Table 3.
Response options | |||||
---|---|---|---|---|---|
0 | 1 | 2 | 3 | 4 | |
Item | N (%) | N (%) | N (%) | N (%) | N (%) |
Motor skillsa | 38 (0.6) | 741 (11.8) | 1510 (24.0) | 2170 (34.5) | 1827 (29.1) |
Communication skillsb | 117 (1.9) | 3451 (54.9) | 1412 (22.5) | 652 (10.4) | 658 (10.5) |
Poor eye/social contactc | 1661 (26.4) | 2229 (35.4) | 1598 (25.4) | 615 (9.8) | 189 (3.0) |
Lack of sustained interestc | 1711 (27.2) | 1829 (29.1) | 1737 (27.6) | 740 (11.8) | 274 (4.4) |
Irritability/cryingc | 4957 (78.8) | 995 (15.8) | 223 (3.5) | 71 (1.1) | 46 (0.7) |
Overactive/passivec | 4179 (66.4) | 624 (9.9) | 620 (9.9) | 477 (7.6) | 392 (6.2) |
Does not reach for objects or peoplec | 1773 (28.2) | 615 (9.8) | 807 (12.8) | 722 (11.5) | 2373 (37.7) |
Does not respond to spoken words/acts deafc | 1262 (20.1) | 1894 (30.1) | 1741 (27.7) | 754 (12.0) | 639 (10.2) |
Feeding difficultiesd | 1838 (29.2) | 1364 (21.7) | 1405 (22.3) | 1118 (17.8) | 563 (9.0) |
Chewing difficultiese | 689 (11.0) | 2427 (38.6) | 1247 (19.8) | 689 (11.0) | 1235 (19.6) |
Toilet trainingf | 61 (1.0) | 227 (3.6) | 1280 (20.4) | 1199 (19.1) | 3520 (56.0) |
Self-mutilation/pulling hair or ears/scratchingc | 5577 (88.7) | 483 (7.7) | 141 (2.2) | 55 (0.9) | 34 (0.5) |
Aggressive behaviorc | 5713 (90.8) | 418 (6.6) | 110 (1.8) | 30 (0.5) | 20 (0.3) |
Seizuresg | 2833 (45.1) | 1344 (21.4) | 947 (15.1) | 697 (11.1) | 466 (7.4) |
Insensitivity to painh | 725 (11.5) | 3238 (51.5) | 1383 (22.0) | 814 (13.0) | 127 (2.0) |
Speech disturbancesi | 8 (0.1) | 59 (0.9) | 611 (9.7) | 4296 (68.3) | 1318 (21.0) |
Bruxismc | 3389 (53.9) | 1490 (23.7) | 725 (11.5) | 409 (6.5) | 277 (4.4) |
Breath holdingc | 2037 (32.4) | 2169 (34.5) | 1417(22.5) | 452 (7.2) | 216 (3.4) |
Hyperventilationc | 3134 (49.8) | 1627 (25.9) | 957 (15.2) | 378 (6.0) | 195 (3.1) |
Air-saliva expulsion/droolingc | 2125 (33.8) | 1894 (30.1) | 1238 (19.7) | 530 (8.4) | 504 (8.0) |
Mouthing hands/objectsc | 3441 (54.7) | 1072 (17.0) | 705 (11.2) | 560 (8.9) | 512 (8.1) |
Biting self/othersc | 5447 (86.6) | 564 (9.0) | 163 (2.6) | 59 (1.0) | 55 (1.0) |
Hand clumsinessj | 71 (1.1) | 780 (12.4) | 1045 (16.6) | 1243 (19.8) | 3152 (50.1) |
Stereotypic hand activitiesc | 144 (2.3) | 300 (4.8) | 577 (9.2) | 1069 (17.0) | 4200 (66.8) |
Ataxia/apraxiac | 87 (1.4) | 181 (2.9) | 165 (2.6) | 214 (3.44) | 5643 (89.7) |
Truncal rockingc | 3436 (54.7) | 1153 (18.3) | 1142 (18.2) | 354 (5.6) | 202 (3.2) |
Bradykinesiak | 4361 (69.3) | 452 (7.2) | 228 (10.6) | 542 (8.6) | 268 (4.3) |
Dystonial | 2792 (44.4) | 869 (13.8) | 1715 (27.3) | 593 (9.4) | 319 (5.1) |
Scoliosism | 2634 (41.9) | 1562 (24.8) | 749 (11.9) | 381 (6.1) | 963 (15.3) |
Myoclonusc | 5295 (84.2) | 713 (11.3) | 191 (3.0) | 54 (0.9) | 37 (0.6) |
Dyskinesiac | 4921 (78.3) | 867 (13.8) | 308 (4.9) | 116 (1.8) | 77 (1.2) |
Hypertonia/rigidityn | 3132 (49.8) | 1021 (16.2) | 568 (9.0) | 759 (12.1) | 810 (12.9) |
Hyperreflexiao | 4170 (66.3) | 883 (14.0) | 412 (6.6) | 588 (9.4) | 237 (3.8) |
Vasomotor disturbancesp | 2616 (41.6) | 1919 (30.5) | 1082 (17.2) | 610 (9.7) | 59 (0.9) |
0 = No regression, 1 = Dyspraxia of gait and hand use including bilateral pincer grasp, 2 = Able to walk and use one or both hands, 3 = Able to walk independently or with support or use one or both hands, 4 = No motor skills.
0 = Effective communication, 1 = Consistently makes choices (> 50% of time), 2 = Sometimes makes choices (10–50% of time), 3 = rarely makes choices (<10% of time), 4 = No communication.
0 = None, 1 = 25% of time, 2 = 50% of time, 3 = 75% of time, 4 = 100% of time.
0 = None, 1 = Occasional chocking/gagging, 2 = More than 30 min = to feed, 3 = Oral and gastrostomy feeding, 4 = Gastrostomy only.
0 = None, 1 = Course chopped, 2 = Fine chopped, 3 = Pureed or mashed, 4 = Gastrostomy.
0 = Purposeful bowel and bladder control, continent at all times, 1 = Continent during the day, 2 = Time trained, both urine and stool, 3 = Time trained, urine or stool, 4 = Totally incontinent.
0 = None, 1 = None (last 6 months), with medications, 2 = Monthly, with or without medications, 3 = Weekly, with or without medications, 4 = Daily, with or without medications.
0 = Normal or immediate response to pain, 1 = delayed response (> 5 sec) to minor pain (shots/blood draw), 2 = No response to minor pain/delayed response to moderate pain (head bump/finger pinch/small laceration/small burn), 3 = No response to moderate pain/delayed response to major pain (major laceration/bone fracture/large burn), 4 = No response to pain of any type.
0 = Fluent, 1 = Phrases/sentences, 2 = Words with meaning or intention, 3 = Vocalizations, no words, 4 = No utterances
0 = Purposeful hand use, 1 = Plays with toys or activates switches purposefully, 2 = Uses utensils/cup, may be adaptive, 3 = Finger feed only, 4 = No purposeful hand use.
0 = None, 1 = Occasional paucity of limb movement (< 10% of time), 2 = Some limb movement (<50% of time), 3 = Occasional limb movement (<10% of time), 4 = Severe lack of limb movement (95–100% of time).
0 = None, 1 = Focal dystonia, one joint, 2 = Focal dystonia, more than one joint, 3 = Generalized dystonia, >2 extremities, 4 = Fixed positional deformity.
0 = None, 1 = 1–<20°, 2 = 20 −<40°, 3 = ≥40°, 4 = Surgery.
0 = None, 1 = Ankle hypertonia/rigidity, 2 = Upper or lower limb hypertonia/rigidity, 3 = Generalized hypertonia without contractures, 4 = Generalized hypertonia with contractures.
0 = Normal muscle stretch reflexes, 1 = 4+ ankles or knees, 2 = 4+ ankle and knees with clonus, 4+ all extremities with spread or clonus, 4 = 4+ all extremities with spread and clonus.
0 = Normal temperature and color, 1 = Temperature slightly off (cool or warm), normal color, 2 = Temperature extremely off (cold or hot), mottled, 3 = Temperature off in hands or feet, color changed (blue or red), 4 = Temperature off in hands and feet, color changed.