Cross‐cultural differences in Parkinson's disease caregiving and burden between the United States and Mexico

Smith, Erin R.; Perrin, Paul B.; Tyler, Carmen M.; Lageman, Sarah K.; Villaseñor, Teresita

doi:10.1002/brb3.1753

Cited by 14 publications

(14 citation statements)

References 43 publications

(62 reference statements)

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“…PD caregivers in Mexico and the US. A more detailed comparison of Mexican and US PD caregiver and patient characteristics such as education, social class, and caregiving-related variables is outlined in another manuscript [24], which found that caregivers at the US site were older than those in Mexico, had higher education and social class, and spent fewer hours per week providing care.…”

Section: Procedure Following Protocol Review and Approval Bymentioning

confidence: 99%

Structural Equation Modeling of Parkinson’s Caregiver Social Support, Resilience, and Mental Health: A Strength-Based Perspective

Tyler

Henry

Perrin

et al. 2020

Neurology Research International

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Only scant literature has focused on social support in Parkinson’s disease (PD) caregivers, and no studies to date have examined resilience in this population, despite both variables having been shown to be important in other caregiving populations. As a result, the purpose of the current study was to construct and validate a theoretical structural equation model whereby social support is associated with higher levels of resilience in PD caregivers and increased resilience is related to decreased mental health symptoms. Two hundred fifty three PD caregivers from two clinics in the United States and Mexico completed self-report measures of these constructs. Results suggested that the hypothesized pattern was robustly supported with the structural equation model showing generally good fit indices. Higher levels of social support were associated with increased resilience, which in turn was associated with reduced mental health symptoms. Resilience partially mediated social support’s effect on mitigating mental health symptoms. The model explained 11% of the variance in resilience and 35% in mental health symptoms. These findings have implications for future research on the development and tailoring of interventions to improve social support, resilience, and mental health in PD caregivers.

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Section: Procedure Following Protocol Review and Approval Bymentioning

confidence: 99%

Structural Equation Modeling of Parkinson’s Caregiver Social Support, Resilience, and Mental Health: A Strength-Based Perspective

Tyler

Henry

Perrin

et al. 2020

Neurology Research International

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“…One explanation for the regional variation observed in this study could involve cultural factors related to patient self‐perception, use of healthcare resources, caregiving, and treatment practices for patients with PD. Findings from studies have shown intercountry differences in caregiver demographics, the amount of burden, and time spent caregiving, possibly because of differences in the availability of social support and cultural attitudes toward familial caregiving 16,17 . Likewise, cultural differences have been attributed to different outcomes in cognitive testing 18 .…”

Section: Discussionmentioning

confidence: 99%

Intercountry comparisons of advanced Parkinson's disease symptoms and management: Analysis from the OBSERVE‐PD observational study

Fasano

Fung

Seppi

et al. 2022

Acta Neuro Scandinavica

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Objectives: In the absence of widely accepted criteria, determining when a patient with Parkinson's disease (PD) may benefit from more advanced treatments such as device-aided therapy (DAT) so far remains a matter of physician judgment. This analysis investigates how classification of PD varies across countries relative to measures of disease severity. Materials and Methods:The OBSERVational, cross-sEctional PD (OBSERVE-PD) study included consecutive patients with PD at centers that offer DATs in 18 countries. In this subgroup analysis, we explore intercountry differences in identification of advanced versus non-advanced PD based on physician's clinical judgment, symptoms assessed using Delphi consensus criteria, use of DAT, motor and non-motor symptoms, and caregiver support. Demographic and clinical characteristics were obtained through review of medical records.Results: Overall, 1342 of 2615 patients (51.3%) were assessed by physicians as having advanced PD. The proportion of patients in different countries identified as having advanced PD (24.4-82.2%) varied. In 15 of 18 countries, a greater proportion of patients with advanced PD, according to select Delphi criteria, were identified by physicians as having advanced PD than with non-advanced PD. There was a wide variability across countries in the proportion of patients with no dyskinesia, disabling dyskinesia, dyskinesia pain, and non-motor symptoms who were identified by physicians as having advanced versus non-advanced PD. Conclusions:The proportion of patients identified with advanced PD symptoms varies widely across countries, despite differences on the patients' profiles, indicating a need for objective diagnostic criteria to help identify patients who may benefit from DAT.

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“…There is some evidence for interventions to reduce caregiver strain which include education for the person with PD and the caregiver, psychotherapy targeting psychiatric symptoms in the caregiver and management of neuropsychiatric symptoms in the person living with PD [ 22 ]. Lastly, caregiver strain is influenced by cultural perceptions of disease and caregiving, leading to different results in other parts of the world [ 23 , 24 ].…”

Section: Discussionmentioning

confidence: 99%

Better quality of life and less caregiver strain in young-onset Parkinson’s disease: a multicentre retrospective cohort study

Groen¹,

Bloem²,

et al. 2020

J Neurol

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Background Parkinson’s disease (PD) is typically considered as a disease of the elderly. However, there is a sizeable subgroup of patients where PD starts at a younger age, known as young-onset PD (YOPD). We evaluated the differences in quality of life and caregiver strain between YOPD and later onset PD (LOPD) patients in a large cohort. Methods In collaboration with the Parkinson Foundation Quality Improvement Initiative (PF-QII), we conducted a retrospective three-year analysis on 962 PD patients of the QII database (starting date May 2016). Of these, 272 patients had YOPD, and 690 had LOPD. The Parkinson’s Disease Questionnaire-39 (PDQ-39) total score served as primary outcome measure. Furthermore, we analysed group differences in modified caregiver strain index (MCSI) total score, three cognition functions, and number of falls. A regression analysis adjusting for covariates was used to assess the association of age at onset with PDQ-39 and MCSI. Results PDQ scores were better in YOPD patients, MCSI scores on social constraint were lower in YOPD patients, but scores on financial constraint were higher in this group. After adjusting for covariates, YOPD patients had better quality of life and less caregiver strain at all follow-up moments, but not at baseline. Decline over time for all outcomes was lower in the YOPD group compared to the LOPD group. Cognitive functioning and number of falls progressed slower in the YOPD group compared to the LOPD group. Conclusion Compared to LOPD patients, YOPD patients had a better quality of life, less caregiver strain, fewer falls and better cognitive functioning after their first follow-up visit, and also a slower decline over time.

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Cross‐cultural differences in Parkinson's disease caregiving and burden between the United States and Mexico

Abstract: This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Cited by 14 publications

References 43 publications

Structural Equation Modeling of Parkinson’s Caregiver Social Support, Resilience, and Mental Health: A Strength-Based Perspective

Structural Equation Modeling of Parkinson’s Caregiver Social Support, Resilience, and Mental Health: A Strength-Based Perspective

Intercountry comparisons of advanced Parkinson's disease symptoms and management: Analysis from the OBSERVE‐PD observational study

Better quality of life and less caregiver strain in young-onset Parkinson’s disease: a multicentre retrospective cohort study

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