scholarly journals Patients’ Perspective of Comprehensive Parkinson Care in Rural Victoria

2020 ◽  
Vol 2020 ◽  
pp. 1-7
Author(s):  
Robert Iansek ◽  
Mary Danoudis

Introduction. There is a higher prevalence of Parkinson’s disease (PD) in rural Australia and a poorer perceived quality of life of rural Australians with PD. Coordinated multidisciplinary teams specialised and experienced in the treatment of PD are recommended as the preferred model of care best able to manage the complexities of this disorder. There remains a lack of team-based specialised PD services in rural Australia available to people living with PD. This study aims to explore how the lack of specialised PD services impacts on the person’s experiences of the health care they receive in rural Victoria. This study compared the health-care experiences of two different cohorts of people with PD living in rural Victoria; one cohort living in East Gippsland have had an established comprehensive care model implemented with local trained teams and supported by a metropolitan PD centre, and the other cohort was recruited from the remainder of Victoria who had received standard rural care. Methods. This descriptive study used a survey to explore health-care experiences. Questionnaires were mailed to participants living in rural Victoria. Eligibility criteria included having a diagnosis of PD or Parkinsonism and sufficient English to respond to the survey. The validated Patient-Centred Questionnaire for PD was used to measure health-care experiences. The questions are grouped accordingly under one of the 6 subscales or domains. Outcomes from the questionnaire included summary experience scores (SES) for 6 subscales; overall patient-centeredness score (OPS); and quality improvement scores (QIS). Secondary outcomes included health-related quality of life using the disease-specific questionnaire PDQ39; disease severity using the Hoehn and Yahr staging tool; and disability using the Movement Disorders Society-Unified Parkinson’s Disease Rating Scale, part II. Results. Thirty-nine surveys were returned from the East Gippsland group and 68 from the rural group. The East Gippsland group rated significantly more positive the subscales “empathy and PD expertise,” P=0.02, and “continuity and collaboration of professionals,” P=0.01. The groups did not differ significantly for the remaining 4 subscales (P>0.05) nor for the OPS (P=0.17). The QIS showed both groups prioritised the health-care aspect “provision of tailored information” for improvement. Quality of life was greater (P<0.05) and impairment (P=0.012) and disability were less (P=0.002) in the East Gippsland group. Conclusion. Participants who received health care from the East Gippsland program had better key health-care experiences along with better QOL and less impairment and disability. Participants prioritised provision of information as needing further improvement.

2010 ◽  
Vol 4 (2) ◽  
pp. 131-137 ◽  
Author(s):  
Glória Maria Almeida Souza Tedrus ◽  
Lineu Correa Fonseca ◽  
Patrícia Mencaroni Kange

Abstract Parkinson's disease (PD) is a chronic disease manifested principally by motor signs and symptoms, but with frequent neuropsychological alterations. Objectives: To study the relationship between clinical and cognitive aspects and the perception of quality of life (QOL) in PD patients. Methods: Twenty consecutive patients (13 men) with idiopathic PD (mean age: 64.5y), mean disease time of 7.8 years and at stages 1-3 according to the modified Hoehn and Yahr staging scale (HYS), all outpatients from the Neurology Department of the Celso Pierro General and Maternity Hospital (PUC-Campinas), were analyzed. The following were applied: a clinical-neurological assessment, the Mini-Mental State Examination (MMSE), standard neuropsychological battery of the CERAD (Consortium to Establish a Registry for Alzheimer's Disease), Hamilton Depression Rating Scale (HAM-D) and a QOL questionnaire (Parkinson's Disease Questionnaire - PDQ-39). Statistical analysis was carried out at a significance level of p<0.05. Results: On the PDQ-39 under the sections total, mobility and activities of daily living, and the items motor compromise (HYS) and language of the MMSE were predictors of worse QOL. Verbal fluency was a factor for emotional well-being on the PDQ-39, whereas higher scores for HAM-D and worse performance on the item attention and calculation of the MMSE were associated with worse QOL in the social support section. Total score on the MMSE and educational level were QOL factors in cognition Conclusions: The findings of the present study suggest that clinical, cognitive, motor or other depression-related factors contribute differently to the domains of QOL.


2018 ◽  
Vol 128 (1) ◽  
pp. 202-210 ◽  
Author(s):  
Menashe Zaaroor ◽  
Alon Sinai ◽  
Dorith Goldsher ◽  
Ayelet Eran ◽  
Maria Nassar ◽  
...  

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.


2020 ◽  
Vol 41 (10) ◽  
pp. 2929-2937 ◽  
Author(s):  
Angelo Antonini ◽  
Pietro Marano ◽  
Graziano Gusmaroli ◽  
Nicola Modugno ◽  
Claudio Pacchetti ◽  
...  

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.


2016 ◽  
Vol 2016 ◽  
pp. 1-13 ◽  
Author(s):  
Nadeeka N. W. Dissanayaka ◽  
Farah Idu Jion ◽  
Nancy A. Pachana ◽  
John D. O’Sullivan ◽  
Rodney Marsh ◽  
...  

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.


Author(s):  
Francesca Morgante ◽  
Valentina Oppo ◽  
Margherita Fabbri ◽  
Enrica Olivola ◽  
Chiara Sorbera ◽  
...  

Abstract Objectives Levodopa–Carbidopa Intrajejunal gel (LCIG) infusion is an effective intervention for people with advanced Parkinson’s disease (PD). Although age may not be a limiting factor for LCIG implant, no data are available on late elderly PD (LE-PD) subjects. In this cross-sectional, we aimed to demonstrate if older age may impact on quality of life (QoL), motor and non-motor symptoms severity, and profile of side effects in PD treated with LCIG. Methods Out of 512 PD subjects treated with LCIG at 9 Italian PD centers, we selected 25 LE-PD defined as age ≥ 80 years at last follow-up who were available to attend the study visit. Twenty-five PD patients (Control-PD, defined as age < 75 years at last follow-up) matched to LE-PD by disease and LCIG duration served as control group. The following motor and non-motor variables were ascertained: quality of life (PDQ-8), time spent in ON, wearing-off Questionnaire, Unified PD Rating Scale, freezing of gait questionnaire, Parkinson’s disease sleep scale-2, Non Motor Symptoms Scale (NMSS), and MOCA. Results No statistically significant differences were found between LE-PD and Control-PD on PDQ-8 and several motor and non-motor variables. LE-PD had less frequent and milder impulsive–compulsive behaviors and milder dyskinesia. At multivariable regression, worse quality of life was associated with UPDRS-III and NMSS scores but not to age at study visit and age at LICG implant. Rate of adverse effects was similar in both groups. Drop-out rate calculated in the whole PD cohort was comparable between the two groups. Conclusion Our data provide evidence that valuable LCIG infusion might be achieved in late elderly PD.


2021 ◽  
Vol 11 ◽  
Author(s):  
Teresa Maycas-Cepeda ◽  
Pedro López-Ruiz ◽  
Cici Feliz-Feliz ◽  
Lidia Gómez-Vicente ◽  
Rocío García-Cobos ◽  
...  

Introduction: Amimia is one of the most typical features of Parkinson's disease (PD). However, its significance and correlation with motor and nonmotor symptoms is unknown. The aim of this study is to evaluate the association between amimia and motor and nonmotor symptoms, including cognitive status, depression, and quality of life in PD patients. We also tested the blink rate as a potential tool for objectively measuring upper facial bradykinesia.Methods: We prospectively studied amimia in PD patients. Clinical evaluation was performed using the Unified Parkinson's Disease Rating Scale (UPDRS) and timed tests. Cognitive status, depression, and quality of life were assessed using the Parkinson's Disease Cognitive Rating Scale (PD-CRS), the 16-Item Quick Inventory of Depressive Symptomatology (QIDS-SR16), and the PDQ-39, respectively. Amimia was clinically evaluated according to item 19 of UPDRS III. Finally, we studied upper facial amimia by measuring resting blink frequency and blink rate during spontaneous conversation.Results: We included 75 patients. Amimia (item 19 UPDRS III) correlated with motor and total UPDRS (r: 0.529 and 0.551 Spearman), and its rigidity, distal bradykinesia, and motor axial subscores (r: 0.472; r: 0.252, and r: 0.508, respectively); Hoehn and Yahr scale (r: 0.392), timed tests, gait freezing, cognitive status (r: 0.29), and quality of life (r: 0.268) correlated with amimia. Blinking frequency correlated with amimia (measured with item 19 UPDRS), motor and total UPDRS.Conclusion: Amimia correlates with motor (especially axial symptoms) and cognitive situations in PD. Amimia could be a useful global marker of overall disease severity, including cognitive decline.


2021 ◽  
Vol 79 (8) ◽  
pp. 686-691
Author(s):  
Ingrid Estrada-Bellmann ◽  
Jesús Daniel Meléndez-Flores ◽  
Carlos Rodrigo Cámara-Lemarroy ◽  
Sergio Andrés Castillo-Torres

ABSTRACT Background: Self-efficacy is the individual’s assessment of his or hers ability to complete a specific task successfully and has been closely related to self-management and quality of life in several diseases. Objective: To investigate self-efficacy in a population of Parkinson’s disease (PD) patients in Mexico and study the factors that are associated with this measure. Methods: We carried out a cross-sectional observational study involving patients with PD in an outpatient neurology clinic in Mexico, using the following instruments: Spanish version of the Chronic Disease Self-Efficacy Scale (CDSES), Quality of Life Questionnaire PDQ-8, Movement Disorders Society-Unified Parkinson's disease Rating Scale (MDS-UPDRS), Montreal Cognitive Assessment (MoCA), and Non-Motor Symptom Scale (NMSS). Clinical and demographic variables were also recorded. Results: We included 73 patients with a mean age of 65 years and most patients were male. Patients with lower CDSES scores (<7.75) had worse scores in MDS-UPDRS, NMSS, and PDQ-8 scales. CDSES scores were significantly correlated with MDS-UPDRS Part I (r=-0.497, p=<0.001), Part II (r= -0.271, p=0.020), Part III (r=-0.304, p=<0.001), PDQ-8 (r=-0.472, p=<0.001), and NMSS (r=-0.504, p=<0.001). Furthermore, when assessing the simultaneous effect of covariates associated with CDSES score, only Mood/Apathy domain of NMSS was significant (beta= -0.446, t= -3.807, p= 0.012). Conclusions: PD patients with lower self-efficacy scores had worse motor and non-motor symptomatology and quality of life. Mood/Apathy disorders were negatively associated with self-efficacy and contributed significantly to this measure.


Neurosurgery ◽  
2017 ◽  
Vol 64 (CN_suppl_1) ◽  
pp. 259-259
Author(s):  
Tsinsue Chen ◽  
Zaman Mirzadeh ◽  
Kristina Chapple ◽  
Margaret Lambert ◽  
Holly Shill ◽  
...  

Abstract INTRODUCTION Recent studies show similar clinical outcomes in Parkinson's disease (PD) patients treated by deep brain stimulation (DBS) under general anesthesia without microelectrode recording (MER), so-called “asleep” DBS, compared to historical cohorts undergoing “awake” DBS with MER guidance. Very few studies, however, include internal controls. This study compares clinical outcomes following globus pallidus interna (GPi) and subthalamic nucleus (STN) DBS using awake and asleep techniques at a single institution. METHODS PD patients undergoing awake or asleep bilateral GPi or STN DBS were prospectively followed. The primary outcome measure was stimulation-induced change in motor function 6 months postoperatively, measured by the Unified Parkinson's Disease Rating Scale part III (UPDRS-III) with the patient off medication. Secondary outcomes included change in quality of life, measured by the 39-item Parkinson's Disease Questionnaire (PDQ-39), change in levodopa daily equivalent dose (LEDD), stereotactic accuracy, stimulation parameters, and adverse events. RESULTS >Six-month outcome data were available for 133 patients treated over 45 months (78 GPi [16 awake, 62 asleep] and 55 STN [14 awake and 41 asleep]). UPDRS-III score improvement with stimulation did not differ between awake and asleep groups for GPi (awake = 20.8 points [38.5%], asleeP = 18.8 points [37.5%], P = 0.45) or STN (awake = 21.6 points [40.3%], asleeP = 26.1 points [48.8%], P = 0.20) targets. The percentage improvement in PDQ-39 and LEDD was similar for awake and asleep groups for both GPi (P = 0.80, P = 0.54, respectively) and STN cohorts (P = 0.85, P = 0.49, respectively). CONCLUSION In PD patients, bilateral GPi and STN DBS utilizing the asleep method resulted in motor, quality-of-life, and medication reduction outcomes comparable to the awake method.


2011 ◽  
Vol 2011 ◽  
pp. 1-5 ◽  
Author(s):  
Erica R. Appleman ◽  
Karina Stavitsky ◽  
Alice Cronin-Golomb

Parkinson's disease (PD) presents with extensive heterogeneity in symptomatology, inviting examination of disease subtypes. One significant categorization is by whether patients present at onset with tremor as the dominant symptom (TD) or with nontremor symptoms (NTD). We examined differences in quality of life between TD and NTD patients using the Parkinson's Disease Questionnaire-39 (PDQ-39), correlating performance with aspects of motor function as indexed by the Unified Parkinson's Disease Rating Scale (UPDRS). Participants included 35 nondemented individuals (19 TD, 16 NTD) matched on clinical and demographic characteristics. NTD had significantly lower overall PDQ-39 scores, particularly for the mobility subscale. Several UPDRS subscale scores significantly correlated with quality of life, especially for NTD. Further, the correlations were driven by nontremor type symptoms, even in TD patients. Determining reliable subtypes of PD may aid in prognosis and treatment optimization, thereby enhancing quality of life in afflicted individuals.


Sign in / Sign up

Export Citation Format

Share Document