest quality manuscripts describing basic and clinical investigations of blood disorders and malignant diseases of childhood including diagnosis, treatment, epidemiology, etiology, biology, and molecular and clinical genetics of these diseases as they affect children, adolescents, and young adults. Pediatric Blood & Cancer will also include studies on such treatment options as hematopoietic stem cell transplantation, immunology, and gene therapy.
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