A new journal article by Gusset et al., 2020 called A Decision for Life – Treatment decisions in newly diagnosed families with spinal muscular atrophy (SMA) has been published.
The article focuses on various aspects that must be taken into consideration by clinicians when interacting with newly diagnosed families. It also highlights patients’ perspective on selection of gene therapy as a treatment.
The abstract states,
“• With several treatments available, families with a child with SMA are faced with challenging decisions. • In order to make informed decisions, families need to understand the full picture of the disease, including the patient perspective on quality of life. • A transparent discussion about the range of potential outcomes of different treatments, followed by shared decision-making is essential. • Predictive factors for treatment outcomes remain unclear, therefore potential treatment benefit must be assessed on an individual level.” (Gusset et al., 2020)
If you would like to read the full article you can do so here.
Gusset, N., Erbas, Y., Germanenko, O., Rucinski, K., Stumpe, E. and de Lemus, M., 2020. A Decision for Life – Treatment decisions in newly diagnosed families with spinal muscular atrophy (SMA). European Journal of Paediatric Neurology, [online] Available at: <https://www.researchgate.net/publication/347652172_A_Decision_for_Life_-_Treatment_decisions_in_newly_diagnosed_families_with_spinal_muscular_atrophy_SMA> [Accessed 25 January 2021].