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

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

Interviewees	People with SMA	Parents^a,b	Partners^b
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%)

^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

ISSN: 1750-1172