Disease burden of spinal muscular atrophy in Germany
| Autor: | Constanze, Klug, Olivia, Schreiber-Katz, Simone, Thiele, Elisabeth, Schorling, Janet, Zowe, Peter, Reilich, Maggie C, Walter, Klaus H, Nagels |
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| Rok vydání: | 2016 |
| Předmět: |
Adult
Male Adolescent Direct cost Health care burden Health-related quality of life (HRQOL) Cost of illness (COI) Muscular Atrophy Spinal Young Adult Cost of Illness Germany Surveys and Questionnaires Humans Health services research Child Aged Research Infant Health Care Costs Middle Aged Neuromuscular disease Spinal muscular atrophy (SMA) Informal care cost Cross-Sectional Studies Indirect cost Child Preschool Quality of Life Female |
| Zdroj: | Orphanet Journal of Rare Diseases |
| ISSN: | 1750-1172 |
| Popis: | Background This study aimed at analyzing the economic burden and disease-specific health-related quality of life (HRQOL) of patients with spinal muscular atrophy (SMA) in Germany. SMA is a so far non-curable neuromuscular disease of the anterior nerve cells that causes high rates of morbidity and mortality. Methods In a cross-sectional study we analyzed the cost of illness (COI) and factors that influence the direct, indirect and informal care costs of affected patients and their families by using standardized, self-developed questionnaires. We used the PedsQL™© Measurement Model to analyze the disease-specific HRQOL of patients. Results One hundred eighty nine patients with SMA types I to III aged |
| Databáze: | OpenAIRE |
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