This is a *very* interesting article on quality of life in PSP and MSA. The research team is one of the top in the world studying PSP. (They are not as well known for their MSA research.)
The researchers use the term health-related quality of life (HrQoL). This term “describes different aspects of self-perceived well-being which are affected by…disease and its treatment.” “HrQoL is an important aspect in the healthcare of chronic diseases such as neurodegenerative disorders.”
Study participants completed a generic HrQoL instrument, the EQ-5D; this instrument has been validated for use in parkinsonian disorders. “The EQ-5D comprises five questions that relate to five dimensions of health: mobility, self-care, usual activities, pain/discomfort and anxiety/depression. Each dimension is divided into three levels of severity (1 = no problem, 2 = moderate problem, 3 = severe problem). … The study participants also rated their current HrQoL on a visual analogue scale (VAS thermometer type) ranging from 0 (worst imaginable health state) to 100 (best imaginable health state).”
One hundred and one German patients were initially recruited. Some patients were excluded. In the end, 86 patients completed the study — 18 MSA-C, 28 MSA-P, and 40 PSP.
The researchers found:
* Factors of reduced HrQoL were “female gender, <12 years of education, disease severity, a decreased number of persons in the household and depression.”
Regarding education, the authors note: “This may reflect insight and expectations of patients, which are known to have influence on quality of life in other chronic diseases.” And, the authors state: “educational programs on APS could contribute to improvement of HrQoL in these diseases.”
Disease severity was measured by the UMSARS IV (Unified MSA Rating Scale, part IV), even in the PSP patients. Depression was measured by the BDI (Beck Depression Inventory).
The authors argue that greater attention needs to be paid to the treatment of depression. Perhaps this conclusion was drawn because only 80% of the depressed patients were receiving adequate antidepressant therapy.
* “With increasing disease severity, the proportion of married patients decreased and the proportion of divorced patients rose.”
* “The dimensions [on the EQ-5D] most affected were ‘selfcare’ and ‘usual activities’. Severe problems in these dimensions were reported by 38.4 and 57.0% of the patients, respectively.”
* “[Pain] was more problematic in MSA than in PSP…”
I’ve copied the abstract below.
Robin
Neurodegenerative Diseases. 2011 May 12. [Epub ahead of print]
Health-Related Quality of Life in Multiple System Atrophy and Progressive Supranuclear Palsy.
Winter Y, Spottke AE, Stamelou M, Cabanel N, Eggert K, Höglinger GU, Sixel-Doering F, Herting B, Klockgether T, Reichmann H, Oertel WH, Dodel R.
Department of Neurology, Philipps University Marburg, Marburg, Germany.
Abstract
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.
Copyright © 2011 S. Karger AG, Basel.
PubMed ID#: 21576919 (see pubmed.gov for this abstract only)