背景:变异克雅氏病(vCJD)源于牛海绵状脑病(BSE)的饮食污染。由于担心老年人可能会错过vCJD病例,一项针对老年人的CJD强化监测的可行性研究已于2016年开始.招聘低于预期。我们描述了对该研究中遇到的挑战的回顾:识别,转介,招聘,以及基于该审查结果的行动的影响。
方法:回顾于2017年进行。从一个参与服务机构(AnneRowling诊所(ARC))确定和转介的所有合格病例的研究数据均在定制数据库中进行了整理和匿名化。向所有老年医学临床医生发放了一份问卷,NHS洛锡安的老年精神病学和神经病学(包括ARC)专业,探索低招聘的可能原因。
结果:从ARC转诊68例(2016年3月至2017年9月):招募了25%。由于诊断不确定性,大多数病例被转诊。被招募者和未被招募者之间没有差异,除了年龄和推荐人。60名参与的临床医生中有12名完成了问卷:只有4名确定了合格的病例。高工作量,时间限制,忘记引用,不熟悉资格标准,以及符合条件的案件的罕见情况,是给出的一些原因。关于如何改善符合条件的案件的转介的建议包括:定期电子邮件提醒,反馈给推荐人,提高学习意识,研究小组的可见存在,并将研究与其他面向研究的服务相结合。这些结果被用来增加招聘,但没有成功。
结论:招募低于预期。在21个月的审查后采取的行动没有显着改善;招聘仍然很低,许多家庭/患者拒绝参加(75%)。在评估未能改善招聘时,需要考虑两个因素。首先,最初的转诊率预计会更高,因为现有的患者已经为临床服务机构所知,后来的转诊只是新出现的患者。其次,计划外没有专门的研究护士。可以探索搜索数字记录/匿名衍生物以识别合格的患者。
Variant Creutzfeldt - Jakob disease (vCJD) arose from dietary contamination with bovine-spongiform-encephalopathy (BSE). Because of concerns that vCJD-cases might be missed in the elderly, a feasibility study of enhanced CJD surveillance on the elderly was begun in 2016. Recruitment was lower than predicted. We describe a
review of the challenges encountered in that study: identification, referral, and recruitment, and the effects of actions based on the results of that
review.
Review was conducted in 2017. Study data for all eligible cases identified and referred from one participating service (Anne Rowling clinic (ARC)) was curated and anonymised in a bespoke database. A questionnaire was sent out to all the clinicians in medicine of the elderly, psychiatry of old age and neurology (including ARC) specialties in NHS Lothian, exploring possible reasons for low recruitment.
Sixty-eight cases were referred from the ARC (March 2016-September 2017): 25% were recruited. Most cases had been referred because of diagnostic uncertainty. No difference was seen between those recruited and the non-recruited, apart from age and referrer. Twelve of 60 participating clinicians completed the questionnaire: only 4 had identified eligible cases. High workload, time constraints, forgetting to refer, unfamiliarity with the eligibility criteria, and the rarity of eligible cases, were some of the reasons given. Suggestions as to how to improve referral of eligible cases included: regular email reminders, feedback to referrers, improving awareness of the study, visible presence of the study team, and integration of the study with other research oriented services. These results were used to increase recruitment but without success.
Recruitment was lower than predicted. Actions taken following a
review at 21 months did not lead to significant improvement; recruitment remained low, with many families/patients declining to take part (75%). In assessing the failure to improve recruitment, two factors need to be considered. Firstly, the initial referral rate was expected to be higher because of existing patients already known to the clinical services, with later referrals being only newly presenting patients. Secondly, the unplanned absence of a dedicated study nurse. Searching digital records/anonymised derivatives to identify eligible patients could be explored.