The user experiences and clinical outcomes of an online personal health record to support self-management of bipolar disorder: A pretest-posttest pilot study.
The user experiences and clinical outcomes of an online personal health record to support self-management of bipolar disorder: A pretest-posttest pilot study.
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支持双相情感障碍自我管理的在线个人健康记录的用户体验和临床结果：一项前测后测试试点研究。
DOI：
10.1016/j.jad.2018.05.069
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发表时间：
2018
影响因子：
6.6
通讯作者：
R. Kupka
中科院分区：
文献类型：
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作者：
S. V. D. van den Heuvel;D. Meije;E. Regeer;H. Sinnema;R. Riemersma;R. Kupka
背景自我管理包括知识、行为、活动和资源，为双相情感障碍（BD）患者提供对波动的情绪和活动模式的控制。“双相情感障碍的自我管理和对话”项目需要定制一个在线个人健康记录（PHR），该记录最初是为慢性病患者设计的，用于监测病情并与BD患者的临床医生分享信息（PHR-BD）。本研究的目的是评估的可行性，实用程序和用户体验的参与者与BD，亲属，和医疗保健专业人士谁与PHR-BD.MethodsPost-test在线封闭式和开放式问卷调查收集信息的效用，和用户体验与PHR-BD。一个前后测试的设计，以评估临床效果的生活质量，授权，症状减轻，情绪和活动的变化，以及疾病负担和严重程度在基线和12个月follow-up.ResultsSixty-six参加BD登录在基线。在研究终点，39名BD参与者，11名专业人员和1名家庭护理人员填写了评估。临床结果与基线相比无显著差异。定性评价显示情绪图表模块的频繁使用，改善了临床医生与BD参与者之间的沟通，并增加了对情绪波动影响因素的洞察力。LimitationsSmall convenience sample，no controls.ConclusionsThe option to alternate the interface from a prospective to a retrospective mood chart，与个人危机计划的整合被认为是自我管理BD的附加值。本研究的结果将指导未来实施PHR-BD。
BackgroundSelf-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.MethodsPost-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.ResultsSixty-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.LimitationsSmall convenience sample, no controls.ConclusionsThe 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.
影响因子：
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作者：
Frank, E;Kupfer, DJ;Monk, T
通讯作者：
Monk, T