Finalised Survey Results – Epilim (Sodium Valproate)

 LogoColorTextBelow

 

INFACT Survey into Sodium Valproate was devised with the help of MHRA (Medicines Healthcare Regulatory Agency).  It was a 40 question survey going into a lot of detail, the questions and answers below are the questions with percentages attached

 

Q 1 ) What medical condition do you suffer from?

  • Epilepsy                      95.83%
  • Bipolar Disorder     1.39%
  • Migraine                     1.39%
  • Unsure                         1.39%

Q 2)  How old were you when you first received regular Sodium Valproate for the condition?

  • 16 years or below                       15.28%
  • Between 10-15 years                 29.17%
  • Between 15-20 years                 30.56%
  • Over 20 years                                25.00%

Q 3)  Was Sodium Valproate the first drug your doctor prescribed?

  • Yes      55.56%
  • No       44.44%

Q 4)  Who first prescribed Sodium Valproate?

  • GP                                  11.11%
  • Specialist                 75.00%
  • Cant remember          6.94%
  • Other                                6.94%

Q 5)  Who continued to prescribe your Sodium Valproate after the first prescription?

  • GP                         50.00%
  • Neurologist        40.28%
  • Other                         9.72%

Q 6)  Did you discuss contraception with a healthcare professional?

  • Yes                                     45.83%
  • No                                         48.61%
  • Cant remember                   5.56%

Q 7)  Did you discuss getting pregnant with your doctor before conceiving?

  • Yes                                    36.11%
  • No                                      58.33%
  • Unsure                                 5.56%

Q 8)  Were all of your children exposed to Sodium Valproate?

  • Yes                            54.17%
  • No                              45.83%

Q 9)  Have all your children been adversely affected by Sodium Valproate during pregnancy?

  • Yes                              36.11%
  • No                                52.78%
  • Unsure                           11.11%

Q 10)  If the pregnancies were planned, did you receive counselling on the known risks?

  • Yes                                          18.06%
  • No                                            76.39%
  • Cant remember                      5.56%

Q 11)  Were you offered or switched to a different medication other than Sodium Valproate prior to conceiving?

  • Yes                                           13.89%
  • No                                             80.56%
  • Unsure                                        5.56%

Q 12)  After being prescribed Valproate for some time, was it ever suggested to you to change your medication before becoming pregnant?

  • Yes                                                16.67%
  • No                                                77.78%
  • Cant remember                        5.56%

Q 13)  Was it ever suggested to you, after taking Valproate for a lengthy period and having no seizures to reduce or even stop the medication?

  • Yes                                                                     12.50%
  • No                                                                      50.00%
  • Seizures never stopped                            33.33%
  • Cant remember                                                 4.17%

Q 14)  How well was your condition controlled during pregnancy?

  • Well controlled                                               61.11%
  • Uncontrolled                                                  31.94%
  • Cant remember                                                  6.94%

Q 15)  Did the dose of your medication have to change?

  • Yes                                                                           16.67%
  • No                                                                            51.39%
  • Cant remember                                                   6.94%
  • Yes before pregnancy                                      2.78%
  • During pregnancy                                           22.22%

Q 16)  How old was the neonate/child when the problems were first noticed?

  • Birth-6 months                                                  54.17%
  • 6-12 months                                                       13.89%
  • 1-5 years                                                              30.56%
  • 5-10 years                                                            12.50%
  • Over                                                                            5.56%

Q 17)  What were the problems first noticed?

  • Spina Bifida                                                                6.94%
  • Heart Defects                                                          16.67%
  • Limb defects                                                             19.44%
  • Facial features                                                         33.33%

Q 18)  What if any of the following Developmental Problems have been noticed in your child?

  • Motor Control Problems                                                 61.11%
  • Speech delay                                                                        62.50%
  • Reduced Cognitive Functioning                                  48.61%
  • Social Difficulties                                                               66.67%
  • Autistic Spectrum Disorders                                        50.00%
  • Behavioural Problems                                                    50.00%
  • ADHD                                                                                     30.56%

Q 19)  How old was your child when any specialist referral took place?

  • At birth                                                                                 36.11%
  • 1-5 years                                                                               41.67%
  • 5-10 years                                                                           16.67%
  • Over 10                                                                                  5.56%

Q 20)  Was it explained to you that your child may be at risk from Fetal Anti Convulsant Syndrome?

  • Yes                                                                                          26.39%
  • No                                                                                           70.83% 
  • Cant remember                                                                  2.78%

Q 21)  Was there any correspondence/letter sent to you from the specialist confirming a diagnosed condition?

  • Yes                                                                                        34.72%
  • No                                                                                          52.78%
  • Cant remember                                                                12.50%

Q 22)  If you received a letter of diagnosis was any information given to you explaining the diagnosed condition to you?

  • Yes                                                                                        8.33%
  • No                                                                                        73.61%
  • Cant remember                                                             18.06%

Q 23)  Were you asked to complete a Yellow form by your Doctor reporting your childs symptoms?

  • Yes                                                                                    2.78%
  • No                                                                                    83.33%
  • Cant remember                                                          13.89%

Q 24)  If you did not complete the yellow form, to your knowledge, did your doctor complete one reporting your child being affected by your medicine?

  • Yes                                                                                 1.39%
  • No                                                                                 56.94%
  • Not sure                                                                      41.67%

Q 25) Were you made aware of, by your doctor, specialist and or GP, any support groups/organisations, locally or nationally who could help and give advice on Valproate in Pregnancy?

  • Yes                                                                               12.50%
  • No                                                                                  81.94%
  • Cant remember                                                         5.56%

Q 26)  Would you like to receive any of the following?

  • FACSA leaflet                                                            90.00%
  • INFACT Leaflet                                                        80.00%
  • Parent Guide                                                             85.00%
  • Education Guide                                                      80.00%

 

 

Leave a Reply

Your email address will not be published. Required fields are marked *