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Table 1 Quality of life survey demographics

From: “I have SMA, SMA doesn’t have me”: a qualitative snapshot into the challenges, successes, and quality of life of adolescents and young adults with SMA

  Total age cohort Adolescents (12–18) Young adults (19–24)
Total 85 44 (52%) 41 (48%)
SMA type    
 Type I 6 (7%) 4 (5%) 2 (2%)
 Type II 56 (66%) 28 (33%) 28 (33%)
 Type III 23 (27%) 12 (14%) 11 (13%)
Gender    
 Female 53 (62%) 28 (33%) 25 (29%)
 Male 31 (37%) 15 (18%) 16 (19%)
 Non-binary 1 (1%) 1 (1%) 0
Motor function at time of diagnosisa    
 Non-independent sitter 25 (29%) 13 (15%) 12 (14%)
 Sitter/non-independent walker 37 (44%) 20 (24%) 17 (20%)
 Walker 23 (27%) 11 (13%) 12 (14%)
Motor function at time of survey completion*    
 Non-independent sitter 31 (37%) 17 (20%) 14 (17%)
 Sitter/non-independent walker 40 (47%) 19 (22%) 21 (25%)
 Walker 14 (16%) 8 (9%) 6 (7%)
  1. 85 individuals responded to the QoL survey. Non-binary was included as a gender option, and describes individuals who identify with no one gender
  2. aMotor function abilities were divided into three categories: non-independent sitter (head control, maintain seated position supported), sitter/non-independent walker (maintain seated position unsupported, crawl, cruise), and walkers (walk independently). All demographic information was self-identified. All percentages are based on the total surveyed population of 85 respondents