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1.
J Parkinsons Dis ; 14(1): 135-166, 2024.
Article in English | MEDLINE | ID: mdl-38277303

ABSTRACT

BACKGROUND: Parkinson's disease (PD) is a complex neurodegenerative disorder impacting everyday function and quality of life. Rehabilitation plays a crucial role in improving symptoms, function, and quality of life and reducing disability, particularly given the lack of disease-modifying agents and limitations of medications and surgical therapies. However, rehabilitative care is under-recognized and under-utilized in PD and often only utilized in later disease stages, despite research and guidelines demonstrating its positive effects. Currently, there is a lack of consensus regarding fundamental topics related to rehabilitative services in PD. OBJECTIVE: The goal of the international Parkinson's Foundation Rehabilitation Medicine Task Force was to develop a consensus statement regarding the incorporation of rehabilitation in PD care. METHODS: The Task Force, comprised of international multidisciplinary experts in PD and rehabilitation and people directly affected by PD, met virtually to discuss topics such as rehabilitative services, existing therapy guidelines and rehabilitation literature in PD, and gaps and needs. A systematic, interactive, and iterative process was used to develop consensus-based statements on core components of PD rehabilitation and discipline-specific interventions. RESULTS: The expert-based consensus statement outlines key tenets of rehabilitative care including its multidisciplinary approach and discipline-specific guidance for occupational therapy, physical therapy, speech language pathology/therapy, and psychology/neuropsychology across all PD stages. CONCLUSIONS: Rehabilitative interventions should be an essential component in the comprehensive treatment of PD, from diagnosis to advanced disease. Greater education and awareness of the benefits of rehabilitative services for people with PD and their care partners, and further evidence-based and scientific study are encouraged.


Subject(s)
Disabled Persons , Occupational Therapy , Parkinson Disease , Humans , Quality of Life , Speech Therapy
2.
Article in English | MEDLINE | ID: mdl-38083474

ABSTRACT

Non-invasive coordinated reset stimulation (CRS) to the hands has been shown to improve motor ability in Parkinson's patients, but not specific for gait disturbances. The overall aim of the project is the application of vibrotactile CRS to the feet to improve gait impairments in Parkinson's disease. As a first step towards this objective, we showed that vibrotactile stimulation to the feet can elicit a cortical response and have identified differences in younger and older individuals. Our findings suggest the potential for non-invasive peripheral stimulation as a therapeutic technique.Clinical Relevance- This is an important step towards developing a non-invasive stimulation technique for the management of gait disturbances in Parkinson's disease.


Subject(s)
Deep Brain Stimulation , Parkinson Disease , Humans , Parkinson Disease/complications , Parkinson Disease/therapy , Gait/physiology , Foot
3.
BMC Geriatr ; 23(1): 430, 2023 07 12.
Article in English | MEDLINE | ID: mdl-37438688

ABSTRACT

BACKGROUND: Little is known about the health care experiences of people with Parkinson's disease (PwP) living in Australia. Exploring health care experiences can provide insight into service gaps which can then help direct quality improvement, such as improving communication between patients and health professionals. METHODS: This study aimed to examine the health care experiences of a sample of PwP living in Australia using the Patient-Centered Questionnaire for Parkinson's disease (PCQ-PD). Participants were recruited from four sources located in Victoria, Australia: (1) a metropolitan Movement Disorders Program (Group 1); (2) metropolitan based movement disorder neurologists working as sole practitioners and not within multidisciplinary teams (Group 2); (3) a regional based multidisciplinary PD program (Group 3); and (4) PD support groups in regional and rural Victorian towns without PD specialist programs (Group 4). Scores derived from the PCQ-PD included the overall patient-centered score (OPS), six sub-scale experience scores (SES) and the quality improvement scores (QIS). Health care experiences were compared between Groups 1, 2, 3 and 4 and multivariate linear regression models were used to explore factors contributing to patient-centeredness. RESULTS: 227 participants reported a mean (SD) OPS score of 1.8 (SD 0.5) with no significant differences between groups. The rating for the Tailored Information subscale was low, (mean 1.3, SD 0.5), with Group 2 having a significantly lower score, 1.1 (SD 0.5), compared to Group 1, 1.4 (SD 0.5) (p = 0.048). Experiences of Continuity of Care and Collaboration of Professionals were rated significantly lower by Group 2, 1.3 (SD 1.0) compared to Groups 1, 1.8 (SD 0.9) (p = 0.018) and 3, 2.1 (SD 0.8) (p = 0.002). Care aspects related to the Tailored Information subscale were prioritised for improvement by all groups. The main predictors of positive health care experiences were disease duration (coeff 0.02; 95% CI 0.00, 0.04) and living with another person (coeff 0.27: 95% CI 0.03, 0.51). CONCLUSION: This sample of participants with PD had poor experiences of several aspects of care known to be important in the provision of quality PD care. They prioritised the improvement of personalised health care information and better continuity of care and collaboration between health professionals.


Subject(s)
Parkinson Disease , Patient-Centered Care , Professional-Patient Relations , Quality of Health Care , Humans , Communication , Health Facilities , Health Personnel , Parkinson Disease/diagnosis , Parkinson Disease/epidemiology , Parkinson Disease/therapy , Victoria/epidemiology , Australia/epidemiology
4.
J Parkinsons Dis ; 13(5): 769-783, 2023.
Article in English | MEDLINE | ID: mdl-37302039

ABSTRACT

BACKGROUND: Levodopa-carbidopa intestinal gel (LCIG) improves motor and non-motor symptoms in patients with advanced Parkinson's disease (aPD). OBJECTIVE: To present the final 36-month efficacy and safety results from DUOGLOBE (DUOdopa/Duopa in Patients with Advanced Parkinson's Disease - a GLobal OBservational Study Evaluating Long-Term Effectiveness; NCT02611713). METHODS: DUOGLOBE was an international, prospective, long-term, real-world, observational study of patients with aPD initiating LCIG in routine clinical care. The primary endpoint was change in patient-reported "Off" time to Month 36. Safety was assessed by monitoring serious adverse events (SAEs). RESULTS: Significant improvements in "Off" time were maintained over 3 years (mean [SD]: -3.3 hours [3.7]; p < 0.001). There were significant improvements to Month 36 in total scores of the Unified Dyskinesia Rating Scale (-5.9 [23.7]; p = 0.044), Non-Motor Symptoms Scale (-14.3 [40.5]; p = 0.002), Parkinson's Disease Sleep Scale-2 (-5.8 [12.9]; p < 0.001), and Epworth Sleepiness Scale (-1.8 [6.0]; p = 0.008). Health-related quality of life and caregiver burden significantly improved through Months 24 and 30, respectively (Month 24, 8-item Parkinson's Disease Questionnaire Summary Index, -6.0 [22.5]; p = 0.006; Month 30, Modified Caregiver Strain Index, -2.3 [7.6]; p = 0.026). Safety was consistent with the well-established LCIG profile (SAEs: 54.9% of patients; discontinuations: 54.4%; discontinuations due to an adverse event: 27.2%). Of 106 study discontinuations, 32 patients (30.2%) continued LCIG outside the study. CONCLUSION: DUOGLOBE demonstrates real-world, long-term, reductions in motor and non-motor symptoms in patients with aPD treated with LCIG.


Subject(s)
Levodopa , Parkinson Disease , Humans , Levodopa/adverse effects , Carbidopa/adverse effects , Parkinson Disease/drug therapy , Parkinson Disease/diagnosis , Antiparkinson Agents/adverse effects , Prospective Studies , Quality of Life , Drug Combinations , Gels/therapeutic use
5.
Mov Disord ; 38(7): 1253-1261, 2023 07.
Article in English | MEDLINE | ID: mdl-37148424

ABSTRACT

BACKGROUND: Integrated care is essential for improving the management and health outcomes for people with Parkinson's disease (PD); reliable and objective measures of care integration are few. OBJECTIVE: The aim of this study was to test the psychometric properties of the Rainbow Model of Integrated Care Measurement Tool (RMIC-MT, provider version) for healthcare professionals involved in PD care. METHODS: A cross-sectional survey was administered online to an international network representing 95 neurology centers across 41 countries and 588 healthcare providers. Exploratory factor analysis with principal axis extraction method was used to assess construct validity. Confirmatory factor analysis was used to evaluate model fit of the RMIC-MT provider version. Cronbach's alpha was used to assess the internal consistency reliability. RESULTS: Overall, 371 care providers (62% response rate) participated in this study. No item had psychometric sensitivity problems. Nine factors (professional coordination, cultural competence, triple aims outcome, system coordination, clinical coordination, technical competence, community-centeredness, person-centeredness, and organizational coordination) with 42 items were determined by exploratory factor analysis. Cronbach's alpha ranged from 0.76 (clinical coordination) to 0.94 (system coordination) and showed significant correlation among all items in the scale (>0.4), indicating good internal consistency reliability. The confirmatory factor analysis model passed most goodness-of-fit tests, thereby confirming the factor structure of nine categories with a total of 40 items. CONCLUSIONS: The results provide evidence for the construct validity and other psychometric properties of the provider version of the RMIC-MT to measure integrated care in PD. © 2023 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.


Subject(s)
Delivery of Health Care, Integrated , Parkinson Disease , Humans , Reproducibility of Results , Parkinson Disease/therapy , Cross-Sectional Studies , Surveys and Questionnaires , Psychometrics , Delivery of Health Care, Integrated/methods
6.
J Parkinsons Dis ; 13(4): 609-617, 2023.
Article in English | MEDLINE | ID: mdl-37092237

ABSTRACT

BACKGROUND: Tablet formulations of Parkinson's disease (PD) medications may become ineffective at managing motor fluctuations in advanced PD. The liquid formulation, levodopa carbidopa ascorbic acid solution, or LCAS, is an effective and inexpensive treatment for motor fluctuations however it remains underutilized. OBJECTIVE: We compared the efficacy of LCAS with tablet formulations and Duodopa jejunal infusion through routine inpatient management using hourly functional status measures, the Timed Up and Go Test (TUG). The TUG differentiates between 'off' and 'on' states and quantifies motor fluctuations. METHODS: Experienced nurses used the TUG times and functional observations recorded hourly throughout the waking day to optimize the LCAS hourly dose and the Duodopa flow rate over several days. When patients were stabilized on each of the interventions, the TUG measures were then recorded to compare the outcomes of the interventions. RESULTS: Twenty-six participants had TUG times recorded while on one or more of the formulations: 19 had TUG times recorded on tablets, 23 on LCAS and 10 on Duodopa. TUG times on LCAS and Duodopa were significantly faster compared to tablets (p < 0.0001, p = 0.001 respectively). Severity of dyskinesia was not significantly different between formulations (p = 0.35). Daily dose for the three formulations and the hourly doses for LCAS and Duodopa did not differ significantly (p = 0.37, p = 0.19 respectively). CONCLUSION: This report demonstrated the efficacy of LCAS for improving motor complications and its equivalency with Duodopa jejunal infusion.


Subject(s)
Carbidopa , Parkinson Disease , Humans , Levodopa/therapeutic use , Parkinson Disease/complications , Antiparkinson Agents/therapeutic use , Postural Balance , Time and Motion Studies , Drug Combinations
7.
Disabil Rehabil ; 45(18): 2890-2895, 2023 09.
Article in English | MEDLINE | ID: mdl-36124542

ABSTRACT

PURPOSE: To explore the physical activity of people with Parkinson's disease (PD) with subthalamic nucleus deep brain stimulation (STN-DBS) and investigate factors associated with physical activity. METHODS: Twenty-four participants who had STN-DBS for one or more years were recruited. Eligibility criteria included Hoehn and Yahr stage ≤ 4, continuation of STN-DBS, living at home and able to provide informed consent. Physical activity was measured using the self-report physical activity scale for the elderly (PASE). Motor and non-factors that influence physical activity in PD, such as gait disturbance and mood, were recorded using clinical measures. RESULTS: Participants had long-standing PD of moderate severity, mean Hoehn and Yahr 2.3, and mild to moderate functional disability, MDS-UPDRS M-EDL mean 16.2. PASE scores were significantly lower compared to norms for adults ≤ 70 years (115.2 versus 143, p= 0.045). There was a significant negative correlation between PASE scores and falls history, fatigue, fear of falling (FOF) and quality of life (p < 0.05). CONCLUSIONS: This study provides further evidence that physical activity levels in PD with STN-DBS remain low compared to PASE norms for older adults. Future research investigating interventions to improve factors associated with low physical activity levels should be considered.Implications for RehabilitationDespite the benefits of deep brain stimulation (DBS) on motor function and activities of daily living, physical activity levels remain low in people with Parkinson's disease (PD) with subthalamic nucleus (STN)-DBS compared to norms for older adults.A history of falls, greater fear of falling (FOF) and higher levels of fatigue are associated with lower levels of physical activity in people with PD with STN-DBS.When planning rehabilitation interventions consideration should be given to strategies that promote and support regular physical activity for people with PD with STN-DBS.Rehabilitation clinicians should consider using falls prevention programmes and include strategies to decrease FOF for people with PD with STN-DBS.Consideration should be given to the presence of fatigue when planning the rehabilitation programme for the person with PD with STN-DBS.


Subject(s)
Deep Brain Stimulation , Parkinson Disease , Subthalamic Nucleus , Humans , Aged , Subthalamic Nucleus/physiology , Quality of Life , Accidental Falls/prevention & control , Activities of Daily Living , Fear , Treatment Outcome
8.
J Parkinsons Dis ; 12(3): 917-926, 2022.
Article in English | MEDLINE | ID: mdl-34974438

ABSTRACT

BACKGROUND: It is believed that motor symptoms, including dyskinesia, and non-motor symptoms impact health-related quality of life (HRQoL) in patients with Parkinson's disease (PD), and that improvements in these metrics are correlated. OBJECTIVE: Investigate the relationship between HRQoL and measures of PD severity and treatment efficacy, including motor and non-motor symptoms. METHODS: This was a planned investigation of an international, prospective, single-arm, post-marketing observational study of the long-term effectiveness of levodopa-carbidopa intestinal gel (LCIG) in patients with advanced PD. Pearson correlation coefficients (PCC) were calculated for baseline and change from baseline at 12 months between HRQoL and motor and non-motor symptoms. RESULTS: A total of 195 patients were included. At baseline, HRQoL was moderately positively correlated with Activities of Daily Living (UPDRS II, PCC = 0.44), non-motor symptoms (0.48), and measures of sleep (0.50 and 0.40); all p < 0.001. After 12 months of treatment with LCIG, improvements in HRQoL were moderately positively correlated with improvement from baseline in non-motor symptoms (PCC = 0.42), sleep (0.54), and daytime sleepiness (0.40; all p < 0.001), and weakly correlated with improvement in dyskinesia signs and symptoms (PCC = 0.23; p = 0.011). Improvement in HRQoL was not correlated with improvements in OFF time or dyskinesia time. CONCLUSION: Both at baseline and for change from baseline at 12 months, HRQoL was correlated with baseline and change from baseline in dyskinesia, Activities of Daily Living, and non-motor symptoms, including sleep; but not with baseline or change in OFF time.


Subject(s)
Carbidopa , Levodopa , Parkinson Disease , Activities of Daily Living , Antiparkinson Agents/therapeutic use , Carbidopa/therapeutic use , Drug Combinations , Dyskinesias , Gels , Humans , Levodopa/therapeutic use , Parkinson Disease/drug therapy , Prospective Studies , Quality of Life
9.
Handb Clin Neurol ; 184: 341-355, 2022.
Article in English | MEDLINE | ID: mdl-35034747

ABSTRACT

Movement disorders encompass a variety of conditions affecting the nervous system at multiple levels. The pathologic processes underlying movement disorders alter the normal neural functions and could lead to aberrant neuroplastic changes and to clinical phenomenology that is not expressed only through mere motor symptoms. Given this complexity, the responsiveness to pharmacologic and surgical therapies is often disappointing. Growing evidence supports the efficacy of neurorehabilitation for the treatment of movement disorders. Specific form of training involving both goal-based practice and aerobic training could drive and modulate neuroplasticity in order to restore the circuitries dysfunctions and to achieve behavioral gains. This chapter provides an overview of the alterations expressed in some movement disorders in terms of clinical signs and symptoms and plasticity, and suggests which ones and why tailored rehabilitation strategies should be adopted for the management of the different movement disorders.


Subject(s)
Movement Disorders , Neurological Rehabilitation , Humans , Movement , Movement Disorders/therapy , Neuronal Plasticity
10.
Disabil Rehabil ; 44(23): 7330-7338, 2022 11.
Article in English | MEDLINE | ID: mdl-34546146

ABSTRACT

PURPOSE: To investigate the feasibility and acceptability of the Health and Fitness Program (HFP), a long-term community gym program for people with mild to moderate Parkinson's disease (PD). METHODS: Physiotherapists, with PD expertise, developed individualised exercise programs for new HFP members in consultation with them. Gym instructors, with PD training, supervised the HFP sessions. Exercises included progressive strength training, aerobic, balance, and stretching. Participants who had been enrolled in the HFP for 12 months, were recruited to a single group pre/post design study to test the program's feasibility and acceptability. Feasibility included safety, retention, attendance, and compliance data and acceptability measured using a customised questionnaire. RESULTS: 17 of the 20 HFP members enrolled maintained membership for 12 months and participated in this study. The program was shown to be feasible with no falls reported during sessions, only one participant reported pain from exercising lasting more than 48 h, retention was high (85%) and most members complied with their program. Overall satisfaction with the program was high, with seven somewhat satisfied and 10 very satisfied. CONCLUSION: The HFP demonstrated that a PD community gym program is feasible and acceptable when physiotherapists and PD-trained instructors collaborate to provide individualized exercise programs.IMPLICATIONS FOR REHABILITATIONPeople with Parkinson's disease need support to maintain long-term adherence to regular exercise which can be achieved with supervised community-based gym programs.A community-based PD-specific exercise program can be safe and acceptable to people with PD when PD specialist physiotherapists are involved in planning participants' exercise programs and PD-trained gym instructors supervise the exercise sessions.Members are satisfied with programs that have strategies in place to minimise barriers to participation, such as keeping costs to members low, providing a quality service, having supportive trained staff, and creating opportunities for social interaction between members.Evidence-based community exercise programs may result in improved strength and aerobic fitness and maintain quality of life in people with mild to moderate PD however further research using an RCT study is needed.


Subject(s)
Parkinson Disease , Humans , Feasibility Studies , Quality of Life , Exercise , Exercise Therapy
11.
Mov Disord Clin Pract ; 8(7): 1061-1074, 2021 Oct.
Article in English | MEDLINE | ID: mdl-34631942

ABSTRACT

BACKGROUND: Levodopa-carbidopa intestinal gel (LCIG) is an established treatment for improving motor and some non-motor symptoms (NMS) in patients with advanced Parkinson's disease (PD). Prospective long-term data in routine clinical practice are limited. OBJECTIVE: Assess LCIG effectiveness and safety in patients with advanced PD after 12 months during real-world routine clinical practice. METHODS: Duodopa/Duopa in patients with advanced Parkinson's disease-a global observational study evaluating long-term effectiveness (DUOGLOBE) (NCT02611713) is an ongoing, prospective, multinational, observational study of LCIG-naïve patients treated as part of routine clinical practice; 3 years of follow-up are planned. The primary outcome is the change in patient-reported off time. Other assessments include the Unified Dyskinesia Rating Scale (UDysRS), Non-Motor Symptoms Scale (NMSS), Parkinson's Disease Sleep scale (PDSS-2), Epworth Sleepiness Scale (ESS), health-related quality of life (HR-QoL), caregiver burden, and serious adverse events (SAEs). Outcomes from baseline to month (M) 12 are presented. RESULTS: In this 12-month follow-up, patients (N = 195) had baseline characteristics similar to other LCIG studies. Significant improvements (mean change to M12) were observed in off time (-3.9 ± 3.6 hr/day, P < 0.001), dyskinesia assessed using the UDysRS (-9.6 ± 22.5, P < 0.001), NMSS (-23.1 ± 41.4, P < 0.001), sleep and sleepiness symptoms on the PDSS-2 (-6.5 ± 12.2, P < 0.001) and ESS (-1.0 ± 5.7, P < 0.05), HR-QoL (-9.0 ± 21.6, P < 0.001), and caregiver burden (-1.9 ± 6.7, P = 0.008). Overall, 40.5% (n = 79) of patients experienced SAEs; fall (n = 6; 3.1%) and urinary tract infection (n = 6; 3.1%) were SAEs reported in ≥3% of patients. CONCLUSIONS: These 12-month outcome data show sustained, long-term improvements and support the real-world effectiveness of LCIG in patients with advanced PD. Safety was consistent with previous studies.

13.
Neurodegener Dis Manag ; 10(5): 309-323, 2020 10.
Article in English | MEDLINE | ID: mdl-32873195

ABSTRACT

Aim: A Delphi expert consensus panel proposed that fulfilling ≥1 of the '5-2-1 criteria' (≥five-times daily oral levodopa use, ≥two daily hours with 'Off' symptoms or ≥one daily hour with troublesome dyskinesia) suggests advanced Parkinson's disease (PD). Patients & methods: DUOdopa/Duopa in Patients with Advanced PD - a GLobal OBservational Study Evaluating Long-Term Effectiveness (DUOGLOBE) - is a single-arm, postmarketing, observational, long-term effectiveness study of levodopa-carbidopa intestinal gel (LCIG) for advanced PD. Results: This 6-month interim analysis (n = 139) affirms that most (98%) enrolled patients fulfill ≥1 of the 5-2-1 criteria. These patients responded favorably to LCIG treatment. Safety was consistent with other LCIG studies. Conclusion: In advanced PD patients, the 5-2-1 criteria generally aligns with clinician assessment. Clinical Trial Registration: NCT02611713 (ClinicalTrials.gov).


Subject(s)
Antiparkinson Agents/therapeutic use , Carbidopa/therapeutic use , Levodopa/therapeutic use , Parkinson Disease/drug therapy , Aged , Drug Combinations , Female , Gels/therapeutic use , Humans , Male , Middle Aged
14.
Mov Disord ; 35(9): 1509-1531, 2020 09.
Article in English | MEDLINE | ID: mdl-32598094

ABSTRACT

BACKGROUND: Quality of life in Parkinson's disease (PD) is affected by motor and nonmotor symptoms, necessitating an integrated care approach. Existing care models vary considerably in numerous domains. The objectives of this study were to perform a systematic review and meta-analysis of PD integrated care models and develop recommendations for a representative model. METHODS: We conducted a systematic review of published integrated care models and a meta-analysis of randomized, controlled trials examining integrated care versus standard care. The primary outcome was health-related quality of life using a validated PD scale. We evaluated levels of care integration using the Rainbow Model of Integrated Care. RESULTS: Forty-eight publications were identified, including 8 randomized, controlled trials with health-related quality of life data (n = 1,149 total PD patients). Qualitative evaluation of individual care model integration guided by the Rainbow Model of Integrated Care revealed frequent clinical and professional integration, but infrequent organizational and population-based integration elements. Meta-analysis of randomized, controlled trials revealed significant heterogeneity (I2 = 90%, P < 0.0001). Subgroup analysis including only outpatient care models (n = 5) indicated homogeneity of effects (I2 = 0%, P = 0.52) and improved health-related quality of life favoring integrated care, with a small effect size (standardized mean difference [SMD], -0.17; 95% CI, -0.31 to -0.03; P = 0.02). CONCLUSIONS: Outpatient integrated PD care models may improve patient-reported health-related quality of life compared with standard care; however, because of variable methodological approaches and a high risk of bias related to inherent difficulties in study design (eg, blinding of participants and interventionists), generalizability of these results are difficult to establish. The Rainbow Model of Integrated Care is a promising method of evaluating elements and levels of integration from individual patient care to population health in a PD context. © 2020 The Authors. Movement Disorders published by Wiley Periodicals, LLC. on behalf of International Parkinson and Movement Disorder Society.


Subject(s)
Delivery of Health Care, Integrated , Parkinson Disease , Humans , Parkinson Disease/therapy , Quality of Life
15.
J Parkinsons Dis ; 10(3): 1087-1098, 2020.
Article in English | MEDLINE | ID: mdl-32444563

ABSTRACT

BACKGROUND: Optimal management in expert centers for Parkinson's disease (PD) usually involves pharmacological and non-pharmacological interventions, delivered by a multidisciplinary approach. However, there is no guideline specifying how this model should be organized. Consequently, the nature of multidisciplinary care varies widely. OBJECTIVE: To optimize care delivery, we aimed to provide recommendations for the organization of multidisciplinary care in PD. METHODS: Twenty expert centers in the field of multidisciplinary PD care participated. Their leading neurologists completed a survey covering eight themes: elements for optimal multidisciplinary care; team members; role of patients and care partners; team coordination; team meetings; inpatient versus outpatient care; telehealth; and challenges towards multidisciplinary care. During a consensus meeting, outcomes were incorporated into concept recommendations that were reviewed by each center's multidisciplinary team. Three patient organizations rated the recommendations according to patient priorities. Based on this feedback, a final set of recommendations (essential elements for delivery of multidisciplinary care) and considerations (desirable elements) was developed. RESULTS: We developed 30 recommendations and 10 considerations. The patient organizations rated the following recommendations as most important: care is organized in a patient-centered way; every newly diagnosed patient has access to a core multidisciplinary team; and each team has a coordinator. A checklist was created to further facilitate its implementation. CONCLUSION: We provide a practical tool to improve multidisciplinary care for persons with PD at the organizational level. Future studies should focus on implementing these recommendations in clinical practice, evaluating their potential applicability and effectiveness, and comparing alternative models of PD care.


Subject(s)
Delivery of Health Care , Evidence-Based Practice , Neurologists , Parkinson Disease/therapy , Patient Care Team , Patient Preference , Patient-Centered Care , Practice Guidelines as Topic , Tertiary Care Centers , Checklist , Consensus , Delivery of Health Care/organization & administration , Delivery of Health Care/standards , Evidence-Based Practice/organization & administration , Evidence-Based Practice/standards , Health Care Surveys , Humans , Patient Advocacy , Patient Care Team/organization & administration , Patient Care Team/standards , Patient-Centered Care/organization & administration , Patient-Centered Care/standards , Practice Guidelines as Topic/standards , Tertiary Care Centers/organization & administration , Tertiary Care Centers/standards
16.
Parkinsons Dis ; 2020: 2679501, 2020.
Article in English | MEDLINE | ID: mdl-32318258

ABSTRACT

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.

17.
Parkinsons Dis ; 2017: 5932675, 2017.
Article in English | MEDLINE | ID: mdl-28352490

ABSTRACT

Background. Parkinson disease (PD) is a costly chronic condition in terms of managing both motor and nonmotor symptoms. The burden of disease is high for individuals, caregivers, and the health system. The aim of this study is to estimate the annual cost of PD from the household, health system, and societal perspectives. Methods. A prospective cohort study of newly referred people with PD to a specialist PD clinic in Melbourne, Australia. Participants completed baseline and monthly health resource use questionnaires and Medicare data were collected over 12 months. Results. 87 patients completed the 12-month follow-up assessments. The mean annual cost per person to the health care system was $32,556 AUD. The burden to society was an additional $45,000 per annum per person with PD. The largest component of health system costs were for hospitalisation (69% of total costs). The costs for people with moderate to severe disease were almost 4 times those with mild PD ($63,569 versus $17,537 p < 0.001). Conclusion. PD is associated with significant costs to individuals and to society. Costs escalated with disease severity suggesting that the burden to society is likely to grow with the increasing disease prevalence that is associated with population ageing.

18.
Intern Med J ; 47(10): 1107-1113, 2017 Oct.
Article in English | MEDLINE | ID: mdl-28195385

ABSTRACT

In Australia 1% of individuals aged over 50 years have Parkinson disease (PD). Guidance for commencing device-assisted therapies (DAT) for PD in Australia was developed based on a review of European recommendations and their relevance to the local clinical setting. An online survey and teleconference discussions were held by a group of eight local movement disorder experts to develop consensus. Referral to a movement disorder specialist and consideration of DAT is appropriate when motor fluctuations cause disability or reduced quality of life, response to treatment is inconsistent or motor fluctuations and dyskinesias require frequent treatment adjustment without apparent benefit and levodopa is required four or more times daily. Three types of DAT are available in Australia for patients with PD: continuous subcutaneous apomorphine; continuous levodopa-carbidopa intestinal gel infusion; and deep brain stimulation. All improve consistency of motor response. The most important aspects when considering which DAT to use are the preferences of the patient and their carers, patient comorbidities, age, cognitive function and neuropsychiatric status. Patients and their families need to be provided with treatment options that are suitable to them, with adequate explanations regarding the recommendations and comparison of potential device-related complications. DAT are best managed, where possible, in a specialist centre with experience in all three types of therapy. Proactive and early management of symptoms during disease progression is essential to maintain optimally motor responses and quality of life in patients with PD.


Subject(s)
Antiparkinson Agents/administration & dosage , Deep Brain Stimulation/methods , Infusions, Parenteral/methods , Infusions, Subcutaneous/methods , Parkinson Disease/drug therapy , Parkinson Disease/epidemiology , Apomorphine/administration & dosage , Australia/epidemiology , Carbidopa/administration & dosage , Drug Combinations , Humans , Levodopa/administration & dosage , Parkinson Disease/diagnosis
19.
Mov Disord Clin Pract ; 4(3): 290-297, 2017.
Article in English | MEDLINE | ID: mdl-30868095

ABSTRACT

BACKGROUND: Freezing of gait (FOG) in Parkinson's disease (PD) is poorly understood; however, with the established understanding of basal ganglia function, its manifestations should be more easily interpretable. This review examines freezing of gait (FOG) from such a perspective. METHODS: A search of the MEDLINE and EMBASE databases from the year 2000 onward for review articles, focused on the pathophysiology of FOG, was used to determine current concepts. A previously established model of basal ganglia function was used to determine the concepts' validities. At the core of the model are deficits in motor set maintenance and timing cue production for automatic movement. It includes the shift between attention and automation to the predominant attention control of gait in PD. RESULTS: The difficulties of the found concepts to explain FOG stem from failure to characterize different FOG components, from the assumption that all components share a similar pathophysiology, from a failure to separate basic deficits from compensatory mechanisms, and from the assumption that cognitive deficits are the cause of FOG rather than representing an inadequate compensation to FOG. Pragmatic approaches to management use the attention shift, with the provision of visual information about correct amplitude of step to correct initiation deficits, and motor blocks during gait. It also emphasizes the need to prevent step length reduction on turns, environmental situations, and cognitive overload. CONCLUSION: The concept of automatic deficits in set maintenance and cue production best describe FOG manifestations in PD and, with the use of attention, the concept also provides pragmatic strategies for management.

20.
Gait Posture ; 52: 87-94, 2017 02.
Article in English | MEDLINE | ID: mdl-27888696

ABSTRACT

Although hydrotherapy is one of the physical therapies adopted to optimize gait rehabilitation in people with Parkinson disease, the quantitative measurement of gait-related outcomes has not been provided yet. This work aims to document the gait improvements in a group of parkinsonians after a hydrotherapy program through 2D and 3D underwater and on land gait analysis. Thirty-four parkinsonians and twenty-two controls were enrolled, divided into two different cohorts. In the first one, 2 groups of patients underwent underwater or land based walking training; controls underwent underwater walking training. Hence pre-treatment 2D underwater and on land gait analysis were performed, together with post-treatment on land gait analysis. Considering that current literature documented a reduced movement amplitude in parkinsonians across all lower limb joints in all movement planes, 3D underwater and on land gait analysis were performed on a second cohort of subjects (10 parkinsonians and 10 controls) who underwent underwater gait training. Baseline land 2D and 3D gait analysis in parkinsonians showed shorter stride length and slower speed than controls, in agreement with previous findings. Comparison between underwater and on land gait analysis showed reduction in stride length, cadence and speed on both parkinsonians and controls. Although patients who underwent underwater treatment exhibited significant changes on spatiotemporal parameters and sagittal plane lower limb kinematics, 3D gait analysis documented a significant (p<0.05) improvement in all movement planes. These data deserve attention for research directions promoting the optimal recovery and maintenance of walking ability.


Subject(s)
Gait Disorders, Neurologic/rehabilitation , Gait , Parkinson Disease/rehabilitation , Walking , Aged , Case-Control Studies , Female , Gait Disorders, Neurologic/physiopathology , Humans , Hydrotherapy , Male , Parkinson Disease/physiopathology , Physical Therapy Modalities , Treatment Outcome
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