A mixed method study on the impact of living with spinal muscular atrophy in malaysia from patients’ and caregivers’ perspectives

HIGHLIGHTS

SUMMARY

This study is the first South East Asian study to comprehensively investigate the impact of SMA on the lives and daily activities of SMA patients and their caregivers. Recruitment and sampling PWSMA and caregivers were recruited through advertisement among members of a local SMA advocacy organization, WeCareJourney. Inclusion criteria for the participants were; a) persons who were diagnosed with any type of SMA, either by clinical or genetic tests; b) caregivers of individuals with SMA who are either a family member or non-family member who provides a minimum of 4 h per day . . .

 



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