Symptom prevalence, severity and palliative care needs assessment using the Palliative Outcome Scale: A cross-sectional study of patients with Parkinson’s disease and related neurological conditions

Abstract

Background: Palliative care is rarely being offered to patients with Parkinson’s disease. Aim: To assess symptom prevalence, severity and palliative care needs in advanced stages of Parkinsonism. Design: A cross-sectional survey using a palliative care assessment tool, the Palliative Outcome Scale was administered to patients. Setting/participants: Eight-two patients with a diagnosis of idiopathic Parkinson’s disease, multiple systems atrophy or progressive supranuclear palsy were included in the study. Results: Their mean age and disease stages 3–5 Hoehn and Yahr were 67 years and 4.1, respectively. Patients reported a mean of 10.7 (standard deviation = 3.9) physical symptoms. Over 80% had pain, fatigue, day time somnolence and problems with mobility. Other symptoms in 50%–80% included constipation, loss of bladder control, swallowing difficulties, drooling, breathlessness and sleep problems. Symptoms rated as causing severe problems were pain, fatigue, constipation and drooling. Assessment of mood revealed 70% of the patients felt anxiety and 60% had felt depressed. Eight-five per cent felt their families were anxious or worried about them. Thirty-eight per cent would have liked more information and 42% had practical problems that still needed to be addressed. There was a positive correlation between number of symptoms and disease severity (r = 0.39, p = 0.01). The total mean Palliative Outcome Scale score was 13.6 (standard deviation = 6.1), suggesting moderate palliative care needs. Conclusion: This is the first study to describe the care needs of people with Parkinson’s disease using the Palliative Outcome Scale tool. The burden of symptoms and concerns was high in advanced stages of disease. It might be appropriate that people severely affected by these conditions should be considered for referral to specialist palliative care services.