Content for Families, Carers and Professionals

Pain Questionnaire for parents of CDKL5 disorder

Pain Questionnaire for parents of CDKL5 disorder children (modified from the Pain Sensitivity Questionnaire---PSQ)

Prof. Simone Di Giovanni, Imperial College London

This questionnaire has been designed for parents of children affected by CDKL5 disorder and it contains questions that address the sensitivity to peripheral painful stimuli.  It tests the hypothesis that pain responses are REDUCED in CDKL5 patients. By answering the questions below, you will provide the information necessary to an initial investigation of painful responses in CDKL5 disorder. It is important to investigate and characterize painful responses in CDKL5 children, as “tomorrow´s gene therapy” may not only be directed to target the brain but also areas of the nervous system involved in pain processing.

***** AS THIS QUESTIONNAIRE IS MODIFIED PLEASE NOTE NOT ALL QUESTIONS WILL BE RELEVANT TO YOUR CHILD****

This questionnaire is divided in 2 sections and should take you a few minutes to complete.

 

A. Please rank your child´s pain response from 1 to 3 being 1= severely impaired pain response; 2= moderately impaired pain response; 3= normal pain response.

B. Please answer the following questions by marking YES, NO or NOT SURE

As always CDKL5 UK and our researchers would like to thank you for taking the time to answer these questions, after all your support is vital in understanding this complex disorder.