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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