荷兰妇科患者参与制定恢复（工作）活动的临床指南。
The involvement of gynaecological patients in the development of a clinical guideline for resumption of (work) activities in the Netherlands.
作者信息
Pittens Carina A C M, Vonk Noordegraaf Antonie, van Veen Saskia C, Anema Johannes R, Huirne Judith A F, Broerse Jacqueline E W
机构信息
Faculty of Earth and Life Science, Athena Institute for Research on Innovation and Communication in Health and Life Sciences, VU University, Amsterdam, The Netherlands.
Department of Obstetrics and Gynaecology, VU University Medical Center, Amsterdam, The Netherlands.
出版信息
Health Expect. 2015 Oct;18(5):1397-412. doi: 10.1111/hex.12121. Epub 2013 Aug 29.
CONTEXT
Most initiatives for patient involvement in guideline development have been carried out for chronic diseases. The involvement of patients with incidental and non-threatening diseases is more complicated. Little knowledge is available on how these patient groups can successfully be involved in guideline development.
OBJECTIVE
To assess the effectiveness of the involvement of gynaecological patients in the guideline development for resumption of (work) activities after surgery.
DESIGN
At three different stages patients were involved in the process: (i) three focus group discussions (FGDs) were organized, (ii) patients were involved for the instruction video, and (iii) patients tested the patient version of the clinical guideline. To assess the effectiveness, an evaluation framework was used. The guideline development process was divided into two parallel trajectories in which patients and professionals were consulted separately. Patients were primarily consulted for the development of the patient version, although their input also influenced the recommendations for resumption of (work) activities after surgery. Professionals were mainly involved in the development of the recommendations of the clinical guideline.
DISCUSSION AND CONCLUSIONS
The involvement of gynaecological patients in the guideline development for resumption of (work) activities after surgery was successful in many respects. Consultation of individual patients by means of FGDs and with regular feedback moments has been rather effective for a guideline development process related to an incidental, non-threatening disease for which there is no patient organization. Patients' input contributed to applicability of the clinical guideline in daily practice. Increased patient involvement could be achieved by integration of the two parallel trajectories with additional participatory activities, such as a dialogue meeting.
背景
大多数让患者参与指南制定的举措都是针对慢性病开展的。让患有偶发性和非威胁性疾病的患者参与则更为复杂。对于这些患者群体如何能够成功参与指南制定，了解甚少。
目的
评估妇科患者参与术后恢复（工作）活动指南制定的有效性。
设计
在三个不同阶段让患者参与该过程：（i）组织了三次焦点小组讨论（FGD），（ii）让患者参与指导视频的制作，以及（iii）患者对临床指南的患者版进行测试。为评估有效性，使用了一个评估框架。指南制定过程分为两条平行轨迹，分别征求患者和专业人员的意见。主要就患者版的制定征求患者意见，不过他们的意见也影响了术后恢复（工作）活动的建议。专业人员主要参与临床指南建议的制定。
讨论与结论
妇科患者参与术后恢复（工作）活动指南制定在很多方面都取得了成功。对于一种没有患者组织的偶发性、非威胁性疾病的指南制定过程，通过焦点小组讨论以及定期反馈环节对个体患者进行咨询颇为有效。患者的意见有助于临床指南在日常实践中的适用性。通过将两条平行轨迹与额外的参与活动（如对话会议）整合，可以提高患者的参与度。
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