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Access to Standards of Care for people with Spinal Muscular Atrophy

Thank you for taking the time to complete this survey.

It will take about 15-20 minutes to complete it. If you are unable to complete it at once, you'll be able to reasume it reconecting with the same device.

The main aim of the survey is to see if individuals receive the recommended Standards of Care for people with Spinal Muscular Atrophy in order to identify any issues which may impact on current treatments. In addition, we would like to understand how different interventions help in the management of your condition.

We would like ONE QUESTIONNAIRE per person with SMA. Please complete a second questionnaire if several members of the family are affected (i.e. siblings, partner, etc). Please avoid duplicated questionnaires filled in by multiple carers/parents.

We will be asking you about specific interventions such as use of splints, standers, as well as about wheelchairs and exercise. We would like you to tell us what best describes your current use.

Please respond by selecting the options that best describe your usual situation. We know that this is not always easy to identify, if you feel something is not captured appropritely, please feel free to comment in the blank box at the end of the questionnaire.

Finally, you will see as well that some information related to your location is required. This is to try to map the current situation across the country.

All of your answers will be anonymised before analysis.

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