Background
Parkinson's disease (PD) is a neurodegenerative disease that significantly affects patients' quality of life. The myriad complexities of the disease, including its nonmotor manifestations, are beginning to be more fully appreciated, particularly in regard to the emotional and social effects of PD. Considering that both motor and nonmotor manifestations of PD significantly influence the health outcomes and conditions of patients, and their health-related quality of life (HRQOL), we collected qualitative data from patients with PD, as well as caregivers of persons with PD having cognitive impairment, to assess their perceptions of the impact of PD on HRQOL.
Methods
We conducted eight focus groups and five one-on-one interviews in English and in Spanish between March 2007 and February 2008. Three of the focus groups were conducted with a total of 15 caregivers; the remaining focus groups and all interviews were conducted with 48 PD patients. Study participants were asked about the challenges that PD patients may experience, particularly pertaining to physical functioning, the impact of PD on their emotional status, and social functioning.
Results
Based on analysis of the transcripts, we identified seven overarching domains or themes that reflect patients' perspectives on living with PD, ie, physical functioning, social and role functioning, emotional impact, fears and uncertainty about the future, stigma and other feelings about PD, coping mechanisms, and benefits of having PD.
Conclusion
We underscore the salient aspects regarding the physical effects of PD along with its nonphysical ramifications, offering perspectives into the experience of PD and suggestions on how PD patients and their caregivers may cope with the disease.
Background: Vascular comorbidities (VCs) including hypertension (HTN) are associated with worse multiple sclerosis (MS) outcomes. HTN is common in Latinx, but the prevalence and relationship with disability are unknown in Latinx with MS. Methods: Latinx ( n = 451) from the Alliance for Research in Hispanic MS (ARHMS) seen between 2007 and 2019 were included. HTN, diabetes (DM), hyperlipidemia (HLD), ischemic events, and smoking were considered VC. Blood pressures (BPs) were classified using the American Heart Association (AHA) criteria. Logistic regression determined associations between VC and ambulatory disability accounting for age, sex, and disease duration. Results: Medical comorbidities were found in 41.9% and VC in 24.2%. Smoking (13.6%) and HTN (7.3%) were the most common. HTN was the most common over the age of 40 (12.6%). The odds of having severe disability were three times higher for those with HTN (odds ratio [OR], 3.12; 95% confidence interval (CI), 1.37–7.12). Stage II HTN according to AHA also tripled the odds (OR, 2.89; 95%CI, 1.11–7.55). AHA BP confirmed HTN in 27.5% (compared to 7.3% with established diagnosis). Conclusion: HTN diagnosis and stage II HTN defined by AHA were independently associated with severe ambulatory disability in Latinx with MS. HTN was underdiagnosed. Future studies should assess whether HTN treatment control would prevent disability in MS.
Background Health communication tools like film are capable of reducing health disparities and could be effective in addressing negative illness perceptions of MS in Hispanics/Latinx. Objective To test the feasibility of using a culturally appropriate short narrative film to examine illness perceptions overtime and attitudes in Hispanics/Latinx affected with MS. Methods Participants were assigned to view a short narrative film (n = 130) or not (n = 106). The Brief Illness Perception Questionnaire (BIPQ) was used to examine illness perceptions at baseline, one and three months. Focus groups were conducted at 6 months. Measures of sociocultural integration were obtained. Individual group BIPQ domains were evaluated over time using paired sample t-test. Multivariate linear regression was used to examine predictors of BIPQ change. Results A more positive perception of treatment (p < 0.0001) and understanding (p = 0.0003) were seen at 3 months for those exposed to film. Focus groups were effective in highlighting that the perceived disease prognosis, family support and awareness of MS contributes to attitudes. Exposure to film was found to be the strongest predictor (Beta:6.31, p = 0.01) of BIPQ change at three months. Conclusion Our results provide support that a short narrative film of MS in Hispanics/Latinx is a feasible intervention to change perceptions of MS to a more positive view.
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