目的的双重性：实体瘤患儿及青少年患者及其家长对基因组肿瘤分析研究目的的理解
Duality of purpose: Participant and parent understanding of the purpose of genomic tumor profiling research among children and young adults with solid tumors.
作者信息
Marron Jonathan M, Cronin Angel M, DuBois Steven G, Glade-Bender Julia, Kim AeRang, Crompton Brian D, Meyer Stephanie C, Janeway Katherine A, Mack Jennifer W
机构信息
Department of Pediatric Oncology, Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, Massachusetts.
Harvard Medical School, Boston, Massachusetts.
出版信息
JCO Precis Oncol. 2019;3. doi: 10.1200/po.18.00176. Epub 2019 Jan 22.
PURPOSE
Increasing use of genomic tumor profiling may blur the line between research and clinical care. We aimed to describe research participants' perspectives on the purpose of genomic tumor profiling research in pediatric oncology.
METHODS
We surveyed 45 participants (response rate 85%) in a pilot study of genomic profiling in pediatric solid tumors at four academic cancer centers following return of sequencing results. We defined understanding according to a one-item ("basic") definition (recognizing that the primary purpose was not to improve the patient's treatment) and a four-item ("comprehensive") definition (primary purpose was not to improve patient's treatment; primary purpose was to improve treatment of future patients; there may not be direct medical benefit; most likely result of participation was not increased likelihood of cure).
RESULTS
Sixty-eight percent of respondents (30/44) demonstrated basic understanding of the study purpose; 55% (24/44) demonstrated comprehensive understanding. Understanding was more frequently seen in those with higher education and greater genetic knowledge according to basic (81% vs 50%, p=0.05; and 82% vs 46%, p=0.03, respectively) and comprehensive definitions (73% vs 28%, p=0.01; 71% vs 23%, p=0.01). Ninety-three percent of respondents who believed the primary purpose was to improve the patient's care simultaneously stated that the research also aimed to benefit future patients.
CONCLUSIONS
Most participants in pediatric tumor profiling research understand that the primary goal of this research is to improve care for future patients, but many express dual goals when participating in sequencing research. Some populations demonstrate increased rates of misunderstanding. Nuanced participant views suggest further work is needed to assess and improve participant understanding, particularly as tumor sequencing moves beyond research into clinical practice.
目的
基因组肿瘤分析的使用日益增加，可能会模糊研究与临床护理之间的界限。我们旨在描述研究参与者对儿科肿瘤学中基因组肿瘤分析研究目的的看法。
方法
在四个学术癌症中心对儿科实体瘤进行基因组分析的一项试点研究中，我们在测序结果返回后对45名参与者进行了调查（回复率85%）。我们根据一项（“基本”）定义（认识到主要目的不是改善患者的治疗）和四项（“全面”）定义（主要目的不是改善患者的治疗；主要目的是改善未来患者的治疗；可能没有直接的医疗益处；参与的最可能结果不是提高治愈的可能性）来定义理解。
结果
68%的受访者（30/44）对研究目的有基本理解；55%（24/44）有全面理解。根据基本定义（分别为81%对50%，p = 0.05；82%对46%，p = 0.03）和全面定义（73%对28%，p = 0.01；71%对23%，p = 0.01），受教育程度较高和基因知识较丰富的人更常表现出理解。93%认为主要目的是改善患者护理的受访者同时表示，该研究也旨在使未来患者受益。
结论
儿科肿瘤分析研究中的大多数参与者明白这项研究的主要目标是改善对未来患者的护理，但许多人在参与测序研究时表达了双重目标。一些人群表现出更高的误解率。参与者的细微观点表明，需要进一步开展工作来评估和提高参与者的理解，特别是随着肿瘤测序从研究转向临床实践。
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