Self-reported quality of life in multiple sclerosis patients: preliminary results based on the Polish MS Registry

Brola, Waldemar; Sobolewski, Piotr; Fudala, Małgorzata; Flaga, Stanisław; Jantarski, Konrad; Ryglewicz, Danuta; Potemkowski, Andrzej

doi:10.2147/ppa.s109520

Cited by 31 publications

(32 citation statements)

References 37 publications

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“…Numerous studies [9,[24][25][26][27][28] have indicated that multiple sclerosis significantly reduces the quality of life of patients, as demonstrated in the own study. Our own study confirmed that the patients with MS had the lowest quality of life in the somatic domain, assessing the degree of efficiency and independent functioning [24][25][26][27].…”

Section: Discussionmentioning

confidence: 79%

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The Impact of Ilness Acceptance on Quality of Life of Patients with Multiple Sclerosis — Preliminary Study

Rosińczuk

Rychła

Bronowicka³

et al. 2017

PNIN

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Introduction. Multiple Sclerosis (MS) is a disease that often changes the life of a patient and his or her immediate family. The lack of aetiology, young age and the inability to control the dynamics of disease development and the lack of complete cure are factors impeding the acceptance of the disease. Aim. Evaluation of the effect of disease acceptance on quality of life (QOL) of MS patients. Material and Methods. The study was conducted among 128 people (93 women and 35 men) with MS using a shortened quality of life questionnaire of The World Health Organization (WHOQOL-BREF), as well as the Acceptance of Illness Scale (AIS) and the Author's Own Survey (AOS). The research project was approved by the Bioethics Committee of Wrocław Medical University (no. KB-444/2016). The research material was subjected to statistical analysis using the Statistica program version 13.1. Results. Analysis of the research material revealed that only one in three respondents was satisfied or very satisfied with their health condition, the lowest respondents rated the quality of their lives in the somatic domain, every fourth respondent does not accept his or her own disease, the higher the level of disease acceptance, the higher the score obtained in the WHOQOL-BREF questionnaire. Conclusions. The level of disease acceptance significantly affects QOL patients with MS. (JNNN 2017;6(4):157-162) Key Words: multiple sclerosis, acceptance of illness, quality of life, nursing care Streszczenie Wstęp. Stwardnienie rozsiane (MS, Multiple Sclerosis) to choroba, która często powoduje zmianę dotychczasowego życia pacjenta i osób z jego najbliższego otoczenia. Brak etiologii, młody wiek zachorowania a także niemożność kontroli nad dynamika rozwoju choroby i brak możliwości całkowitego wyleczenia to czynniki utrudniające akceptację choroby. Cel. Ocena wpływu akceptacji choroby na jakość życia pacjentów (QOL, Quality of Life) chorych na MS. Materiał i metody. Badanie przeprowadzono wśród 128 osób (93 kobiety oraz 35 mężczyzn) chorujących na MS wykorzystując skrócony kwestionariusz jakości życia Światowej Organizacji Zdrowia (WHOQOL-BREF, World Health Organisation Quality of Life Scale Brief Version) służący do QOL, a także skalę akceptacji choroby (AIS, Acceptance of Illness Scale) oraz kwestionariusz własnego autorstwa (AOS, Author's Own Survey). Na przeprowadzenie badań uzyskano zgodę Komisji Bioetycznej przy Uniwersytecie Medycznym we Wrocławiu (nr KB-444/2016). Materiał badawczy poddano analizie statystycznej przy użyciu programu Statistica 13.1. Wyniki. Analiza materiału badawczego wykazała, iż: tylko co trzeci ankietowany była zadowolony lub bardzo zadowolony ze stanu swojego zdrowia, najniżej respondenci ocenili jakość swojego życia w domenie somatycznej, co czwarty ankietowany nie akceptuje własnej choroby, im wyższy poziom akceptacji choroby tym wyższy wynik uzyskany w kwestionariuszu WHOQOL-BREF. Wnioski. Poziom akceptacji choroby istotnie wpływa na QOL chorych na MS. (PNN 2017;6(4):157-162) Słowa kluczowe: stwardnienie rozsiane, akcep...

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Section: Discussionmentioning

confidence: 79%

“…The diagnosis of MS significantly affects the life of the patient and his family [8,9]. The lack of aetiology, young age, symptoms multiplicity, and the inability to control the progression of disease and the lack of complete cure are factors hindering the acceptance of disease.…”

Section: Introductionmentioning

confidence: 99%

The Impact of Ilness Acceptance on Quality of Life of Patients with Multiple Sclerosis — Preliminary Study

Rosińczuk

Rychła

Bronowicka³

et al. 2017

PNIN

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“…EuroQol 5-Dimensions (EQ-5D) or condition-specific PROMs, e.g. Multiple Sclerosis Impact Scale (MSIS-29) [26, 27]. Small, but still visible differences in scoring against Polish population compare to other developed countries (Spain, Finland), has been observed in QoL measures in the aging population performed with the World Health Organization Quality of Life Assessment instrument (WHOQOL-AGE) [28].…”

Section: Discussionmentioning

confidence: 99%

Health related quality of life in patients with diabetic foot ulceration — translation and Polish adaptation of Diabetic Foot Ulcer Scale short form

Macioch

Sobol

Krakowiecki³

et al. 2017

Health Qual Life Outcomes

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ObjectivesDiabetic foot ulcer (DFU) is a common complication of diabetes and not only an important factor of mortality among patients with diabetes but also decreases the quality of life. The short form of Diabetic Foot Ulcer Scale (DFS-SF) provides comprehensive measurement of the impact of diabetic foot ulcers on patients’ health related quality of life (HRQoL). The purpose of this study was to translate DFS-SF into Polish and evaluate its psychometric performance in patients with diabetic foot ulcers.MethodsThe DFS-SF translation process was performed in line with Principles of Good Practice for the Translation and Cultural Adaptation Process for patient reported outcome measures (PROMs) developed by ISPOR TCA group. Assessment of the reliability and validity of Polish DFS-SF was performed in native Polish patients with current DFU.ResultsThe DFS-SF validation study involved 212 patients diagnosed with DFU, with 4.4 years of DFU duration on average. The average ulcer size was 5.5 sq. cm, and generally only one limb was affected. Men (72%) and type 2 diabetes patients (86%) prevailed, with 17.8 years representing the mean time since diagnosis. The mean population age was 62.5 years. The internal consistency of all scales of the Polish DFS-SF was high (Cronbach’s alpha ranged from 0.82 to 0.93). Item convergent and discriminant validity was satisfactory (median corrected item-scale correlation ranged from 0.61 to 0.81). The Polish DFS-SF demonstrated good construct validity when correlated with the SF-36v2 and showed better psychometric performance than SF-36v2.ConclusionsThe newly translated Polish DFS-SF may be used to assess the impact of DFU on HRQoL in Polish patients.Electronic supplementary materialThe online version of this article (doi:10.1186/s12955-017-0587-y) contains supplementary material, which is available to authorized users.

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“…In an earlier publication, we presented QoL selfassessments of 2385 randomly selected patients living in different parts of the country [26]. The present analysis covers a more representative part of the registry -the Świętokrzyskie Cohort -and includes 765 respondents.…”

Section: Discussionmentioning

confidence: 99%

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

Brola¹,

Sobolewski²,

Fudala³

et al. 2017

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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.

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Self-reported quality of life in multiple sclerosis patients: preliminary results based on the Polish MS Registry

Cited by 31 publications

References 37 publications

The Impact of Ilness Acceptance on Quality of Life of Patients with Multiple Sclerosis — Preliminary Study

The Impact of Ilness Acceptance on Quality of Life of Patients with Multiple Sclerosis — Preliminary Study

Health related quality of life in patients with diabetic foot ulceration — translation and Polish adaptation of Diabetic Foot Ulcer Scale short form

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

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