造血细胞移植患者家庭照顾者对电子健康记录门户的使用：美国全国调查研究

Electronic Health Record Portal Use by Family Caregivers of Patients Undergoing Hematopoietic Cell Transplantation: United States National Survey Study.

作者信息

Gupta Vibhuti, Raj Minakshi, Hoodin Flora, Yahng Lilian, Braun Thomas, Choi Sung Won

机构信息

Department of Pediatrics, University of Michigan, Ann Arbor, MI, United States.

Department of Kinesiology and Community Health, University of Illinois at Urbana Champaign, Champaign, IL, United States.

出版信息

JMIR Cancer. 2021 Mar 9;7(1):e26509. doi: 10.2196/26509.

DOI:10.2196/26509

PMID:33687332

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8086639/

Abstract

BACKGROUND

As family caregivers of patients undergoing hematopoietic cell transplantation have multifaceted caregiving responsibilities (such as medical, household, financial) of long duration, they also have multiple physical, social, psychological, and informational needs.

OBJECTIVE

This study explored the prevalence of electronic health record patient portal use by family caregivers for managing both their own and their hematopoietic cell transplantation care recipient's health, as well as potential factors associated with portal use.

METHODS

An electronic caregiver health survey, first developed via cognitive interviewing methods of hematopoietic cell transplantation caregivers, was distributed nationally (in the United States) by patient advocacy organizations to family caregivers of hematopoietic cell transplantation patients. It was used to assess self-reported caregiver demographics, caregiving characteristics, depression and anxiety with the Patient Health Questionnaire-4, coping with the Brief COPE, and caregiver portal use to manage care recipient's and their own health.

RESULTS

We found that 77% of respondents (720/937) accessed electronic health record patient portals for their care recipients, themselves, or both. Multivariate models indicated use of care recipient electronic health record portals by caregivers was more likely with young, White, married, low-income caregivers caring for a parent, residing with the care recipient, and experiencing more caregiver depression. Caregiver use of their own electronic health record portal was more likely with young, White, high-income caregivers caring for a parent and experiencing chronic medical conditions of their own. Partially due to multicollinearity, anxiety and coping did not contribute independently to this model.

CONCLUSIONS

Findings from the survey could open avenues for future research into caregiver use of technology for informational support or intervention, including wearables and mobile health.

INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/4918.

摘要

背景

由于造血细胞移植患者的家庭照护者长期承担多方面的照护责任（如医疗、家庭、财务等），他们也有多种身体、社会、心理和信息方面的需求。

目的

本研究探讨了家庭照护者使用电子健康记录患者门户来管理自身及造血细胞移植受照护者健康的情况，以及与门户使用相关的潜在因素。

方法

一项电子照护者健康调查最初通过对造血细胞移植照护者的认知访谈方法开发，由患者权益倡导组织在美国全国范围内分发给造血细胞移植患者的家庭照护者。该调查用于评估自我报告的照护者人口统计学特征、照护特征、使用患者健康问卷 - 4评估抑郁和焦虑情况、使用简易应对方式问卷评估应对情况，以及照护者使用门户来管理受照护者和自身健康的情况。

结果

我们发现77%的受访者（720/937）为其受照护者、自己或两者访问了电子健康记录患者门户。多变量模型表明，年轻、白人、已婚、低收入、照护父母、与受照护者同住且照护者抑郁程度较高的照护者更有可能使用受照护者的电子健康记录门户。年轻、白人、高收入、照护父母且自身患有慢性疾病的照护者更有可能使用自己的电子健康记录门户。部分由于多重共线性，焦虑和应对方式并未独立对该模型产生影响。