Response to written feedback of clinical data within a longitudinal study: a qualitative study exploring the ethical implications
Response to written feedback of clinical data within a longitudinal study: a qualitative study exploring the ethical implications
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DOI：
10.1186/1471-2288-11-10
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发表时间：
2011-01-27
影响因子：
4
通讯作者：
Benzeval, Michaela
中科院分区：
文献类型：
--
作者：
Lorimer, Karen;Gray, Cindy M.;Benzeval, Michaela
背景：将研究结果反馈给参与者是一种日益增长的道德要求，但关于人们如何回应个性化反馈的实证研究仍然非常缺乏。我们试图探索纵向研究参与者对收到与体重相关的个人书面反馈和血液结果的反应，并考虑利弊的平衡。方法：采用面对面和电话访谈的定性研究方法，对参加第五次也是最近一次队列研究“2007年苏格兰西部”的50名男性和女性进行了访谈，并收到了一封反馈信，信中包含体重指数（BMI）、体脂率、胆固醇和糖化血红蛋白A(1c) （HbA(1c)）结果。结果：对他们个人结果的反馈的期望和反应各不相同。虽然一半的参与者总体上对他们的结果感到“满意”或持中立态度，但一半的参与者报告了负面反应，如“震惊”或“担心”，特别是与体重相关的结果。超重和肥胖的参与者对他们的结果使用了最消极的语言，其中一些人非常痛苦，并报告说他们感到无能为力，自我形象低下，对未来的健康感到焦虑。然而，一些人报告说，他们根据反馈直接改变了生活方式，结果显著减轻了体重和/或改善了饮食习惯。另一些人表示，他们有动力改变自己的行为。在这些行为改变的叙述中，年龄和性别差异很明显。结论：对某些参与者造成的潜在伤害可能与对其他人的益处相平衡。在非试验研究中，有必要对研究结果的形式、内容和个性化反馈手段的影响进行更多的评估，因为越来越多的道德要求让参与者选择接受他们的结果，而且有很高比例的人可能会选择接受这些结果。
Background: There is a growing ethical imperative to feedback research results to participants but there remains a striking lack of empirical research on how people respond to individualised feedback. We sought to explore longitudinal study participants' response to receiving individual written feedback of weight-related and blood results, and to consider the balance of harms against benefits.Methods: A qualitative study with face-to-face and telephone interviews conducted with 50 men and women who had participated in the fifth and most recent wave of the cohort study 'West of Scotland Twenty-07' and received a feedback letter containing body mass index (BMI), body fat percentage, cholesterol and glycated haemoglobin A(1c) (HbA(1c)) results.Results: Expectations of, and response to, the feedback of their individual results varied. Whilst half of the participants were on the whole 'pleased' with their results or held neutral views, half reported negative responses such as 'shock' or 'concern', particularly in relation to the weight-related results. Participants who were overweight and obese used the most negative language about their results, with some being quite distressed and reporting feelings of powerlessness, low self-image and anxiety over future health. Nevertheless, some people reported having implemented lifestyle changes in direct response to the feedback, resulting in significant weight-loss and/or dietary improvements. Others reported being motivated to change their behaviour. Age and gender differences were apparent in these narratives of behaviour change.Conclusions: The potential harm caused to some participants may be balanced against the benefit to others. More evaluation of the impact of the format, content and means of individualised feedback of research findings in non-trial studies is required given the growing ethical imperative to offer participants a choice of receiving their results, and the likelihood that a high percentage will choose to receive them.