Investigation of Awareness Level of Spinal Muscular Atrophy Disease in Turkish Society

INTRODUCTION: In this study, it was aimed to measure and investigate the level of awareness about SMA disease in individuals aged 18–65 in Turkish society. We believe that the obtained data will contribute to epidemiological studies and literature.
METHODS: A total of 2920 individuals between the ages of 18–65 who were compos mentis were included in our study. In the study, the data collected through online applications were analyzed by using a questionnaire consisting of 2 parts and a total of 24 questions. Data analysis was performed using the SPSS version 25 package program.
RESULTS: A decrease in the level of awareness about SMA disease is observed with increasing age (p=0.0001), individuals with higher education levels are more conscious about SMA disease (p=0.0001), individuals with knowledge about SMA types have received undergraduate and graduate education (p=0.0001), it was determined that 38% of the volunteers thought that SMA disease could be treated with this method. It was determined that 75% of the individuals participating in the study could not be diagnosed with SMA disease early, 20.12% thought that SMA disease could be treated with gene therapy, and that they were aware of the fact that Ministry of Health covered the treatment of certain types of SMA patients.
DISCUSSION AND CONCLUSION: Based on these results, it is understood that individuals who have consanguineous marriages do not know that consanguineous marriages have an effect on SMA disease. Awareness about SMA increases as you go east. We attribute this to the high number of patients in those regions. When the individuals with knowledge about gene therapy and SMA were compared, it was determined that 28,09% of the individuals had knowledge about both gene therapy and SMA disease. Today, the fact that news and social media posts about SMA disease and gene therapy are thought to have an impact on this result.