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为什么患者会拒绝参与一项涉及肺康复的研究项目?

Why do patients decline to take part in a research project involving pulmonary rehabilitation?

作者信息

Taylor Renay, Dawson Simonne, Roberts Nicola, Sridhar Mangalam, Partridge Martyn R

机构信息

NHLI Division, Faculty of Medicine, Imperial College London, Charing Cross Campus, London W6 8RP, UK.

出版信息

Respir Med. 2007 Sep;101(9):1942-6. doi: 10.1016/j.rmed.2007.04.012. Epub 2007 May 30.

DOI:10.1016/j.rmed.2007.04.012
PMID:17540553
Abstract

BACKGROUND

It is important that those taking part in research trials are as representative as possible of those with the disease being studied. In a study of those with chronic obstructive pulmonary disease involving pulmonary rehabilitation, 120 of 297 suitable patients responded that they did not wish to take part in the trial. We were keen to know why these patients declined to take part in the study.

METHODS

A total of 120 patients who had responded that they did not wish to take part in the main trial were approached to ask if they would be willing to undertake a semi-structured face-to-face interview in their own home or by telephone. Those who were willing (n=39) underwent tape-recorded interviews and data analysis was performed using the framework method.

RESULTS

This was a qualitative study which revealed that several themes influenced patients' willingness or otherwise to take part in a research project involving pulmonary rehabilitation. Travelling to the hospital and location of the rehabilitation, along with competing commitments, and a variable perception of the benefits to the patient were clearly major factors and some had previous negative experiences of either the hospital, healthcare or research. While there was an element of negativity or impaired understanding regarding the research itself, the other factors appeared to be of greater importance.

CONCLUSION

Recruitment to pulmonary rehabilitation courses or recruitment to research involving pulmonary rehabilitation may be more successful if the location of the rehabilitation can be made as near to the patient's home as possible, and if the patient is given as much information as possible about what is involved.

摘要

背景

参与研究试验的人员应尽可能代表所研究疾病的患者群体,这一点很重要。在一项针对慢性阻塞性肺疾病患者的肺康复研究中,297名合适的患者中有120名表示他们不想参加该试验。我们很想知道这些患者拒绝参加研究的原因。

方法

共有120名表示不想参加主要试验的患者被询问是否愿意在其家中或通过电话接受半结构化的面对面访谈。愿意接受访谈的患者(n = 39)接受了录音访谈,并使用框架法进行数据分析。

结果

这是一项定性研究,结果显示有几个主题影响了患者参与涉及肺康复的研究项目的意愿。前往医院的路程和康复地点、相互冲突的事务,以及患者对自身受益的不同认知,显然是主要因素,而且一些患者此前在医院、医疗保健或研究方面有过负面经历。虽然患者对研究本身存在一定程度负面看法或理解不足,但其他因素似乎更为重要。

结论

如果康复地点能尽可能靠近患者家,并且向患者提供尽可能多关于相关内容的信息,那么招募患者参加肺康复课程或涉及肺康复的研究可能会更成功

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