Contemporary discussions often focus on questions such as What is Slovene literature and Who can be considered a Slovene writer. This shows that literature is one of the central fields of discourse ...related to topics including the understanding and definition of the Slovene nation and questions concerning national minorities. The authors discuss the functionality, practical value and arbitrariness of concepts such as the common Slovene cultural space, “matična” (kin-state literature) and “zamejska literatura” (literature of Slovenes living in neighbouring countries), minority literature, the supra-regional sphere of interaction, and literary affiliation. On the example of Carinthian Slovenes’ literature and with due consideration of contemporary literary multilingualism in Slovenia, the authors show that the common ethnic, identity and lingo-cultural discourses are highly problematical and do not reflect the diversity of contemporary literary practices.
Sodobne razprave - od diskusije prešernovske strukture do vprašanja, kaj je slovenska literatura oziroma literatura na Slovenskem in kdo je lahko slovenski avtor - ponazarjajo, da je vprašanje ...literature eno izmed osrednjih diskurzivnih polj, ki se neposredno dotikajo tako problematike pojmovanja in opredeljevanja slovenske nacije kot tudi vprašanja narodnostnih manjšin. Avtorja osvetljujeta funkcionalnost, uporabnost in arbitrarnost konceptov, kot so skupni slovenski kulturni prostor, matična in zamejska književnost, manjšinska književnost, nadregionalni literarni interakcijski prostor in literarna pripadnost. Na primeru sodobne literature koroških Slovencev in z ozirom na literarno večjezičnost v današnji Sloveniji opozarjata na problematičnost etničnih, identitetnih in jezikovno-kulturnih opredelitev in oznak, ki ne odslikavajo raznolikosti sodobnih literarnih praks.
Background and objectives
Motor Neuron Diseases (MND) are rare diseases but have a high impact on affected individuals and society. This study aims to perform an economic evaluation of MND in ...Germany.
Methods
Primary patient-reported data were collected including individual impairment, the use of medical and non-medical resources, and self-rated Health-Related Quality of Life (HRQoL). Annual socio-economic costs per year as well as Quality-Adjusted Life Years (QALYs) were calculated.
Results
404 patients with a diagnosis of Amyotrophic Lateral Sclerosis (ALS), Spinal Muscular Atrophy (SMA) or Hereditary Spastic Paraplegia (HSP) were enrolled. Total annual costs per patient were estimated at 83,060€ in ALS, 206,856€ in SMA and 27,074€ in HSP. The main cost drivers were informal care (all MND) and disease-modifying treatments (SMA). Self-reported HRQoL was best in patients with HSP (mean EuroQoL Five Dimension Five Level (EQ-5D-5L) index value 0.67) and lowest in SMA patients (mean EQ-5D-5L index value 0.39). QALYs for patients with ALS were estimated to be 1.89 QALYs, 23.08 for patients with HSP and 14.97 for patients with SMA, respectively. Cost-utilities were estimated as follows: 138,960€/QALY for ALS, 525,033€/QALY for SMA, and 49,573€/QALY for HSP. The main predictors of the high cost of illness and low HRQoL were disease progression and loss of individual autonomy.
Conclusion
As loss of individual autonomy was the main cost predictor, therapeutic and supportive measures to maintain this autonomy may contribute to reducing high personal burden and also long-term costs, e.g., care dependency and absenteeism from work.
