Experience of care for Parkinson's disease in European countries: a survey by the European Parkinson's Disease Association. (16th August 2018)

• Record Type: Journal Article
• Authors: Schrag, A.; Khan, K.; Hotham, S.; Merritt, R.; Rascol, O.; Graham, L.
• Is Part Of: European journal of neurology. Volume 25:Number 12(2018)
• Page Start: 1410
• Page End: e120
• Publication Date: 2018-08-16
• Subjects: care -- Parkinson's disease -- patient experience -- patient‐reported outcome -- satisfaction; Neurology -- Periodicals; Nervous system -- Diseases -- Periodicals; 616.8
• DOI: 10.1111/ene.13738
• Languages: English
• ISSNs: 1351-5101

Abstract

Abstract : Background: Few studies report on the experience of care for patients with Parkinson's disease (PD) from their own point of view. Methods: An analysis was carried out of a survey in 11 European countries on self‐reported access to services and satisfaction with different aspects of care. Results: In all, 1775 people with PD (PwP) participated with disease duration ranging from <1 to 42 years. When referred to a specialist most were seen within 3 months but medication reviews occurred every 3 months in only 10%, every 6 months in 37%, once a year in 40% and every 2 years or less frequently in 13%. Waiting times to therapists were usually ≥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%) and 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 information provision, is likely to improve satisfaction with care in current healthcare pathways.