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Symptoms and Quality of Life in Late Stage Parkinson Syndromes: A Longitudinal Community Study of Predictive Factors

BACKGROUND: 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). There is little longitudinal data of people with late stage disease to understand levels o...

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Autores principales: Higginson, Irene J., Gao, Wei, Saleem, Tariq Zaffer, Chaudhuri, K. Ray, Burman, Rachel, McCrone, Paul, Leigh, Peter Nigel
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2012
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3492372/
https://www.ncbi.nlm.nih.gov/pubmed/23144781
http://dx.doi.org/10.1371/journal.pone.0046327
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author Higginson, Irene J.
Gao, Wei
Saleem, Tariq Zaffer
Chaudhuri, K. Ray
Burman, Rachel
McCrone, Paul
Leigh, Peter Nigel
author_facet Higginson, Irene J.
Gao, Wei
Saleem, Tariq Zaffer
Chaudhuri, K. Ray
Burman, Rachel
McCrone, Paul
Leigh, Peter Nigel
author_sort Higginson, Irene J.
collection PubMed
description BACKGROUND: 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). 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. METHODS: We 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. FINDINGS: Over 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. INTERPRETATION: The 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.
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spelling pubmed-34923722012-11-09 Symptoms and Quality of Life in Late Stage Parkinson Syndromes: A Longitudinal Community Study of Predictive Factors Higginson, Irene J. Gao, Wei Saleem, Tariq Zaffer Chaudhuri, K. Ray Burman, Rachel McCrone, Paul Leigh, Peter Nigel PLoS One Research Article BACKGROUND: 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). 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. METHODS: We 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. FINDINGS: Over 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. INTERPRETATION: The 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. Public Library of Science 2012-11-07 /pmc/articles/PMC3492372/ /pubmed/23144781 http://dx.doi.org/10.1371/journal.pone.0046327 Text en © 2012 Higginson et al http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are properly credited.
spellingShingle Research Article
Higginson, Irene J.
Gao, Wei
Saleem, Tariq Zaffer
Chaudhuri, K. Ray
Burman, Rachel
McCrone, Paul
Leigh, Peter Nigel
Symptoms and Quality of Life in Late Stage Parkinson Syndromes: A Longitudinal Community Study of Predictive Factors
title Symptoms and Quality of Life in Late Stage Parkinson Syndromes: A Longitudinal Community Study of Predictive Factors
title_full Symptoms and Quality of Life in Late Stage Parkinson Syndromes: A Longitudinal Community Study of Predictive Factors
title_fullStr Symptoms and Quality of Life in Late Stage Parkinson Syndromes: A Longitudinal Community Study of Predictive Factors
title_full_unstemmed Symptoms and Quality of Life in Late Stage Parkinson Syndromes: A Longitudinal Community Study of Predictive Factors
title_short Symptoms and Quality of Life in Late Stage Parkinson Syndromes: A Longitudinal Community Study of Predictive Factors
title_sort symptoms and quality of life in late stage parkinson syndromes: a longitudinal community study of predictive factors
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3492372/
https://www.ncbi.nlm.nih.gov/pubmed/23144781
http://dx.doi.org/10.1371/journal.pone.0046327
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