Table 1 Questionnaire. Contents of the questionnaire including the responses available and the date questions were added
Participant information | Responses available | Date added |
|---|---|---|
Are you a patient or parent/carer of a child with a rare condition? | Patient | June 2018 |
Parent/carer | ||
Other—please specify | ||
Do you or your child attend a hospital in Glasgow? (Please specify) | Yes | June 2019 |
No | ||
Theme 1: Diagnosis | ||
Have you or your child been formally diagnosed or is it suspected that you have a rare condition? | Formally diagnosed | June 2018 |
Suspected to have a rare condition | ||
Currently undiagnosed | ||
If currently undiagnosed, how long has it been since you first reported your or your child's symptoms to a healthcare professional? | ||
Which rare condition do you or your child have or is it suspected that you or your child have? Please enter N/A if undiagnosed | June 2018 | |
At what age did you or your child first develop symptoms? | June 2018 | |
How long did it take to receive a diagnosis from the time you first approached a healthcare professional about your or your child's symptoms? Please enter N/A if undiagnosed | June 2018 | |
Theme 2: Provision of Information | ||
At time of diagnosis, or suspected diagnosis, how much information were you given about the condition? | Lots of information was given | June 2018 |
Adequate information was given | ||
Little information was given | ||
No information was given | ||
N/A (currently undiagnosed) | ||
Where did/do you find information about this condition? | Through a healthcare professional | June 2018 |
Through the literature/website of a patient support organisation | ||
N/A (currently undiagnosed) | ||
Other (please specify) | ||
Do you feel you have enough information on this condition? | Yes, I feel I know a lot about this condition | June 2018 |
Yes, I have some information about this condition and am satisfied with what I know | ||
No, I have access to some information, but would like to know more about this condition No, I don’t know anything about the condition Currently undiagnosed | ||
Theme 3: Availability of support | ||
Have you had the opportunity to meet another person/family with this condition (or someone who is in a similar situation, e.g. undiagnosed)? | Yes | June 2018 |
No | ||
If you haven’t, would you like to be given such an opportunity? | ||
How much support do you or your child receive in every day life from the following people? Family Hospital-based healthcare professional Your GP Other community-based healthcare professional School staff Friend | Lots | June 2018 |
Some | ||
Very occasional | ||
Not at all | ||
Not applicable | ||
Do you know of a support group/patient association for your condition or for undiagnosed conditions? | Yes | June 2018 |
No | ||
Are you a member of this or any other patient support group? | Yes | June 2018 |
No | ||
Do you feel well supported generally? | Yes | June 2018 |
No | ||
Theme 4: Satisfaction with Healthcare Team | ||
With regards to you/your child's care, is there one specialist service that takes the lead? | Yes | June 2018 |
No | ||
If yes, which service at which hospital takes the lead | ||
How satisfied are you with the following? Having a consistent team of health professionals taking overall responsibility for you/your child’s health The overall support that you get from health professionals for you/your child Feeling that you are part of a health care team looking after you/your child How much health professionals know about you/your child’s condition Knowing which healthcare professional to contact for guidance/support with your/your child's condition | Extremely satisfied | June 2018 |
Satisfied | ||
Neither satisfied or dissatisfied | ||
Dissatisfied | ||
Extremely dissatisfied | ||
Theme 5: Awareness and support of limiting conditions | ||
Do you think your child has a life limiting condition | Yes | January 2019 |
No | ||
Don’t know | ||
If yes, have you received special support for that? | Yes | January 2019 |
No | ||
Don’t know | ||
If yes, what service has provided the support | January 2019 | |
Theme 6: Participation in research | ||
Are you currently taking part in any research related to your condition? | Yes | February 2020 |
No | ||
Would you be interested in taking part in any research regarding your condition? | Yes | February 2020 |
No | ||