Health, wellbeing and lived experiences of adults with SMA: a scoping systematic review.

Hamish W Y WanKate A CareyArlene D'SilvaSteve VucicMatthew C KiernanNadine A KasparianMichelle Anne Farrar

Published in: Orphanet journal of rare diseases (2020)

This systematic review identifies the many uncertainties regarding best clinical practice, treatment response, and long-term outcomes for adults with SMA. This comprehensive identification of the current gaps in knowledge is essential to guide future clinical research, best practice care, and advance health policy with the ultimate aim of reducing the burden associated with adult SMA.

Keyphrases

healthcare
systematic review
public health
mental health
meta analyses
clinical practice
primary care
quality improvement
health information
randomized controlled trial
palliative care
genome wide
gene expression
pain management
young adults
health promotion
health insurance