Abstract
BackgroundPalliative care is increasingly offered earlier in the cancer trajectory but rarely in Idiopathic Parkinson's Disease(IPD), Progressive Supranuclear Palsy(PSP) or Multiple System Atrophy(MSA). There is little longitudinal data of people with late stage disease to understand levels of need. We aimed to determine how symptoms and quality of life of these patients change over time; and what demographic and clinical factors predicted changes.MethodsWe recruited 82 patients into a longitudinal study, consenting patients with a diagnosis of IPD, MSA or PSP, stages 3–5 Hoehn and Yahr(H&Y). At baseline and then on up to 3 occasions over one year, we collected self-reported demographic, clinical, symptom, palliative and quality of life data, using Parkinson's specific and generic validated scales, including the Palliative care Outcome Scale (POS). We tested for predictors using multivariable analysis, adjusting for confounders.FindingsOver two thirds of patients had severe disability, over one third being wheelchair-bound/bedridden. Symptoms were highly prevalent in all conditions - mean (SD) of 10.6(4.0) symptoms. More than 50% of the MSA and PSP patients died over the year. Over the year, half of the patients showed either an upward (worsening, 24/60) or fluctuant (8/60) trajectory for POS and symptoms. The strongest predictors of higher levels of symptoms at the end of follow-up were initial scores on POS (AOR 1.30; 95%CI:1.05–1.60) and being male (AOR 5.18; 95% CI 1.17 to 22.92), both were more predictive than initial H&Y scores.InterpretationThe findings point to profound and complex mix of non-motor and motor symptoms in patients with late stage IPD, MSA and PSP. Symptoms are not resolved and half of the patients deteriorate. Palliative problems are predictive of future symptoms, suggesting that an early palliative assessment might help screen for those in need of earlier intervention.
Highlights
Idiopathic Parkinson’s Disease(IPD), Progressive Supranuclear Palsy(PSP) and Multiple System Atrophy(MSA) share many symptoms and signs in common, have profound motor and nonmotor symptoms and effects on quality of life, health care and personal costs [1,2,3,4,5]
The NNIPPS study, a randomised trial of Riluzole in MSA and PSP provides valuable information on the progression of disease, survival, cognition and some symptoms [5,8,12,13], but not the wide range of motor and non-motor problems that can be experienced in late stage disease [14]
Palliative care is offered to cancer patients early in the disease course and to people affected by amyotrophic lateral sclerosis in later stages of illness [15,16,17]
Summary
Idiopathic Parkinson’s Disease(IPD), Progressive Supranuclear Palsy(PSP) and Multiple System Atrophy(MSA) share many symptoms and signs in common, have profound motor and nonmotor symptoms and effects on quality of life, health care and personal costs [1,2,3,4,5]. We searched PubMed for articles using the keywords: (late stage OR advanced OR palliative OR terminal care OR end of life) AND (Parkinson’s OR MSA OR PSP) AND (longitudinal OR cohort) AND (quality of life OR Symptoms OR psychological distress). Lack of information about the trajectory of symptoms and quality of life in late stage IPD, PSP and MSA means that it is not clear: (a) whether patients’ and care-givers’ needs are adequately met by existing services or whether augmentation by specialist palliative care services would be helpful; and (b) if the latter is the case, what would be the optimal strategy for referral in relation to patient and care-giver needs and disease evolution? Palliative care is increasingly offered earlier in the cancer trajectory but rarely in Idiopathic Parkinson’s Disease(IPD), Progressive Supranuclear Palsy(PSP) or Multiple System Atrophy(MSA). We aimed to determine how symptoms and quality of life of these patients change over time; and what demographic and clinical factors predicted changes
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