scholarly journals Advance Care Planning and Care Coordination for People With Parkinson's Disease and Their Family Caregivers—Study Protocol for a Multicentre, Randomized Controlled Trial

2021 ◽  
Vol 12 ◽  
Author(s):  
Marjan J. Meinders ◽  
Giovanni Gentile ◽  
Anette E. Schrag ◽  
Spiros Konitsiotis ◽  
Carsten Eggers ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Care Coordination ◽  
Controlled Trial ◽  
Symptom Burden ◽  
Advance Care ◽  
The Impact

Background: Parkinson's disease (PD) is a progressive neurodegenerative disease with motor- and non-motor symptoms. When the disease progresses, symptom burden increases. Consequently, additional care demands develop, the complexity of treatment increases, and the patient's quality of life is progressively threatened. To address these challenges, there is growing awareness of the potential benefits of palliative care for people with PD. This includes communication about end-of-life issues, such as Advance Care Planning (ACP), which helps to elicit patient's needs and preferences on issues related to future treatment and care. In this study, we will assess the impact and feasibility of a nurse-led palliative care intervention for people with PD across diverse European care settings.Methods: The intervention will be evaluated in a multicentre, open-label randomized controlled trial, with a parallel group design in seven European countries (Austria, Estonia, Germany, Greece, Italy, Sweden and United Kingdom). The “PD_Pal intervention” comprises (1) several consultations with a trained nurse who will perform ACP conversations and support care coordination and (2) use of a patient-directed “Parkinson Support Plan-workbook”. The primary endpoint is defined as the percentage of participants with documented ACP-decisions assessed at 6 months after baseline (t1). Secondary endpoints include patients' and family caregivers' quality of life, perceived care coordination, patients' symptom burden, and cost-effectiveness. In parallel, we will perform a process evaluation, to understand the feasibility of the intervention. Assessments are scheduled at baseline (t0), 6 months (t1), and 12 months (t2). Statistical analysis will be performed by means of Mantel–Haenszel methods and multilevel logistic regression models, correcting for multiple testing.Discussion: This study will contribute to the current knowledge gap on the application of palliative care interventions for people with Parkinson's disease aimed at ameliorating quality of life and managing end-of-life perspectives. Studying the impact and feasibility of the intervention in seven European countries, each with their own cultural and organisational characteristics, will allow us to create a broad perspective on palliative care interventions for people with Parkinson's disease across settings.Clinical Trial Registration:www.trialregister.nl, NL8180.

The impact of sleep and mood disorders on quality of life in Parkinson’s disease patients

2011 ◽  
Vol 258 (12) ◽  
pp. 2222-2229 ◽  
Author(s):  
Eva Havlikova ◽  
Jitse P. van Dijk ◽  
Iveta Nagyova ◽  
Jaroslav Rosenberger ◽  
Berrie Middel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Mood Disorders ◽  
The Impact

Motor Symptom Asymmetry Predicts Non-motor Outcome and Quality of Life Following STN DBS in Parkinson's Disease

2021 ◽  
Author(s):  
Julie Péron ◽  
Philippe Voruz ◽  
Jordan Pierce ◽  
Kévin Ahrweiller ◽  
Claire Haegelen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Motor Symptom ◽  
Control Group ◽  
Motor Symptoms ◽  
Healthy Control ◽  
The Impact ◽  
Stn Dbs

Abstract Risk factors for long-term non-motor disorders and quality of life following subthalamic nucleus deep-brain stimulation (STN DBS) have not yet been fully identified. In the present study, we investigated the impact of motor symptom asymmetry in Parkinson’s disease.Data were extracted for 52 patients with Parkinson’s disease (half with left-sided motor symptoms and half with right-sided ones) who underwent bilateral STN and a matched healthy control group. Performances for cognitive tests and neuropsychiatric and quality-of-life questionnaires at 12 months post-DBS were compared with a pre-DBS baseline. Results indicated a deterioration in cognitive performance post-DBS in patients with left-sided motor symptoms. Performances of patients with right-sided motor symptoms were maintained, except for a verbal executive task. These differential effects had an impact on patients’ quality of life. The results highlight the existence of two distinct cognitive profiles of Parkinson’s disease, depending on motor symptom asymmetry. This asymmetry is a potential risk factor for non-motor adverse effects following STN DBS.

scholarly journals The impact of cognitive performance on quality of life in individuals with Parkinson's disease

2016 ◽  
Vol 10 (4) ◽  
pp. 303-309 ◽  
Author(s):  
Maira Rozenfeld Olchik ◽  
Annelise Ayres ◽  
Marcieli Ghisi ◽  
Artur Francisco Schumacher Schuh ◽  
Carlos Roberto Mello Rieder
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Cognitive Performance ◽  
Poor Performance ◽  
Cognitive Testing ◽  
Cognitive Tests ◽  
Patient Consent ◽  
The Impact

ABSTRACT Background: Evidence points to the occurrence of cognitive impairment in all stages of PD, constituting a frequent and debilitating symptom, due to high impact on quality of life and mortality of patients. Objective: To correlate cognitive performance with quality of life in PD. Methods: The sample was drawn from a Movement Disorders Clinic of a reference hospital in Porto Alegre. Inclusion criteria were: PD diagnosis, according to the United Kingdom Parkinson's Disease Society Brain Bank criteria for idiopathic PD (Hughes et al. 1992) and patient consent to participate. Patients with other neurological pathologies and those submitted to deep brain stimulation were excluded. The evaluation consisted of a cognitive testing battery (composed of eight tests for assessing cognitive performance), and a questionnaire on quality of life (PDQ-39) and depression (BDI). Results: The sample comprised 85 individuals with PD, with a mean age of 62.9 years (±10.7), mean disease duration of 10.4 years (±5.7), and mean educational level of four years (±4.3). There was a significant relationship between total score on the PDQ and all cognitive tests, showing that poor cognitive performance was correlated with poor quality of life. Moreover, a significant correlation was observed between cognitive tests and depression, H&Y, education level, and age. Conclusion: It may be concluded that the individuals with PD in this sample showed a correlation between poorer quality of life and worse cognitive performance. Poor performance was also correlated with more advanced stage, older age, low level of education and depression.

scholarly journals Lee Silverman Voice Treatment versus standard speech and language therapy versus control in Parkinson’s disease: preliminary cost-consequence analysis of the PD COMM pilot randomised controlled trial

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Sarah Scobie ◽  
Sue Jowett ◽  
Tosin Lambe ◽  
Smitaa Patel ◽  
Rebecca Woolley ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Randomised Controlled Trial ◽  
Controlled Trial ◽  
Language Therapy ◽  
Voice Treatment ◽  
Cost Consequence ◽  
Randomised Controlled

Abstract Background The PD COMM pilot randomised controlled trial compared Lee Silverman Voice Treatment (LSVT® LOUD) with standard NHS speech and language therapy (SLT) and a control arm in people with Parkinson’s disease (PwPD) with self-reported problems with voice or speech. This analysis compares costs and quality of life outcomes between the trial arms, and considers the validity of the alternative outcome measures for economic evaluations. Methods A comparison of costs and outcomes was undertaken alongside the PD COMM pilot trial involving three arms: LSVT® LOUD treatment (n = 30); standard NHS SLT (n = 30); and a control arm (n = 29) excluded from receiving therapy for at least 6 months after randomisation unless deemed medically necessary. For all trial arms, resource use and NHS, social care and patient costs and quality of life were collected prospectively at baseline, 3, 6, and 12 months. Total economic costs and outcomes (EQ-5D-3L, ICECAP-O) were considered over the 12-month follow-up period from an NHS payer perspective. Quality of life measures for economic evaluation of SLT for people with Parkinson’s disease were compared. Results Whilst there was no difference between arms in voice or quality of life outcomes at 12 months, there were indications of differences at 3 months in favour of SLT, which need to be confirmed in the main trial. The estimated mean cost of NHS care was £3288 per patient per year for the LSVT® LOUD arm, £2033 for NHS SLT, and £1788 for the control arm. EQ-5D-3L was more strongly correlated to voice impairment than ICECAP-O, and was sensitive to differences in voice impairment between arms. Conclusions The pilot did not identify an effect of SLT on disease-specific or economic outcomes for PwPD at 12 months; however, there appeared to be improvements at 3 months. In addition to the sample size not powered to detect difference in cost-consequence analysis, many patients in the control arm started SLT during the 12-month period used for economic analysis, in line with the study protocol. The LSVT® LOUD intervention was more intense and therefore more costly. Early indications suggest that the preferred economic outcome measure for the full trial is EQ-5D-3L; however, the ICECAP-O should still be included to capture a broader measure of wellbeing. Trial registration International Standard Randomised Controlled Trial Number Register: ISRCTN75223808. Registered 22 March 2012.

scholarly journals B-23 Non-Motor Symptom Profile in Parkinson’s Disease Patients and its impact on Quality of Life

2019 ◽  
Vol 34 (6) ◽  
pp. 969-969
Author(s):  
L Sabbah-Talasazan ◽  
J Miller ◽  
J Wertheimer
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Sleep Disturbance ◽  
Motor Symptom ◽  
Age Cohorts ◽  
Cognitive Difficulties ◽  
Symptom Profile ◽  
The Impact

Abstract Objective Non-motor Symptoms (NMS) in Parkinson’s Disease (PD) are known to be diverse and may include cognitive, psychiatric and sleep disturbance, fatigue, and autonomic disorders (e.g., cardiovascular dysregulation, orthostatic hypotension, thermo-dysregulation, sexual dysfunction, urinary and bowel dyscontrol). The aim of this study was to define the NMS profile in a large sample of PD patients with and without Deep Brain Stimulation (DBS) and its impact on quality of life (QOL). Method Cross-sectional, survey-based research design was used. 1,164 individuals with PD participated in this survey: 275 participants who underwent DBS and 889 without DBS. Participants completed the Non-Motor Symptom Scale (NMSS) and answered questions assessing the impact of NMS on everyday life. Participants were divided into younger (ages 50-69) and older (ages 70+) age cohorts and disease duration cohorts with early stage ( < 6 years) and advanced stage (6-10 years; 11+ years) groups. Results 24 out of 31 NMS categories were experienced by more than 50% of the participants. Urination difficulty, fatigue, sleep, constipation, and cognitive difficulties were symptoms most frequently reported to adversely impact day-to-day living, and cognitive difficulties followed by sleep disturbance had the strongest impact to quality of life. Conclusions NMS burden drives quality of life for many individuals and has remained a relatively new frontier for exploration, at least in depth and scope as it relates to assessment and treatment of NMS. Management of NMS remains an unmet need for individuals with PD. Implications for neuropsychologists are discussed.

scholarly journals The Impact of Mind-Body Exercises on Motor Function, Depressive Symptoms, and Quality of Life in Parkinson’s Disease: A Systematic Review and Meta-Analysis

2019 ◽  
Vol 17 (1) ◽  
pp. 31 ◽  
Author(s):  
Xiaohu Jin ◽  
Lin Wang ◽  
Shijie Liu ◽  
Lin Zhu ◽  
Paul Dinneen Loprinzi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Depressive Symptoms ◽  
Motor Function ◽  
Exercise Intervention ◽  
Meta Analysis ◽  
Cochrane Library ◽  
The Impact

Purpose: To systematically evaluate the effects of mind-body exercises (Tai Chi, Yoga, and Health Qigong) on motor function (UPDRS, Timed-Up-and-Go, Balance), depressive symptoms, and quality of life (QoL) of Parkinson’s patients (PD). Methods: Through computer system search and manual retrieval, PubMed, Web of Science, The Cochrane Library, CNKI, Wanfang Database, and CQVIP were used. Articles were retrieved up to the published date of June 30, 2019. Following the Cochrane Collaboration System Evaluation Manual (version 5.1.0), two researchers independently evaluated the quality and bias risk of each article, including 22 evaluated articles. The Pedro quality score of 6 points or more was found for 86% (19/22) of these studies, of which 21 were randomized controlled trials with a total of 1199 subjects; and the trial intervention time ranged from 4 to 24 weeks. Interventions in the control group included no-intervention controls, placebo, waiting-lists, routine care, and non-sports controls. Meta-analysis was performed on the literature using RevMan 5.3 statistical software, and heterogeneity analysis was performed using Stata 14.0 software. Results: (1) Mind-body exercises significantly improved motor function in PD patients, including UPDRS (SMD = −0.61, p < 0.001), TUG (SMD = −1.47, p < 0.001) and balance function (SMD = 0.79, p < 0.001). (2) Mind-body exercises also had significant effects on depression (SMD = −1.61, p = 0.002) and QoL (SMD = 0.66, p < 0.001). (3) Among the indicators, UPDRS (I2 = 81%) and depression (I2 = 91%) had higher heterogeneity; according to the results of the separate combined effect sizes of TUG (I2 = 29%), Balance (I2 = 16%) and QoL (I2 = 35%), it shows that the heterogeneity is small; (4) After meta-regression analysis of the age limit and other possible confounding factors, further subgroup analysis showed that the reason for the heterogeneity of UPDRS motor function may be related to the sex of PD patients and severity of the disease; the outcome of depression was heterogeneous. The reason for this may be the use of specific drugs in the experiment and the duration of intervention in the trial. Conclusion: (1) Mind-body exercises were found to have significant improvements in motor function, depressive symptoms, and quality of life in patients with Parkinson’s disease, and can be used as an effective method for clinical exercise intervention in PD patients. (2) Future clinical intervention programs for PD patients need to fully consider specific factors such as gender, severity of disease, specific drug use, and intervention cycle to effectively control heterogeneity factors, so that the clinical exercise intervention program for PD patients is objective, scientific, and effective.

scholarly journals Randomized controlled trial of a home-based palliative approach for people with severe multiple sclerosis

2017 ◽  
Vol 24 (5) ◽  
pp. 663-674 ◽  
Author(s):  
Alessandra Solari ◽  
Andrea Giordano ◽  
Francesco Patti ◽  
Maria Grazia Grasso ◽  
Paolo Confalonieri ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Palliative Care ◽  
Controlled Trial ◽  
Statistical Significance ◽  
Symptom Burden ◽  
Palliative Approach ◽  
Home Based ◽  
Palliative Care Outcome Scale

Background: Evidence on the efficacy of palliative care in persons with severe multiple sclerosis (MS) is scarce. Objective: To assess the efficacy of a home-based palliative approach (HPA) for adults with severe MS and their carers. Methods: Adults with severe MS-carer dyads were assigned (2:1 ratio) to either HPA or usual care (UC). At each center, a multi-professional team delivered the 6-month intervention. A blind examiner assessed dyads at baseline, 3 months, and 6 months. Primary outcome measures were Palliative care Outcome Scale-Symptoms-MS (POS-S-MS) and Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW, not assessed in severely cognitively compromised patients). Results: Of 78 dyads randomized, 76 (50 HPA, 26 UC) were analyzed. Symptom burden (POS-S-MS) significantly reduced in HPA group compared to UC ( p = 0.047). Effect size was 0.20 at 3 months and 0.32 at 6 months, and statistical significance was borderline in per-protocol analysis ( p = 0.062). Changes in SEIQoL-DW index did not differ in the two groups, as changes in secondary patient and carer outcomes. Conclusion: HPA slightly reduced symptoms burden. We found no evidence of HPA efficacy on patient quality of life and on secondary outcomes.

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