Experience of care for Parkinson's disease in European countries: a survey by the European Parkinson's Disease Association

Background: Few studies report on experience of care for Parkinson’s disease (PD) from patients’ own point of view. Methods: Analysis of a survey in 11 European countries on self-reported access to services and satisfaction with different aspects of care. Results: 1,775 people with PD (PwP) participated with disease duration ranging from <1 to 42 years. Initial referral to specialists had taken <3 months in most but medication reviews occurred every 3 months in only 10%, every 6 months in 37%, once a year in 40%, and every two years or less frequently in 13%. Waiting times to therapists were usually at ?4 months. Satisfaction with care was highest for involvement of PwP in decisions (63% of respondents satisfied) and involvement of family/carer (62%) followed by communication with PwP (57%), information received (54%), frequency of treatment reviews (52%), suitability of treatment for the individual condition and circumstances (52%), but lowest for availability and accessibility of treatment when needed (48%) and collaborations between healthcare professionals in delivering care (41% satisfied). The main factors associated with overall satisfaction scores with care were the overall satisfaction with initial consultation (r=0.26, p<0.0001), the sensitivity with which the diagnosis was communicated, the quantity of information provided (both r=0.24, p<0.0001) and the frequency of medication review (r=0.17, p<0.0001). Conclusion: More coordinated and responsive care, tailored to the individual, with regular and timely medication reviews and treatment referrals, is likely to improve satisfaction with care in current health care pathways.