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本文引用的文献

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Moving the Dial Toward Equity in Parkinson's Disease Clinical Research: a Review of Current Literature and Future Directions in Diversifying PD Clinical Trial Participation.推动帕金森病临床研究中的公平性:对当前文献的回顾及多元化 PD 临床试验参与的未来方向。
Curr Neurol Neurosci Rep. 2022 Aug;22(8):475-483. doi: 10.1007/s11910-022-01212-8. Epub 2022 Jun 17.
2
Designing the Fostering Inclusivity in Research Engagement for Underrepresented Populations in Parkinson's Disease study.设计促进帕金森病研究中代表性不足人群参与的研究。
Contemp Clin Trials. 2022 Apr;115:106713. doi: 10.1016/j.cct.2022.106713. Epub 2022 Feb 22.
3
Longitudinal, Interdisciplinary Home Visits Versus Usual Care for Homebound People With Advanced Parkinson Disease: Protocol for a Controlled Trial.针对居家晚期帕金森病患者的纵向、跨学科家访与常规护理对比:一项对照试验方案
JMIR Res Protoc. 2021 Sep 14;10(9):e31690. doi: 10.2196/31690.
4
Factors Associated with Health-Related Quality of Life in Late-Stage Parkinson's Disease.晚期帕金森病患者健康相关生活质量的相关因素
Mov Disord Clin Pract. 2021 Mar 23;8(4):563-570. doi: 10.1002/mdc3.13186. eCollection 2021 May.
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Uptake of telehealth in Parkinson's disease clinical care and research during the COVID-19 pandemic.在 COVID-19 大流行期间,帕金森病临床护理和研究中远程医疗的应用。
Parkinsonism Relat Disord. 2021 May;86:97-100. doi: 10.1016/j.parkreldis.2021.03.032. Epub 2021 Apr 11.
6
Disease severity and quality of life in homebound people with advanced Parkinson disease: A pilot study.居家晚期帕金森病患者的疾病严重程度与生活质量:一项试点研究。
Neurol Clin Pract. 2020 Aug;10(4):277-286. doi: 10.1212/CPJ.0000000000000716.
7
Novel Outreach Program and Practical Strategies for Patients with Parkinsonism in the COVID-19 Pandemic.新冠疫情期间帕金森病患者的新型拓展项目和实用策略
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Optimizing Treatment in Undertreated Late-Stage Parkinsonism: A Pragmatic Randomized Trial.优化治疗未充分治疗的晚期帕金森病:一项实用随机试验。
J Parkinsons Dis. 2020;10(3):1171-1184. doi: 10.3233/JPD-202033.
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Estimation of the Incident Homebound Population in the US Among Older Medicare Beneficiaries, 2012 to 2018.2012 年至 2018 年美国老年医疗保险受益人中居家事件发生率的估计。
JAMA Intern Med. 2020 Jul 1;180(7):1022-1025. doi: 10.1001/jamainternmed.2020.1636.
10
Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients With Parkinson Disease and Related Disorders: A Randomized Clinical Trial.比较综合门诊姑息治疗与标准治疗对帕金森病及相关疾病患者的效果:一项随机临床试验。
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居家 PD:纵向远程医疗增强的跨学科居家探访对居家帕金森病患者的护理和生活质量的影响。

IN-HOME-PD: The effects of longitudinal telehealth-enhanced interdisciplinary home visits on care and quality of life for homebound individuals with Parkinson's disease.

机构信息

Division of Movement Disorders, Department of Neurological Sciences, Rush University Medical Center, 1725 West Harrison Street, Suite 755, Chicago, IL, 60612, USA; Rush Graduate College, Rush University Medical Center, 600 South Paulina Street, Suite 438, Chicago, IL, 60612, USA.

Division of Movement Disorders, Department of Neurological Sciences, Rush University Medical Center, 1725 West Harrison Street, Suite 755, Chicago, IL, 60612, USA.

出版信息

Parkinsonism Relat Disord. 2022 Sep;102:68-76. doi: 10.1016/j.parkreldis.2022.07.017. Epub 2022 Aug 7.

DOI:10.1016/j.parkreldis.2022.07.017
PMID:35963046
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9578443/
Abstract

INTRODUCTION

Homebound individuals with advanced Parkinson's disease (PD) are underrepresented in research and care. We tested the impact of interdisciplinary, telehealth-enhanced home visits (IN-HOME-PD) on patient quality of life (QoL) compared with usual care.

METHODS

Nonrandomized controlled trial of quarterly, structured, telehealth-enhanced interdisciplinary home visits focused on symptom management, home safety, medication reconciliation, and psychosocial needs (ClinicalTrials.gov NCT03189459). We enrolled homebound participants with advanced PD (Hoehn & Yahr (HY) stage ≥3). Usual care participants had ≥2 visits in the Parkinson's Outcomes Project (POP) registry. We compared within- and between-group one-year change in QoL using the Parkinson's Disease Questionnaire.

RESULTS

Sixty-five individuals enrolled in IN-HOME-PD (32.3% women; mean age 78.9 (SD 7.6) years; 74.6% white; 78.5% HY ≥ 4) compared with 319 POP controls, with differences in age, race, and PD severity (37.9% women; mean age 70.1 (7.8) years; 96.2% white; 15.1% HY ≥ 4). Longitudinally, the intervention group's QoL remained unchanged (within-group p = 0.74, Cohen's d = 0.05) while QoL decreased over time in POP controls (p < 0.001, Cohen's d = 0.27). The difference favored the intervention (between-group p = 0.04). POP participants declined in 7/8 dimensions while IN-HOME-PD participants' bodily discomfort improved and hospice use and death at home-markers of goal-concordant care-far exceeded national data.

CONCLUSIONS

Telehealth-enhanced home visits can stabilize and may improve the predicted QoL decline in advanced PD via continuity of care and facilitating goal-concordant care, particularly among diverse populations. Extrapolating features of this model may improve continuity of care and outcomes in advanced PD.

摘要

介绍

患有晚期帕金森病(PD)的居家患者在研究和护理中代表性不足。我们测试了跨学科、远程医疗增强型家访(IN-HOME-PD)对患者生活质量(QoL)的影响,与常规护理相比。

方法

非随机对照试验,每季度进行一次结构化、远程医疗增强型跨学科家访,重点关注症状管理、家庭安全、药物调整和心理社会需求(ClinicalTrials.gov NCT03189459)。我们招募了患有晚期 PD(Hoehn & Yahr (HY) 分期≥3)的居家患者。常规护理组的参与者在帕金森病结果项目(POP)登记册中至少有 2 次就诊。我们使用帕金森病问卷比较了一年内 QoL 的组内和组间变化。

结果

65 名参与者入组 IN-HOME-PD(32.3%为女性;平均年龄 78.9(7.6)岁;74.6%为白人;78.5%的 HY≥4),与 319 名 POP 对照组相比,在年龄、种族和 PD 严重程度方面存在差异(37.9%为女性;平均年龄 70.1(7.8)岁;96.2%为白人;15.1%的 HY≥4)。纵向来看,干预组的 QoL 保持不变(组内 p=0.74,Cohen's d=0.05),而 POP 对照组的 QoL 随时间推移而下降(p<0.001,Cohen's d=0.27)。干预组更有优势(组间 p=0.04)。POP 参与者在 8 个维度中的 7 个维度上下降,而 IN-HOME-PD 参与者的身体不适得到改善,临终关怀的使用和在家死亡——这是目标一致护理的标志——远远超过了全国数据。

结论

远程医疗增强型家访可以通过连续性护理和促进目标一致的护理来稳定并可能改善晚期 PD 的预测 QoL 下降,特别是在多样化的人群中。推广这种模式的特点可能会改善晚期 PD 的连续性护理和结果。