Green Ariel R, Boyd Cynthia M, Rosado Rosalphie Quiles, Daddato Andrea E, Gleason Kathy S, Taylor McPhail Tobie E, Blinka Marcela D, Schoenborn Nancy L, Wolff Jennifer L, Bayliss Elizabeth A, Boxer Rebecca S
Division of Geriatric Medicine and Gerontology, School of Medicine, Johns Hopkins University, Mason F Lord Building, Center Tower, 5200 Eastern Avenue, 7th Floor, Baltimore, MD, 21224, United States, 1 410 550 6733.
Institute for Health Research, Kaiser Permanente Colorado, Aurora, CO, United States.
JMIR Aging. 2024 Dec 13;7:e59584. doi: 10.2196/59584.
Family and unpaid caregivers play a crucial role in supporting people living with dementia; yet, they are not systematically identified and documented by health systems.
The aims of the study are to determine the extent to which caregivers are currently identified and documented in the electronic health record (EHR) and to elicit the perspectives of caregivers and clinical staff on how to best identify, engage, and support caregivers of people living with dementia through the EHR.
People with dementia were identified based on International Classification of Diseases, Tenth Revision (ICD-10) codes or dementia medications in the EHR. A chart review of people with dementia characterized how caregiver information was documented and whether caregivers had shared access to the patient portal. Caregivers of eligible people with dementia were then recruited through mailed letters and follow-up calls to the homes of people with dementia. We conducted semistructured interviews with caregivers, clinicians, and staff involved in the care of people with dementia within 2 health systems in Maryland and Colorado. Transcripts were analyzed using a mixed inductive and deductive approach.
Caregivers of people with dementia (N=22) were usually identified in the "contact information" or "patient contacts" tab (n=20, 91%) by their name and relation to the people with dementia; this tab did not specify the caregiver's role. Caregivers were also mentioned, and their roles were described to a varying degree in clinical notes (n=21, 96%). Of the 22 caregivers interviewed, the majority (n=17, 77%) reported that the people with dementia had additional caregivers. The presence of multiple caregivers could be gleaned from most charts (n=16, 73%); however, this information was not captured systematically, and caregivers' individual contributions were not explicitly recorded. Interviews with 22 caregivers and 16 clinical staff revealed two major themes: (1) caregiving arrangements are complex and not systematically captured or easy to locate in the EHR and (2) health systems should develop standardized processes to obtain and document caregiver information in the EHR.
This exploratory chart review and qualitative interview study found that people with dementia frequently have multiple caregivers, whose roles and needs are captured inconsistently in the EHR. To address this concern, caregivers and clinical staff suggested that health systems should develop and test workflows to identify caregivers, assess their needs at multiple touchpoints, and record their information in extractable EHR fields.
家庭和无薪照护者在支持痴呆症患者方面发挥着关键作用；然而，卫生系统并未对他们进行系统的识别和记录。
本研究的目的是确定目前在电子健康记录（EHR）中对照护者的识别和记录程度，并了解照护者和临床工作人员对于如何通过EHR最好地识别、参与并支持痴呆症患者照护者的看法。
根据国际疾病分类第十版（ICD-10）编码或EHR中的痴呆症药物来识别痴呆症患者。对痴呆症患者的病历进行审查，以了解照护者信息的记录方式以及照护者是否有权限访问患者门户。然后通过给痴呆症患者家庭邮寄信件和进行随访电话，招募符合条件的痴呆症患者的照护者。我们对马里兰州和科罗拉多州两个卫生系统中参与痴呆症患者护理的照护者、临床医生和工作人员进行了半结构化访谈。使用归纳和演绎相结合的方法对访谈记录进行分析。
痴呆症患者的照护者（N = 22）通常在“联系信息”或“患者联系人”标签中被识别（n = 20，91%），通过他们的姓名以及与痴呆症患者的关系来确定；该标签未明确照护者的角色。照护者在临床记录中也有提及，并且他们的角色在不同程度上有描述（n = 21，96%）。在接受访谈的2名照护者中，大多数（n = 17，77%）报告称痴呆症患者还有其他照护者。从大多数病历中可以看出存在多名照护者（n = 16，73%）；然而，这些信息没有被系统地记录，照护者的个人贡献也没有被明确记录。对22名照护者和16名临床工作人员的访谈揭示了两个主要主题：（1）照护安排复杂，在EHR中没有被系统记录或难以查找；（2）卫生系统应制定标准化流程，以在EHR中获取并记录照护者信息。
这项探索性病历审查和定性访谈研究发现，痴呆症患者通常有多名照护者，其角色和需求在EHR中的记录不一致。为解决这一问题，照护者和临床工作人员建议卫生系统应制定并测试工作流程，以识别照护者，在多个接触点评估他们的需求，并将他们的信息记录在可提取的EHR字段中。
