Longitudinal, Interdisciplinary Home Visits vs. Usual Care for Homebound People with Advanced Parkinson’s Disease (IN-HOME-PD): Study protocol for a controlled trial (Preprint)

2021 ◽  
Author(s):  
Jori Fleisher ◽  
Serena Hess ◽  
Brianna Sennott ◽  
Erica Myrick ◽  
Ellen Klostermann Wallace ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Controlled Trial ◽  
Home Visits ◽  
Caregiver Strain ◽  
Yahr Stage ◽  
Advanced Parkinson’S Disease ◽  
One Year

BACKGROUND Current understanding of advanced Parkinson’s disease (PD) and its treatment is largely based on data from outpatient visits. The most advanced and disabled individuals become disconnected from both care and research. A previous pilot study among older, multimorbid patients with advanced PD demonstrated the feasibility of interdisciplinary home visits to reach the target population, improve care quality, and potentially avoid institutionalization. OBJECTIVE The following protocol tests whether interdisciplinary home visits can 1) prevent decline in quality of life and 2) prevent worsening caregiver strain. Finally, the protocol explores whether program costs are offset by savings in healthcare use and institutionalization when compared with usual care. METHODS In this single-center, controlled trial, 65 patient-caregiver dyads affected by advanced PD (Hoehn & Yahr stages 3-5 and homebound) are recruited to receive quarterly interdisciplinary home visits over one year. The one-year intervention is delivered by a nurse and research coordinator who travel to the home supported by a movement disorders specialist and social worker (both present by video). Each dyad is compared with age-, sex-, and Hoehn and Yahr stage-matched control dyads drawn from US participants in the longitudinal Parkinson’s Outcome Project registry. The primary outcome measure is change in patient quality of life between baseline and one year. Secondary outcome measures include change in Hoehn & Yahr stage, caregiver strain, self-reported fall frequency, emergency room visits, hospital admissions, and time-to-institutionalization and/or death. Intervention costs and changes in healthcare utilization will be analyzed in a budget impact analysis exploring the potential for model adaptation and dissemination. RESULTS The protocol was funded in September 2017 and approved by the Rush Institutional Review Board in October 2017. Recruitment began in May 2018 and closed in November 2019 with 65 patient-caregiver dyads enrolled. All study visits have been completed and analysis is underway. CONCLUSIONS To our knowledge, this is the first controlled trial to investigate the effects of interdisciplinary home visits among homebound individuals with advanced Parkinson’s disease and their caregivers. This study also establishes a unique cohort of patients from whom we can study the natural course of advanced PD, its treatments, and unmet needs. CLINICALTRIAL Clinicaltrials.gov, NCT03189459.

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 ParkinSong: A Controlled Trial of Singing-Based Therapy for Parkinson’s Disease

2019 ◽  
Vol 33 (6) ◽  
pp. 453-463 ◽  
Author(s):  
Jeanette Tamplin ◽  
Meg E. Morris ◽  
Caterina Marigliani ◽  
Felicity A. Baker ◽  
Adam P. Vogel
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Controlled Trial ◽  
Speech Disorders ◽  
Life Outcomes ◽  
Related Quality ◽  
Vocal Intensity ◽  
Structural Mechanisms

Background. Communication impairment is one of the most common symptoms of Parkinson’s disease (PD), significantly affecting quality of life. Singing shares many of the neural networks and structural mechanisms used during speech and, thus, has potential for therapeutic application to address speech disorders. Objective. To explore the effects of an interdisciplinary singing-based therapeutic intervention (ParkinSong) on voice and communication in people with PD. Methods. A controlled trial compared the effects of the ParkinSong intervention with an active control condition at 2 dosage levels (weekly vs monthly) over 3 months, on voice, speech, respiratory strength, and voice-related quality-of-life outcomes for 75 people living with PD. The interdisciplinary ParkinSong model comprised high-effort vocal and respiratory tasks, speech exercises, group singing, and social communication opportunities. Results. ParkinSong intervention participants demonstrated significant improvements in vocal intensity ( P = .018), maximum expiratory pressure ( P = .032), and voice-related quality of life ( P = .043) in comparison to controls. Weekly ParkinSong participants increased vocal intensity more than monthly participants ( P = .011). Vocal intensity declined in nontreatment control groups. No statistical differences between groups on maximum phonation length or maximum inspiratory pressure were observed at 3 months. Conclusions. ParkinSong is an engaging intervention with the potential to increase loudness and respiratory function in people with mild to moderately severe PD.

Effect of Electroacupuncture on Function and Quality of Life in Parkinson's Disease: A Case Report

2013 ◽  
Vol 31 (2) ◽  
pp. 235-238 ◽  
Author(s):  
Dhananjay Vijay Arankalle ◽  
Pradeep M K Nair
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Activities Of Daily Living ◽  
Daily Living ◽  
Integrative Approach ◽  
Emotional Instability ◽  
Subjective Health Status ◽  
Yahr Stage

A 56-year-old man diagnosed in 2003 as having Hoehn & Yahr stage III Parkinson's disease (PD) came to our clinic in 2012 with slurred speech, right-sided bradykinesia, erectile dysfunction, rigidity, emotional instability and depression. His PD showed progressive signs with postural instability, moderate bilateral signs, and he rated 80% on the Schwab & England Activities of Daily Living Scale. A modified protocol of electroacupuncture was administered for a period of 5 weeks, six times per week, with each session lasting for 30 min. Assessments were based on the Berg Balance Scale (BBS) and Parkinson's Disease Questionnaire-39 (PDQ-39) items, a disease-specific measure of subjective health status. He showed improvement on the BBS, suggesting improved functional status. His quality of life showed improvement particularly on the ‘activities of daily living’, ‘cognition’ and ‘communication’ dimensions of the PDQ-39. Acupuncture treatments in animal experiments have generated valuable mechanistic insights that could be relevant to PD, for example, demonstrating its neuroprotective potential from stimulation of various neuroprotective agents. The literature also suggests acupuncture may play a role in the improvement of motor function and quality of life in PD. Acupuncture is tolerated well by individuals with PD and should be considered as an integrative approach for their symptomatic management.

scholarly journals The Prevalence of Fatigue Following Deep Brain Stimulation Surgery in Parkinson's Disease and Association with Quality of Life

2012 ◽  
Vol 2012 ◽  
pp. 1-5 ◽  
Author(s):  
Benzi M. Kluger ◽  
Veronica Parra ◽  
Charles Jacobson ◽  
Cynthia W. Garvan ◽  
Ramon L. Rodriguez ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Deep Brain Stimulation ◽  
Brain Stimulation ◽  
Neuropsychological Battery ◽  
One Year ◽  
Deep Brain Stimulation Surgery ◽  
Deep Brain

Fatigue is a common and disabling nonmotor symptom seen in Parkinson’s disease (PD). While deep brain stimulation surgery (DBS) improves motor symptoms, it has also been associated with non-motor side effects. To date no study has utilized standardized instruments to evaluate fatigue following DBS surgery. Our objective was to determine the prevalence of fatigue following DBS surgery in PD its impact on quality of life and explore predictive factors. We recruited 44 PD subjects. At least one year following DBS placement, we administered the Fatigue Severity Scale (FSS), the Parkinson’s Disease Questionnaire (PDQ-39), the Beck Depression Inventory, the Beck Anxiety Inventory, the UPDRS, and a neuropsychological battery. Fifty-eight percent of subjects had moderate to severe fatigue. Fatigue was significantly associated with quality of life, depression, and anxiety. Depression preoperatively was the only predictive factor of fatigue. Fatigue is common following DBS surgery and significantly impacts quality of life.

scholarly journals Long-term effectiveness of levodopa-carbidopa intestinal gel on motor and non-motor symptoms in advanced Parkinson’s disease: results of the Italian GLORIA patient population

2020 ◽  
Vol 41 (10) ◽  
pp. 2929-2937 ◽  
Author(s):  
Angelo Antonini ◽  
Pietro Marano ◽  
Graziano Gusmaroli ◽  
Nicola Modugno ◽  
Claudio Pacchetti ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Rating Scale ◽  
Motor Fluctuations ◽  
Motor Symptoms ◽  
Italian Population ◽  
Advanced Parkinson’S Disease ◽  
Non Motor Symptoms

Abstract Introduction The GLORIA registry included 375 advanced Parkinson’s disease (PD) patients and evaluated the efficacy and safety of a 24-month levodopa-carbidopa intestinal gel (LCIG) treatment in routine medical care. This analysis focuses on the Italian population, 60 patients treated with LCIG in 7 specialised PD care centres. Methods Hours of “Off” and “On” time were assessed with a modified version of the Unified Parkinson’s Disease Rating Scale (UPDRS) part IV items 39 and 32. Motor fluctuations, dyskinesia, non-motor symptoms, quality of life and safety were evaluated. Results Overall, 42 (70%) out of 60 patients completed the registry. LCIG treatment reduced “Off” time (− 3.3 ± 2.7 h at month 24 (M24), P < 0.0001), increased “On” time with dyskinesia (− 2.6 ± 5.2 h at M12, P = 0.0160), and improved UPDRS II and UPDRS III total scores at M24 (− 4.5 ± 10.6, P = 0.0333 and − 4.9 ± 11.7, P = 0.0229, respectively), Non-Motor Symptom Scale (NMSS) total score (− 21.8 ± 28.5, P < 0.0001) and Parkinson’s Disease Questionnaire-8 item (PDQ-8) total score (− 12.5 ± 23.9, P = 0.0173) versus previous oral therapy. Adverse drug reactions (ADR) possibly or probably related to treatment were reported in 16 (28.6%) patients. Decreased weight (7.1%), polyneuropathy (7.1%) and abdominal pain (5.4%) were the most frequent ADRs while device malfunction (5.4%) and medical device change (5.4%) were the most reported device complaints. Conclusions LCIG improved motor fluctuations, non-motor symptoms and quality of life over 24 months while tolerability was consistent with the established safety profile.

Treatment of Advanced Parkinson’s Disease

2021 ◽  
pp. 089198872098890
Author(s):  
Rebecca Gilbert ◽  
Pravin Khemani
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Side Effects ◽  
Clinical Experience ◽  
Practical Approach ◽  
Nonmotor Symptoms ◽  
Advanced Parkinson’S Disease

Advanced Parkinson’s disease (PD) often brings a set of motor and non-motor features that are particularly challenging to manage. Medication options can be limited by side-effects and quality of life can be severely affected by an accumulating burden of nonmotor symptoms. Here, we reviewed the literature and our clinical experience with the aim of providing a practical approach to the management of advanced PD. We provide guidelines for treatment of physical and neurobehavioral concerns, that occur in advanced PD.

Personality Related to Quality-of-Life Improvement After Deep Brain Stimulation in Parkinson’s Disease (PSYCHO-STIM II)

2021 ◽  
pp. 1-13
Author(s):  
Mathilde Boussac ◽  
Christophe Arbus ◽  
Helene Klinger ◽  
Alexandre Eusebio ◽  
Elodie Hainque ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Deep Brain Stimulation ◽  
Brain Stimulation ◽  
Linear Regression Models ◽  
Personality Dimensions ◽  
One Year ◽  
Deep Brain

Background: Deep brain stimulation of the sub-thalamic nucleus (DBS-STN) reduces symptoms in Parkinson’s disease (PD) patients with motor fluctuations. However, some patients may not feel ameliorated afterwards, despite an objective motor improvement. It is thus important to find new predictors of patients’ quality of life (QoL) amelioration after DBS-STN. We hypothesized that personality dimensions might affect QoL after DBS-STN. Objective: To evaluate associations between personality dimensions and QoL improvement one year after DBS-STN. Methods: DBS-STN-PD patients (n = 303) having answered the “Temperament and Character Inventory” (TCI) before surgery and the PDQ-39 before and one year after surgery were included, from the cohort study PREDI-STIM. Linear regression models were used to evaluate associations between TCI dimensions and change in PDQ-39 scores after DBS-STN. Results: Novelty Seeking and Cooperativeness scores before surgery were positively associated with PDQ-39 scores improvement after DBS-STN (FDR-adjusted p <  0.01). Moreover, paradoxically unimproved patients with deterioration of their PDQ-39 scores after DBS-STN despite improvement of their MDS-UPDRS-IV scores had lower Cooperativeness scores, while paradoxically improved patients with amelioration of their PDQ-39 scores despite deterioration of their MDS-UPDRS-IV scores had higher Reward Dependence scores. Conclusion: Some presurgical personality dimensions were significantly associated with QoL amelioration and discrepancy between motor state and QoL changes after DBS-STN in PD. Educational programs before DBS-STN should take in account patient personality dimensions to better deal with their expectations.

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