Multiple sclerosis: patient-reported quality of life in the Świętokrzyskie Region

Abstract

Introduction: Comprehensive epidemiologic data for multiple sclerosis (MS) in Poland are limited. Aim of the research: To analyse patient-reported quality of life and selected clinical and socio-demographic factors of patients registered in the Świętokrzyskie Cohort of the Polish Registry of Multiple Sclerosis (RejSM). Material and methods: Participants were residents of Świętokrzyskie Province, and the data were collected between January 1 st 2014 and December 31 st 2015 by the RejSM web portal. After registration by doctors, the respondents assessed their quality of life individually using the Polish language versions of self-assessment questionnaires, the EuroQol (EQ-5D and EQ-VAS), and the Multiple Sclerosis Impact Scale (MSIS-29). Results: Of 1525 registered patients, 765 agreed to perform self-assessments of life quality and were included in the study. The mean degree of disability measured with the Expanded Disability Status Scale (EDSS) was 3.8 ±2.3. The mean EQ-5D index score was 0.78 ±0.28, and the mean EQ-VAS score was 65.6 ±23.8. Assessment score with MSIS-29 averaged 86.4 ±22.4 (64.2 ±19.6 for physical state and 24.7 ±7.8 for mental state). Only 34.7% of respondents were economically active. Lower quality of life was significantly associated with higher disability scores (p < 0.001), age over 40 years (p < 0.001), longer disease duration (p < 0.001), no access to therapy (p < 0.001), and unemployment (p = 0.002). No correlation was found between life quality and sex, course of disease, level of education, place of residence, or family status. Conclusions:The main factors decreasing life quality among patients in Świętokrzyskie Province are advanced disability, old age, long disease duration, and limited access to both employment and immunomodulatory treatment.

Quality of life in adults with multiple sclerosis: a systematic review

“…The results showed that the EDSS was most employed for assessment of functional impairment. [25][26][27][28][29][30][31][32][33][34][35] As expected, the number and severity of symptoms and associated impairment appeared to play a crucial role in QoL. Fatigue, 28 29 39 40 42-52 cognitive impairment, 39 50 52 53 63 66 67 and pain, 35 39 50 51 55 56 in particular, were the focus of a large number of studies and were confirmed as important risk factors.…”

“…Functional impairment as assessed by the Expanded Disability Status Scale (EDSS) level was one of the leading causes of diminished QoL. 25–35 Disease duration, 30 31 progressive type, 26 36 37 progressive MS onset 38 and relapses in the last 3 months were further relevant factors negatively affecting QoL. 26 …”

“…Functional impairment as assessed by the Expanded Disability Status Scale (EDSS) level was one of the leading causes of diminished QoL. [25][26][27][28][29][30][31][32][33][34][35] Disease duration, 30 31 progressive type, 26 36 37 progressive MS onset 38 and relapses in the last 3 months were further relevant factors negatively affecting QoL. 26 Several studies found a significant association between the severity and number of symptoms and the decline of QoL in MS. 33 37-41 Fatigue was identified as a main risk factor.…”

The Effect of Skill-based Sexual Enhancement Counseling Program in Quality of life in Women with Multiple Sclerosis–a quasi-experimental study

“…fatigue, muscle weakness, changes in menstruation, pain, anxiety, depression, urinary incontinence, and intestinal problems decrease chance of independence and ability to effectively participate in the society and interfere with ability to work, pursue leisure activities, and carry on usual life roles of employment (8,9). Physical, psychological and social effects have a signi cant impact on the quality of life and health of these patients (10,11). Dealing with the unique physical and psychological stressors associated with being in close contact (living with or caring for) a loved one with MS, marital quality is considered to be an important factor (12) .Lower relationship satisfaction, relationship distress, sexual dysfunction, and low quality of life are often reported by the couples, one of whom is affected by MS, as compared to normal couples (12,13).…”

The effect of selected factors on the quality of life of patients after arthroscopic reconstruction of a rotator cuff 1–2 years after surgery

“…These scales allow the monitoring of a patient's responses to treatment and application of various forms of therapy. They are characterised by high sensitivity to changes, and compared to global scales, apart from the typical domains of life, they also include examples of actions or functions which might have been negatively affected by an injury or disease [13,14].…”