Saxion University of Applied Sciences, Expertise Center for Health, Social Care and Technology, Deventer, The Netherlands; Radboud University Medical Center, Radboud Institute for Health Sciences, IQ Healthcare, Nijmegen, The Netherlands; Dimence Group, Center for Mental Health Care, Deventer, The Netherlands; Catholic University of Leuven, Centre for Health Services and Nursing Research, Leuven, Belgium.
Trimbos Institute, Netherlands Institute for Mental Health and Addiction, Utrecht, The Netherlands.
J Affect Disord. 2018 Oct 1;238:261-268. doi: 10.1016/j.jad.2018.05.069. Epub 2018 Jun 3.
Self-management comprises knowledge, behavior, activities and resources providing people with bipolar disorder (BD) control over fluctuating mood and activity-patterns. The 'Self-management and Dialogue in Bipolar Disorder' project entailed the tailoring of an online personal health record (PHR) originally designed for the chronically ill to monitor condition and share information with their clinician to people with BD (PHR-BD). The aim of this study was to evaluate the feasibility, utility and user-experiences of participants with BD, relatives, and healthcare professionals who worked with the PHR-BD.
Post-test online closed- and open ended questionnaires were used to collect information on utility, and user-experiences with PHR-BD. A pre-posttest design to evaluate clinical effects on quality of life, empowerment, symptom reduction, changes in mood and activity, and illness burden and severity at baseline and at 12-months follow-up.
Sixty-six participants with BD logged in at baseline. At study endpoint thirty-nine participants with BD, eleven professionals and one family caregiver filled out the evaluations. No significant differences in the clinical outcomes from baseline were found. Qualitative evaluations showed a frequent utility of the mood chart modules, improved communication between clinician and participant with BD and, increased insight in influencing factors of mood fluctuations.
Small convenience sample, no controls.
The option to alternate the interface from a prospective to a retrospective mood chart , and integration with the personal crisis plan was considered to be of added value in self-managing BD. The findings of this study will guide the future implementation of the PHR-BD.
自我管理包括知识、行为、活动和资源，使双相情感障碍（BD）患者能够控制情绪波动和活动模式。“双相情感障碍的自我管理和对话”项目涉及对最初为慢性病患者设计的在线个人健康记录（PHR）进行定制，以便监测病情并与临床医生共享信息给 BD 患者（PHR-BD）。本研究的目的是评估 BD 患者、他们的亲属以及与 PHR-BD 一起工作的医疗保健专业人员对其的可行性、实用性和用户体验。
使用在线封闭式和开放式问卷调查，收集关于 PHR-BD 的实用性和用户体验的信息。采用前后测试设计，以评估生活质量、赋权、症状减轻、情绪和活动变化以及疾病负担和严重程度在基线和 12 个月随访时的临床效果。
66 名 BD 患者在基线时登录。在研究结束时，39 名 BD 患者、11 名专业人员和 1 名家庭护理人员填写了评估。从基线开始，临床结果没有显著差异。定性评估显示，情绪图表模块的使用频率较高，改善了临床医生与 BD 患者之间的沟通，增加了对情绪波动影响因素的了解。
小样本便利，无对照。
将界面从前瞻性切换到回顾性情绪图表，以及与个人危机计划的集成被认为是 BD 自我管理的附加价值。本研究的结果将指导 PHR-BD 的未来实施。
