Athena Institute, Faculty of Earth and Life Sciences, VU University Amsterdam, Boelelaan 1085, 1081HV Amsterdam, The Netherlands; Altrecht Institute for Mental Health Care, Nieuwe Houtenseweg 12, 3524 SH, Utrecht, The Netherlands.
Athena Institute, Faculty of Earth and Life Sciences, VU University Amsterdam, Boelelaan 1085, 1081HV Amsterdam, The Netherlands.
J Affect Disord. 2018 Oct 15;239:11-17. doi: 10.1016/j.jad.2018.05.061. Epub 2018 Jun 19.
Diagnosis and treatment of bipolar disorder is complex. Health care is supported by clinical guidelines, which are highly based on scientific evidence. However, such care does not necessarily correspond to preferred care according to patients. In order to narrow the gap between scientifically based guidelines and the patient's perceptions of the best clinical practice, additional research is needed. The aim of this study was to create a patient based research agenda for bipolar disorder to enhance the alignment between patients' needs and care system.
A mixed method study design was employed consisting of two phases: consultation and prioritization. In the consultation phase, six focus group discussions with patients (n = 35) were conducted to explore research needs according to patients, resulting in 23 research topics. Subsequently, these topics were prioritized by means of a questionnaire with patients (n = 219).
Patients with bipolar disorder mentioned a variety of research topics covered by the following five themes: causes of disorder; pharmacotherapy; non-pharmacological treatment; diagnosis; and recovery & recovery oriented care. 'Etiology' was the topic with highest priority.
The theme 'causes of disorder' is prioritized highest. We argue that this can be explained by the added value of an explanatory framework for appropriate treatment and recovery. The theme 'recovery & recovery oriented care' is currently underrepresented in actual research. It is argued that in order to bridge the knowledge and implementation gap, social science and health system research is needed in addition to biomedical research.
双相障碍的诊断和治疗较为复杂。医疗保健以临床指南为支撑，这些指南高度基于科学证据。然而，这种医疗保健不一定符合患者所期望的最佳医疗护理。为了缩小基于科学的指南与患者对最佳临床实践的看法之间的差距，需要开展更多的研究。本研究旨在制定基于患者的双相障碍研究议程，以增强患者需求与护理体系之间的一致性。
采用混合方法研究设计，包括两个阶段：咨询和优先级排序。在咨询阶段，对 35 名患者进行了六次焦点小组讨论，以根据患者的情况探讨研究需求，共提出了 23 个研究主题。随后，患者（n=219）通过问卷对这些主题进行了优先级排序。
双相障碍患者提出了涵盖以下五个主题的各种研究主题：发病原因；药物治疗；非药物治疗；诊断；以及康复和以康复为导向的护理。“病因”是优先级最高的主题。
“发病原因”主题被列为最高优先级。我们认为，这可以通过为适当的治疗和康复提供解释框架来解释。“康复和以康复为导向的护理”主题在当前的实际研究中代表性不足。有人认为，为了缩小知识和实施之间的差距，除了开展生物医学研究外，还需要开展社会科学和卫生系统研究。
