Spinal muscular atrophy care in the COVID-19 pandemic era.
Aravindhan VeerapandiyanAnne M ConnollyRichard S FinkelKapil AryaKatherine D MathewsEdward C SmithDiana CastroRussell J ButterfieldJulie A ParsonsLaurent ServaisNancy KuntzVamshi K RaoJohn F BrandsemaEugenio MercuriEmma CiafaloniPublished in: Muscle & nerve (2020)
The coronavirus disease 2019 (COVID-19) pandemic has resulted in reorganization of healthcare settings affecting the delivery of clinical care to patients with spinal muscular atrophy (SMA). There is a concern that patients with SMA may be at increased risk of manifesting severe symptoms of COVID-19. Currently approved therapies for SMA improve survival and motor function; however, their delivery requires an increased exposure to the health system and a dedicated healthcare team. In this study, we discuss consensus recommendations pertaining to care of SMA patients during the pandemic. We highlight that SMA treatments should not be perceived as elective. Decisions regarding the delay of treatments should be made with consideration of the potential risks of COVID-19 exposure and the risk of that delay. We emphasize the importance of collaborative treatment decisions between the patient, family, and healthcare provider, considering any geographic- or institution-specific policies and precautions for COVID-19.
Keyphrases
- coronavirus disease
- healthcare
- sars cov
- quality improvement
- palliative care
- respiratory syndrome coronavirus
- ejection fraction
- end stage renal disease
- affordable care act
- clinical practice
- newly diagnosed
- prognostic factors
- depressive symptoms
- human health
- public health
- mental health
- early onset
- pain management
- patients undergoing
- health information
- social support
- risk assessment
- peritoneal dialysis
- chronic pain
- climate change
- drug administration