Duchenne-féle izomdisztrófiával élo betegek és gondozóik betegségterhei

Translated title of the contribution: Disease burden of duchenne muscular dystrophy patients and their caregivers

Márta Péntek, Ágnes Herczegfalvi, Mária Judit Molnár, László Pál Szonyi, G. Kosztolányi, György Pfliegler, B. Melegh, I. Boncz, Valentin Brodszky, Petra Baji, Márta Szegedi, Gábor Pogány, L. Gulácsi

Research output: Contribution to journalArticle

6 Citations (Scopus)

Abstract

Background and purpose: Data on the disease burden of Duchenne Muscular Dystrophy are scarce in Hungary. The aim of this study was to assess patients' and their caregivers' health related quality of life and healthcare utilisations. Methods: A cross sectional survey was performed as part of the European BURQOL-RD project. The EQ-5D-5L and Barthel Index questionnaires were applied, health care utilisations and patients' informal carers were surveyed. Results: One symptomatic female carer, 50 children (boys 94%) and six adult patients (five males) participated in the study, the latter two subgroups were included in the analysis. The average age was 9.7 (SD=4.6) and 24.3 (SD=9.8) years, respectively. Median age at time of diagnosis was three years. The average EQ-5D score among children and adults was 0.198 (SD=0.417) and 0.244 (SD=0.322), respectively, the Barthel Index was 57.6 (SD=29.9) and 53.0 (SD=36.5). Score of satisfaction with healthcare (10-point Likert-scale) was mean 5.3 (SD=2.1) and 5.3 (SD=2.9). 15 children were hospitalised in the past 12 months for mean 12.9 (SD=24;5) days. Two patients received help from professional carer. 25 children (mean age 11.1, SD=4.4 years) were helped/supervisied by principal informal carer (parent) for mean 90.1 (SD=44.4) hours/week and further family members helped in 21 cases. Correlation between EQ-5D and Barthel Index was strong and significant (0.731; p

Original languageHungarian
Pages (from-to)183-193
Number of pages11
JournalIdeggyogyaszati Szemle
Volume69
Issue number5-6
DOIs
Publication statusPublished - May 30 2016

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Duchenne Muscular Dystrophy
Caregivers
Patient Acceptance of Health Care
Hospitalized Child
Hungary
Quality of Health Care
Cross-Sectional Studies
Quality of Life
Delivery of Health Care

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology

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Duchenne-féle izomdisztrófiával élo betegek és gondozóik betegségterhei. / Péntek, Márta; Herczegfalvi, Ágnes; Molnár, Mária Judit; Szonyi, László Pál; Kosztolányi, G.; Pfliegler, György; Melegh, B.; Boncz, I.; Brodszky, Valentin; Baji, Petra; Szegedi, Márta; Pogány, Gábor; Gulácsi, L.

In: Ideggyogyaszati Szemle, Vol. 69, No. 5-6, 30.05.2016, p. 183-193.

Research output: Contribution to journalArticle

Péntek, M, Herczegfalvi, Á, Molnár, MJ, Szonyi, LP, Kosztolányi, G, Pfliegler, G, Melegh, B, Boncz, I, Brodszky, V, Baji, P, Szegedi, M, Pogány, G & Gulácsi, L 2016, 'Duchenne-féle izomdisztrófiával élo betegek és gondozóik betegségterhei', Ideggyogyaszati Szemle, vol. 69, no. 5-6, pp. 183-193. https://doi.org/10.18071/isz.69.0183
Péntek M, Herczegfalvi Á, Molnár MJ, Szonyi LP, Kosztolányi G, Pfliegler G et al. Duchenne-féle izomdisztrófiával élo betegek és gondozóik betegségterhei. Ideggyogyaszati Szemle. 2016 May 30;69(5-6):183-193. https://doi.org/10.18071/isz.69.0183
Péntek, Márta ; Herczegfalvi, Ágnes ; Molnár, Mária Judit ; Szonyi, László Pál ; Kosztolányi, G. ; Pfliegler, György ; Melegh, B. ; Boncz, I. ; Brodszky, Valentin ; Baji, Petra ; Szegedi, Márta ; Pogány, Gábor ; Gulácsi, L. / Duchenne-féle izomdisztrófiával élo betegek és gondozóik betegségterhei. In: Ideggyogyaszati Szemle. 2016 ; Vol. 69, No. 5-6. pp. 183-193.
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AU - Molnár, Mária Judit

AU - Szonyi, László Pál

AU - Kosztolányi, G.

AU - Pfliegler, György

AU - Melegh, B.

AU - Boncz, I.

AU - Brodszky, Valentin

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