Department of Pediatric Hematology, Emma Children's Hospital, Amsterdam Reproduction & Development, Public Health, Amsterdam UMC location University of Amsterdam, Amsterdam, Netherlands.
Galter Health Sciences Library at Northwestern University, Chicago, IL, United States.
J Med Internet Res. 2022 Dec 22;24(12):e43086. doi: 10.2196/43086.
eHealth tools such as patient portals and personal health records, also known as patient-centered digital health records, can engage and empower individuals with chronic health conditions. Patients who are highly engaged in their care have improved disease knowledge, self-management skills, and clinical outcomes.
We aimed to systematically review the effects of patient-centered digital health records on clinical and patient-reported outcomes, health care utilization, and satisfaction among patients with chronic conditions and to assess the feasibility and acceptability of their use.
We searched MEDLINE, Cochrane, CINAHL, Embase, and PsycINFO databases between January 2000 and December 2021. PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were followed. Eligible studies were those evaluating digital health records intended for nonhospitalized adult or pediatric patients with a chronic condition. Patients with a high disease burden were a subgroup of interest. Primary outcomes included clinical and patient-reported health outcomes and health care utilization. Secondary outcomes included satisfaction, feasibility, and acceptability. Joanna Briggs Institute critical appraisal tools were used for quality assessment. Two reviewers screened titles, abstracts, and full texts. Associations between health record use and outcomes were categorized as beneficial, neutral or clinically nonrelevant, or undesired.
Of the 7716 unique publications examined, 81 (1%) met the eligibility criteria, with a total of 1,639,556 participants across all studies. The most commonly studied diseases included diabetes mellitus (37/81, 46%), cardiopulmonary conditions (21/81, 26%), and hematology-oncology conditions (14/81, 17%). One-third (24/81, 30%) of the studies were randomized controlled trials. Of the 81 studies that met the eligibility criteria, 16 (20%) were of high methodological quality. Reported outcomes varied across studies. The benefits of patient-centered digital health records were most frequently reported in the category health care utilization on the "use of recommended care services" (10/13, 77%), on the patient-reported outcomes "disease knowledge" (7/10, 70%), "patient engagement" (13/28, 56%), "treatment adherence" (10/18, 56%), and "self-management and self-efficacy" (10/19, 53%), and on the clinical outcome "laboratory parameters," including HbA and low-density lipoprotein (LDL; 16/33, 48%). Beneficial effects on "health-related quality of life" were seen in only 27% (4/15) of studies. Patient satisfaction (28/30, 93%), feasibility (15/19, 97%), and acceptability (23/26, 88%) were positively evaluated. More beneficial effects were reported for digital health records that predominantly focus on active features. Beneficial effects were less frequently observed among patients with a high disease burden and among high-quality studies. No unfavorable effects were observed.
The use of patient-centered digital health records in nonhospitalized individuals with chronic health conditions is potentially associated with considerable beneficial effects on health care utilization, treatment adherence, and self-management or self-efficacy. However, for firm conclusions, more studies of high methodological quality are required.
PROSPERO (International Prospective Register of Systematic Reviews) CRD42020213285; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=213285.
电子健康工具，如患者门户和个人健康记录，也称为以患者为中心的数字健康记录，可以让患有慢性疾病的个人参与并赋予其力量。高度参与自身护理的患者可以提高疾病知识、自我管理技能和临床结果。
我们旨在系统地回顾以患者为中心的数字健康记录对慢性病患者的临床和患者报告结果、医疗保健利用和满意度的影响，并评估其使用的可行性和可接受性。
我们在 2000 年 1 月至 2021 年 12 月期间在 MEDLINE、Cochrane、CINAHL、Embase 和 PsycINFO 数据库中进行了搜索。遵循 PRISMA（系统评价和荟萃分析的首选报告项目）指南。符合条件的研究是评估用于患有慢性疾病的非住院成年或儿科患者的数字健康记录的研究。疾病负担高的患者是一个感兴趣的亚组。主要结果包括临床和患者报告的健康结果以及医疗保健的利用。次要结果包括满意度、可行性和可接受性。Joanna Briggs 研究所的批判性评估工具用于质量评估。两名审查员筛选了标题、摘要和全文。健康记录使用与结果之间的关联被归类为有益、中性或临床无关或不理想。
在检查的 7716 篇独特出版物中，有 81 篇（1%）符合入选标准，所有研究的参与者总数为 1639556 人。最常研究的疾病包括糖尿病（37/81，46%）、心肺疾病（21/81，26%）和血液肿瘤学疾病（14/81，17%）。三分之一（24/81，30%）的研究是随机对照试验。在符合入选标准的 81 项研究中，有 16 项（20%）具有较高的方法学质量。报告的结果因研究而异。在“推荐护理服务的使用”（13/13，77%）、“疾病知识”（7/10，70%）、“患者参与”（13/28，56%）、“治疗依从性”（10/18，56%）和“自我管理和自我效能”（10/19，53%）等类别中，最常报告以患者为中心的数字健康记录的益处，以及“实验室参数”（HbA 和低密度脂蛋白；16/33，48%）等临床结果。仅在 27%（4/15）的研究中观察到对“健康相关生活质量”的有益影响。患者满意度（28/30，93%）、可行性（15/19，97%）和可接受性（23/26，88%）均得到积极评价。数字健康记录主要关注主动功能时，更有可能产生有益的效果。在疾病负担高的患者和高质量研究中，观察到的有益效果较少。未观察到不利影响。
在患有慢性健康状况的非住院个体中使用以患者为中心的数字健康记录可能与医疗保健利用、治疗依从性以及自我管理或自我效能的显著有益效果相关。然而，为了得出更确定的结论，还需要更多高质量的研究。
PROSPERO（国际系统评价注册库）CRD42020213285；https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=213285.
