Parkinson-plus patients--an unknown group with severe symptoms.

The Parkinson-plus syndromes, which include multiple system atrophy (MSA), progressive supranuclear palsy (PSP), and corticobasal degeneration (CBD), are still not well-known. Research concerning diagnosis and treatment is ongoing; nursing studies are lacking. Therefore, the aims of this study were to survey the patients about their symptoms, their previous contacts with physicians and other caregivers, the questions about their disease that were of most importance to them, and their perceived quality of life. The mapping caregivers and symptoms (MCAS) questionnaire, which was constructed for the study, and the Nottingham Health Profile (NHP), were used. Twenty-three patients participated. Early in the course of the disease Parkinson-plus patients needed to consult physicians from different specialties and many other professional caregivers because of a multitude of problems such as slow movements, weak voice, stiffness, dysphagia, muscle pain, and incontinence. The NHP revealed that many participants ran out of energy, and this affected their everyday lives and leisure time. As the disease progressed, palliative needs successively increased. Patients in all stages wanted to know about the disease course and their prognosis and about issues that could give them hope. In accordance with palliative care philosophy, caregivers can help direct the patients' hope from cure to a palliative goal, with a focus on quality of life.