Original Research ArticleQuality of life in Polish patients with multiple sclerosis
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.
Section snippets
Selection of the study population
Cross-sectional data collection started in May 2008 and was completed in January 2009. This project involved 21 of more than 60 clinical centers (university clinics, hospital wards, outpatient clinics and private surgeries) that provide medical care to MS patients, represented 14 of all 16 provinces of Poland. Every patient with MS available in the site was included into the study; therefore, the risk of selection bias did not occur. Doctors participating in the survey were asked to collect
Results
The degree of disability was assessed by The Kurtzke Extended Disability Scale (EDSS) [21]. The average EDSS score was 3.35 ± 2.20 (range 0–9.5). Patients with mobility restriction that required the use of a cane (EDSS ≥6) accounted for 20.3% of the study group. Patients who were not able to walk independently and were forced to use a wheelchair constituted 5% of the sample.
Most study subjects (74.2% of patients) had a relapsing-remitting form of the disease, 17.2% were secondary progressive –
Discussion
During the study, we collected data on QoL from 3521 patients. Taking into account MS prevalence (around 55–57 per 100,000) found during epidemiological studies conducted both in the north-west [1] and in eastern Poland [2], it seems that the group examined accounts for approximately 18% of the entire Polish population of MS patients.
The EQ-5D questionnaire used in the study has a very simple format. Filling it up takes a little time and poses no problem for most of the respondents. However,
Conclusions
We estimate that our study on QoL covered approximately 18% of the Polish population of MS patients. Our results indicate a reduction in QoL of MS patients in comparison to the general population.
It is necessary to continue research on QoL in MS patients to evaluate the impact of factors such as type of pharmacological treatment and rehabilitation. Future results will contribute to the improvement of health care organization for MS patients in Poland.
Conflict of interests
The authors declare no conflict of interest.
Financial disclosure
This project was a joint effort of the Polish Society of Multiple Sclerosis and Bayer Sp. z o.o., Warszawa, Poland. Financial support was provided by Bayer Sp. z o.o., Warszawa, Poland.
Acknowledgements
The authors wish to thank the following investigators who collected data for this report:
Białystok: Dr. H. Borowik, Dr. K. Kapica-Topczewska, Cibórz: Dr. G. Adamcewicz, Kielce: Dr. I. Durek-Widz, Dr. A. Kubicka, Dr. K. Kubicka, Konin: Dr. H. Krupczyńska, Kraków: Dr. S. Rusek, Lublin: Dr. E. Belniak, Dr. M. Kulka, Dr. M. Mazurkiewicz-Kanar, Prof. Z. Stelmasiak, Olsztyn: Dr. E. Kędzierska, Opole: Dr. M. Gardzińska, Poznań: Dr. H. Hertmanowska, Dr. D. Kleczewska-Ratajczak, Dr. M. Moskalik, Dr. E.
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