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