Purpose of developing a new hypermobility multisystem symptom questionnaire The Spider
A team of specialist clinicians and researchers has recently developed a new patient questionnaire called 'The Spider'. The Spider has been designed to assess the impact of various symptoms (or problems) experienced by people with Hypermobility Spectrum Disorder (HSD) and Hypermobile Ehlers Danlos Syndromes (hEDS). This questionnaire aims to help guide treatment pathways and to monitor the impact of treatment for people with HSD and hEDS.
Before The Spider can be used in clinical practice and in research it is important that we know that it can accurately identify the specific symptoms (problems) and measure the impact of these symptoms on a person's life. We have validated seven of eight sections of this questionnaire, which you may have taken part in, but we need more information about the domain regarding digestion and bowel symptoms. This is the reason why we asking for your child/ children's help by completing this questionnaire. We need young people aged 13 to 18 with and without HSD/ hEDS to complete the questionnaire. If you have previously been involved in the Spider validation, we are so grateful for your help and would appreciate your continued participation.
What can be expected from participating?
The questionnaire will take around 10 minutes to complete, but should you need to, you/ your child can save your answers and return later. We will ask you/your child to share your experiences with your digestion and bowel habits.
Please note we need you/your child (young person) to answer the questions as best they can. If they can't understand something or need help, the parent/ guardian/ carer can help. We will not collect any personally identifying information and all questionnaire answers will be anonymous and confidential.
The decision to take part in this study or to stop participation is entirely up to you and your child. This decision will not affect your medical care in any way. Upon submission of the questionnaire, the answers will be put into a database and analysed.
By responding to this survey, you and / your child agree to have your responses included in the research analysis and results summaries. The results of this research will likely be presented at conferences and in scientific journals.
If you have any further questions to clarify regarding the research or the questionnaire, please contact Ellen Ewer via email: firstname.lastname@example.org or Dr Jane Simmonds at: email@example.com