title: What matters to people with Parkinson's disease living in Australia?
abstract: Patient-centred care is increasingly being recognised as an integral aspect of improving the quality of health care services. There has been a recent interest in taking a patient-centred approach to Parkinson's disease (PD) care by involving patients in shared decision making, as well as providing access to multidisciplinary teams of medical practitioners, PD nurse specialists, and allied health professionals. However, to our knowledge there are no data regarding patient preferences for interventions in PD management. The present study examined the relative importance of issues regarding quality of life for people living with PD in Australia using a self-administered survey. Overall, respondents ranked more research funding in PD (mean rank, 340.42) as the most important issue, access to PD nurses (285.50) in second place, followed by access to multidisciplinary facilities/clinics with allied health professionals (283.39) in third place, subsidised PD treatments (233.50) in fourth place, and better general practitioner education (184.69) as the least important issue of the options offered. There was a statistically significant difference between the five issues (H[4] = 65.38, p < 0.001). Within the framework of patient-centred care, public funding allocations perhaps should be based on what patients want. As such, these findings suggest that for people living with a chronic, progressive, incurable illness, research is highly valued.
authors.affiliation: Sydney Medical School, The University of Sydney, Sydney, NSW, Australia; Brain and Mind Research Institute, Parkinson's Disease Research Clinic, The University of Sydney, 94 Mallett Street, Camperdown, Sydney, NSW 2050, Australia.
authors.forename: Joanna M Z
authors.initials: JM
authors.lastname: Lee
authors.affiliation: Brain and Mind Research Institute, Parkinson's Disease Research Clinic, The University of Sydney, 94 Mallett Street, Camperdown, Sydney, NSW 2050, Australia.
authors.forename: James M
authors.initials: JM
authors.lastname: Shine
authors.affiliation: Sydney Medical School, The University of Sydney, Sydney, NSW, Australia; Brain and Mind Research Institute, Parkinson's Disease Research Clinic, The University of Sydney, 94 Mallett Street, Camperdown, Sydney, NSW 2050, Australia; Royal Prince Alfred Hospital, Department of Neurology, Camperdown, Sydney, NSW, Australia. Electronic address: simonl@med.usyd.edu.au.
authors.forename: Simon J G
authors.initials: SJ
authors.lastname: Lewis
mesh_terms: D000368:Aged; D001315:Australia; D003657:Decision Making; D006801:Humans; D010300:Parkinson Disease / Q000523:psychology*; D057240:Patient Preference / Q000523:psychology / Q000706:statistics & numerical data*; D018802:Patient-Centered Care / Q000379:methods*; D011788:Quality of Life / Q000523:psychology*
keywords: Australia; Health policy; Parkinson’s disease; Patient-centred care; Quality of life