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.

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 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; 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.

Group decision making in health care: a case study of multidisciplinary meetings

Recent studies have demonstrated that Multi-Disciplinary Meetings (MDM) practiced in some medical contexts can contribute to positive health care outcomes. The group reasoning and decision-making in MDMs has been found to be most effective when deliberations revolve around the patient’s needs, comprehensive information is available during the meeting, core members attend and the MDM is effectively facilitated. This article presents a case study of the MDMs in cancer care in a region of Australia. The case study draws on a group reasoning model called the Reasoning Community model to analyse MDM deliberations to illustrate that many factors are important to support group reasoning, not solely the provision of pertinent information. The case study has implications for the use of data analytics in any group reasoning context.

Ethically defensible decision-making in health care: challenges to traditional practice

The concept of paternalism is deeply entrenched in health care. Decision-making about health care can be extremely difficult at times, and many competing interests may influence the outcomes. However, ethically defensible practice aligns itself with acknowledging the patient's prima facie right to be treated as an autonomous individual. This includes the patient's right to make informed decisions or to decide that other(s), such as the close family, should make decisions on his or her behalf. (author abstract)

Decision making in health care: limitations of the substituted judgement principle

The substituted judgement principle is often recommended as a means of promoting the self-determination of an incompetent individual when proxy decision makers are faced with having to make decisions about health care. This article represents a critical ethical analysis of this decision-making principle and describes practical impediments that serve to undermine its fundamental purpose. These impediments predominantly stem from the informality associated with the application of the substituted judgement principle. It is recommended that the principles upon which decisions are made about health care for another person should be transparent to all those involved in the process. Furthermore, the substituted judgement principle requires greater rigour in its practical application than currently tends to be the case. It may be that this principle should be subsumed as a component of advance directives in order that it fulfils its aim of serving to respect the self-determination of incompetent individuals.

The phenomenon of resilience in crisis care mental health clinicians

The purpose of this study, undertaken in 2003, was to explore the phenomenon of resilience as experienced by Australian crisis care mental health clinicians working in a highly demanding, complex, specialized and stressful environment. For the purpose of this research, the term 'resilience' was defined as the ability of an individual to bounce back from adversity and persevere through difficult times. The six participants for this study were drawn from Melbourne metropolitan mental health organizations – the disciplines of nursing, allied health and medicine. A number of themes were explicated from the participants' interview transcripts – Participants identified the experience of resilience through five exhaustive descriptions, which included: 'The team is a protective veneer to the stress of the work'; Sense of self; Faith and hope; Having insight; and Looking after yourself. These exhaustive descriptions were integrated into a fundamental structure of resilience for clinicians in this role. The study's findings have the potential to inform organizations in mental health to promote resilience in clinicians, with the potential to reduce the risk of burnout and hence staff attrition, and promote staff retention and occupational mental health.

Exploring distributive justice in health care

The allocation of resources to providers and the way in which the resources are then prioritised to specific service areas and patients remain the critical ethical decisions which determine the type of health system a community receives. Heath care providers will never be given enough resources to satisfy all the demands placed upon them by a community that is becoming increasingly informed and demanding. This paper discusses the matter of justice as it relates to the distribution of health resources. It translates the theoretical constructs of distribution into a practical situation that arose at The Geelong Hospital. It is important to emphasise that the aim of giving the example is not necessarily to provide the right answer but rather to assist in determining what ought to be the questions.

Institutional and structural forms of HIV-related discrimination in health care : a study set in Beijing

This paper presents key findings of a situational analysis of institutional and structural levels of HIV/AIDS-related discrimination in Beijing, China, with a focus on the area of health care. Initially slow to respond to the presence of HIV, China has altered its approach and enacted strict legislative protection for people living with HIV/AIDS (PLWHA). In order to determine whether this has altered discrimination against PLWHA, this study examined existing legislation and policy, and interviewed key informants working in health care and PLWHA. The overall findings revealed that discrimination in its many forms continued to occur in practice despite China's generally strong legislative protection, and it is the actual practice that is hindering PLWHAs' access to health services. A number of legislative and policy gaps that allow discrimination to occur in practice were also identified and discussed. The paper concludes with a call to rectify specific gaps between legislation, policy and practice. An understanding of the underlying factors that drive discrimination will also be necessary for effective strategic interventions to be developed and implemented.

Contingent valuation in health care and the persistence of embedding effects without the warm glow

This paper reports a test of the presence of embedding effects in a health care contingent valuation study. A within-subject, mixed qualitative–quantitative approach was used to identify and explain the presence of embedding in estimates of willingness to pay for vaccinations. Embedding effects persisted despite controlling for known causes and did so even among respondents who perceived the effect to be anomalous. Results from the qualitative interviews suggest that embedding effects arise for varied reasons but might be indicative of incomplete preferences. It is questionable, however, whether survey techniques can be better designed to encourage values clarification.

Ethnic aged discrimination and disparities in health and social care : a question of social justice

Older overseas-born Australians of diverse cultural and language backgrounds experience significant disparities in their health and social care needs and support systems. Despite being identified as a 'special needs' group, the ethnic aged in Australia are generally underserved by local health and social care services, experience unequal burdens of disease and encounter cultural and language barriers to accessing appropriate health and social care compared to the average Australian-born population. While a range of causes have been suggested to explain these disparities, rarely has the possibility of cultural racism been considered. In this article, it is suggested that cultural racism be named as a possible cause of ethnic aged disparities and disadvantage in health and social care. It is further suggested that unless cultural racism is named as a structural mechanism by which ethnic aged disparities in health and social care have been created and maintained, redressing them will remain difficult.

The neglect of racism as an ethical issue in health care

Race and racism has been increasingly implicated in known disparities in the health and health care of racial, ethnic and cultural minorities groups. Despite the obvious ethical implications of this observation, racism as an ethical issue per se has been relatively neglected in health care ethics discourse. In this paper consideration is given to addressing the following questions: What is it about racism and racial disparities in health and health care that these command our special moral scrutiny? Why has racism per se tended to be poorly addressed as an ethical issue in health care ethics discourse? And why, if at all, must racism be addressed as an ethical issue in addition to its positioning as a social, political, cultural and legal issue? It is suggested that unless racism is reframed and redressed as a pre-eminent ethical issue by health service providers, its otherwise preventable harmful consequences will remain difficult to identify, anticipate, prevent, manage, and remedy.