Initial Survey

At GOSH we run a dedicated Arthrogryposis clinic for children aged from 0-16 years with a suspected or confirmed diagnosis of arthrogryposis affecting both the upper and lower limbs. The clinic runs four times per year and offers an assessment service from an upper and lower limb surgical perspective by Consultant Plastic and Orthopaedic surgeons, and Occupational Therapy and Physiotherapy input to address splinting, mobility, functional issues and liaison with local therapists. Children requiring upper or lower limb surgery will be offered surgery with further assessment and follow-up in clinics run by the individual surgeons. We want to evaluate and improve the clinic and are seeking the opinion of parents with children with Arthrogryposis and young people and adults with the condition to help us do that. We would be very grateful if you would spend a few minutes answering the questions in this survey (or helping your child to do so). We will be attending the TAG event in October where we hope to meet you and discuss your answers and suggestions in more detail. Many thanks for your help!

* 1. Please tell us who you are

* 2. Do you, or did you in the past, attend a specialist arthrogryposis clinic?

* 3. If you answered "yes" to Q2, can you tell us how useful you thought it was on a scale of 0-5 (where 1 is "not useful" and 5 is "extremely useful"? [If you answered "no", please leave the slider at 0]

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i We adjusted the number you entered based on the slider’s scale.

* 4. If you answered "no" to Q2, do you think it would have been useful?

* 5. Thinking about the clinics you do attend (or attended in the past), what aspects did you find most helpful?

* 6. And what aspects do you think could be improved?

* 7. Ideally, which healthcare professionals do you think should be present in a specialist arthrogryposis clinic?

* 8. Please tell us anything else that would assist us with our goal of improving our paediatric arthrogryposis service.

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