Institut für Neuroimmunologie und Multiple Sklerose, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Germany; Unit of Health Sciences and Education, University of Hamburg, Hamburg, Germany.
Nursing Research Unit, University of Lübeck, Lübeck, Germany.
Int J Nurs Stud. 2018 Feb;78:26-36. doi: 10.1016/j.ijnurstu.2017.08.011. Epub 2017 Aug 26.
Treatment decision-making is complex for people with multiple sclerosis. Profound information on available options is virtually not possible in regular neurologist encounters. The "nurse decision coach model" was developed to redistribute health professionals' tasks in supporting immunotreatment decision-making following the principles of informed shared decision-making.
To test the feasibility of a decision coaching programme and recruitment strategies to inform the main trial.
Feasibility testing and parallel pilot randomised controlled trial, accompanied by a mixed methods process evaluation.
Two German multiple sclerosis university centres.
People with suspected or relapsing-remitting multiple sclerosis facing immunotreatment decisions on first line drugs were recruited. Randomisation to the intervention (n = 38) or control group (n = 35) was performed on a daily basis. Quantitative and qualitative process data were collected from people with multiple sclerosis, nurses and physicians.
We report on the development and piloting of the decision coaching programme. It comprises a training course for multiple sclerosis nurses and the coaching intervention. The intervention consists of up to three structured nurse-led decision coaching sessions, access to an evidence-based online information platform (DECIMS-Wiki) and a final physician consultation. After feasibility testing, a pilot randomised controlled trial was performed. People with multiple sclerosis were randomised to the intervention or control group. The latter had also access to the DECIMS-Wiki, but received otherwise care as usual. Nurses were not blinded to group assignment, while people with multiple sclerosis and physicians were. The primary outcome was 'informed choice' after six months including the sub-dimensions' risk knowledge (after 14 days), attitude concerning immunotreatment (after physician consultation), and treatment uptake (after six months). Quantitative process evaluation data were collected via questionnaires. Qualitative interviews were performed with all nurses and a convenience sample of nine people with multiple sclerosis.
116 people with multiple sclerosis fulfilled the inclusion criteria and 73 (63%) were included. Groups were comparable at baseline. Data of 51 people with multiple sclerosis (70%) were available for the primary endpoint. In the intervention group 15 of 31 (48%) people with multiple sclerosis achieved an informed choice after six months and 6 of 20 (30%) in the control group. Process evaluation data illustrated a positive response towards the coaching programme as well as good acceptance.
The pilot-phase showed promising results concerning acceptability and feasibility of the intervention, which was well perceived by people with multiple sclerosis, most nurses and physicians. Delegating parts of the immunotreatment decision-making process to trained nurses has the potential to increase informed choice and participation as well as effectiveness of patient-physician consultations.
多发性硬化症患者的治疗决策非常复杂。在常规神经科就诊中，几乎不可能提供有关可用选择的深入信息。“护士决策教练模型”是根据知情共享决策的原则开发的，旨在重新分配卫生专业人员在支持免疫治疗决策方面的任务。
测试决策辅导计划和招募策略的可行性，以为主要试验提供信息。
可行性测试和并行试点随机对照试验，同时进行混合方法过程评估。
德国两个多发性硬化症大学中心。
招募面临一线药物免疫治疗决策的疑似或复发缓解型多发性硬化症患者。每天对干预组（n=38）和对照组（n=35）进行随机分组。从多发性硬化症患者、护士和医生那里收集定量和定性的过程数据。
我们报告了决策辅导计划的开发和试点情况。它包括为多发性硬化症护士提供的培训课程和辅导干预。干预包括最多三次由护士主导的结构化决策辅导会议、访问基于证据的在线信息平台（DECIMS-Wiki）和最终的医生咨询。在可行性测试后，进行了一项试点随机对照试验。多发性硬化症患者被随机分配到干预组或对照组。后者也可以访问 DECIMS-Wiki，但接受常规护理。护士未对分组进行盲法，而多发性硬化症患者和医生则进行了盲法。主要结局是六个月后的“知情选择”，包括子维度的风险知识（14 天后）、对免疫治疗的态度（在医生咨询后）和治疗接受率（六个月后）。通过问卷收集定量过程评估数据。对所有护士和 9 名多发性硬化症患者的便利样本进行了定性访谈。
符合纳入标准的 116 名多发性硬化症患者中有 73 名（63%）被纳入。两组在基线时具有可比性。主要结局的 51 名患者（70%）的数据可用。在干预组中，31 名患者中有 15 名（48%）在六个月后做出了知情选择，而对照组中有 20 名患者中的 6 名（30%）。过程评估数据表明，人们对辅导计划的反应积极，接受度良好。
试点阶段显示出干预措施的可接受性和可行性的有希望结果，该干预措施被多发性硬化症患者、大多数护士和医生所接受。将免疫治疗决策过程的部分内容委托给经过培训的护士，有可能增加知情选择和参与度，以及提高医患咨询的效果。
