Lack of information and access to advanced treatment for Parkinson’s disease patients

BACKGROUND: Parkinson’s disease (PD) patients’ own knowledge and experience and access to information, in relation to advanced treatment methods, are very limited. The aim of this study was to map out PD patients’ perception about various advanced treatment methods, their availability and regional differences in medical care, and to investigate patients’ experience of their medication and quality of life. METHODS: A survey was sent to 4886 PD patients of the Swedish Parkinson’s Disease Association covering demography, the patient’s illness, current treatment, received information about advanced treatment alternatives, and health status. Advanced PD was considered as patients diagnosed >5 years ago, using PD medication >5 times/day, and experiencing motor complications >2 hours/day. RESULTS: In total, 3327/4886 persons (68%) responded (57% men) of which 1300 (39%) were classified as having advanced PD. Mean age was 71 years with a median disease duration of 8 years. The treating physician was a neurologist (86%) but varied between counties (96% to 52%) and was most frequent in urban areas. Doctor appointments were 1.7 times/year with regional variation (2.1 to 1.1). Three out of four patients had heard of advanced treatment options and were interested, but were denied treatment. Only a small proportion of patients were informed of these by their physician. Nine percent were satisfied with their medication (including 4% of advanced patients). One third of patients experienced their general health as poor or very poor. CONCLUSION: The majority of Swedish PD patients are treated by neurologists. Annual numbers of doctors’ appointments were low in an international context and can partly be explained by the shortage of neurologists and other trained specialists. Doctors only provided a small proportion of patients with advanced therapy information, despite patients’ interest. Hence, improvement is warranted regarding doctor appointments, information about various advanced treatment options, and their availability.