Prieto-Velasco Mario, Isnard Bagnis Corinne, Dean Jessica, Goovaerts Tony, Melander Stefan, Mooney Andrew, Nilsson Eva-Lena, Rutherford Peter, Trujillo Carmen, Zambon Roberto, Crepaldi Carlo
Unidad de Nefrología, Complejo Asistencial Universitario de León, León, Spain.
BMC Res Notes. 2014 Oct 17;7:730. doi: 10.1186/1756-0500-7-730.
There is growing evidence that renal replacement therapy option education (RRTOE) can result in enhanced quality of life, improved clinical outcomes, and reduced health care costs. However, there is still no detailed guidance on the optimal way to run such programmes. To help address this knowledge gap, an expert meeting was held in March 2013 to formulate a position statement on optimal ways to run RRTOE. Experts were selected from units that had extensive experience in RRTOE or were performing research in this field. Before the meeting, experts completed a pilot questionnaire on RRTOE in their own units. They also prepared feedback on how to modify this questionnaire for a large-scale study.
A pilot, web-based questionnaire was used to obtain information on: the renal unit and patients, the education team, RRTOE processes and content, how quality is assessed, and funding.
Four nurses, 5 nephrologists and 1 clinical psychologist (9 renal units; 6 EU countries) participated. Nurses were almost always responsible for organising RRTOE. Nephrologists spent 7.5% (median) of their time on RRTOE. Education for the patient and family began several months before dialysis or according to disease progression. Key topics such as the 'impact of the disease' were covered by every unit, but only a few units described all dialysis modalities. Visits to the unit were almost always arranged. Materials came in a wide variety of forms and from a wide range of sources. Group education sessions were used in 3/9 centres. Expectations on the timing of patients' decisions on modality and permanent access differed substantially between centres. Common quality assurance measures were: patient satisfaction, course attendance, updated materials. Only 1 unit had a dedicated budget.
There were substantial variations in how RRTOE is run between the units. A modified version of this questionnaire will be used to assess RRTOE at a European level.
越来越多的证据表明，肾脏替代治疗方案教育（RRTOE）可提高生活质量、改善临床结局并降低医疗成本。然而，对于开展此类项目的最佳方式仍没有详细的指导。为了填补这一知识空白，2013年3月召开了一次专家会议，以制定关于开展RRTOE最佳方式的立场声明。专家们选自那些在RRTOE方面有丰富经验或正在该领域开展研究的单位。会议前，专家们在各自单位完成了一份关于RRTOE的试点调查问卷。他们还就如何修改该问卷以用于大规模研究准备了反馈意见。
采用一份基于网络的试点调查问卷来获取以下方面的信息：肾脏科室及患者、教育团队、RRTOE流程及内容、质量评估方式以及资金情况。
4名护士、5名肾病学家和1名临床心理学家（来自9个肾脏科室；6个欧盟国家）参与了调查。护士几乎总是负责组织RRTOE。肾病学家将其7.5%（中位数）的时间用于RRTOE。针对患者及其家属的教育在透析前几个月开始或根据疾病进展情况进行。每个单位都涵盖了诸如“疾病影响”等关键主题，但只有少数单位介绍了所有透析方式。几乎总是会安排参观科室。资料形式多样，来源广泛。3/9的中心采用了小组教育课程。各中心对患者选择透析方式和建立长期血管通路的决策时间的期望差异很大。常见的质量保证措施有：患者满意度、课程出勤率、更新资料。只有1个单位有专门预算。
各单位在RRTOE的开展方式上存在很大差异。该调查问卷的修改版将用于在欧洲层面评估RRTOE。
