Dataset Information

Symptoms and quality of life in late stage Parkinson syndromes: a longitudinal community study of predictive factors.

ABSTRACT:

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.

SUBMITTER: Higginson IJ

PROVIDER: S-EPMC3492372 | biostudies-literature | 2012

REPOSITORIES: biostudies-literature

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Publications

Symptoms and quality of life in late stage Parkinson syndromes: a longitudinal community study of predictive factors.

Higginson Irene J IJ Gao Wei W Saleem Tariq Zaffer TZ Chaudhuri K Ray KR Burman Rachel R McCrone Paul P Leigh Peter Nigel PN

PloS one 20121107 11

<h4>Background</h4>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.<h4>Methods</h4>We recruited 82 patient ...[more]

PMID: 23144781

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Project description:Background and Aim: Eating Disorders (EDs) impact an estimated 15% of the global population and are linked to maladaptive defence-styles (coping strategies) and poorer mental health outcomes. Defence-styles have been grouped into immature, neurotic, and mature behaviours. Studies have yet to examine all three defence-styles in ED symptomatic individuals over an extended period of time. The current study aimed to investigate using converse analysis the relationships between defence-style and ED outcomes over a 5-years period. Methods: Participants (n = 216, mean age 33 years) were recruited through the Women's Eating and Health Literacy study, with the current study examining a 5-years period of two waves (year-4 and year-9). The current study tested associations over time between eating pathology (EDE-Q), psychological distress (K10), mental and physical health related quality of life (M/PHRQoL, SF-12), and defence-style (DSQ-40). Results: Mature, immature and neurotic defence-styles did not significantly change over 5 years. Over the same period, only PHRQoL significantly predicted mature defence-styles having positive effect. Both MHRQoL and PHRQoL significantly predicted immature defence-styles having positive and negative effects, respectively. Psychological distress, PHRQoL and weight concern significantly predicted neurotic defence-styles having positive effects except for psychological distress. PHRQoL, MHRQoL, restraint and eating concern significantly predicted overall eating pathology having positive effects except for PHRQoL and MHRQoL. Conversely, among the defence-style variables, over 5 years, both immature and neurotic defence-styles significantly predicted psychological distress having positive effects, immature and mature defence-styles significantly predicted MHRQoL having negative and positive effects, respectively, while only immature defence-styles significantly predicted overall eating pathology having positive effect. Conclusions: The results of the current study suggest that immaturity and neuroticism but not maturity were the defence-style variables predicting psychological distress over a 5-years period while conversely psychological distress predicted only neurotic defence styles. The findings of the current study may suggest that without intervention, mature, immature and neurotic defence-styles may largely remain immutable to significant shifts over time. Limitations in the current study included limited demographic representation. The current study is anticipated to generate considerations into treatments that could strengthen defence-styles in individuals with increased eating pathology.

Dataset Information

Symptoms and quality of life in late stage Parkinson syndromes: a longitudinal community study of predictive factors.

Background

Methods

Findings

Interpretation

Publications

Symptoms and quality of life in late stage Parkinson syndromes: a longitudinal community study of predictive factors.

Similar Datasets

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