Abstract

Parkinson's disease (PD) incidence and prevalence, particularly in Western countries, is greater in rural areas. Despite several epidemiological studies on PD in Australia, there are few publications addressing specific issues facing people with Parkinson's disease (PWP) in regional, rural and remote areas. This study looked at the dynamics of healthcare delivery to PWP and their carers in and around a regional New South Wales centre. Qualitative analysis of rural and regional healthcare delivery to PWP involved five participant groups. Literature searches via electronic and medical databases were performed to provide a foundation for focus group questions, semi-structured interviews and questionnaires. Volunteers from five groups: PWP, carers, allied health professionals (AHP), GPs and neurologists participated after recruitment via pamphlets, newsletters, postal invitation, public advertisements and preliminary talks. Data analysis highlighted a lack of relevant facilities, funding, available health staff and awareness of information regarding beneficial services for PWP and their carers. With few available neurologists, the roles of GP and AHP were emphasized in consumer focus groups as being most significant in a regional and rural setting. Transport, and geographical and financial issues were also significant in these areas. Psychological issues, dementia and memory loss were considered to be as debilitating as the overt motor symptoms of PD. The study found that the management of PD in regional NSW was highly variable, depending on geographical location and liaison among GPs, neurologists, AHPs, carers and PWP. Enhanced communication is recommended among PD stakeholders in regional NSW. This study provided a microcosmic view of the issues revealed by the very limited literature available on Australia's rural and regional healthcare delivery to PWP and their carers. It highlighted the lack of health staff, funding and information for relevant stakeholders, as well as PWP's desire for increased input from medical practitioners and the ancillary sectors. While this study did not directly compare rural with metropolitan PD services, it was inferred from all participant groups that regional and rural areas are disadvantaged in terms of medical staff and facilities, hindering timely diagnosis, management and treatment. The findings have implications for all stakeholders in the care of rural patients with PD.

Highlights

  • Parkinson’s disease (PD) incidence and prevalence, in Western countries, is greater in rural areas

  • The theme areas from the people with Parkinson’s disease (PWP) group are discussed and summarised (Table 3), with questions asked about diagnosis and medication, frequency of medical visits, the roles of GPs and neurologists, interaction with allied health professionals (AHP) and available supports

  • This study provides a microcosmic view of the issues revealed by the literature available on rural and regional (RR) Australia’s healthcare delivery to PWP and their carers

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Summary

Introduction

Parkinson’s disease (PD) incidence and prevalence, in Western countries, is greater in rural areas. This study provided a microcosmic view of the issues revealed by the very limited literature available on Australia’s rural and regional healthcare delivery to PWP and their carers. It highlighted the lack of health staff, funding and information for relevant stakeholders, as well as PWP’s desire for increased input from medical practitioners and the ancillary sectors. Peters et al used a three-step algorithm to examine GP estimation of patients with idiopathic PD and estimated the prevalence to be 145 per 100 000 in Queensland, Australia[5] They cited McCann et al who estimated the prevalence of PD in the rural town of Nambour on Queensland’s Sunshine Coast to be 415 per 100 0006. Both Access Economics and Peters et al highlighted the difficulty of making an accurate estimation of prevalence and noted a paucity of studies

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