How common and what are the determinants of sub-optimal care for Parkinson’s disease patients: The Milton Keynes community study

Abstract

Objectives

Limited data currently exists within the UK addressing the level of Parkinson’s disease (PD) healthcare provision. We investigated whether care for PD patients in a UK community met national guidelines, and the determinants of sub-optimal care for this patient group.

Methods

340 PD patients were identified from a population of 242,606 (crude prevalence 140 per 100,000 (95% CI 126–156 per 100,000), age-adjusted prevalence 199 per 100,000 (95% CI 178–221 per 100,000)). 248 out of 340 (73%) PD patients identified took part, completing rating scales assessing cognitive, non-motor and sociodemographic variables.

Results and conclusions

9% of patients had never seen a neurologist for their PD and 18.5% were sub-optimally managed; defined as (a) delay between initial diagnosis and first consultation by a specialist >1 year and (b) patients who had not had specialist PD review for >1 year. Older age, poor cognition and worse mobility were major factors in determining sub-optimal care whilst lower education level and tremor as initial symptom were more modest predictors. 20% of patients had been started on dopaminergic therapies including ergot-derived agonists by their GP prior to referral and less than a third had seen allied health professionals throughout their illness. Further work is required to test whether these findings are generalisable across the country and identify what can be done to ensure equal access to specialist care so that all PD patients have access to best practice.

Introduction

Several European and American guidelines currently exist for the diagnosis and subsequent management of PD patients [1], [2], [3], [4], [5], [6], [7]. These clinical practice guidelines highlight the difficulties of early and accurate diagnosis of PD, clinical features of which may resemble other parkinsonian syndromes such as multiple system atrophy, drug-induced parkinsonism and vascular parkinsonism. However, reasonably accurate clinical diagnosis of PD based on clinical features and response to anti-parkinsonian medications can be achieved, particularly when made by a physician specialising in movement disorders [1], [3], [4]. Because of this, many national PD guidelines recommend that all patients with suspected PD be referred by their general practitioner (GP) to a movement disorder specialist before treatment is started, and have ongoing specialist review throughout their illness. PD patients should also have regular access to specialist care and rehabilitation interventions including physiotherapy, occupational therapy, speech and language therapies and palliative care services [2], [3], [5], [8].

While some studies have shown that movement disorder specialist involvement improves the quality of care for PD patients compared to non-neurologist involvement [9], primary care physicians frequently disagree with neurologists, preferring less specialist involvement in the care of their patients with neurological conditions [10]. Furthermore, attitudes and barriers to use of clinical practice guidelines among neurologists may prevent local implementation [11]. The aim of this study was to provide timely data on the current level of healthcare provision for PD patients in a UK community, and whether this meets recommended National Institute of Clinical Excellence (NICE) guidelines [2]. Despite considerable financial constraints, there is only limited data in the UK addressing the current level of healthcare provision to PD patients in the community. Hence, the financial and manpower costs in implementing NICE guidelines remain largely unknown. We aimed to investigate whether there are any differences between the PD patients referred by their GP for joint specialist PD care and those hitherto not referred, or in whom there was a considerable delay from GP diagnosis to subsequent referral. Whilst the absolute rates of referral may differ across different parts of the UK due to accessibility of specialist services, it is likely that clinical characteristics that determine referral are generalisable to other parts of the UK and will provide insight into what factors act as barriers to equitable access to healthcare.