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Experience of care for Parkinson's disease in European countries: a survey by the European Parkinson's Disease Association
Author(s) -
Schrag A.,
Khan K.,
Hotham S.,
Merritt R.,
Rascol O.,
Graham L.
Publication year - 2018
Publication title -
european journal of neurology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.881
H-Index - 124
eISSN - 1468-1331
pISSN - 1351-5101
DOI - 10.1111/ene.13738
Subject(s) - medicine , family medicine , disease , parkinson's disease , health care , patient satisfaction , nursing , economics , economic growth
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.