Welcome to the Pink Disease Survey! Part A - Pink Disease Survivor Background Information

Transcription

1 Welcome to the Pink Disease Survey! If you would prefer to complete this survey: Online, please go to the following website: Or By telephone interview, please contact Ms Kerrie Shandley on (Australia) to schedule an interview time. Part A - Pink Disease Survivor Background Information 1. Gender (please circle): Male Female 2. Date-of-birth: / / 3. Location (please circle): ACT NSW NT QLD TAS SA VIC WA Overseas - please specify country: 4. Pink Disease Support Group membership (please circle): Current Past Never a member 5. Person completing this survey: Pink Disease Survivor (please circle)? Yes No If no, please specify relationship to the PD Survivor: 1

2 Part B. Childhood Behaviour and Characteristics of the Pink Disease Survivor Instructions In this survey we are interested in the childhood behaviours and characteristics of the Pink Disease Survivor. Following you will see a table that lists a variety of behavioural and physical characteristics. To complete this survey, please tick YES if you (or the person you are answering on behalf of) exhibited MORE of each of these when you were a child than what would be considered normal or average. Please note: Only tick YES if the behaviour or characteristic was in evidence within the first 16 years of life. Item # Behaviour/Characteristic Yes No Unknown Behaviour 1. Exhibited repetitive behaviour 2. Lacked emotional expression regardless of situation (flat affect) 3. Anxious 4. Irritable 5. Aggressive (threw intense or violent tantrums) 6. Poor eye contact with people 7. Inappropriate reactions 8. Lack of social skills 9. Shy or socially withdrawn Speech & Language 10. Delayed language or failure to develop speech 11. Loss of language 12. Did not clearly articulate words 13. Repeated words or phrases in place of normal language (echolalia) 14. Unresponsive to verbal cues (acted as though deaf) 15. Did not respond to name 16. Used incorrect words, jumbled words, and/or had difficulty communicating thoughts in words or in writing 2

3 Item # Behaviour/Characteristic Yes No Unknown Sensory 17. Heightened sensitivity to sound 18. Heightened sensitivity to light 19. Under sensitivity to pain 20. Over sensitivity to pain Motor 21. Flapping, jerking or twitching movements 22. Poor hand-eye coordination (difficulty grasping or touching an object while looking at it) 23. Abnormal gait/walking or posture 24. Clumsiness or lack of coordination 25. Poor fine motor skills (actions requiring precise movements such as tying shoelaces or picking up a button) 26. Poor gross motor skills (large body and muscle control and coordination such as head control, sitting, crawling) 27. Unusual movement patterns 28. Unusual bodily postures 29. Unusual finger gazing 30. Unusual finger movement Cognitive 31. Poor concentration or attention 32. Unusual eye movements or difficulties focusing Other Behaviours 33. Self-injurious behaviour e.g., head-banging 34. Easily agitated, unprovoked crying 35. Unusual facial expressions e.g., grimacing 36. Staring spells 37. Sleep difficulties 3

4 Item # Behaviour/Characteristic Yes No Unknown Physical Conditions 38. Poor/low muscle tone 39. Skin problems e.g., rashes, dermatitis, eczema, itching 40. Nappy rash 41. Fever 42. Allergies e.g., dust, animal hair 43. Limited diet e.g., food sensitivity or fussiness 44. Hyperactive 45. Under active or lethargic 46. Seizures or fits 47. Constipation 48. Diarrhea 49. Perspired / sweated excessively (hyperhidrosis) 50. Night sweats (sleep hyperhidrosis) 51. Sweat had a mouse-like smell Physical Characteristics 52. Pale complexion 53. Red lips 54. Red ears, cheeks, nose or tongue 55. Swollen tongue 56. Puffy or swollen hands and/or feet 57. Hands and/or feet turned a deep pink colour 58. Distended gut (swollen or bloated in appearance) 59. Swollen and / or painful gums 60. Sudden teeth loss 61. Drooled (salivated) excessively. 62. Peeling skin on hands and / or feet 63. Coarse hair 64. Large head 4

5 Part C. Pink Disease Family Survey In this survey, we are collecting information about the Pink Disease Survivor's children, grandchildren and greatgrandchildren. Specifically we are interested to know whether any of your children, grandchildren or great-grandchildren have been diagnosed with a childhood disorder. Instructions Please complete a separate row for each child, grandchild and great grandchild in the appropriate table. Please note: Only tick the disorder if it was diagnosed within the first 16 years of life 5

6 1. Children Total number of children: If none, please go to the last page of the survey Date-of-birth (dd/mm/yyyy) Gender (M/F) Autism Asperger s ADHD Epilepsy Fragile X syndrome Mental retardation Down s Syndrome No Disorder Other condition/s* * Other condition/s may include auto-immune disorders, mental health problems, lung disorders etc. However, please only include conditions diagnosed within the first 16 years of life. 6

7 2. Grandchildren Total number of grandchildren: If none, please go to the last page of the survey Date-of-birth (dd/mm/yyyy) Gender (M/F) Autism Asperger s ADHD Epilepsy Fragile X syndrome Mental retardation Down s Syndrome No Disorder Other condition/s * If you have more than 12 grandchildren please include the additional information on the back of the survey. 7

8 3. Great Grandchildren Total number of great grandchildren: If none, please go to the last page of the survey Date-of-birth (dd/mm/yyyy) Gender (M/F) Autism Asperger s ADHD Epilepsy Fragile X syndrome Mental retardation Down s Syndrome No Disorder Other condition/s * If you have more than 12 great grandchildren please include the additional information on the back of the survey 8

9 Additional Comments Please include any additional comments or information that you think is important here: Prize Draw If you would like to be entered into a prize draw to win 1 of 10 Amazon.com or Coles/Myers gift vouchers valued at $75 (Australian) each, please include your details here. Please note that this information will only be used for contacting prize winners) Name: Postal address: Suburb/Town: State / Territory: Country: Postcode: address: Please circle your preferred gift voucher: Amazon.com Coles/Myers Thank you for completing our survey! Your participation is enormously appreciated. Please place your completed survey in the reply-paid envelope supplied (no stamp required) and post. 9