Questionnaire for Families of Children with Neuromuscular Conditions about Respiratory Care

24 March 2021

This questionnaire is being run by Federica Trucco - a consultant in paediatric sleep. She says:

"Thank you very much for taking part in this survey. My name is Federica Trucco and I am a consultant in paediatric sleep at Royal Brompton Hospital and Evelina London Children Hospital. I have specific research interest and clinical expertise in the management of children with neuromuscular disorders including SMA.

As you know from previous communication on SMA UK webpage, I am organising an online international symposium on the 28th May called “TURNING THE TIDE - RESPIRATORY MANAGEMENT OF NEUROMUSCULAR PATIENTS IN THE ERA OF NEW TREATMENTS” - FIRST ANITA SIMONDS SYMPOSIUM to update respiratory physicians on the recent advancements that treatments for neuromuscular conditions have had.

It will be a good opportunity for paediatric neurologists and respiratory clinicians to share their expertise.

The symposium has a section called “Family perspectives” which aims to make clinicians across disciplines aware of what families of children with neuromuscular conditions feel in regards to their respiratory care. We hope the questionnaire will help clinicians better understand the areas needing improvement and what are the main hopes of the families in regards to the results of new treatments.

Please can one parent per family fill-in the online version of the questionnaire at the link here. The results will populate a spreadsheet only myself has access to. They are completely anonymised.

The results will be collated and presented at the symposium on the 28th May and will become available to you soon after.

I would be grateful if you could fill in the questionnaire by 15th May 2021.

Thank you very much."

You can also download a paper copy of the questionnaire, here