Previously in Malaysia, no research had been done to document the living realities of SMA patients, their families and caregivers. That is, until the Living with Spinal Muscular Atrophy in Malaysia study was carried out.
The objective of this study is to fill this gap and to gain an understanding of the impact of living with SMA from the perspectives of persons with spinal muscular atrophy (PWSMA) and their caregivers.
This cross-sectional study consisted of two parts: a quantitative study with validated questionnaires and a qualitative study where in-depth interviews (IDIs) and focus group discussions (FGDs) were conducted.
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