Variable Label (VAR)	Variable Name	Category	N(%)	N(Missing)	Mean(SD)	Median(Q1,Q3)	Range of Values	
A1. Blind_ID	BLIND_ID			970(0)	476.61(273.13)	477.00(229.00,723.00)	2.00-919.00	
								
A3. Study visit	VISIT	Study visit 6 (3 years)	231(23.8)					
								
		Study visit 7 (4 years)	251(25.9)					
								
		Study visit 8 (5 years)	239(24.6)					
								
		Study visit 9 (6 years)	249(25.7)					
								
A5. Patient gender	GENDER	Female	376(38.8)					
								
		Male	594(61.2)					
								
A6. Form completed without assistance?	ASSIST	No	60(6.2)					
								
		Yes	910(93.8)					
								
A6a. Form completed without assistance	NOASSIST	Father	62(6.4)					
								
		Mother	818(84.3)					
								
		Other primary caregiver	30(3.1)					
								
		Skipped	60(6.2)					
								
A6b. Form completed with assistance	WITHASSIST	Father	4(0.4)					
								
		Mother	55(5.7)					
								
		Other primary caregiver	1(0.1)					
								
		Skipped	910(93.8)					
								
B1a. Eat well?	EAT_WELL	Almost always	595(61.3)					
								
		Missing	2(0.2)					
								
		Never or rarely	69(7.1)					
								
		Some of the time	304(31.3)					
								
B1ai. Was this due to illness?	EAT_ILLN	FULLY	48(4.9)					
								
		Missing	6(0.6)					
								
		NOT AT ALL	226(23.3)					
								
		PARTLY	95(9.8)					
								
		Skipped	595(61.3)					
								
B1b. Sleep well?	SLEEP_WELL	Almost always	760(78.4)					
								
		Never or rarely	26(2.7)					
								
		Some of the time	184(19.0)					
								
B1bi. Was this due to illness?	SLEEP_ILLN	FULLY	23(2.4)					
								
		Missing	4(0.4)					
								
		NOT AT ALL	112(11.5)					
								
		PARTLY	71(7.3)					
								
		Skipped	760(78.4)					
								
B1c. Seem contended and cheerful?	CHEERFUL	Almost always	863(89.0)					
								
		Missing	1(0.1)					
								
		Never or rarely	3(0.3)					
								
		Some of the time	103(10.6)					
								
B1ci. Was this due to illness?	CHEER_ILLN	FULLY	14(1.4)					
								
		Missing	4(0.4)					
								
		NOT AT ALL	61(6.3)					
								
		PARTLY	28(2.9)					
								
		Skipped	863(89.0)					
								
B1d. Act moody?	ACT_MOODY	Almost always	35(3.6)					
								
		Missing	2(0.2)					
								
		Never or rarely	482(49.7)					
								
		Some of the time	451(46.5)					
								
B1di. Was this due to illness?	ACT_ILLN	FULLY	11(1.1)					
								
		Missing	20(2.1)					
								
		NOT AT ALL	329(33.9)					
								
		PARTLY	128(13.2)					
								
		Skipped	482(49.7)					
								
B1e. Communicate what (he/she) wanted?	COMMUNIC	Almost always	840(86.6)					
								
		Never or rarely	24(2.5)					
								
		Some of the time	106(10.9)					
								
B1ei. Was this due to illness?	COMMUN_ILLN	FULLY	22(2.3)					
								
		Missing	6(0.6)					
								
		NOT AT ALL	71(7.3)					
								
		PARTLY	31(3.2)					
								
		Skipped	840(86.6)					
								
B1f. Seem to feel sick and tired?	SICK_TIRED	Almost always	20(2.1)					
								
		Missing	2(0.2)					
								
		Never or rarely	636(65.6)					
								
		Some of the time	312(32.2)					
								
B1fi. Was this due to illness?	SICK_ILLN	FULLY	93(9.6)					
								
		Missing	11(1.1)					
								
		NOT AT ALL	70(7.2)					
								
		PARTLY	160(16.5)					
								
		Skipped	636(65.6)					
								
B1g. Occupy (him/herself)?	OCCUPY	Almost always	714(73.6)					
								
		Missing	1(0.1)					
								
		Never or rarely	31(3.2)					
								
		Some of the time	224(23.1)					
								
B1gi. Was this due to illness?	OCCUPY_ILLN	FULLY	15(1.5)					
								
		Missing	14(1.4)					
								
		NOT AT ALL	205(21.1)					
								
		PARTLY	22(2.3)					
								
		Skipped	714(73.6)					
								
B1h. Seem lively and energetic?	LIVELY_ENERG	Almost always	809(83.4)					
								
		Missing	2(0.2)					
								
		Never or rarely	11(1.1)					
								
		Some of the time	148(15.3)					
								
B1hi. Was this due to illness?	LIVELY_ILLN	FULLY	38(3.9)					
								
		Missing	5(0.5)					
								
		NOT AT ALL	60(6.2)					
								
		PARTLY	58(6.0)					
								
		Skipped	809(83.4)					
								
B1i. Seem unusually irritable or cross?	IRRITABLE	Almost always	17(1.8)					
								
		Missing	3(0.3)					
								
		Never or rarely	727(74.9)					
								
		Some of the time	223(23.0)					
								
B1ii. Was this due to illness?	IRRIT_ILLN	FULLY	29(3.0)					
								
		Missing	12(1.2)					
								
		NOT AT ALL	131(13.5)					
								
		PARTLY	71(7.3)					
								
		Skipped	727(74.9)					
								
B1j. Sleep through the night?	SLEEP_NIGHT	Almost always	742(76.5)					
								
		Missing	2(0.2)					
								
		Never or rarely	51(5.3)					
								
		Some of the time	175(18.0)					
								
B1ji. Was this due to illness?	NIGHT_ILLN	FULLY	26(2.7)					
								
		Missing	9(0.9)					
								
		NOT AT ALL	135(13.9)					
								
		PARTLY	58(6.0)					
								
		Skipped	742(76.5)					
								
B1k. Respond to your attention?	ATTENTION	Almost always	866(89.3)					
								
		Never or rarely	6(0.6)					
								
		Some of the time	98(10.1)					
								
B1ki. Was this due to illness?	ATTENT_ILLN	FULLY	11(1.1)					
								
		Missing	6(0.6)					
								
		NOT AT ALL	68(7.0)					
								
		PARTLY	19(2.0)					
								
		Skipped	866(89.3)					
								
B1l. Seem unusually difficult?	DIFFICULT	Almost always	27(2.8)					
								
		Missing	2(0.2)					
								
		Never or rarely	662(68.2)					
								
		Some of the time	279(28.8)					
								
B1li. Was this due to illness?	DIFFIC_ILLN	FULLY	21(2.2)					
								
		Missing	11(1.1)					
								
		NOT AT ALL	207(21.3)					
								
		PARTLY	69(7.1)					
								
		Skipped	662(68.2)					
								
B1m. Seem interested in what was going on around (him/her)?	INTER_AROUND	Almost always	869(89.6)					
								
		Missing	4(0.4)					
								
		Never or rarely	9(0.9)					
								
		Some of the time	88(9.1)					
								
B1mi. Was this due to illness?	INTER_ILLN	FULLY	10(1.0)					
								
		Missing	6(0.6)					
								
		NOT AT ALL	70(7.2)					
								
		PARTLY	15(1.5)					
								
		Skipped	869(89.6)					
								
B1n. React to little things by crying?	CRYING	Almost always	41(4.2)					
								
		Missing	2(0.2)					
								
		Never or rarely	469(48.4)					
								
		Some of the time	458(47.2)					
								
B1ni. Was this due to illness?	CRYING_ILLN	FULLY	17(1.8)					
								
		Missing	16(1.6)					
								
		NOT AT ALL	381(39.3)					
								
		PARTLY	87(9.0)					
								
		Skipped	469(48.4)					
								
B1o. Does your child depend on any special medical equipment ?	DEPEND_MED	Missing	251(25.9)					
								
		No	130(13.4)					
								
		Yes	589(60.7)					
								
B1oi. Was this due to illness?	DEPEND_ILLN	FULLY	101(10.4)					
								
		Missing	216(22.3)					
								
		NOT AT ALL	44(4.5)					
								
		PARTLY	20(2.1)					
								
		Skipped	589(60.7)					
								
C1a. Act afraid of new situations?	AFRAID	Almost always	38(3.9)					
								
		Missing	1(0.1)					
								
		Never or rarely	584(60.2)					
								
		Some of the time	347(35.8)					
								
C1ai. Was this due to illness?	AFRAID_ILLN	FULLY	19(2.0)					
								
		Missing	15(1.5)					
								
		NOT AT ALL	283(29.2)					
								
		PARTLY	69(7.1)					
								
		Skipped	584(60.2)					
								
C1b. Get around the house without assistence?	ASSISTANCE	Almost always	910(93.8)					
								
		Missing	1(0.1)					
								
		Never or rarely	36(3.7)					
								
		Some of the time	23(2.4)					
								
C1bi. Was this due to illness?	ASSIST_ILLN	FULLY	32(3.3)					
								
		Missing	2(0.2)					
								
		NOT AT ALL	20(2.1)					
								
		PARTLY	6(0.6)					
								
		Skipped	910(93.8)					
								
C1c. Have frequent temper tantrums?	TANTRUMS	Almost always	54(5.6)					
								
		Missing	4(0.4)					
								
		Never or rarely	560(57.7)					
								
		Some of the time	352(36.3)					
								
C1ci. Was this due to illness?	TANTRUM_ILLN	FULLY	9(0.9)					
								
		Missing	19(2.0)					
								
		NOT AT ALL	315(32.5)					
								
		PARTLY	67(6.9)					
								
		Skipped	560(57.7)					
								
C1d. Cut down on (nis/her) usual level of play activity?	DOWN_ACTIV	Almost always	14(1.4)					
								
		Missing	1(0.1)					
								
		Never or rarely	781(80.5)					
								
		Some of the time	174(17.9)					
								
C1di. Was this due to illness?	DOWN_ILLN	FULLY	65(6.7)					
								
		Missing	3(0.3)					
								
		NOT AT ALL	37(3.8)					
								
		PARTLY	84(8.7)					
								
		Skipped	781(80.5)					
								
C1e. Have trouble doing things that you though (he/she) could do?	TROUBLE	Almost always	22(2.3)					
								
		Missing	1(0.1)					
								
		Never or rarely	769(79.3)					
								
		Some of the time	178(18.4)					
								
C1ei. Was this due to illness?	TROUBLE_ILLN	FULLY	35(3.6)					
								
		Missing	6(0.6)					
								
		NOT AT ALL	105(10.8)					
								
		PARTLY	55(5.7)					
								
		Skipped	769(79.3)					
								
C1f. Pick up and throw ball or other object?	THROW_BALL	Almost always	821(84.6)					
								
		Missing	2(0.2)					
								
		Never or rarely	37(3.8)					
								
		Some of the time	110(11.3)					
								
C1fi. Was this due to illness?	THROW_ILLN	FULLY	21(2.2)					
								
		Missing	15(1.5)					
								
		NOT AT ALL	84(8.7)					
								
		PARTLY	29(3.0)					
								
		Skipped	821(84.6)					
								
C1g. Act timid or shy?	TIMID_SHY	Almost always	23(2.4)					
								
		Never or rarely	567(58.5)					
								
		Some of the time	380(39.2)					
								
C1gi. Was this due to illness?	TIMID_ILLN	FULLY	8(0.8)					
								
		Missing	13(1.3)					
								
		NOT AT ALL	331(34.1)					
								
		PARTLY	51(5.3)					
								
		Skipped	567(58.5)					
								
C1h. Need more help with eating than other children?	EAT_HELP	Almost always	152(15.7)					
								
		Never or rarely	692(71.3)					
								
		Some of the time	126(13.0)					
								
C1hi. Was this due to illness?	HELP_ILLN	FULLY	74(7.6)					
								
		Missing	14(1.4)					
								
		NOT AT ALL	112(11.5)					
								
		PARTLY	78(8.0)					
								
		Skipped	692(71.3)					
								
C1i. Act restless or fidgety?	RESTLESS	Almost always	48(4.9)					
								
		Missing	1(0.1)					
								
		Never or rarely	624(64.3)					
								
		Some of the time	297(30.6)					
								
C1ii. Was this due to illness?	REST_ILLN	FULLY	8(0.8)					
								
		Missing	11(1.1)					
								
		NOT AT ALL	231(23.8)					
								
		PARTLY	96(9.9)					
								
		Skipped	624(64.3)					
								
C1j. Concentrate or pay attention for a period of time?	CONCENTRATE	Almost always	622(64.1)					
								
		Missing	2(0.2)					
								
		Never or rarely	25(2.6)					
								
		Some of the time	321(33.1)					
								
C1ji. Was this due to illness?	CONCENT_ILLN	FULLY	21(2.2)					
								
		Missing	16(1.6)					
								
		NOT AT ALL	241(24.8)					
								
		PARTLY	70(7.2)					
								
		Skipped	622(64.1)					
								
C1k. Act nervous or tence?	NERVOUS	Almost always	6(0.6)					
								
		Missing	1(0.1)					
								
		Never or rarely	780(80.4)					
								
		Some of the time	183(18.9)					
								
C1ki. Was this due to illness?	NERV_ILLN	FULLY	15(1.5)					
								
		Missing	6(0.6)					
								
		NOT AT ALL	102(10.5)					
								
		PARTLY	67(6.9)					
								
		Skipped	780(80.4)					
								
C1l. Cut down on things (he/she) usually does?	CUT_DOWN	Almost always	14(1.4)					
								
		Missing	1(0.1)					
								
		Never or rarely	832(85.8)					
								
		Some of the time	123(12.7)					
								
C1li. Was this due to illness?	CUT_ILLN	FULLY	37(3.8)					
								
		Missing	4(0.4)					
								
		NOT AT ALL	31(3.2)					
								
		PARTLY	66(6.8)					
								
		Skipped	832(85.8)					
								
C1m. Get involed in games and other play?	GAMES	Almost always	809(83.4)					
								
		Missing	4(0.4)					
								
		Never or rarely	21(2.2)					
								
		Some of the time	136(14.0)					
								
C1mi. Was this due to illness?	GAMES_ILLN	FULLY	25(2.6)					
								
		Missing	8(0.8)					
								
		NOT AT ALL	94(9.7)					
								
		PARTLY	34(3.5)					
								
		Skipped	809(83.4)					
								
D1a. Go up and down stairs without assistance?	STAIRS	Almost always	799(82.4)					
								
		Missing	6(0.6)					
								
		Never or rarely	77(7.9)					
								
		Some of the time	88(9.1)					
								
D1ai. Was this due to illness?	STAIRS_ILLN	FULLY	53(5.5)					
								
		Missing	12(1.2)					
								
		NOT AT ALL	74(7.6)					
								
		PARTLY	32(3.3)					
								
		Skipped	799(82.4)					
								
D1b. Communicate with words so others can understand?	SPEECH	Almost always	808(83.3)					
								
		Missing	3(0.3)					
								
		Never or rarely	43(4.4)					
								
		Some of the time	116(12.0)					
								
D1bi. Was this due to illness?	SPEECH_ILLN	FULLY	41(4.2)					
								
		Missing	11(1.1)					
								
		NOT AT ALL	78(8.0)					
								
		PARTLY	32(3.3)					
								
		Skipped	808(83.3)					
								
D1c. Fight a lot with other children?	FIGHT	Almost always	22(2.3)					
								
		Missing	4(0.4)					
								
		Never or rarely	701(72.3)					
								
		Some of the time	243(25.1)					
								
D1ci. Was this due to illness?	FIGHT_ILLN	FULLY	1(0.1)					
								
		Missing	16(1.6)					
								
		NOT AT ALL	225(23.2)					
								
		PARTLY	27(2.8)					
								
		Skipped	701(72.3)					
								
D1d. Dress (him/herself)?	DRESS	Almost always	502(51.8)					
								
		Missing	6(0.6)					
								
		Never or rarely	178(18.4)					
								
		Some of the time	284(29.3)					
								
D1di. Was this due to illness?	DRESS_ILLN	FULLY	38(3.9)					
								
		Missing	18(1.9)					
								
		NOT AT ALL	360(37.1)					
								
		PARTLY	52(5.4)					
								
		Skipped	502(51.8)					
								
D1e. Play games by (him/herself)?	PLAY	Almost always	595(61.3)					
								
		Missing	4(0.4)					
								
		Never or rarely	39(4.0)					
								
		Some of the time	332(34.2)					
								
D1ei. Was this due to illness?	PLAY_ILLN	FULLY	17(1.8)					
								
		Missing	21(2.2)					
								
		NOT AT ALL	310(32.0)					
								
		PARTLY	27(2.8)					
								
		Skipped	595(61.3)					
								
D1f. Participate in hard exercise or play?	EXERCISE	Almost always	416(42.9)					
								
		Missing	5(0.5)					
								
		Never or rarely	178(18.4)					
								
		Some of the time	371(38.2)					
								
D1fi. Was this due to illness?	EXERCIS_ILLN	FULLY	94(9.7)					
								
		Missing	23(2.4)					
								
		NOT AT ALL	294(30.3)					
								
		PARTLY	143(14.7)					
								
		Skipped	416(42.9)					
								
D1g. Get undressed without help?	UNDRESSED	Almost always	630(64.9)					
								
		Missing	6(0.6)					
								
		Never or rarely	111(11.4)					
								
		Some of the time	223(23.0)					
								
D1gi. Was this due to illness?	UNDRESS_ILLN	FULLY	32(3.3)					
								
		Missing	16(1.6)					
								
		NOT AT ALL	256(26.4)					
								
		PARTLY	36(3.7)					
								
		Skipped	630(64.9)					
								
D1h. Play with other children?	PLAY_CHILD	Almost always	767(79.1)					
								
		Missing	7(0.7)					
								
		Never or rarely	17(1.8)					
								
		Some of the time	179(18.5)					
								
D1hi. Was this due to illness?	CHILD_ILLN	FULLY	18(1.9)					
								
		Missing	13(1.3)					
								
		NOT AT ALL	126(13.0)					
								
		PARTLY	46(4.7)					
								
		Skipped	767(79.1)					
								
D1i. Spend all or part of the day in the bed?	STAY_BED	Missing	6(0.6)					
								
		No	885(91.2)					
								
		Yes	79(8.1)					
								
D1ii. Was this due to illness?	STAY_ILLN	FULLY	48(4.9)					
								
		Missing	5(0.5)					
								
		NOT AT ALL	14(1.4)					
								
		PARTLY	18(1.9)					
								
		Skipped	885(91.2)					
								
D1iii. How many days stay in bed?	STAY_ILLN_D			59(911)	3.54(3.93)	2.00(1.00,4.00)	1.00-14.00	
								
E1a. Has your child been hospitalized?	HOSPITAL	Missing	20(2.1)					
								
		No	721(74.3)					
								
		Yes	229(23.6)					
								
E1ai. How many times he/she was hospitalized?	HOSP_TIME			226(744)	1.65(1.40)	1.00(1.00,2.00)	1.00-10.00	
								
E1aii. How many days he/she was hospitalized?	HOSP_TIME_D			211(759)	14.18(23.39)	7.00(2.00,14.00)	1.00-180.00	
								
F2. Relationship to child	RELATION	Biological or adoptive parent	925(95.4)					
								
		Missing	14(1.4)					
								
		Step parent, foster, guardian, or grandparent	31(3.2)					
								
F3. Highest degree	EDUCATION	4 YEAR COLLEGE GRADUATE	234(24.1)					
								
		GRADUATE DEGREE	158(16.3)					
								
		HIGH SCHOOL/GED	186(19.2)					
								
		Missing	27(2.8)					
								
		SOME COLLEGE/2 YEAR DEGREE	286(29.5)					
								
		SOME HIGH SCHOOL OR LESS	79(8.1)					
								
F4. Income for all family members for last 12 months	INCOME	20000 - 39000	170(17.5)					
								
		40000 - 59000	125(12.9)					
								
		60000-79000	87(9.0)					
								
		80000-99000	87(9.0)					
								
		Do not wish to provide	119(12.3)					
								
		Equal or more 100000	202(20.8)					
								
		Less then 20000	147(15.2)					
								
		Missing	33(3.4)					
								
Form Version	VER_ID	A	895(92.3)					
								
		UNKNOWN	75(7.7)