Rancher Caitlin E, Shoemaker Jody M, Petree Linda E, Holdsworth Mark, Phillips John P, Helitzer Deborah L
The Mind Research Network, Albuquerque, NM, 87106, USA.
College of Pharmacy, The University of New Mexico Health Science Center, Albuquerque, NM, 87106, USA.
BMC Med Ethics. 2016 Oct 11;17(1):58. doi: 10.1186/s12910-016-0141-1.
Returning neuroimaging incidental findings (IF) may create a challenge to research participants' health literacy skills as they must interpret and make appropriate healthcare decisions based on complex radiology jargon. Disclosing IF can therefore present difficulties for participants, research institutions and the healthcare system. The purpose of this study was to identify the extent of the health literacy challenges encountered when returning neuroimaging IF. We report on findings from a retrospective survey and focus group sessions with major stakeholders involved in disclosing IF.
We surveyed participants who had received a radiology report from a research study and conducted focus groups with participants, parents of child participants, Institutional Review Board (IRB) members, investigators and physicians. Qualitative thematic analyses were conducted using standard group-coding procedures and descriptive summaries of health literacy scores and radiology report outcomes are examined.
Although participants reported high health literacy skills (m = 87.3 on a scale of 1-100), 67 % did not seek medical care when recommended to do so; and many participants in the focus groups disclosed they could not understand the findings described in their report. Despite their lack of understanding, participants desire to have information about their radiology results, and the investigators feel ethically inclined to return findings.
The language in clinically useful radiology reports can create a challenge for participants' health literacy skills and has the potential to negatively impact the healthcare system and investigators conducting imaging research. Radiology reports need accompanying resources that explain findings in lay language, which can help reduce the challenge caused by the need to communicate incidental findings.
返回神经影像学偶然发现（IF）可能对研究参与者的健康素养技能构成挑战，因为他们必须根据复杂的放射学术语进行解读并做出适当的医疗保健决策。因此，披露偶然发现可能给参与者、研究机构和医疗保健系统带来困难。本研究的目的是确定返回神经影像学偶然发现时所遇到的健康素养挑战的程度。我们报告了一项回顾性调查的结果以及与参与披露偶然发现的主要利益相关者进行的焦点小组讨论的结果。
我们对收到研究放射学报告的参与者进行了调查，并与参与者、儿童参与者的父母、机构审查委员会（IRB）成员、研究人员和医生进行了焦点小组讨论。使用标准的分组编码程序进行定性主题分析，并检查健康素养得分和放射学报告结果的描述性总结。
尽管参与者报告称具有较高的健康素养技能（在1-100分的量表上平均分为87.3），但67%的人在被建议就医时并未寻求医疗护理；并且焦点小组中的许多参与者表示他们无法理解报告中描述的发现。尽管缺乏理解，但参与者希望获得有关其放射学结果的信息，并且研究人员在伦理上倾向于返回发现结果。
临床有用的放射学报告中的语言可能对参与者的健康素养技能构成挑战，并有可能对医疗保健系统和进行影像学研究的研究人员产生负面影响。放射学报告需要附带以通俗易懂的语言解释发现结果的资源，这有助于减少因传达偶然发现的必要性而带来的挑战。
