Evaluation of a prototype electronic personal health record for patients with idiopathic thrombocytopenic purpura.
Evaluation of a prototype electronic personal health record for patients with idiopathic thrombocytopenic purpura.
复制标题
DOI：
10.2147/ppa.s36320
复制
发表时间：
2012
影响因子：
2.2
通讯作者：
Durand JM
中科院分区：
文献类型：
--
作者：
Chiche L;Brescianini A;Mancini J;Servy H;Durand JM
罕见病患者往往缺乏对疾病本身的了解和适当的医疗保健，导致生活质量差。个人健康记录提供的健康信息可以在多个医疗保健提供者之间共享。个人健康记录也可以提供一种工具，用于记录患者报告的结果，从而增强他们的权能并改善与卫生保健专业人员的沟通。我们进行了一项试点研究，以评估Sanoia的可用性，Sanoia是一种可免费访问的个人健康记录，是为患有罕见疾病特发性血小板减少性紫癜（ITP）的患者定制的。Sanoia界面使用ITP专用工具进行了扩展。在参考中心进行了一项前瞻性研究，以评价患者使用该新界面（此处称为“工具”）的可用性。43名患者被随机分为使用或不使用该工具的组。它的使用进行了评估，通过一个特定的问卷调查，并通过调查个别患者的依从性。使用ITP患者评估问卷，在基线和1、3和6个月后通过邮寄进行健康相关生活质量评价。这些组在特征方面相似，包括总体生活质量。在研究期间，该工具用于更新19/28例患者（68%）的个人记录，与该工具的连接中位数为2次（范围1-12），加上各种医疗保健专业人员的访问（n = 22）。此外，15/19例（78%）患者至少使用过一次“个人笔记”部分。在研究期间，我们观察到使用或不使用该工具的患者之间的生活质量没有显著变化。这项初步研究证明了新的定制Sanoia界面对ITP患者的良好可用性。进一步的研究将进一步提高其可用性，其界面可以适用于其他罕见的慢性疾病。
Patients with rare diseases often lack information about the disease itself and appropriate health care, leading to poor quality of life. Personal health records provide health information which can then be shared between multiple health care providers. Personal health records may also offer a tool for capturing patients’ reported outcomes, thus enhancing their empowerment and improving communication with health care professionals. We conducted a pilot study to evaluate the usability of Sanoia, a freely accessible personal health record, which was customized for patients with the rare disease, idiopathic thrombocytopenic purpura (ITP). The Sanoia interface was expanded with ITP-specific tools. A prospective study was conducted at the referent center to evaluate the usability of this new interface (referred to here as the “tool”) by patients. Forty-three patients were randomized into groups to use or to not use the tool. Its use was evaluated by a specific questionnaire and by surveying individual patient adherence profiles. Evaluation of health-related quality of life using the ITP patient assessment questionnaire, was performed at baseline and after 1, 3, and 6 months via postal mail. The groups were similar at inclusion in terms of characteristics, including global quality of life. During the study period, the tool was used to update the personal records of 19/28 patients (68%), with a median of two connections to the tool (range 1–12) plus access by various health care professionals (n = 22). In addition, 15/19 (78%) patients used the “personal notes” section at least once. We observed no significant changes in quality of life between patients with or without the tool during the study period. This pilot study demonstrates the good usability of the new customized Sanoia interface for patients with ITP. Additional studies will increase its usability further, and its interface could be adapted for use with other rare chronic diseases.