Quality of life in Polish patients with multiple sclerosis

Abstract

Purpose

This study is a pilot evaluation of the quality of life (QoL) in Polish patients with multiple sclerosis (MS).

Material/methods

Data from 21 centers in Poland were collected from May 2008 to January 2009. QoL was assessed using the questionnaire Euro Quality of Life (EQ-5D), with Polish population norms. Demographic profile of patients, duration/form/relapsing activity of the disease, disability and comorbidity were also analyzed.

Results

Data from 3521 patients (F/M ratio 2.4:1) were collected. The average EQ-5D index was 0.8 ± 0.27 and the mean score in a visual analog scale (EQ-VAS) was 65.6 ± 21.5. There was a highly significant positive correlation between both indices (r = 0.7334, p < 0.0001). The mean patient age was 40.7 years (11.2–92.3 years) and disease duration was 10.3 ± 8.8 years (0.04–53 years). 74.2% of subjects had relapsing-remitting form of MS, while 17.2% were classified as secondary progressive and 8.6% as primary progressive. In the group of relapsing-remitting MS subjects there were 2.5% patients with “benign MS”. The average degree of disability on EDSS scale was 3.6 ± 2.2, while disability ≥6 was observed in 20.3% of patients. Most patients did not have other diseases besides MS.

Conclusions

This is the first large study of QoL in patients with MS in Poland (approximately 18% of all patients). Our results confirm a reduction in QoL compared with the general population. Further studies are indicated to identify the modifiable risk factors (e.g. type of treatment) that may affect QoL.

Introduction

Multiple sclerosis (MS) is a common chronic autoimmune inflammatory disease of the central nervous system. Its prevalence in Poland is about 55–57 per 100,000) [1], [2]. It develops mainly in people aged 20–40 years, being the second most common cause of disability among young adults, after injuries [3]. According to currently available knowledge, pathogenesis of MS is associated with an increased pro-inflammatory T-lymphocytic response against myelin protein antigens. In the early stages of MS there are usually periods of relapses (neurological deterioration) and remissions. Later, it slowly progresses to physical and intellectual disability. To date, there have been several immunomodulatory drugs identified as mitigating the clinical course of MS. However, the efficacy of these drugs, assessed through their impact on the frequency of relapses and the progression of disability, is limited [4].

The quality of life (QoL) in chronic diseases is now considered one of the important markers of treatment efficacy, not only for medical reasons, but also in terms of measurable economic costs [5]. The term “quality of life” is ambiguous and is conditioned by many factors. It depends on cultural differences and the general prevalent moral and social standards. Overall, a good QoL is the physical, mental and social well-being of an individual. In medical research this general interpretation is narrowed down and the analysis of QoL is only dependent on the state of health (HRQoL) [6]. In 1987, an international group of experts (EuroQoL Group) affiliated with the WHO prepared a standardized, generic questionnaire to study QoL in patients: EQ-5D [7], [8]. The format of EQ-5D is independent of the type of disease being evaluated. This questionnaire, considered a generic quality of life scale assesses life problems from the patient's subjective point of view, along with ease of understanding the questions and the ability of patients to complete the questionnaire within a short time. So far, the EQ-5D questionnaire has more than 70 language versions, which are being successfully used in clinical trials for efficacy and economics of health care. There is also a validated version of the EQ-5D questionnaire in Polish. In addition, there are many other questionnaires assessing QoL in patients, both nonspecifically (e.g. Short Form Heath Survey – SF-36; Life Satisfaction Questionnaire – LSQ) and specific to certain chronic diseases (e.g. Multiple Sclerosis Quality of Life Instrument – MSQoL-54, Quality of Life in Epilepsy – QOLIE-89) [9], [10], [11], [12].

Chronic and progressive diseases like MS seem to particularly modify an individual's QoL. This is confirmed by studies conducted in Sweden, Germany, Spain, the United States and Canada [13], [14], [15], [16], [17]. However, because of cultural and social differences and the organization of the health care system, the results of these studies cannot be directly linked to MS patients in Poland [18]. Thus far, there has been no research in Poland concentrating on QoL in MS patients using a questionnaire specifically validated for the Polish population.

The aim of this study was to collect data on QoL, demographics profile and health status in MS patients in Poland. The results obtained will help to assess the social costs of this disease and improve health care for MS patients, by indicating their specific needs for pharmacologic treatment and rehabilitation.