Mastwyk Maree, Macfarlane Stephen, LoGiudice Dina, Sullivan Karen A
Mental Health Research Institute, Parkville, Victoria, Australia.
Int Psychogeriatr. 2003 Jun;15(2):149-56. doi: 10.1017/s1041610203008834.
We explored carer motivation for seeking participation for a relative in an Alzheimer's disease (AD) clinical drug trial, to assess impressions of the value of trial participation. We also surveyed the carers of patients who did not meet study entry screening criteria to see if our conduct of the screening visit was acceptable and ethical.
A retrospective questionnaire was sent to the carers of 36 randomized participants and 22 carers of patients who did not meet study entry screening criteria for an AD clinical treatment trial.
Twenty-nine (81%) of the trial participant carers and 15 (68%) of carers of the group who did not meet study entry criteria returned their questionnaires with sufficient information for analysis. The prime motivators in seeking trial participation were to help their relative feel better and live longer, to contribute to medical science, to improve the health of others, and the hope of a cure. Carers of both groups found research staff supportive and would recommend trial participation to others.
Even though trial participation is onerous and patients were generally perceived by carers as not having improved, both the screening visit and participation in the trial itself were seen as positive experiences and the expectations of carers were met.
我们探究了护理人员促使亲属参与阿尔茨海默病（AD）临床药物试验的动机，以评估对试验参与价值的看法。我们还对不符合研究入组筛查标准的患者的护理人员进行了调查，以了解我们的筛查访视行为是否可接受且符合伦理。
向36名随机分组参与者的护理人员以及22名不符合AD临床治疗试验研究入组筛查标准的患者的护理人员发送了一份回顾性调查问卷。
29名（81%）试验参与者的护理人员和15名（68%）不符合研究入组标准组的护理人员返回了问卷，且提供了足够的分析信息。寻求试验参与的主要动机是帮助亲属感觉更好、活得更长，为医学科学做出贡献，改善他人健康，以及治愈的希望。两组护理人员都认为研究人员给予了支持，并会向其他人推荐试验参与。
尽管试验参与很繁琐，且护理人员普遍认为患者没有改善，但筛查访视和试验参与本身都被视为积极的经历，护理人员的期望也得到了满足。
