[P3-113] Life Quality Survey in Spinal Muscular Atrophy patients
[Introduction]
Spinal muscular atrophy (SMA) patients presented with progressive weakness and lead to dysphagia, scoliosis, and pulmonary dysfunction. These complications often influence the quality of life greatly. However, the correlation to the psychosocial aspects of the SMA patients remain unknown. The study is to clarify the patient`s needs in different age groups.
[Methodology]
We screened the patients with SMA who received long-term follow-up in Kaohsiung medical university hospital by two standard tests, the Pediatric Quality of Life Inventory (PedsQL) measurement model (age<18) and the Duke health profile (age>18). Clinical features including age, gender, type of SMA were also analyzed.
[Results]
70 SMA patients (mean age = 20.5, SD=12.3) were enrolled. 53% of the patients were in adult group and 47% in child group. 45% of the patents are SMA type 2 and 55% are SMA type 3. In pediatric group (mean age=10.8, SD=5), the scores in physical health showed relatively low. In adult group (mean age=31.5, SD=8) revealed more demand in psychosocial aspects including anxiety, depression and disability.
[Conclusions]
In our study, SMA children may need assistive devices such as electric wheelchair to broaden the physical limits. The proper mental health screening and therapy are critical for adult SMA patients.
Spinal muscular atrophy (SMA) patients presented with progressive weakness and lead to dysphagia, scoliosis, and pulmonary dysfunction. These complications often influence the quality of life greatly. However, the correlation to the psychosocial aspects of the SMA patients remain unknown. The study is to clarify the patient`s needs in different age groups.
[Methodology]
We screened the patients with SMA who received long-term follow-up in Kaohsiung medical university hospital by two standard tests, the Pediatric Quality of Life Inventory (PedsQL) measurement model (age<18) and the Duke health profile (age>18). Clinical features including age, gender, type of SMA were also analyzed.
[Results]
70 SMA patients (mean age = 20.5, SD=12.3) were enrolled. 53% of the patients were in adult group and 47% in child group. 45% of the patents are SMA type 2 and 55% are SMA type 3. In pediatric group (mean age=10.8, SD=5), the scores in physical health showed relatively low. In adult group (mean age=31.5, SD=8) revealed more demand in psychosocial aspects including anxiety, depression and disability.
[Conclusions]
In our study, SMA children may need assistive devices such as electric wheelchair to broaden the physical limits. The proper mental health screening and therapy are critical for adult SMA patients.