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Table 1 Demographic and clinical characteristics of the sample (N = 25)

From: “Getting ready for the adult world”: how adults with spinal muscular atrophy perceive and experience healthcare, transition and well-being

Interviewees People with SMA Parentsa,b Partnersb
Total number 19 5 1
Age (years)
 Mean (range) 30 (16–48) 57 (49–66) 42
Gender
 Male 7 (37%) 4 (80%)  
 Female 12 (63%) 1 (20%) 1
Highest level of education
 Year 10 or below 3 (16%)   
 Year 12 3 (16%) 1 (20%)  
 TAFE or College 4 (21%)   
 Bachelor’s Degree 5 (26%) 4 (80%) 1
 Postgraduate Degree 4 (21%)   
SMA type
 I 2 (11%) 1 (16.6%)  
 II 8 (42%) 3 (50%)  
 III 9 (47%) 2 (33.3%) 1
Highest level of function
 Independent walking 3 (16%) 2 (33.3%)  
 Independent sitting 13 (68%) 2 (33.3%) 1
 Neither 3 (16%) 2 (33.3%)  
Employment status
 Full-time employment 6 (32%) 4 (67%) 1
 Part-time employment 3 (16%)   
 Casual employment 1 (5%)   
 Full-time student 5 (26%) 1 (17%)  
 Retired 1 (5%)   
 Unemployed 3 (16%) 1 (17%)  
Primary language spoken at home
 English 16 (84%) 5 (100%) 1
 English as a second language 3 (16%)   
  1. aOne participant had 2 children with SMA (ID003), b“SMA type”, “highest level of function” and “employment status” is relevant for the person with SMA related to them, cSMA classification was based on age of symptom onset and maximal motor function achieved. SMA type I children had symptom onset within 6 months and never attained independent sitting, SMA II had onset between 6 and 18 months and achieved unassisted sitting but not independent walking. SMA III had an onset between 18 months-18 years and attained the ability to walk unaided