Social and clinical determinants of quality of life in Parkinson’s disease in Austria: a cohort study

Winter, Yaroslav; Campenhausen, Sonja von; Gasser, Julia; Seppi, Klaus; Reese, Jens-P.; Pfeiffer, Karl-Peter; Bötzel, Kai; Oertel, Wolfgang H.; Dodel, Richard; Poewe, Werner

doi:10.1007/s00415-009-5389-7

Cited by 52 publications

(41 citation statements)

References 38 publications

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“…Another social parameter positively associated with HrQoL was the number of people in the patient's household. Interestingly, this finding corresponds well with results of studies in idiopathic PD [6] . Similarly, as in idiopathic PD, we suggest that a higher number of people in the household improves the availability of home care provided by family members (informal care).…”

Section: Discussionsupporting

confidence: 82%

“…Representing the impact of a disease on a person's self-perceived well-being, HrQoL is an important aspect in the healthcare of chronic diseases such as neurodegenerative disorders. The majority of studies evaluating HrQoL in parkinsonian disorders concentrated on idiopathic PD [6][7][8][9][10][11][12] and only a few investigated APS [15,16,18,22] .…”

Section: Discussionmentioning

confidence: 99%

“…In the last decade, a large number of studies evaluated HrQoL in PD in different countries [6][7][8][9][10][11][12][13][14] . In contrast, only a few studies evaluated HrQoL in MSA and PSP ( table 1 ).…”

Section: Health-related Quality Of Life Inmentioning

confidence: 99%

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Health-Related Quality of Life in Multiple System Atrophy and Progressive Supranuclear Palsy

Winter¹,

Spottke²,

Stamelou³

et al. 2011

Neurodegener Dis

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Objective: Multiple system atrophy (MSA) and progressive supranuclear palsy (PSP), known as atypical parkinsonian syndromes (APS), are neurodegenerative disorders with severe disability and decreased life expectancy. Little is known about the health-related quality of life (HrQoL) and its determinants in patients with those disorders. The objective of our cross-sectional study was to evaluate the HrQoL in patients with APS and to identify the determinants of HrQoL. Methods: A total of 101 consecutive patients with MSA (n = 54) and PSP (n = 47) were recruited in four German neurological centers. Disease severity was assessed using the Hoehn and Yahr stages and the Unified MSA Rating Scale. The HrQoL was evaluated using the EuroQol instrument (EQ-5D and EQ-VAS). Independent determinants of HrQoL were identified in multiple regression analyses. Results: The mean EQ-VAS score was 52% lower than that reported for the general population (36.9 ± 18.3 vs. 77.4 ± 19.0). Of the study participants, 63% reported severe problems in at least one dimension of the EQ-5D. Cerebellar dysfunction was associated with a more considerable reduction of HrQoL. Independent determinants of reduced HrQoL were female gender, <12 years of education, disease severity, a decreased number of persons in the household and depression. Conclusions: The HrQoL in MSA and PSP is considerably reduced. While therapeutic options in the treatment of motor symptoms remain restricted, greater attention should be paid to the treatment of depression, which was identified among independent determinants of HrQoL. Independent determinants of HrQoL should be considered when developing healthcare programs aimed at improving the HrQoL in APS.

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Section: Discussionsupporting

confidence: 82%

Section: Discussionmentioning

confidence: 99%

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Health-Related Quality of Life in Multiple System Atrophy and Progressive Supranuclear Palsy

Winter¹,

Spottke²,

Stamelou³

et al. 2011

Neurodegener Dis

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“…In comparison, the HRQoL related to mental health is more severely impaired in neurodegenerative diseases (e.g. Parkinson's disease, Huntington's disease) [3,17,40,44,45]. In our study, the HRQoL as measured by the SF-36 was most affected in ALS and least affected in MG. Padua et al [31] investigated the HRQoL in MG and found much lower scores in the domains of the SF-36.…”

Section: Discussionmentioning

confidence: 53%

“…Depression was also found to be an important determinant of the HRQoL in other chronic neurological diseases, such as Parkinson's disease and Huntington's disease [3,17,40,44,45]. Interestingly, age was among the independent HRQoL-predictors in MG but not in ALS.…”

Section: Discussionmentioning

confidence: 88%

Health-related quality of life in ALS, myasthenia gravis and facioscapulohumeral muscular dystrophy

et al. 2010

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Neuromuscular disorders are rare diseases with a chronic and debilitating course. Unfortunately, data on the health-related quality of life (HRQoL) in neuromuscular diseases are limited. The objective of this multicentre cross-sectional study was to compare the HRQoL in patients with amyotrophic lateral sclerosis (ALS), facioscapulohumeral muscular dystrophy (FSHD) and myasthenia gravis (MG) and to identify the determinants of the HRQoL in these diseases. We recruited 91 consecutive outpatients with ALS (n = 37), FSHD (n = 17) or MG (n = 37) in seven specialized German health centres. The HRQoL was determined using the 36-Item Short Form Health Survey (SF-36) and the EuroQol (EQ-5D). Independent predictors of the HRQoL were identified using multiple regression analysis. The HRQoL in all domains of the SF-36, except for bodily pain, was significantly reduced. The domains related to physical health (physical functioning, physical role) were most affected. The EQ-5D-index score was most reduced in ALS (0.54) and least reduced in MG (0.89). Independent predictors of a reduced HRQoL were disease severity and depression in ALS, and disease severity, depression, older age and increased body-mass index in MG. The patterns of HRQoL-impairment in neuromuscular disorders share some common features, such as a more pronounced reduction in the HRQoL related to physical health, but there are a number of disease-specific features that should be considered in outcomes of clinical trials and treatment guidelines. In addition to the treatment of motor symptoms, greater attention should be paid to the treatment of depression, which was found to be among the independent predictors of the HRQoL in ALS and MG.

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Understanding, Impact, and Communication of “Off” Periods in Parkinson's Disease: A Scoping Review

Rastgardani

Armstrong

Gagliardi

et al. 2018

Movement Disord Clin Pract

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Background Off periods are a common and disabling symptom of Parkinson's disease. We reviewed published research on understanding, impact, and communication regarding off periods to identify issues warranting further research. Methods We performed a scoping review, searching MEDLINE, EMBASE, Cochrane Library, CINAHL, and PsycINFO from 2006 to January 2018 for studies examining the impact of, understanding of, or communication about off periods. Results Twenty‐six papers met eligibility criteria. Twenty‐three studies evaluated the impact or experience of off periods in patients, three evaluated the impact upon carepartners, two papers addressed understanding of off periods, one study evaluated communication about off periods, and three studies evaluated a facilitator of communication about off periods. The findings indicate that (1) off periods are among the most troublesome symptoms to patients and that their impact on activities is broad; (2) the understanding of off periods by patients, carepartners, and nurses may be suboptimal; and (3) questionnaires hold promise as a mechanism for facilitating communication given the findings that they may enhance the detection of off periods and are rated as useful by physicians. No studies evaluated interventions to promote knowledge about off periods, and no studies identified barriers of communication about off periods. Conclusions There is a paucity of knowledge regarding the lived experiences of off periods, particularly for carepartners. Additionally, little knowledge exists in the literature regarding understanding of and communication about off periods between patients or carepartners and treating physicians. Further research is required to explore these issues to ultimately improve the treatment of off periods.

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Social and clinical determinants of quality of life in Parkinson’s disease in Austria: a cohort study

Cited by 52 publications

References 38 publications

Health-Related Quality of Life in Multiple System Atrophy and Progressive Supranuclear Palsy

Health-Related Quality of Life in Multiple System Atrophy and Progressive Supranuclear Palsy

Health-related quality of life in ALS, myasthenia gravis and facioscapulohumeral muscular dystrophy

Understanding, Impact, and Communication of “Off” Periods in Parkinson's Disease: A Scoping Review

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