scholarly journals Baduanjin Qigong Intervention by Telerehabilitation (TeleParkinson): A Proof-of-Concept Study in Parkinson’s Disease

2021 ◽  
Vol 18 (13) ◽  
pp. 6990
Author(s):  
Livia P. Carvalho ◽  
Simon Décary ◽  
Isabelle Beaulieu-Boire ◽  
Rosalie Dostie ◽  
Isabelle Lalonde ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Patient Satisfaction ◽  
Adverse Events ◽  
Proof Of Concept ◽  
Concept Study ◽  
Supervised Exercise ◽  
Patient Reported

Many people living with Parkinson’s Disease (PD) face issues with healthcare services, including delays in diagnosis and treatment, as well as limited access to specialized care, including rehabilitation programs. Non-motor and motor signs and symptoms typically observed in people with PD, such as tremor, rigidity, postural instability, bradykinesia, and freezing are particularly disabling and have been associated with falls, fractures, hospitalizations, and a worse quality of life. Baduanjin Qigong (BDJ) programs have been proven potentially effective in improving physical outcomes and reducing the incidence of falls in PD. The aim of this case report, proof-of-concept, study was to explore the adherence, feasibility, acceptability, and potential efficacy of a BDJ program offered via telerehabilitation in people with PD living in the community. Two participants performed semi-supervised exercise sessions at home, twice a week (over eight weeks) using the TeraPlus platform. Adherence, adverse events, and feasibility (technical implementability), acceptability (patient satisfaction), patient-reported, self-reported, and performance outcomes were measured. Results were based on single-subject descriptive data, minimal detectable change, and anchor-based minimally important difference. Our findings suggest that the intervention seems feasible with no major technical issues or adverse events, and high adherence; acceptable (patient satisfaction); and potentially effective to improve markers of walking performance (gait speed, balance), and quality of life (activities of daily living, mobility).

scholarly journals Synergy of pandemics-social isolation is associated with worsened Parkinson severity and quality of life

2020 ◽  
Vol 6 (1) ◽  
Author(s):  
Indu Subramanian ◽  
Joshua Farahnik ◽  
Laurie K. Mischley
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Social Isolation ◽  
Support Groups ◽  
Symptom Severity ◽  
Social Performance ◽  
Social Distancing ◽  
Patient Reported

Abstract Social isolation and its deleterious effects on health increases with age in the general population. People with Parkinson’s Disease (PWP) are no exception. Social isolation is a risk factor for worsened health outcomes and increased mortality. Symptoms such as depression and sleep dysfunction are adversely affected by loneliness. There is a paucity of research on social isolation in Parkinson’s disease (PD), which is all the more critical now in the setting of social distancing due to COVID-19. The goal of this study was to survey individuals with PD to evaluate whether social isolation is associated with PD symptom severity and quality of life. Only individuals reporting a diagnosis of idiopathic PD were included in this analysis. The primary outcome measures were the Patient-Reported Outcomes in PD (PRO-PD) and questions from PROMIS Global related to social health. PRO-PD scores increased as social performance and social satisfaction scores diminished. Individuals who reported being lonely experienced a 55% greater symptom severity than those who were not lonely (P < 0.01). Individuals who documented having a lot of friends had 21% fewer symptoms than those with few or no friends (P < 0.01). Social isolation was associated with greater patient-reported PD severity and lower quality of life, although it is unclear whether this is the cause and/or a consequence of the disease. In essence, the Parkinson pandemic and the pandemic of social isolation have been further compounded by the recent COVID-19 pandemic. The results emphasize the need to keep PWP socially connected and prevent loneliness in this time of social distancing. Proactive use of virtual modalities for support groups and social prescribing should be explored.

Magnetic resonance–guided focused ultrasound thalamotomy for tremor: a report of 30 Parkinson's disease and essential tremor cases

2018 ◽  
Vol 128 (1) ◽  
pp. 202-210 ◽  
Author(s):  
Menashe Zaaroor ◽  
Alon Sinai ◽  
Dorith Goldsher ◽  
Ayelet Eran ◽  
Maria Nassar ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Adverse Events ◽  
Essential Tremor ◽  
Focused Ultrasound ◽  
Rating Scale ◽  
Innovative Technology ◽  
The Mean

OBJECTIVEThalamotomy of the ventral intermediate nucleus (VIM) is effective in alleviating medication-resistant tremor in patients with essential tremor (ET) and Parkinson's disease (PD). MR-guided focused ultrasound (MRgFUS) is an innovative technology that enables noninvasive thalamotomy via thermal ablation.METHODSPatients with severe medication-resistant tremor underwent unilateral VIM thalamotomy using MRgFUS. Effects on tremor were evaluated using the Clinical Rating Scale for Tremor (CRST) in patients with ET and by the motor part of the Unified Parkinson's Disease Rating Scale (UPDRS) in patients with PD and ET-PD (defined as patients with ET who developed PD many years later). Quality of life in ET was measured by the Quality of Life in Essential Tremor (QUEST) questionnaire and in PD by the PD Questionnaire (PDQ-39).RESULTSThirty patients underwent MRgFUS, including 18 with ET, 9 with PD, and 3 with ET-PD. The mean age of the study population was 68.9 ± 8.3 years (range 46–87 years) with a mean disease duration of 12.1 ± 8.9 years (range 2–30 years). MRgFUS created a lesion at the planned target in all patients, resulting in cessation of tremor in the treated hand immediately following treatment. At 1 month posttreatment, the mean CRST score of the patients with ET decreased from 40.7 ± 11.6 to 9.3 ± 7.1 (p < 0.001) and was 8.2 ± 5.0 six months after treatment (p < 0.001, compared with baseline). Average QUEST scores decreased from 44.8 ± 12.9 to 13.1 ± 13.2 (p < 0.001) and was 12.3 ± 7.2 six months after treatment (p < 0.001). In patients with PD, the mean score of the motor part of the UPDRS decreased from 24.9 ± 8.0 to 16.4 ± 11.1 (p = 0.042) at 1 month and was 13.4 ± 9.2 six months after treatment (p = 0.009, compared with baseline). The mean PDQ-39 score decreased from 38.6 ± 16.8 to 26.1 ± 7.2 (p = 0.036) and was 20.6 ± 8.8 six months after treatment (p = 0.008). During follow-up of 6–24 months (mean 11.5 ± 7.2 months, median 12.0 months), tremor reappeared in 6 of the patients (2 with ET, 2 with PD, and 2 with ET-PD), to a lesser degree than before the procedure in 5. Adverse events that transiently occurred during sonication included headache (n = 11), short-lasting vertigo (n = 14) and dizziness (n = 4), nausea (n = 3), burning scalp sensation (n = 3), vomiting (n = 2) and lip paresthesia (n = 2). Adverse events that lasted after the procedure included gait ataxia (n = 5), unsteady feeling (n = 4), taste disturbances (n = 4), asthenia (n = 4), and hand ataxia (n = 3). No adverse event lasted beyond 3 months. Patients underwent on average 21.0 ± 6.9 sonications (range 14–45 sonications) with an average maximal sonication time of 16.0 ± 3.0 seconds (range 13–24 seconds). The mean maximal energy reached was 12,500 ± 4274 J (range 5850–23,040 J) with a mean maximal temperature of 56.5° ± 2.2°C (range 55°–60°C).CONCLUSIONSMRgFUS VIM thalamotomy to relieve medication-resistant tremor was safe and effective in patients with ET, PD, and ET-PD. Current results emphasize the superior adverse events profile of MRgFUS over other surgical approaches for treating tremor with similar efficacy. Large randomized studies are needed to assess prolonged efficacy and safety.

Comparison of Patient-Reported and Caregiver-Reported Swallowing-Related Quality of Life in Parkinson’s Disease

Dysphagia ◽  
2021 ◽  
Author(s):  
Allie S. Zimmerman ◽  
Samantha Shune ◽  
Kimberly G. Smith ◽  
Julie M. Estis ◽  
Kendrea L. Garand
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Patient Reported ◽  
Related Quality

scholarly journals Effectiveness of Telerehabilitation on Motor Impairments, Non-motor Symptoms and Compliance in Patients With Parkinson's Disease: A Systematic Review

2021 ◽  
Vol 12 ◽  
Author(s):  
Chiara Vellata ◽  
Stefano Belli ◽  
Francesca Balsamo ◽  
Andrea Giordano ◽  
Roberto Colombo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Patient Satisfaction ◽  
Cochrane Library ◽  
Clinical Aspects ◽  
Motor Symptoms ◽  
Non Motor Symptoms

Introduction: Parkinson's disease (PD) is a chronic neurodegenerative disease involving a progressive alteration of the motor and non-motor function. PD influences the patient's daily living and reduces participation and quality of life in all phases of the disease. Early physical exercise can mitigate the effects of symptoms but access to specialist care is difficult. With current technological progress, telemedicine, and telerehabilitation is now a viable option for managing patients, although few studies have investigated the use of telerehabilitation in PD. In this systematic review, was investigated whether telerehabilitation leads to improvements in global or specific motor tasks (gait and balance, hand function) and non-motor dysfunction (motor speech disorder, dysphagia). The impact of TR on quality of life and patient satisfaction, were also assessed. The usage of telerehabilitation technologies in the management of cognitive impairment was not addressed.Method: An electronic database search was performed using the following databases: PubMed/MEDLINE, COCHRANE Library, PEDro, and SCOPUS for data published between January 2005 and December 2019 on the effects of telerehabilitation systems in managing motor and non-motor symptoms. This systematic review was conducted in accordance with the PRISMA guideline and was registered in the PROSPERO database (CRD42020141300).Results: A total of 15 articles involving 421 patients affected by PD were analyzed. The articles were divided into two categories based on their topic of interest or outcome. The first category consisted of the effects of telerehabilitation on gait and balance (3), dexterity of the upper limbs (3), and bradykinesia (0); the second category regarded non-motor symptoms such as speech disorders (8) and dysphagia (0). Quality of life (7) and patient satisfaction (8) following telerehabilitation programs were also analyzed, as well as feasibility and costs.Conclusion: Telerehabilitation is feasible in people affected by PD. Our analysis of the available data highlighted that telerehabilitation systems are effective in maintaining and/or improving some clinical and non-clinical aspects of PD (balance and gait, speech and voice, quality of life, patient satisfaction).Systematic Review Registration:https://www.crd.york.ac.uk/prospero/, identifier: CRD42020141300.

Quality of Life in Parkinson’s Disease – Patient, Clinical and Research Perspectives

2014 ◽  
Vol 9 (1) ◽  
pp. 12 ◽  
Author(s):  
Fabrizio Stocchi ◽  
Pablo Martínez Martin ◽  
Heinz Reichmann ◽  
◽  
◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Short Form ◽  
Disease Patient ◽  
Motor Symptoms ◽  
Research Perspectives ◽  
Patient Reported ◽  
Non Motor Symptoms

Parkinson’s disease (PD) has a severely negative impact on the quality of life (QoL) of patients and their caregivers. Health-related QoL (HRQoL) is a patient-reported component of QoL that includes physical, mental and social domains and in PD is an increasingly important part of patient monitoring. HRQoL in PD is assessed using a range of different generic (e.g. Short Form-36) and PD-specific (e.g. 39-item Parkinson’s Disease Questionnaire) instruments/questionnaires. It is important that HRQoL is regularly determined in patients with PD to identify determinants of their HRQoL deterioration and appropriately manage them. The perspectives of PD patients, clinicians and researchers, however, can be different. In PD, motor symptoms such as slowness or tremor are the most visible manifestations of the disease and these tend to be concentrated on by doctors. PD patients, however, are likely to also have a range of non-motor symptoms such as nocturia, urinary frequency, fatigue, drooling and forgetfulness, which can be more troubling than motor symptoms. These can increase distress and social isolation but are often unreported or overlooked. In addition, morning akinesia and wearing-off phenomena may cause additional difficulty. However, these symptoms and patient concerns can be readily identified using simple HRQoL measures. The management of PD should therefore take into account patient, clinical and research perspectives of HRQoL in order to recognise and adequately address the consequences of motor and non-motor symptoms in PD.

scholarly journals Validation of an Individualized Measure of Quality of Life, Patient Generated Index, for Use with People with Parkinson’s Disease

2020 ◽  
Vol 2020 ◽  
pp. 1-8
Author(s):  
Ayse Kuspinar ◽  
Kedar K. V. Mate ◽  
Anne-Louise Lafontaine ◽  
Nancy Mayo
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Outcome Measures ◽  
Patient Reported Outcome ◽  
Predictive Values ◽  
Severity Rating ◽  
Patient Generated Index ◽  
Patient Reported

Introduction. Parkinson’s disease (PD) affects all aspects of an individual’s life and is heterogeneous across people and time. The Patient Generated Index (PGI) is an individualized measure of quality of life (QOL) that allows patients to identify the areas of life that are important to them. Although the PGI has immense potential for use in clinical and research settings, its validity has not been assessed in PD. The purpose of this study is to estimate how well areas of QOL that patients with PD nominate on the PGI agree with ratings obtained from standard outcome measures. Methods. Patients with PD completed the PGI and various standard patient-reported outcome (PRO) measures. The PGI and standard PRO measures were compared at the total score, domain, and item levels. Pearson’s correlations and independent t-tests were used, as well as positive and negative predictive values. Results. The sample (n = 76) had a mean age of 69 (standard deviation 9) and were predominantly men (59%). The PGI was moderately correlated (r = −0.35) with the standardized disease-specific QOL measure Parkinson’s Disease Questionnaire (PDQ-8). Within one severity rating, agreement between the PGI and different standard outcome measures ranged from 85 to 100% for walking, 69 to 100% for fatigue, 38 to 75% for depression, and 20 to 80% for memory/concentration. Conclusion. This study demonstrates that nominated areas of QOL on the PGI provide comparable results to standard PRO measures, and provides evidence in support of the validity of this individualized measure in PD.

scholarly journals Clinical effectiveness and cost-effectiveness of physiotherapy and occupational therapy versus no therapy in mild to moderate Parkinson’s disease: a large pragmatic randomised controlled trial (PD REHAB)

2016 ◽  
Vol 20 (63) ◽  
pp. 1-96 ◽  
Author(s):  
Carl E Clarke ◽  
Smitaa Patel ◽  
Natalie Ives ◽  
Caroline E Rick ◽  
Rebecca Woolley ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Cost Effectiveness ◽  
Adverse Events ◽  
Controlled Trial ◽  
Clinical Effectiveness ◽  
Randomised Controlled ◽  
The Uk

BackgroundCochrane reviews of physiotherapy (PT) and occupational therapy (OT) for Parkinson’s disease found insufficient evidence of effectiveness, but previous trials were methodologically flawed with small sample size and short-term follow-up.ObjectivesTo evaluate the clinical effectiveness and cost-effectiveness of individualised PT and OT in Parkinson’s disease.DesignLarge pragmatic randomised controlled trial.SettingThirty-eight neurology and geriatric medicine outpatient clinics in the UK.ParticipantsSeven hundred and sixty-two patients with mild to moderate Parkinson’s disease reporting limitations in activities of daily living (ADL).InterventionPatients were randomised online to either both PT and OT NHS services (n = 381) or no therapy (n = 381). Therapy incorporated a patient-centred approach with individual assessment and goal setting.Main outcome measuresThe primary outcome was instrumental ADL measured by the patient-completed Nottingham Extended Activities of Daily Living (NEADL) scale at 3 months after randomisation. Secondary outcomes were health-related quality of life [Parkinson’s Disease Questionnaire-39 (PDQ-39); European Quality of Life-5 Dimensions (EQ-5D)], adverse events, resource use and carer quality of life (Short Form questionnaire-12 items). Outcomes were assessed before randomisation and at 3, 9 and 15 months after randomisation.ResultsData from 92% of the participants in each group were available at the primary time point of 3 months, but there was no difference in NEADL total score [difference 0.5 points, 95% confidence interval (CI) –0.7 to 1.7;p = 0.4] or PDQ-39 summary index (0.007 points, 95% CI –1.5 to 1.5;p = 1.0) between groups. The EQ-5D quotient was of borderline significance in favour of therapy (–0.03, 95% CI –0.07 to –0.002;p = 0.04). Contact time with therapists was for a median of four visits of 58 minutes each over 8 weeks (mean dose 232 minutes). Repeated measures analysis including all time points showed no difference in NEADL total score, but PDQ-39 summary index (curves diverging at 1.6 points per annum, 95% CI 0.47 to 2.62;p = 0.005) and EQ-5D quotient (0.02, 95% CI 0.00007 to 0.03;p = 0.04) showed significant but small differences in favour of the therapy arm. Cost-effective analysis showed that therapy was associated with a slight but not significant gain in quality-adjusted life-years (0.027, 95% CI –0.010 to 0.065) at a small incremental cost (£164, 95% CI –£141 to £468), resulting in an incremental cost-effectiveness ratio of under £4000 (£3493, 95% –£169,371 to £176,358). There was no difference in adverse events or serious adverse events.ConclusionsNHS PT and OT did not produce immediate or long-term clinically meaningful improvements in ADL or quality of life in patients with mild to moderate Parkinson’s disease. This evidence does not support the use of low-dose, patient-centred, goal-directed PT and OT in patients in the early stages of Parkinson’s disease. Future research should include the development and testing of more structured and intensive PT and OT programmes in patients with all stages of Parkinson’s disease.Trial registrationCurrent Controlled Trials ISRCTN17452402.FundingThis project was funded by the NIHR Health Technology Assessment programme and will be published in full inHealth Technology Assessment; Vol. 20, No. 63. See the NIHR Journals Library website for further project information. The Birmingham Clinical Trials Unit, University of Birmingham, received support from the UK Department of Health up to March 2012. Catherine Sackley was supported by a NIHR senior investigator award, Collaboration for Leadership in Applied Health Research and Care East of England and West Midlands Strategic Health Authority Clinical Academic Training award.

Occupational therapy outcomes in patients with Parkinson's disease

2019 ◽  
Vol 30 (10) ◽  
pp. 477-481
Author(s):  
Amelia Jackson
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Occupational Therapy ◽  
Treatment Outcomes ◽  
Treatment Approach ◽  
Direct Care ◽  
Practice Nurses ◽  
Patient Reported

People living with this degenerative condition can benefit greatly from occupation therapy, explains Amelia Jackson. This therapy needs to be embedded in the treatment approach for all patients living with this condition, and practice nurses are well placed to direct careThis article considers whether occupational therapy can improve the treatment experience and quality of life for patients living with Parkinson's disease. It also discusses whether occupational therapy has a direct correlation with improved treatment outcomes. This article will examine how this treatment should be provided and what treatment provision is available. Published literature was used to gain evidence and the findings were that integrated occupational therapy can improve both quality of life and treatment outcomes with this patient population. This article emphasises the need for occupational therapy to be embedded in the treatment approach to address non-motor symptoms which have the greatest impact on patient-reported reduced quality of life.

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