Observations from a nationwide vigilance program in medical care for spinal muscular atrophy patients in Chile.
Karin AlvarezBernardita SuarezMaría Angélica PalominoCecilia HerviasGiancarlo CalcagnoMaripaz Martínez-JalilieAndrés Lozano-ArangoSusana LilloMariana HaroFanny CortésSamuel PantojaAndrés ChahinPaulina OrellanaJorge A BevilacquaEnrico BertiniClaudia CastiglioniPublished in: Arquivos de neuro-psiquiatria (2019)
Ventilatory care for SMA type-1 is still based mainly on tracheostomy. This Chilean cohort of SMA patients had timely access to genetic diagnosis, ventilatory assistance, nutritional support, and scoliosis surgery. In this series, SMA type-1 is underrepresented, probably due to restrictions in access to early diagnosis and the high and early mortality rate.
Keyphrases
- end stage renal disease
- ejection fraction
- newly diagnosed
- chronic kidney disease
- healthcare
- peritoneal dialysis
- cardiovascular disease
- quality improvement
- palliative care
- type diabetes
- coronary artery disease
- patient reported outcomes
- intensive care unit
- cross sectional
- extracorporeal membrane oxygenation
- patient reported