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SMA Transition Survey - Your Perspective

We would like to understand the experiences of people with SMA (and their families) as they move/ or have moved from paediatric to adult care. Your answers will help identify what works well and where improvements are needed, so that future transitions can be smoother and better supported.

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SMA Transition survey

ABOUT YOU

1

Who is completing this survey?

Select one answer
2

What is your age/ what is the age of young person with SMA?

3

Do/ did you feel involved in planning your own care during transition?

Select one answer
4

If you would like to comment on whether you do/ did feel involved in planning your own care during transition, please use this box:

5

Which NHS Trust are you/ the young person with SMA under?

6

What is your understanding of transition? (please tick the most appropriate box for you)

Select one answer
7

If you have heard about transition, have you had information given about the process? Has anyone spoken about it with you?

8

What do you know and what do you want to know about the transition process?

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SMA Transition survey

EDUCATION

9

At what stage of education are you?

Select one answer
10

If you would like to comment on the above question, or give a different answer, please use the box below:

11

Has transition affected your choice of university or college?

Select one answer
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SMA Transition survey
12

Has anyone talked to you about moving from paediatric to adult services?

Select one answer
13

Which stage of transition best describes your current situation?

Select one answer
14

At what age did planning for transition start for you?

Select one answer
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SMA Transition survey
15

How was the handover to adult services managed for you? (tick all that apply)

(tick all that apply)
16

Have you been/ were you given written information or resources about what to expect?

Select one answer
17

Do/ did you have a key worker or transition coordinator to help you?

Select one answer
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SMA Transition survey
18

What were the most helpful parts of your transition? (If it doesn't yet apply, please use the box to let us know)

19

What were the biggest challenges you faced? (If it doesn't yet apply, please use the box to let us know)

20

Do you think your paediatric and adult teams communicated well with each other?

Select one answer
21

Overall, how satisfied are/were you with your transition experience? (If you are currently transitioning, please answer based on your experience so far.)

Select one answer
22

What specialties were involved in your transition clinics?

Select one or more answers
23

Community services: during your transition, have you got/ had access to:

Select one or more answers
24

If you do/ did not have access to community services during your transition, please would you share the reasons with us here? (If it doesn't yet apply, please use the box to let us know)

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SMA Transition survey
25

Have you experienced a hospital admission during your transition period?

Select one answer
26

How many times were you admitted during your transition period, or how many times have you been admitted so far?

Select one answer
27

What was the typical length of stay?

Select one answer
28

What was the main reason for admission

tick all that apply
29

Do you feel this/ these admission(s) could have been prevented with better support?

Select one answer
30

If yes, what would have helped prevent it?

Select one or more answers
31

How did the admission affect you?

Select one or more answers
32

Did you feel well supported by hospital staff during your admission(s)?

Select one answer
33

Were adults and paediatric teams in communication about your care during this/ these admissions?

Select one answer
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SMA Transition survey
34

What is the most important thing for you in transition?” (examples: driving, higher education, living independently). (If it doesn't yet apply, please use the box to let us know)

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SMA Transition survey
35

What would (have) make/ made your transition experience better? (If it doesn't yet apply, please use the box to let us know)

36

What advice would you give to other young people and families preparing for transition? (If it doesn't yet apply, please use the box to let us know)

37

Would you be happy to share your experience in more detail (e.g. an interview or case study)?

Select one answer
38

If you are happy to share your experience in more detail (e.g. an interview or case study), please leave your email address here:

Write an e-mail in the correct format
Thank you for your time and your feedback.

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