Scientific evaluation of community-based Parkinson's disease nurse specialists on patient outcomes and health care costs.
ABSTRACT To determine the effects of community based nurses specialising in Parkinson's disease on health outcomes and healthcare costs.
Two year randomised controlled trial in 438 general practices in nine randomly selected health authority areas of England.
1859 patients with Parkinson's disease identified by the participating general practices.
Survival, stand-up test, dot in square test, bone fracture, global health question, PDQ-39, Euroqol, and healthcare costs.
After two years 315 (17.3%) patients had died, although mortality did not differ between those who were attended by nurse specialists and those receiving standard care from their general practitioner (hazard ratio for nurse group v control group 0.91, 95% confidence interval 0.73 to 1.13). No significant differences were found between the two groups for the stand-up test (odds ratio 1.15, 0.93 to 1.42) and dot in square score (difference -0.7, -3.25 to 1.84). Scores on the global health question were significantly better in patients attended by nurse specialists than in controls (difference -0.23, -0.4 to -0.06), but no difference was observed in the results of the PDQ-39 or Euroqol questionnaires. Direct costs for patient health care increased by an average of pound2658 during the study, although not differentially between groups: the average increase was pound266 lower among patients attended by a nurse specialist (- pound981 to pound449).
Nurse specialists in Parkinson's disease had little effect on the clinical condition of patients, but they did improve their patients' sense of wellbeing, with no increase in patients' healthcare costs.
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ABSTRACT: Parkinson's disease imposes significant demands not only on patients but also on those people living and caring for them, who often have a reduction in their quality of life. The factors that may ameliorate these effects, such as an individual's personality, are not understood. Therefore, the aim of this study was to look at the relative contribution of caregiver personality on their quality of life, specifically attempting to identify those traits, which may be protective or harmful. Two hundred and seventy-four caregivers of patients with Parkinson's disease were included in this study. Caregivers were given questionnaires to complete, including the Big Five Inventory and the World Health Organisation Quality of Life BREF version. Univariate correlations demonstrated that depression and anxiety were the largest predictors of reduced quality of life amongst caregivers. However, after controlling for these potential confounds, conscientiousness was associated with enhanced psychological quality of life and openness positively predicted benefits in the environmental domain. Neuroticism was associated with reduced quality of life in the psychological domain. Thus, screening for neuroticism may help identify those caregivers who would benefit from intervention strategies, which could in the long term help reduce the need for nursing home placement of Parkinson's disease patients.BioMed research international. 01/2013; 2013:151872.
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ABSTRACT: suddick km & chambers s (2010) Journal of Nursing and Healthcare of Chronic Illness2, 292–301 The lived experience of sleep disturbance in people with Parkinson’s diseaseAims and objectives. This paper reports on an exploratory study of the lived experience of sleep disturbance in a group of men with Parkinson’s disease (PD).Background. Research into sleep disturbance in PD has focused on determining prevalence, causative factors, and relationships between the signs and symptoms. Sleep disturbance has not been previously explored from the perspective of the person experiencing it.Design. An interpretive phenomenological approach, aligned with Heideggerian hermeneutics was used.Method. A convenience sample of five people from the UK with PD participated in interviews in 2007–2008. Interviews were transcribed and data thematically analysed.Results. The themes that emerged regarding sleep disturbance in PD were: ‘good and bad’ sleep, a worsening journey, the experience of uncertainty, and the experience of loss.Conclusions. Sleep disturbance and ‘good and bad’ sleep, had significant implications for the person with PD and their carer. People with PD may accept or fight their sleep disruption, use, restrict, or avoid activity, and give up hobbies and sharing the marital bed. Sleep disturbance meant being part of a worsening journey, and experiencing loss and uncertainty. These may be inseparable essences of living with a progressive neurological condition.Relevance to clinical practice. Sleep disturbance needs more recognition and improved management. Health professionals may need to better consider issues around uncertainty and loss, and coping with the worsening journey. Services that develop coping styles, self efficacy, and self management, and introduce structured ways of providing education, advice, and ongoing support are needed. This supports the nurse specialist role in PD.Journal of Nursing and Healthcare of Chronic Illness 11/2010; 2(4):292 - 301.
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ABSTRACT: Currently, there is a new policy focus on the palliative and end-of-life care needs of people with progressive long-term neurological conditions (PLTNC). Perhaps because of the comparative rarity of these diseases, which often have long and unpredictable illness trajectories, little dialogue has taken place to date about the associated care needs. This paper reviews some of the key challenges raised in providing care for people with PLTNC, highlighting the complex problems faced by people affected by these conditions and the challenges these pose for care delivery in the community. In reviewing the literature and policy documents it is clear that there is wide scope for further research. The authors conclude with an overview of a study currently being undertaken at the University of Nottingham to explore these issues further. The aim of the study is to work collaboratively with health and social care professionals working with service users with advanced neurological conditions (especially Huntington's disease) and their carers to develop recommendations for best practice and insights into the applicability of interventions to enhance palliative and endof-life care within this client group.Journal of Care Services Management. 09/2007; 2(1):92-102.