Quality of life and care in Parkinson's disease

Seventy-two parkinsonian patients attending a subregional movement disorder clinic completed a novel questionnaire designed to examine their quality of life and care. Significant problems with housing, travel, holidays and hobbies were identified. Financial difficulties due to premature retirement and the complex benefit system were found. Many carers were ill but, even when hospitalised, patients were cared for in the community by friends and relatives. Few patients had been referred for paramedical therapies, in spite of considerable disability in some cases. Aids and adaptations were commonly in use without advice from an occupational therapist. The specialised clinic and Parkinson's disease nurse advisor were welcomed by many patients. Most were satisfied with their hospital care and general practitioner, but follow-up arrangements with general practitioners were variable. It is suggested that further research concentrates on the roles of physiotherapy, speech therapy, nurse advisors and social workers in the management of Parkinson's disease, and on the value of increased carer support, including respite care.