This exploratory study investigated meaning in life (MiL) in patients with progressive supranuclear palsy (PSP). In the "Schedule for Meaning in Life Evaluation" (SMiLE), respondents list individual MiL areas before rating their current satisfaction and importance with them (index of weighting [IoW], index of satisfaction [IoS], and index of weighted satisfaction [IoWS], range 0-100). A total of 38 patients with PSP completed the SMiLE (IoS: 68.6 ± 25.6, IoW: 79.6 ± 12.6, and IoWS: 69.2 ± 26.1). A representative sample of healthy participants (n = 977) scored significantly higher in the IoS (82.8 ± 14.7, P < .001), the IoW (85.6 ± 12.3, P = .006), and the IoWS (83.3 ± 14.8, P < .001). Compared to healthy individuals, patients with PSP were less likely to list health (P = .001) and more likely to list partner (P = .04), leisure (P = .01), home/garden (P = .01), and pleasure (P = .02). Patients with PSP seem to focus on supportive relationships and leisure, while the decreasing health status is becoming less important to them.

The living environment of patients suffering from progressive supranuclear palsy (PSP) has attracted little interest so far. The aim of this study was to record environmental factors and patient care structures of PSP patients in Germany. In light of this aim 100 questionnaires consisting of 28 questions were distributed in the journal PSP-Rundschau (PSP Review) in February 2009. Up to August 2009, 69 completed questionnaires had been received for evaluation. The main results were a long period up to diagnosis (3.33 ± 2.5 years) and early clinical symptoms noted by many patients which could be used for the differential diagnosis between PSP and Parkinson's disease. In 87% of the cases the patients were cared for by relatives at home mostly without professional nursing home care.It is hoped that this investigation has shed more insight into the life and disease-related symptoms of patients with PSP and can provide valuable information for the understanding and treatment of this devastating disease.

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