Kars Marijke C, van Thiel Ghislaine Jmw, van der Graaf Rieke, Moors Marleen, de Graeff Alexander, van Delden Johannes Jm
Department of Medical Humanities, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands
Department of Medical Humanities, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands.
Palliat Med. 2016 Jun;30(6):533-48. doi: 10.1177/0269216315616759. Epub 2015 Nov 17.
When healthcare professionals or other involved parties prevent eligible patients from entering a trial as a research subject, they are gatekeeping. This phenomenon is a persistent problem in palliative care research and thought to be responsible for the failure of many studies.
To identify potential gatekeepers and explore their reasons for gatekeeping in palliative care research.
A 'Review of Reasons' based on the systematic Preferred Reporting Items for Systematic Reviews and Meta-Analyses approach and a thematic synthesis.
PubMed, Embase, Cumulative Index to Nursing and Allied Health Literature and PsycINFO from 2000 to May 20 2015 were searched. Studies in children (aged <18 years) and patients with dementia were excluded.
Thirty papers on gatekeeping in palliative care research were included. Five groups of potential gatekeepers were identified: healthcare professionals, research ethics committees, management, relatives and researchers. The fear of burdening vulnerable patients was the most reported reason for gatekeeping. Other reasons included 'difficulty with disclosure of health status', 'fear of burdening the patient's relatives', 'doubts about the importance or quality of the study', 'reticent attitude towards research and (research) expertise' and 'logistics'. In hospice and homecare settings, the pursuit of comfort care may trigger a protective attitude. Gatekeeping is also rooted in a (perceived) lack of skills to recruit patients with advanced illness.
Gatekeeping is motivated by the general assumption of vulnerability of patients, coupled with an emphasis on the duty to protect patients. Research is easily perceived as a threat to patient well-being, and the benefits appear to be overlooked. The patients' perspective concerning study participation is needed to gain a full understanding and to address gatekeeping in palliative care research.
当医疗保健专业人员或其他相关方阻止符合条件的患者作为研究对象进入试验时，他们就是在进行把关。这种现象在姑息治疗研究中一直存在，被认为是许多研究失败的原因。
识别潜在的把关者，并探讨他们在姑息治疗研究中进行把关的原因。
基于系统评价和Meta分析的首选报告项目的“原因综述”以及主题综合分析。
检索了2000年至2015年5月20日的PubMed、Embase、护理及相关健康文献累积索引和PsycINFO。排除了针对儿童（年龄<18岁）和痴呆患者的研究。
纳入了30篇关于姑息治疗研究中把关的论文。识别出五组潜在的把关者：医疗保健专业人员、研究伦理委员会、管理人员、亲属和研究人员。最常被提及的把关原因是担心给脆弱的患者带来负担。其他原因包括“难以披露健康状况”、“担心给患者亲属带来负担”、“对研究的重要性或质量存疑”、“对研究和（研究）专业知识持沉默态度”以及“后勤问题”。在临终关怀和家庭护理环境中，对舒适护理的追求可能引发保护态度。把关还源于（人们认为）缺乏招募晚期疾病患者的技能。
把关的动机是普遍认为患者脆弱，同时强调保护患者的责任。研究很容易被视为对患者福祉的威胁，而其益处似乎被忽视了。需要了解患者对参与研究的看法，以全面理解并解决姑息治疗研究中的把关问题。
