Patient ID
Item
Indicate the patient's medical record number
integer
C1269815 (UMLS CUI [1])
Distress Thermometer Questionnaire
Item
Distress Thermometer Questionnaire
text
C0231303 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
Pediatric Sleep Questionnaire, total score
Item
Pediatric Sleep Questionnaire, total score
integer
C1521725 (UMLS CUI [1,1])
C0037313 (UMLS CUI [1,2])
C0034394 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
Item
Does your child presently require a tracheostomy?
integer
C0750528 (UMLS CUI [1,1])
C1514873 (UMLS CUI [1,2])
C0040590 (UMLS CUI [1,3])
Code List
Does your child presently require a tracheostomy?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Does your child presently require a prong (nasopharyngeal airway)?
integer
C0750528 (UMLS CUI [1,1])
C1514873 (UMLS CUI [1,2])
Code List
Does your child presently require a prong (nasopharyngeal airway)?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Has your child/have you required surgery on their/your jaw for their/your airway?
integer
C0407713 (UMLS CUI [1])
Code List
Has your child/have you required surgery on their/your jaw for their/your airway?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Does your child/do you require airway support when sleeping – CPAP?
integer
C0199451 (UMLS CUI [1,1])
C0037313 (UMLS CUI [1,2])
Code List
Does your child/do you require airway support when sleeping – CPAP?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Has the patient had surgery for the airway?
integer
C0458827 (UMLS CUI [1,1])
C0543467 (UMLS CUI [1,2])
Code List
Has the patient had surgery for the airway?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Does your child presently require a nasogastric feeding tube?
integer
C0008059 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
C1514873 (UMLS CUI [1,3])
C0192456 (UMLS CUI [1,4])
Code List
Does your child presently require a nasogastric feeding tube?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Has your child required a surgically placed feeding tube?
integer
C0008059 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
C1514873 (UMLS CUI [1,3])
C0041281 (UMLS CUI [1,4])
C0543467 (UMLS CUI [1,5])
Code List
Has your child required a surgically placed feeding tube?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Does your child presently require their liquids/food to be thickened to be safe to swallow?
integer
C0008059 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
C1514873 (UMLS CUI [1,3])
C0302908 (UMLS CUI [1,4])
C0205400 (UMLS CUI [1,5])
C0589275 (UMLS CUI [1,6])
C0008059 (UMLS CUI [2,1])
C0521116 (UMLS CUI [2,2])
C1514873 (UMLS CUI [2,3])
C0016452 (UMLS CUI [2,4])
C0205400 (UMLS CUI [2,5])
C0589275 (UMLS CUI [2,6])
Code List
Does your child presently require their liquids/food to be thickened to be safe to swallow?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Does the patient regularly aspirate their food/feeds?
integer
C0008059 (UMLS CUI [1,1])
C0449581 (UMLS CUI [1,2])
C0232071 (UMLS CUI [1,3])
Code List
Does the patient regularly aspirate their food/feeds?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Otitis media
Item
How many times has your child had an ear infection (otitis media) in the last 12 months?
text
C0008059 (UMLS CUI [1,1])
C0029882 (UMLS CUI [1,2])
C0750480 (UMLS CUI [1,3])
C4086728 (UMLS CUI [1,4])
Item
Has your child required “ear tubes” (myringotomy & tympanostomy tube procedure) to improve hearing?
integer
C0008059 (UMLS CUI [1,1])
C1514873 (UMLS CUI [1,2])
C0743375 (UMLS CUI [1,3])
C1272745 (UMLS CUI [1,4])
C0018767 (UMLS CUI [1,5])
C0184147 (UMLS CUI [2])
C0041450 (UMLS CUI [3])
Code List
Has your child required “ear tubes” (myringotomy & tympanostomy tube procedure) to improve hearing?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Does your child have difficulty with their vision?
integer
C0008059 (UMLS CUI [1,1])
C3665347 (UMLS CUI [1,2])
Code List
Does your child have difficulty with their vision?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Does your child require ointment to protect their eyes?
integer
C0008059 (UMLS CUI [1,1])
C1514873 (UMLS CUI [1,2])
C0028912 (UMLS CUI [1,3])
C0455242 (UMLS CUI [1,4])
Code List
Does your child require ointment to protect their eyes?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Has your child required surgery on their eyes?
integer
C0008059 (UMLS CUI [1,1])
C1514873 (UMLS CUI [1,2])
C0038901 (UMLS CUI [1,3])
Code List
Has your child required surgery on their eyes?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
1. Do you understand your child?
integer
C4273666 (UMLS CUI [1])
C0008059 (UMLS CUI [2,1])
C4304747 (UMLS CUI [2,2])
Code List
1. Do you understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
2. Do immediate members of your family understand your child?
integer
C4273666 (UMLS CUI [1])
C2371717 (UMLS CUI [2,1])
C4304747 (UMLS CUI [2,2])
C0008059 (UMLS CUI [2,3])
Code List
2. Do immediate members of your family understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
3. Do extended members of your family understand your child?
integer
C4273666 (UMLS CUI [1])
C0015341 (UMLS CUI [2,1])
C4304747 (UMLS CUI [2,2])
C0008059 (UMLS CUI [2,3])
Code List
3. Do extended members of your family understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
4. Do your child’s friends understand your child?
integer
C4273666 (UMLS CUI [1])
C0079382 (UMLS CUI [2,1])
C4304747 (UMLS CUI [2,2])
C0008059 (UMLS CUI [2,3])
Code List
4. Do your child’s friends understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
5. Do other acquaintances understand your child?
integer
C4273666 (UMLS CUI [1])
C0205394 (UMLS CUI [2,1])
C0337609 (UMLS CUI [2,2])
C4304747 (UMLS CUI [2,3])
C0008059 (UMLS CUI [2,4])
Code List
5. Do other acquaintances understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
6. Do your child’s teachers understand your child?
integer
C4273666 (UMLS CUI [1])
C0221457 (UMLS CUI [2,1])
C4304747 (UMLS CUI [2,2])
C0008059 (UMLS CUI [2,3])
Code List
6. Do your child’s teachers understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
7. Do strangers understand your child?
integer
C4273666 (UMLS CUI [1])
C2371722 (UMLS CUI [2,1])
C4304747 (UMLS CUI [2,2])
C0008059 (UMLS CUI [2,3])
Code List
7. Do strangers understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)