The Impact of Living with Spinal Muscular Atrophy in Malaysia from Patients' and Caregivers' Perspectives.

Introduction Spinal muscular atrophy (SMA) is a recessively inherited neuromuscular disorder resulting in muscle weaknesses. With no available cure, the impact of this condition can be manifold.  The objective of this study is to understand the impact of living with SMA from the Persons with Spinal Muscular Atrophy (PWSMA) and their caregivers' perspectives. 

Methods Nationwide participants were recruited through SMA advocacy organization. Participants answered a validated questionnaire and DASS 21 tool, followed by an In-depth Interviews (IDI) or Focus Group Discussions (FGD). Consented participants were given a date for the researchers to meet up and performed the interview. The sessions were audio-taped, and the verbatim transcripts were analyzed thematically.    

Results In the quantitative study, participants were reported to experience stress, anxiety, and depression. In the qualitative component, the impacts of living between the PWSMA and the caregivers include issues at the time of diagnosis, poor information delivery and the absence of supportive services. Participants' expressed their concerns living with self-doubt and turmoil with having to modify their lifestyles, familial relationships, and social lives. When exploring about future hope, themes emerged pointed towards having a united desire for better access to treatment, clinical trials, holistic care post diagnosis, and improved medical care services and disability access in public areas.  

Conclusion Our study highlighted a plethora of issues and challenges experienced by PWSMA and their caregivers in Malaysia. Sustained efforts from all stakeholders, PWSMA and their caregivers are required to bring about changes and thus lessen the burden of living with SMA patients in Malaysia.  

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