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

2020 ◽  
Author(s):  
Maarten Te Groen ◽  
◽  
Bastiaan R. Bloem ◽  
Samuel S. Wu ◽  
Bart Post
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Cognitive Functioning ◽  
Age At Onset ◽  
Caregiver Strain ◽  
Young Onset ◽  
Over Time

Abstract 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.

scholarly journals Extradural Motor Cortex Stimulation in Parkinson’s Disease: Long-Term Clinical Outcome

2021 ◽  
Vol 11 (4) ◽  
pp. 416
Author(s):  
Carla Piano ◽  
Francesco Bove ◽  
Delia Mulas ◽  
Enrico Di Stasio ◽  
Alfonso Fasano ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Motor Cortex ◽  
Clinical Outcome ◽  
Motor Cortex Stimulation ◽  
Dopaminergic Therapy

Previous investigations have reported on the motor benefits and safety of chronic extradural motor cortex stimulation (EMCS) for patients with Parkinson’s disease (PD), but studies addressing the long-term clinical outcome are still lacking. In this study, nine consecutive PD patients who underwent EMCS were prospectively recruited, with a mean follow-up time of 5.1 ± 2.5 years. As compared to the preoperatory baseline, the Unified Parkinson’s Disease Rating Scale (UPDRS)-III in the off-medication condition significantly decreased by 13.8% at 12 months, 16.1% at 18 months, 18.4% at 24 months, 21% at 36 months, 15.6% at 60 months, and 8.6% at 72 months. The UPDRS-IV decreased by 30.8% at 12 months, 22.1% at 24 months, 25% at 60 months, and 36.5% at 72 months. Dopaminergic therapy showed a progressive reduction, significant at 60 months (11.8%). Quality of life improved by 18.0% at 12 months, and 22.4% at 60 months. No surgical complication, cognitive or behavioral change occurred. The only adverse event reported was an infection of the implantable pulse generator pocket. Even in the long-term follow-up, EMCS was shown to be a safe and effective treatment option in PD patients, resulting in improvements in motor symptoms and quality of life, and reductions in motor complications and dopaminergic therapy.

scholarly journals Influence of the COVID-19 Pandemic on Quality of Life of Patients with Parkinson’s Disease

2020 ◽  
Vol 2020 ◽  
pp. 1-6
Author(s):  
Dengjun Guo ◽  
Bing Han ◽  
Yuqiang Lu ◽  
Chenling Lv ◽  
Xiaoling Fang ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Prevention And Control ◽  
Control Period ◽  
And Control ◽  
Disease Questionnaire ◽  
Gradual Release

Introduction. This study investigated the influence of lockdown during the 2019 coronavirus disease (COVID-19) pandemic on the quality of life of patients with Parkinson’s disease (PD). Methods. We conducted a questionnaire survey involving 113 patients with PD from Xihu District, Hangzhou, Zhejiang. During the epidemic prevention and control period (February 1 to March 31, 2020), patients enrolled were asked to fill out questionnaires, including the “COVID-19 Questionnaire for PD Patients during the Period of Epidemic Prevention and Control” and “39-item Parkinson’s Disease Questionnaire (PDQ-39).” During the phase of gradual release of epidemic prevention and control (April 1 to April 30, 2020), all patients were followed up again, and PDQ-39 questionnaires were completed. Results. The quality of life for patients during the period of epidemic prevention and control was worse than that after epidemic prevention and control (P < 0.001). The biggest problem that they faced was that they could not receive their doctor’s advice or guidance regularly. The quality of life of patients who had difficulty getting doctors’ guidance or those who changed their routine medication due to lockdown was even worse. Telemedicine was quite effective and efficient for patients to get doctors’ guidance during lockdown. Conclusions. The inconvenient treatment during the pandemic directly caused the aggravation of patients’ symptoms and the decline in their quality of life. It is suggested that social media (such as WeChat or Tencent QQ) are used for regular interactions and follow-up appointments for patients with inconvenient medical treatment.

scholarly journals PND47 Assessment of Quality of Life of Australians With Young Onset Parkinson's Disease

2012 ◽  
Vol 15 (7) ◽  
pp. A554
Author(s):  
M.S. Ortiz ◽  
E. Partridge ◽  
G. Hawthorne ◽  
M. Dixon
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Young Onset

scholarly journals Perceived walking difficulties in Parkinson’s disease – predictors and changes over time

2021 ◽  
Author(s):  
Magnus Lindh-Rengifo ◽  
Stina B. Jonasson ◽  
Susann Ullén ◽  
Niklas Mattsson-Carlgren ◽  
Maria H. Nilsson
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Cognitive Functioning ◽  
Predictive Factors ◽  
Intervention Studies ◽  
Personal Factors ◽  
Dual Tasking ◽  
Balance Problems ◽  
Over Time

Abstract Background: People with Parkinson’s disease (PD) have described their walking difficulties as linked to activity avoidance, social isolation, reduced independence and quality of life. There is a knowledge gap regarding predictive factors of perceived walking difficulties in people with PD. Such knowledge could be useful when designing intervention studies. This study aimed to investigate how perceived walking difficulties evolve over a 3-year period in people with PD. A specific aim was to identify predictive factors of perceived walking difficulties.Methods: 148 people with PD (mean age 67.9 years) completed the Walk-12G questionnaire (which assesses perceived walking difficulties) at both baseline and the 3-year follow-up. Paired samples t-test was used for comparing baseline and follow-up mean scores. Multivariable linear regression analyses were used to identify predictive factors of perceived walking difficulties. Results: Perceived walking difficulties increased after 3 years: mean Walk-12G score 14.8 versus 18.7, p <0.001. Concerns about falling was the strongest predictor (β=0.445) of perceived walking difficulties, followed by perceived balance problems while dual tasking (β=0.268) and pain (β=0.153). Perceived balance problems while dual tasking was the strongest predictor (β=0.180) of a change in perceived walking difficulties, followed by global cognitive functioning (β=-0.107). Conclusions: Perceived walking difficulties increase over time in people with PD. Both personal factors (i.e. concerns about falling) and motor aspects (i.e. balance problems while dual tasking) seem to have a predictive role. Importantly, our study indicates that also non-motor symptoms (e.g. pain and cognitive functioning) seem to be of importance for future perceived walking difficulties. Future intervention studies that address these factors need to confirm their preventative effect on perceived walking difficulties.

scholarly journals Perceived walking difficulties in Parkinson’s disease – predictors and changes over time

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Magnus Lindh-Rengifo ◽  
Stina B. Jonasson ◽  
Susann Ullén ◽  
Niklas Mattsson-Carlgren ◽  
Maria H. Nilsson
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Cognitive Functioning ◽  
Predictive Factors ◽  
Intervention Studies ◽  
Personal Factors ◽  
Dual Tasking ◽  
Balance Problems ◽  
Over Time

Abstract Background People with Parkinson’s disease (PD) have described their walking difficulties as linked to activity avoidance, social isolation, reduced independence and quality of life. There is a knowledge gap regarding predictive factors of perceived walking difficulties in people with PD. Such knowledge could be useful when designing intervention studies. This study aimed to investigate how perceived walking difficulties evolve over a 3-year period in people with PD. A specific aim was to identify predictive factors of perceived walking difficulties. Methods One hundred forty-eight people with PD (mean age 67.9 years) completed the Generic Walk-12 (Walk-12G) questionnaire (which assesses perceived walking difficulties) at both baseline and the 3-year follow-up. Paired samples t-test was used for comparing baseline and follow-up mean scores. Multivariable linear regression analyses were used to identify predictive factors of perceived walking difficulties. Results Perceived walking difficulties increased after 3 years: mean Walk-12G score 14.8 versus 18.7, p < 0.001. Concerns about falling was the strongest predictor (β = 0.445) of perceived walking difficulties, followed by perceived balance problems while dual tasking (β = 0.268) and pain (β = 0.153). Perceived balance problems while dual tasking was the strongest predictor (β = 0.180) of a change in perceived walking difficulties, followed by global cognitive functioning (β = − 0.107). Conclusions Perceived walking difficulties increase over time in people with PD. Both personal factors (i.e. concerns about falling) and motor aspects (i.e. balance problems while dual tasking) seem to have a predictive role. Importantly, our study indicates that also non-motor symptoms (e.g. pain and cognitive functioning) seem to be of importance for future perceived walking difficulties. Future intervention studies that address these factors need to confirm their preventative effect on perceived walking difficulties.

Does self-reported well-being of patients with Parkinson's disease influence caregiver strain and quality of life?

2011 ◽  
Vol 17 (5) ◽  
pp. 348-352 ◽  
Author(s):  
Michele Peters ◽  
Ray Fitzpatrick ◽  
Helen Doll ◽  
Diane Playford ◽  
Crispin Jenkinson
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Well Being ◽  
Caregiver Strain

scholarly journals Mindfulness for Motor and Nonmotor Dysfunctions in Parkinson’s Disease

2016 ◽  
Vol 2016 ◽  
pp. 1-13 ◽  
Author(s):  
Nadeeka N. W. Dissanayaka ◽  
Farah Idu Jion ◽  
Nancy A. Pachana ◽  
John D. O’Sullivan ◽  
Rodney Marsh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Rating Scale ◽  
Controlled Trial ◽  
Nonparametric Tests ◽  
Life Questionnaire ◽  
Mindfulness Intervention

Background. Motor and nonmotor symptoms negatively influence Parkinson’s disease (PD) patients’ quality of life. Mindfulness interventions have been a recent focus in PD. The present study explores effectiveness of a manualized group mindfulness intervention tailored for PD in improving both motor and neuropsychiatric deficits in PD.Methods. Fourteen PD patients completed an 8-week mindfulness intervention that included 6 sessions. The Five Facet Mindfulness Questionnaire (FFMQ), Geriatric Anxiety Inventory, Hamilton Depression Rating Scale, PD Cognitive Rating Scale, Unified PD Rating Scale, PD Quality of Life Questionnaire, and Outcome Questionnaire (OQ-45) were administered before and after the intervention. Participants also completed the FFMQ-15 at each session. Gains at postassessment and at 6-month follow-up were compared to baseline using pairedt-tests and Wilcoxon nonparametric tests.Results. A significant increase in FFMQ-Observe subscale, a reduction in anxiety, depression, and OQ-45 symptom distress, an increase in PDCRS-Subcortical scores, and an improvement in postural instability, gait, and rigidity motor symptoms were observed at postassessment. Gains for the PDCRS were sustained at follow-up.Conclusion. The mindfulness intervention tailored for PD is associated with reduced anxiety and depression and improved cognitive and motor functioning. A randomised controlled trial using a large sample of PD patients is warranted.

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