Sze-Ee Soh

Determinants of health-related quality of life in Parkinson's disease: a systematic review.

This systematic review critically evaluates the literature to identify the demographic and clinical factors that predict the health-related quality of life (HRQOL) of people with Parkinsons disease (PD). Understanding how these factors relate to HRQOL in people with PD may assist clinicians minimise the functional and social impact of the disease by optimising their assessment and clinical decision making processes. A tailored search strategy in six databases identified 29 full-text reports that fulfilled the pre-defined inclusion and exclusion criteria. The quality of included studies was assessed by two independent reviewers using a customized assessment form. A best-evidence synthesis was used to summarise the demographic and clinical factors that were examined in relation to HRQOL. Depression was the most frequently identified determinant of HRQOL in people with idiopathic PD. Disease severity and disease disability were also found to be predictive of poor HRQOL outcomes in many studies. The motor symptoms that contributed most often to overall life quality were gait impairments and complications arising from medication therapy. To minimise the impact of PD on HRQOL, it may be necessary to consider the extent to which demographic factors and motor and non-motor symptoms contribute to life quality.

Measuring quality of life in Parkinson’s disease : selection of-an-appropriate health-related quality of life instrument.

There is growing awareness of the need to measure quality of life (QOL) in people with Parkinsons disease during routine physiotherapy assessment. This paper highlights why it is important for clinicians to focus particularly on health-related QOL (HRQOL) when assessing people with this disabling and progressive neurological condition, and provides a guide for selection of the most appropriate instruments for measuring HRQOL. Using measures of health utility, health status and wellbeing, physiotherapists can better understand the social, physical and emotional consequences of Parkinsons disease.

Falls and mobility in Parkinson's disease: protocol for a randomised controlled clinical trial

BackgroundAlthough physical therapy and falls prevention education are argued to reduce falls and disability in people with idiopathic Parkinsons disease, this has not yet been confirmed with a large scale randomised controlled clinical trial. The study will investigate the effects on falls, mobility and quality of life of (i) movement strategy training combined with falls prevention education, (ii) progressive resistance strength training combined with falls prevention education, (iii) a generic life-skills social program (control group).Methods/DesignPeople with idiopathic Parkinsons disease who live at home will be recruited and randomly allocated to one of three groups. Each person shall receive therapy in an out-patient setting in groups of 3-4. Each group shall be scheduled to meet once per week for 2 hours for 8 consecutive weeks. All participants will also have a structured 2 hour home practice program for each week during the 8 week intervention phase. Assessments will occur before therapy, after the 8 week therapy program, and at 3 and 12 months after the intervention. A falls calendar will be kept by each participant for 12 months after outpatient therapy.Consistent with the recommendations of the Prevention of Falls Network Europe group, three falls variables will be used as the primary outcome measures: the number of fallers, the number of multiple fallers and the falls rate. In addition to quantifying falls, we shall measure mobility, activity limitations and quality of life as secondary outcomes.DiscussionThis study has the potential to determine whether outpatient movement strategy training combined with falls prevention education or progressive resistance strength training combined with falls prevention education are effective for reducing falls and improving mobility and life quality in people with Parkinsons disease who live at home.Trial registrationAustralia and New Zealand Clinical Trials Register (ANZCTR): ACTRN12606000344594

Protocol for a home-based integrated physical therapy program to reduce falls and improve mobility in people with Parkinson’s disease

BackgroundThe high incidence of falls associated with Parkinson’s disease (PD) increases the risk of injuries and immobility and compromises quality of life. Although falls education and strengthening programs have shown some benefit in healthy older people, the ability of physical therapy interventions in home settings to reduce falls and improve mobility in people with Parkinson’s has not been convincingly demonstrated.Methods/design180 community living people with PD will be randomly allocated to receive either a home-based integrated rehabilitation program (progressive resistance strength training, movement strategy training and falls education) or a home-based life skills program (control intervention). Both programs comprise one hour of treatment and one hour of structured homework per week over six weeks of home therapy. Blinded assessments occurring before therapy commences, the week after completion of therapy and 12 months following intervention will establish both the immediate and long-term benefits of home-based rehabilitation. The number of falls, number of repeat falls, falls rate and time to first fall will be the primary measures used to quantify outcome. The economic costs associated with injurious falls, and the costs of running the integrated rehabilitation program from a health system perspective will be established. The effects of intervention on motor and global disability and on quality of life will also be examined.DiscussionThis study will provide new evidence on the outcomes and cost effectiveness of home-based movement rehabilitation programs for people living with PD.Trial registrationThe trial is registered on the Australian and New Zealand Clinical Trials Registry (ACTRN12608000390381).

Examination of an eHealth literacy scale and a health literacy scale in a population with moderate to high cardiovascular risk: Rasch analyses.

Introduction Electronic health (eHealth) strategies are evolving making it important to have valid scales to assess eHealth and health literacy. Item response theory methods, such as the Rasch measurement model, are increasingly used for the psychometric evaluation of scales. This paper aims to examine the internal construct validity of an eHealth and health literacy scale using Rasch analysis in a population with moderate to high cardiovascular disease risk. Methods The first 397 participants of the CONNECT study completed the electronic health Literacy Scale (eHEALS) and the Health Literacy Questionnaire (HLQ). Overall Rasch model fit as well as five key psychometric properties were analysed: unidimensionality, response thresholds, targeting, differential item functioning and internal consistency. Results The eHEALS had good overall model fit (χ2 = 54.8, p = 0.06), ordered response thresholds, reasonable targeting and good internal consistency (person separation index (PSI) 0.90). It did, however, appear to measure two constructs of eHealth literacy. The HLQ subscales (except subscale 5) did not fit the Rasch model (χ2: 18.18–60.60, p: 0.00–0.58) and had suboptimal targeting for most subscales. Subscales 6 to 9 displayed disordered thresholds indicating participants had difficulty distinguishing between response options. All subscales did, nonetheless, demonstrate moderate to good internal consistency (PSI: 0.62–0.82). Conclusion Rasch analyses demonstrated that the eHEALS has good measures of internal construct validity although it appears to capture different aspects of eHealth literacy (e.g. using eHealth and understanding eHealth). Whilst further studies are required to confirm this finding, it may be necessary for these constructs of the eHEALS to be scored separately. The nine HLQ subscales were shown to measure a single construct of health literacy. However, participants’ scores may not represent their actual level of ability, as distinction between response categories was unclear for the last four subscales. Reducing the response categories of these subscales may improve the ability of the HLQ to distinguish between different levels of health literacy.

Health-related quality of life of australians with Parkinson disease: a comparison with international studies.

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 Parkinsons 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 (I(2)=97%). The mean PDQ-39 SI scores for Australians were lower, indicating better HRQOL relative to samples from other countries. CONCLUSIONS This Australian sample with PD perceived their HRQOL as poor, although it was less severely compromised than that of international samples. While further research is required, these findings can inform the clinical decision-making processes of physiotherapists.

Health-related quality of life in people with Parkinson’s disease receiving comprehensive care

Objectives The aim of the present study was to quantify the baseline variation in health-related quality of life (HRQOL) between individuals with Parkinsons 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 Parkinsons 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; mean±s.d. 27.2±11.0; 95% confidence interval (CI) 25.5, 28.9) compared with individuals receiving standard neurological services (PDQ-39 SI mean 0.2±12.8; 95% CI 18.0, 22.4). Conclusions Compared with those attending standard neurological out-patient clinics, individuals referred to an inter-professional PD program are more likely to have advanced disease and poorer HRQOL. This observation has implications for the way in which people with PD are recruited for future clinical trials, because uneven recruitment from different sources may be a potential source of bias. What is known about the topic? Given that PD is associated with a complex array of motor and non-motor symptoms, an inter-professional team approach to service provision is argued to be optimal for individuals living with this debilitating condition. What does this paper add? This paper has shown that individuals referred to an inter-professional service are more likely to have advanced disease and complex care needs. Compared with those referred to neurologist private clinics, those referred to an inter-professional clinic had less functional independence and lower PD-specific HRQOL when first assessed, even after controlling for disease severity. What are the implications for practitioners? When recruiting for future trials to examine the efficacy of multidisciplinary care programs in people with PD, it is important to take into account whether these individuals have been referred to an inter-professional service. There may be a potential source of bias if participants were recruited predominantly from such services.

The Health Profile of People Living with Parkinson’s Disease Managed in a Comprehensive Care Setting

Background: Globally there are few reports of the impairments, disabilities and medications used in people living with idiopathic Parkinson’s disease. Caregiver characteristics and caregiver burden have seldom been reported. We examined the health status in a large cohort of people living with Parkinson’s disease and their caregivers managed in a comprehensive health care setting. Methods/Design: A prospective, cross sectional analysis of impairments, disabilities and Parkinson’s disease medication use was conducted in a sample of 100 people with Parkinson’s disease rated I-IV on the modified Hoehn & Yahr scale. Participants were recruited from the Victorian Comprehensive Parkinson Program in Melbourne, Australia. Their caregivers were invited to provide their views on the burden of care, services provided and support received. Results: The severity of impairments and disabilities was strongly associated with disease duration (mean of 5.5 years). Those with long standing disease or more severe disease also used more Parkinson’s disease medications and participated in fewer social roles than people who were newly diagnosed or mildly affected. The severity of impairments was strongly correlated with limitations in performing activities of daily living. Limitations in performing daily activities were also found to be a significant contributing factor for health-related quality of life (PDQ-39 SI β=0.55, p=0.000; EQ-5D SI β=0.43, p=0.001). People with Parkinson’s disease lived at home with relatives. The average caregiver was a spouse or child providing approximately 3.5 hours of care per day, with the capacity to provide 9.4 hours per day and had provided care for four years. Additional support was high (63%) for 2.5 hours per day. Conclusion: The comprehensive care setting of this cohort describes a relatively benign condition despite a wide range of disease duration and severity. This report provides a baseline with which to compare other delivery models.

Promoting Physical Activity Among Older People in Hospital

This chapter outlines the issues and strategies for optimising the implementation of physical activity programmes for older people in hospital. It begins with an overview of the hospital environment and a profile of older people admitted to hospital, including how active they are. The research literature relating to the functional consequences of bed rest and factors influencing activity levels of older people in hospital is then reviewed. Barriers to physical activity at the level of the hospital system, staff and the older person are discussed. Following this, strategies to promote physical activity are presented along with learnings from the field of implementation science. Programmes should be tailored to individuals, integrated into existing workflows, and multi-faceted to optimise effectiveness.

Opportunities for cross-disciplinary care partnerships in physiotherapy

Physiotherapists have traditionally practised within a streambased paradigm, with assessment and care frequently aligned to core streams such as musculoskeletal, neurological, cardiorespiratory, and gerontological physiotherapy. However, opportunities to improve within-physiotherapy collaboration exist in many healthcare sectors. This would facilitate the provision of holistic healthcare that focuses on the whole person rather than the specific health condition. One contemporary example is the potential to develop cross-disciplinary care partnerships in the area of falls prevention and osteoarthritis (OA) management. Physiotherapists have excelled in the discrete fields of falls prevention and OA management, as leaders in the design and implementation of new intervention programs, in service delivery roles, and in the development of clinical practice guidelines and care standards. However, their roles in falls prevention and OA management have largely operated in parallel rather than in collaboration, despite much overlap in patient groups, risk factors and management strategies. There is opportunity to share learnings, resources and skills across the falls prevention and OA specialities. From a clinical perspective, this is particularly important because OA is prevalent among older people who fall, and the physical impairments associated with OA are also pertinent risk factors for falls. In practice, assessment of risk factors for falls and related patient education are not a routine part of OA management. We consider that physiotherapists have a key role to play in this space, with regard to integrating falls risk assessmentprocedures, initiating cross-referral pathways (eg, to effective falls prevention services) and expanding education for older people with OA to include falls risk awareness. Likewise, poorly managed pain associated with OA may inhibit an older person from participating in falls prevention exercise programs. It is therefore beneficial for physiotherapists working in falls prevention to be aware of current pain management recommendations for people with OA. Falls and OA both commonly affect older people. Falls are a leading cause of injury and hospitalisation among older age groups, and can result in a cascade of functional decline, culminating in the need for residential care. According to 2016 data from the landmark Global Burden of Disease Study, falls accounted for 4.4 million years lived with disability globally (representing 4.2% of total years lived with disability) and 3.6 million years of life lost worldwide (representing 1.3% of total years of life lost) among people aged 70 years. Figure 1 shows that the highest burden of falls is borne by older age groups. OA is the most common form of arthritis, with the hip and knee joints most frequently involved. OA predominantly affects older people, meaning the number of people with OA will undoubtedly grow as populations age. Using Australia as an example, people aged 65 years are projected to represent 58% of the OA population by the year 2030, up from 52% in 2015.