Objective Implementing the routine collection of patient reported outcome measures (PROMs) is key... more Objective Implementing the routine collection of patient reported outcome measures (PROMs) is key to improving healthcare quality and patient satisfaction. The implementation process can be strengthened through staff and patient co-design. The aim of this project was to develop a set of Australian PROM implementation recommendations (‘AusPROM’) to guide rapid translation into practice. Methods Staff working across 29 Australian private hospitals participated in the project. The hospitals provided elective surgery and spanned each state and territory of Australia. Staff engaged in a Delphi technique to develop the AusPROM, which involved three iterative focus groups. To ensure full disclosure, staff were also provided with additional project-related data sources throughout the Delphi technique. This included data from a patient focus group (patient co-design), patient survey, technical feasibility testing, 3 months of pilot testing (four sites), 3 months of national implementation (2...
BackgroundPatient reported outcome measures (PROMs) engage patients in co-evaluation of their hea... more BackgroundPatient reported outcome measures (PROMs) engage patients in co-evaluation of their health and wellbeing outcomes. This study aimed to determine the feasibility, response rate, degree of recovery and patient acceptability of a PROM survey for elective surgery.MethodsWe sampled patients with a broad range of elective surgeries from four major Australian hospitals to evaluate (1) feasibility of the technology used to implement the PROMs across geographically dispersed sites, (2) response rates for automated short message service (SMS) versus email survey delivery formats, (3) the degree of recovery at one and four weeks post-surgery as measured by the Quality of Recovery 15 Item PROM (QoR-15), and (4) patient acceptability of PROMS based on survey and focus group results. Feasibility and acceptability recommendations were then co-designed with stakeholders, based on the data.ResultsOver three months there were 5985 surveys responses from 20,052 surveys (30% response rate). F...
Obtaining pre-surgery PROM measures is not always feasible. The aim of this study was to examine ... more Obtaining pre-surgery PROM measures is not always feasible. The aim of this study was to examine if self-reports of change following elective surgery correlate with change scores from a validated PROM (15-item Quality of Recovery (QoR-15)). This cross-sectional study across 29 hospitals enrolled elective surgery patients. PROMs were collected one-week pre-surgery, as well as one- and four-weeks post-surgery via an electronic survey. We examined associations between patient “judgement of change” at one and four-weeks after surgery and the actual pre-to post-surgery PROM change scores. A total of 4177 surveys were received. The correlation between patient judgement of change, and the actual change score was moderately strong at one-week (n = 247, rs = 0.512, p < 0.001), yet low at four-weeks (n = 241, rs = 0.340, p < 0.001). Patient judgement was aligned to the direction of the PROM change score from pre- to post-surgery. We also examined the correlation between the QoR-15 (qual...
Background and Purpose. Exacerbation of movement disorders while doing 2 tasks (dual task perform... more Background and Purpose. Exacerbation of movement disorders while doing 2 tasks (dual task performance) is a characteristic feature of Parkinson disease (PD). The aim of this investigation was to identify whether the type of secondary task (motor or cognitive) determined the severity of dual task interference. Subjects and Methods. Footstep patterns for 15 people with PD and 15 comparison subjects without PD were compared when they walked: (1) at a self-selected speed, (2) while simultaneously performing a motor task (coin transference), and (3) while simultaneously performing a cognitive task (digit subtraction). Gait speed, stride length, cadence, and the percentage of the gait cycle in double-limb stance (DS) were examined with a computerized stride analyzer. Results. When there was no second task, the mean stride length was less in the group with PD (1.29 m) than in the comparison group (1.51 m), and the mean gait speed was less in the group with PD (71.47 m/min) than in the comp...
Archives of physical medicine and rehabilitation, Sep 21, 2017
This pilot trial examined the feasibility of a randomised controlled study design and explored th... more This pilot trial examined the feasibility of a randomised controlled study design and explored the benefits of the set dancing intervention compared to usual care. Randomised controlled design, with participants randomised to Irish set dance classes or a usual care control group. Community based PARTICIPANTS: Individuals with idiopathic PD INTERVENTIONS: The dance group attended a 1.5 hour dancing class each week for 10 weeks and undertook a home dance programme for 20 minutes three times per week. The usual care control group continued with their usual care and daily activities. The primary outcome was feasibility; determined by recruitment rates, success of randomization and allocation procedures, attrition, adherence, safety, willingness of participants to be randomised, resource availability and cost. Secondary outcomes were motor function (UPDRS-3), quality of life (PDQ-39), functional endurance (six minute walk test) and balance (mini-BESTest). Ninety participants were randomi...
For people with idiopathic Parkinson's disease, does a 6-week, comprehensive, home exercise p... more For people with idiopathic Parkinson's disease, does a 6-week, comprehensive, home exercise program reduce falls and disability and improve health-related quality of life? Is the program cost-effective? Randomised, controlled trial with concealed allocation and assessor blinding. One hundred and thirty-three community-dwelling adults with Parkinson's disease. The experimental group completed a 6-week home program comprising progressive resistance strength training, movement strategy training and falls education. The control group completed 6 weeks of non-specific life skills training. Participants in both groups received weekly therapist-guided sessions for 6 consecutive weeks and a weekly self-directed home program. The primary outcome was the rate of falls, documented for the 12-month period immediately after therapy. Secondary outcomes were disability and health-related quality of life, assessed before and after intervention and at a 12-month follow-up. A total of 2255 fa...
Objectives The aim of the present study was to quantify the baseline variation in health-related ... more Objectives The aim of the present study was to quantify the baseline variation in health-related quality of life (HRQOL) between individuals with Parkinson’s disease (PD) referred to a comprehensive care program and those attending standard neurological services. Methods Participants included individuals with PD receiving conventional care from neurologists in private practice and individuals referred to a comprehensive inter-professional team hospital out-patient service. The Parkinson’s Disease Questionnaire-39 (PDQ-39) and the EuroQoL (EQ-5D-3L) were used to quantify HRQOL. Results Participants referred to an inter-professional service were more likely to have poorer indices on PD-specific measures but not for generic HRQOL compared with individuals receiving standard neurological services. After adjusting for age, gender, disease severity and duration, people referred to a comprehensive care program were more likely to have a higher score for the PDQ-39 summary index (PDQ-39 SI;...
Although hydrotherapy is one of the physical therapies adopted to optimize gait rehabilitation in... more 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&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;0.05) improvement in all movement planes. These data deserve attention for research directions promoting the optimal recovery and maintenance of walking ability.
People with Parkinson's disease often have walking difficulty, and this is likely to be exace... more People with Parkinson's disease often have walking difficulty, and this is likely to be exacerbated while walking in places in the community, where people are likely to face greater and more varied challenges. This study aims to understand the facilitators and the barriers to walking in the community perceived by people with Parkinson's disease. This qualitative study involved 5 focus groups (n = 34) of people with Parkinson's disease and their partners residing in metropolitan and rural regions in Queensland, Australia. Results found that people with PD reported to use internal personal strategies as facilitators to community walking, but identified primarily external factors, particularly the environmental factors as barriers. The adoption of strategies or the use of facilitators allows people with Parkinson's disease to cope so that participants often did not report disability.
Purpose: This study describes the health-related quality of life (HRQOL) of Australians living wi... more Purpose: This study describes the health-related quality of life (HRQOL) of Australians living with Parkinson disease (PD) and compares the findings to international reports. Methods: The Parkinson's Disease Questionnaire-39 (PDQ-39) was used to measure HRQOL in 210 individuals with PD living in Australia. In parallel, a tailored literature search identified previous studies on HROQL in people with PD. A quantitative meta-analysis with a random-effects model was used to compare the HRQOL of individuals with PD living in Australia and other countries. Results: The mean PDQ-39 summary index (SI) score for this sample of Australians with PD was 20.9 (SD 12.7). Ratings for the dimension of social support and stigma were significantly lower than ratings for bodily discomfort, mobility, activities of daily living, cognition, and emotional well-being. Comparing the Australian and international PD samples revealed a significant heterogeneity in overall HRQOL (I2=97%). The mean PDQ-39 SI...
Objective Implementing the routine collection of patient reported outcome measures (PROMs) is key... more Objective Implementing the routine collection of patient reported outcome measures (PROMs) is key to improving healthcare quality and patient satisfaction. The implementation process can be strengthened through staff and patient co-design. The aim of this project was to develop a set of Australian PROM implementation recommendations (‘AusPROM’) to guide rapid translation into practice. Methods Staff working across 29 Australian private hospitals participated in the project. The hospitals provided elective surgery and spanned each state and territory of Australia. Staff engaged in a Delphi technique to develop the AusPROM, which involved three iterative focus groups. To ensure full disclosure, staff were also provided with additional project-related data sources throughout the Delphi technique. This included data from a patient focus group (patient co-design), patient survey, technical feasibility testing, 3 months of pilot testing (four sites), 3 months of national implementation (2...
BackgroundPatient reported outcome measures (PROMs) engage patients in co-evaluation of their hea... more BackgroundPatient reported outcome measures (PROMs) engage patients in co-evaluation of their health and wellbeing outcomes. This study aimed to determine the feasibility, response rate, degree of recovery and patient acceptability of a PROM survey for elective surgery.MethodsWe sampled patients with a broad range of elective surgeries from four major Australian hospitals to evaluate (1) feasibility of the technology used to implement the PROMs across geographically dispersed sites, (2) response rates for automated short message service (SMS) versus email survey delivery formats, (3) the degree of recovery at one and four weeks post-surgery as measured by the Quality of Recovery 15 Item PROM (QoR-15), and (4) patient acceptability of PROMS based on survey and focus group results. Feasibility and acceptability recommendations were then co-designed with stakeholders, based on the data.ResultsOver three months there were 5985 surveys responses from 20,052 surveys (30% response rate). F...
Obtaining pre-surgery PROM measures is not always feasible. The aim of this study was to examine ... more Obtaining pre-surgery PROM measures is not always feasible. The aim of this study was to examine if self-reports of change following elective surgery correlate with change scores from a validated PROM (15-item Quality of Recovery (QoR-15)). This cross-sectional study across 29 hospitals enrolled elective surgery patients. PROMs were collected one-week pre-surgery, as well as one- and four-weeks post-surgery via an electronic survey. We examined associations between patient “judgement of change” at one and four-weeks after surgery and the actual pre-to post-surgery PROM change scores. A total of 4177 surveys were received. The correlation between patient judgement of change, and the actual change score was moderately strong at one-week (n = 247, rs = 0.512, p < 0.001), yet low at four-weeks (n = 241, rs = 0.340, p < 0.001). Patient judgement was aligned to the direction of the PROM change score from pre- to post-surgery. We also examined the correlation between the QoR-15 (qual...
Background and Purpose. Exacerbation of movement disorders while doing 2 tasks (dual task perform... more Background and Purpose. Exacerbation of movement disorders while doing 2 tasks (dual task performance) is a characteristic feature of Parkinson disease (PD). The aim of this investigation was to identify whether the type of secondary task (motor or cognitive) determined the severity of dual task interference. Subjects and Methods. Footstep patterns for 15 people with PD and 15 comparison subjects without PD were compared when they walked: (1) at a self-selected speed, (2) while simultaneously performing a motor task (coin transference), and (3) while simultaneously performing a cognitive task (digit subtraction). Gait speed, stride length, cadence, and the percentage of the gait cycle in double-limb stance (DS) were examined with a computerized stride analyzer. Results. When there was no second task, the mean stride length was less in the group with PD (1.29 m) than in the comparison group (1.51 m), and the mean gait speed was less in the group with PD (71.47 m/min) than in the comp...
Archives of physical medicine and rehabilitation, Sep 21, 2017
This pilot trial examined the feasibility of a randomised controlled study design and explored th... more This pilot trial examined the feasibility of a randomised controlled study design and explored the benefits of the set dancing intervention compared to usual care. Randomised controlled design, with participants randomised to Irish set dance classes or a usual care control group. Community based PARTICIPANTS: Individuals with idiopathic PD INTERVENTIONS: The dance group attended a 1.5 hour dancing class each week for 10 weeks and undertook a home dance programme for 20 minutes three times per week. The usual care control group continued with their usual care and daily activities. The primary outcome was feasibility; determined by recruitment rates, success of randomization and allocation procedures, attrition, adherence, safety, willingness of participants to be randomised, resource availability and cost. Secondary outcomes were motor function (UPDRS-3), quality of life (PDQ-39), functional endurance (six minute walk test) and balance (mini-BESTest). Ninety participants were randomi...
For people with idiopathic Parkinson's disease, does a 6-week, comprehensive, home exercise p... more For people with idiopathic Parkinson's disease, does a 6-week, comprehensive, home exercise program reduce falls and disability and improve health-related quality of life? Is the program cost-effective? Randomised, controlled trial with concealed allocation and assessor blinding. One hundred and thirty-three community-dwelling adults with Parkinson's disease. The experimental group completed a 6-week home program comprising progressive resistance strength training, movement strategy training and falls education. The control group completed 6 weeks of non-specific life skills training. Participants in both groups received weekly therapist-guided sessions for 6 consecutive weeks and a weekly self-directed home program. The primary outcome was the rate of falls, documented for the 12-month period immediately after therapy. Secondary outcomes were disability and health-related quality of life, assessed before and after intervention and at a 12-month follow-up. A total of 2255 fa...
Objectives The aim of the present study was to quantify the baseline variation in health-related ... more Objectives The aim of the present study was to quantify the baseline variation in health-related quality of life (HRQOL) between individuals with Parkinson’s disease (PD) referred to a comprehensive care program and those attending standard neurological services. Methods Participants included individuals with PD receiving conventional care from neurologists in private practice and individuals referred to a comprehensive inter-professional team hospital out-patient service. The Parkinson’s Disease Questionnaire-39 (PDQ-39) and the EuroQoL (EQ-5D-3L) were used to quantify HRQOL. Results Participants referred to an inter-professional service were more likely to have poorer indices on PD-specific measures but not for generic HRQOL compared with individuals receiving standard neurological services. After adjusting for age, gender, disease severity and duration, people referred to a comprehensive care program were more likely to have a higher score for the PDQ-39 summary index (PDQ-39 SI;...
Although hydrotherapy is one of the physical therapies adopted to optimize gait rehabilitation in... more 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&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;0.05) improvement in all movement planes. These data deserve attention for research directions promoting the optimal recovery and maintenance of walking ability.
People with Parkinson's disease often have walking difficulty, and this is likely to be exace... more People with Parkinson's disease often have walking difficulty, and this is likely to be exacerbated while walking in places in the community, where people are likely to face greater and more varied challenges. This study aims to understand the facilitators and the barriers to walking in the community perceived by people with Parkinson's disease. This qualitative study involved 5 focus groups (n = 34) of people with Parkinson's disease and their partners residing in metropolitan and rural regions in Queensland, Australia. Results found that people with PD reported to use internal personal strategies as facilitators to community walking, but identified primarily external factors, particularly the environmental factors as barriers. The adoption of strategies or the use of facilitators allows people with Parkinson's disease to cope so that participants often did not report disability.
Purpose: This study describes the health-related quality of life (HRQOL) of Australians living wi... more Purpose: This study describes the health-related quality of life (HRQOL) of Australians living with Parkinson disease (PD) and compares the findings to international reports. Methods: The Parkinson's Disease Questionnaire-39 (PDQ-39) was used to measure HRQOL in 210 individuals with PD living in Australia. In parallel, a tailored literature search identified previous studies on HROQL in people with PD. A quantitative meta-analysis with a random-effects model was used to compare the HRQOL of individuals with PD living in Australia and other countries. Results: The mean PDQ-39 summary index (SI) score for this sample of Australians with PD was 20.9 (SD 12.7). Ratings for the dimension of social support and stigma were significantly lower than ratings for bodily discomfort, mobility, activities of daily living, cognition, and emotional well-being. Comparing the Australian and international PD samples revealed a significant heterogeneity in overall HRQOL (I2=97%). The mean PDQ-39 SI...
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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