(RS6) A Mixed Method Study on 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. 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, improved medical care services and disability access in public areas. Discussion/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