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

Wan, Hamish W. Y.; Carey, Kate A.; D’Silva, Arlene; Kasparian, Nadine A.; Farrar, Michelle A.

doi:10.1186/s13023-019-1052-2

Orphanet Journal of Rare Diseases

Table 3 Demographical Characteristics

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

Participant code	SMA Type/ type of participant	Best level of function	Age of symptom onset	Gender	Age (years)	Primary language spoken at home	Highest level of education	Current occupation of person with SMA
ID001	SMA I/ Person with SMA	Neither	6 months	Male	16	English	Year 10 or below	High School Student
ID002	SMA III/ Person with SMA	Able to walk independently	9 years	Female	33	English	Bachelor’s degree	Teacher
ID003	SMA II and III/ Mother	Neither (SMA II), Able to walk independently (SMA III)	< 18 months (SMA II), 9 years (SMA III)	Female	63	English	Bachelor’s degree	Senior Manager
ID004	SMA III/ Person with SMA	Able to sit independently	13 months	Female	27	English	Year 10 or below	Receptionist
ID005	SMA II/ Person with SMA	Able to sit independently	14 months	Female	38	English	TAFE/ College certificate	Unemployed
ID006	SMA II/ Person with SMA	Able to sit independently	9 months	Female	26	Chinese (dialect)	Postgraduate university qualification	Event facilitator
ID007	SMA III/ Person with SMA	Able to sit independently	18 months	Female	27	English	Year 10 or below	Administrator and customer service
ID008	SMA II/ Person with SMA	Able to sit independently	18 months	Female	23	English	Bachelor’s degree	Journalist
ID009	SMA I/ Mother	“Neither”	6 months	Male	49	English	Year 10 or below	High School Student
ID010	SMA II/ Person with SMA	Able to sit independently	18 months	Male	27	English	Postgraduate university qualification	Content producer
ID011	SMA III/ Mother	Able to walk independently	2 years	Female	50	English	Year 12	Car Salesman
ID012	SMA III/ Person with SMA	Able to sit independently	18 months	Female	28	English	Bachelor’s degree	University Student (PhD)
ID013	SMA II/ Person with SMA	Able to sit independently	10 months	Male	34	English	TAFE/ College certificate	Retired (Former IT service desk worker)
ID014	SMA III/ Person with SMA	Able to walk independently	3 years	Female	40	English	TAFE/ College certificate	Doll maker
ID015	SMA III/ Person with SMA	Able to sit independently	3 years	Female	48	English	TAFE/ College certificate	Unemployed
ID016	SMA II/ Person with SMA	Able to sit independently	15 months	Male	24	English	Postgraduate university qualification	Unemployed
ID017	SMA I/ Person with SMA	“Neither”	6 months	Male	42	English	Postgraduate university qualification	Senior policy manager + Adjunct Senior Research Fellow
ID018	SMA III/ Person with SMA	Able to walk independently	1 year	Male	44	English	Bachelor’s degree	National Chief Scientist
ID019	SMA II/ Mother	Able to sit independently	15 months	Female	58	English	Bachelor’s degree	Unemployed
ID020	SMA II/ Person with SMA	“Neither”	18 months	Female	22	Dari	Year 12	University student (Bachelors)
ID021	SMA II/ Father	Able to sit independently	18 months	Male	66	English	Bachelor’s degree	Journalist
ID022	SMA III/ Person with SMA	Able to sit independently	6 years	Female	19	Dari	Year 12	University student (Bachelors)
ID023	SMA II/ Person with SMA	Able to sit independently	< 18 months	Female	28	English	Bachelor’s degree	Consultant
ID024	SMA III/ Person with SMA	Able to sit independently	3 years	Male	24	English	Year 12	University student (Bachelors)
ID025	SMA III/ Wife	Able to sit independently	1 year	Female	42	English	Bachelor’s degree	National Chief Scientist

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ISSN: 1750-1172

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