Background Little is known about the health care experiences of people with Parkinson's disease (... more 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.
• Application of simple criteria to identify advanced Parkinson's disease (PD) is important becau... more • Application of simple criteria to identify advanced Parkinson's disease (PD) is important because early identification of advanced PD allows doctors to adjust treatment, leading to better symptom control and improved quality of life. • A group of experts proposed that fulfilling at least one of the '5-2-1 criteria' (taking levodopa by mouth at least five times a day, having at least 2 h of the day with 'Off' symptoms, or having at least 1 h of troublesome, uncontrolled, muscle movements (also known as dyskinesia) suggests advanced PD. • Patients meeting at least one of the 5-2-1 criteria may also be candidates for advanced therapies, such as continuous infusion of levodopa-carbidopa intestinal gel, continuous administration of subcutaneous apomorphine, or deep brain stimulation. • The multicountry long-term DUOGLOBE study assessed long-term effectiveness and safety of continuous administration of levodopa-carbidopa intestinal gel. • At enrollment, almost all patients with physician-identified advanced PD in the DUOGLOBE study met at least one of the 5-2-1 criteria, and the majority (68%) met two or more of the 5-2-1 criteria. • Patients showed improvement in motor and nonmotor symptoms following treatment with levodopa-carbidopa intestinal gel. • As part of the physician's assessment, using the 5-2-1 criteria may be an objective way to identify patients with advanced PD using simple and reproducible measures. 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) Neurodegener. Dis. Manag.
8 Optimizing Movement And Preventing Falls In Parkinson's Disease: Strategies Fo... more 8 Optimizing Movement And Preventing Falls In Parkinson's Disease: Strategies For Patients And Caregivers E. Morris, BScPT, Grad Dip (Ceron), MAppSc, PhD; Frances Huxham, PhD; Hylton B. Menz, PhD; Fiona Dobson, BScPT, PhD; Panamas Piriyaprasarth, BScPT; Pamela Fok, ...
Purpose: To identify the demographic factors, impairments and activity limitations that contribut... more Purpose: To identify the demographic factors, impairments and activity limitations that contribute to health-related quality of life (HRQOL) in people with idiopathic Parkinson's disease (PD). Method: 210 individual with idiopathic PD who participated in the baseline assessment of a randomized clinical trial were included. The Parkinson's Disease Questionnaire-39 summary index (PDQ-39 SI) was used to quantify HRQOL. In order to provide greater clarity regarding the determinants of HRQOL, path analysis was used to explore the relationships between the various predictors in relation to the functioning and disability framework of the International Classification of Functioning (ICF) model. Results: The two models of HRQOL that were examined in this study had a reasonable fit with the data. Activity limitations were found to be the strongest predictor of HRQOL. Limitations in performing self-care activities contributed the most to HRQOL in Model 1 (= 0.38; p<0.05), while limitations in functional mobility had the largest contribution in Model 2 (=-0.31; p<0.0005). Selfreported history of falls was also found to have a significant and direct relationship with HRQOL in both models (Model 1 =-0.11; p<0.05; Model 2 =-0.21; p<0.05). Conclusions: Health-related quality of life in PD is associated with self-care limitations, mobility limitations, self-reported history of falls and disease duration. Understanding how these factors are interrelated may assist clinicians focus their assessments and develop strategies that aim to minimize the negative functional and social sequelae of this debilitating disease.
Background: It is believed that motor symptoms, including dyskinesia, and non-motor symptoms impa... more 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.
Background: Levodopa-carbidopa intestinal gel (LCIG) improves motor and non-motor symptoms in pat... more 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).
Hypokinetic movement can be greatly improved in Parkinson&#39;s disease patients by the provi... more Hypokinetic movement can be greatly improved in Parkinson&#39;s disease patients by the provision of external cues to guide movement. It has recently been reported, however, that movement performance in parkinsonian patients can be similarly improved in the absence of external cues by using attentional strategies, whereby patients are instructed to consciously attend to particular aspects of the movement which would normally be controlled automatically. To study the neurophysiological basis of such improvements in performance associated with the use of attentional strategies, movement-related cortical potentials were examined in Parkinson&#39;s disease and control subjects using a reaction time paradigm. One group of subjects were explicitly instructed to concentrate on internally timed responses to anticipate the presentation of a predictably timed go signal. Other subjects were given no such instruction regarding attentional strategies. Early-stage premovement activity of movement-related potentials was significantly increased in amplitude and reaction times were significantly faster for Parkinson&#39;s disease subjects when instructed to direct their attention toward internally generating responses rather than relying on external cues. It is therefore suggested that the use of attentional strategies may allow movement to be mediated by less automatic and more conscious attentional motor control processes which may be less impaired by basal ganglia dysfunction, and thereby improve movement performance in Parkinson&#39;s disease.
Movement disorders encompass a variety of conditions affecting the nervous system at multiple lev... more 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.
Despite data supporting the rapid adoption of telehealth in the delivery of clinical care in Nort... more Despite data supporting the rapid adoption of telehealth in the delivery of clinical care in North America, the implementation of telehealth visits in clinical research studies has faced critical barriers. These challenges include: (1) variations in state licensure requirements for telehealth; (2) disparities in access to telehealth among disadvantaged populations; (3) lack of consistency among individual Investigational Review Boards (IRBs). Each barrier prevents the systematic conversion of research protocols to include telehealth visits. The Parkinson's Foundation and members of the Parkinson Study Group submit this Comment to highlight current challenges to implementing telehealth visits for clinical research studies. Our objective is to provide a consensus statement emphasizing the urgent need for regulators to standardize adoption of telehealth practices and to propose recommendations to reduce the burden for implementation in existing research study protocols.
BackgroundQuality of life in Parkinson's disease (PD) is affected by motor and nonmotor sympt... more BackgroundQuality 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.MethodsWe 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.ResultsForty‐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 fre...
Background Little is known about the health care experiences of people with Parkinson's disease (... more 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.
• Application of simple criteria to identify advanced Parkinson's disease (PD) is important becau... more • Application of simple criteria to identify advanced Parkinson's disease (PD) is important because early identification of advanced PD allows doctors to adjust treatment, leading to better symptom control and improved quality of life. • A group of experts proposed that fulfilling at least one of the '5-2-1 criteria' (taking levodopa by mouth at least five times a day, having at least 2 h of the day with 'Off' symptoms, or having at least 1 h of troublesome, uncontrolled, muscle movements (also known as dyskinesia) suggests advanced PD. • Patients meeting at least one of the 5-2-1 criteria may also be candidates for advanced therapies, such as continuous infusion of levodopa-carbidopa intestinal gel, continuous administration of subcutaneous apomorphine, or deep brain stimulation. • The multicountry long-term DUOGLOBE study assessed long-term effectiveness and safety of continuous administration of levodopa-carbidopa intestinal gel. • At enrollment, almost all patients with physician-identified advanced PD in the DUOGLOBE study met at least one of the 5-2-1 criteria, and the majority (68%) met two or more of the 5-2-1 criteria. • Patients showed improvement in motor and nonmotor symptoms following treatment with levodopa-carbidopa intestinal gel. • As part of the physician's assessment, using the 5-2-1 criteria may be an objective way to identify patients with advanced PD using simple and reproducible measures. 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) Neurodegener. Dis. Manag.
8 Optimizing Movement And Preventing Falls In Parkinson&amp;amp;#x27;s Disease: Strategies Fo... more 8 Optimizing Movement And Preventing Falls In Parkinson&amp;amp;#x27;s Disease: Strategies For Patients And Caregivers E. Morris, BScPT, Grad Dip (Ceron), MAppSc, PhD; Frances Huxham, PhD; Hylton B. Menz, PhD; Fiona Dobson, BScPT, PhD; Panamas Piriyaprasarth, BScPT; Pamela Fok, ...
Purpose: To identify the demographic factors, impairments and activity limitations that contribut... more Purpose: To identify the demographic factors, impairments and activity limitations that contribute to health-related quality of life (HRQOL) in people with idiopathic Parkinson's disease (PD). Method: 210 individual with idiopathic PD who participated in the baseline assessment of a randomized clinical trial were included. The Parkinson's Disease Questionnaire-39 summary index (PDQ-39 SI) was used to quantify HRQOL. In order to provide greater clarity regarding the determinants of HRQOL, path analysis was used to explore the relationships between the various predictors in relation to the functioning and disability framework of the International Classification of Functioning (ICF) model. Results: The two models of HRQOL that were examined in this study had a reasonable fit with the data. Activity limitations were found to be the strongest predictor of HRQOL. Limitations in performing self-care activities contributed the most to HRQOL in Model 1 (= 0.38; p<0.05), while limitations in functional mobility had the largest contribution in Model 2 (=-0.31; p<0.0005). Selfreported history of falls was also found to have a significant and direct relationship with HRQOL in both models (Model 1 =-0.11; p<0.05; Model 2 =-0.21; p<0.05). Conclusions: Health-related quality of life in PD is associated with self-care limitations, mobility limitations, self-reported history of falls and disease duration. Understanding how these factors are interrelated may assist clinicians focus their assessments and develop strategies that aim to minimize the negative functional and social sequelae of this debilitating disease.
Background: It is believed that motor symptoms, including dyskinesia, and non-motor symptoms impa... more 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.
Background: Levodopa-carbidopa intestinal gel (LCIG) improves motor and non-motor symptoms in pat... more 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).
Hypokinetic movement can be greatly improved in Parkinson&#39;s disease patients by the provi... more Hypokinetic movement can be greatly improved in Parkinson&#39;s disease patients by the provision of external cues to guide movement. It has recently been reported, however, that movement performance in parkinsonian patients can be similarly improved in the absence of external cues by using attentional strategies, whereby patients are instructed to consciously attend to particular aspects of the movement which would normally be controlled automatically. To study the neurophysiological basis of such improvements in performance associated with the use of attentional strategies, movement-related cortical potentials were examined in Parkinson&#39;s disease and control subjects using a reaction time paradigm. One group of subjects were explicitly instructed to concentrate on internally timed responses to anticipate the presentation of a predictably timed go signal. Other subjects were given no such instruction regarding attentional strategies. Early-stage premovement activity of movement-related potentials was significantly increased in amplitude and reaction times were significantly faster for Parkinson&#39;s disease subjects when instructed to direct their attention toward internally generating responses rather than relying on external cues. It is therefore suggested that the use of attentional strategies may allow movement to be mediated by less automatic and more conscious attentional motor control processes which may be less impaired by basal ganglia dysfunction, and thereby improve movement performance in Parkinson&#39;s disease.
Movement disorders encompass a variety of conditions affecting the nervous system at multiple lev... more 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.
Despite data supporting the rapid adoption of telehealth in the delivery of clinical care in Nort... more Despite data supporting the rapid adoption of telehealth in the delivery of clinical care in North America, the implementation of telehealth visits in clinical research studies has faced critical barriers. These challenges include: (1) variations in state licensure requirements for telehealth; (2) disparities in access to telehealth among disadvantaged populations; (3) lack of consistency among individual Investigational Review Boards (IRBs). Each barrier prevents the systematic conversion of research protocols to include telehealth visits. The Parkinson's Foundation and members of the Parkinson Study Group submit this Comment to highlight current challenges to implementing telehealth visits for clinical research studies. Our objective is to provide a consensus statement emphasizing the urgent need for regulators to standardize adoption of telehealth practices and to propose recommendations to reduce the burden for implementation in existing research study protocols.
BackgroundQuality of life in Parkinson's disease (PD) is affected by motor and nonmotor sympt... more BackgroundQuality 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.MethodsWe 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.ResultsForty‐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 fre...
Background. Parkinson disease (PD) is a costly chronic condition in terms of managing both motor ... more 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 í µí± < 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.
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Papers by Robert Iansek