Variable Label (VAR)	Variable Name	Category	N(%)	N(Missing)	Mean(SD)	Median(Q1,Q3)	Range of Values	
A1. Blind_ID	BLIND_ID			491(0)	471.50(272.37)	466.00(229.00,712.00)	2.00-919.00	
								
A3. Study visit	VISIT	Study Visit 8 (5 years)	242(49.3)					
								
		Study Visit 9 (6 years)	249(50.7)					
								
A5. Patient gender	GENDER	Female	192(39.1)					
								
		Male	299(60.9)					
								
A6. Form completed with/without assistance	ASSISTANCE	No	51(10.4)					
								
		Yes	440(89.6)					
								
A6a. Form completed without assistance	NOASSIST	Father	30(6.1)					
								
		Mother	391(79.6)					
								
		Other primary caregiver	19(3.9)					
								
		Skipped	51(10.4)					
								
A6b. Form completed with assistance	WITHASSIST	Father	3(0.6)					
								
		Mother	48(9.8)					
								
		Skipped	440(89.6)					
								
A7. Heart medicine	HEART_MED	No	50(10.2)					
								
		Yes	441(89.8)					
								
A8. Patient age (years) at instrument completion	PATIENT_AGE_INSTR			491(0)	5.62(0.56)	5.94(5.04,6.08)	4.75-6.94	
								
B1. Walking	WALKING	Almost Always	43(8.8)					
								
		Almost Never	106(21.6)					
								
		Missing	4(0.8)					
								
		Never	220(44.8)					
								
		Often	34(6.9)					
								
		Sometimes	84(17.1)					
								
B2. Running	RUNNING	Almost Always	49(10.0)					
								
		Almost Never	104(21.2)					
								
		Missing	7(1.4)					
								
		Never	179(36.5)					
								
		Often	45(9.2)					
								
		Sometimes	107(21.8)					
								
B3. Active play	ACT_PLAY	Almost Always	46(9.4)					
								
		Almost Never	113(23.0)					
								
		Missing	8(1.6)					
								
		Never	177(36.0)					
								
		Often	31(6.3)					
								
		Sometimes	116(23.6)					
								
B4. Lift heavy	LIFT_HEAVY	Almost Always	45(9.2)					
								
		Almost Never	97(19.8)					
								
		Missing	6(1.2)					
								
		Never	161(32.8)					
								
		Often	45(9.2)					
								
		Sometimes	137(27.9)					
								
B5. Bathing	BATHING	Almost Always	59(12.0)					
								
		Almost Never	95(19.3)					
								
		Missing	12(2.4)					
								
		Never	263(53.6)					
								
		Often	31(6.3)					
								
		Sometimes	31(6.3)					
								
B6. Pick up toys	PICKUP_TOYS	Almost Always	30(6.1)					
								
		Almost Never	100(20.4)					
								
		Missing	8(1.6)					
								
		Never	262(53.4)					
								
		Often	30(6.1)					
								
		Sometimes	61(12.4)					
								
B7. Having hurts or aches	HURTS_ACHES	Almost Always	4(0.8)					
								
		Almost Never	147(29.9)					
								
		Missing	4(0.8)					
								
		Never	163(33.2)					
								
		Often	30(6.1)					
								
		Sometimes	143(29.1)					
								
B8. Low energy level	LOW_ENERGY	Almost Always	17(3.5)					
								
		Almost Never	150(30.5)					
								
		Missing	4(0.8)					
								
		Never	183(37.3)					
								
		Often	27(5.5)					
								
		Sometimes	110(22.4)					
								
C1. Feeling afraid or scared	AFRAID	Almost Always	5(1.0)					
								
		Almost Never	160(32.6)					
								
		Missing	3(0.6)					
								
		Never	160(32.6)					
								
		Often	28(5.7)					
								
		Sometimes	135(27.5)					
								
C2. Feeling sad or blue	SAD_BLUE	Almost Always	1(0.2)					
								
		Almost Never	185(37.7)					
								
		Missing	4(0.8)					
								
		Never	221(45.0)					
								
		Often	8(1.6)					
								
		Sometimes	72(14.7)					
								
C3. Feeling angry	ANGRY	Almost Always	5(1.0)					
								
		Almost Never	132(26.9)					
								
		Missing	3(0.6)					
								
		Never	163(33.2)					
								
		Often	47(9.6)					
								
		Sometimes	141(28.7)					
								
C4. Trouble sleeping	TROUB_SLEEP	Almost Always	9(1.8)					
								
		Almost Never	131(26.7)					
								
		Missing	3(0.6)					
								
		Never	247(50.3)					
								
		Often	30(6.1)					
								
		Sometimes	71(14.5)					
								
C5. Worrying	WORRYING	Almost Always	5(1.0)					
								
		Almost Never	109(22.2)					
								
		Missing	3(0.6)					
								
		Never	303(61.7)					
								
		Often	14(2.9)					
								
		Sometimes	57(11.6)					
								
D1. Playing with other children	PLAY_OTHER	Almost Always	32(6.5)					
								
		Almost Never	127(25.9)					
								
		Missing	4(0.8)					
								
		Never	238(48.5)					
								
		Often	23(4.7)					
								
		Sometimes	67(13.6)					
								
D2. Others not wanting to play	OTH_NOTWANT	Almost Always	2(0.4)					
								
		Almost Never	122(24.8)					
								
		Missing	6(1.2)					
								
		Never	297(60.5)					
								
		Often	8(1.6)					
								
		Sometimes	56(11.4)					
								
D3. Teased	TEASED	Almost Always	2(0.4)					
								
		Almost Never	118(24.0)					
								
		Missing	5(1.0)					
								
		Never	316(64.4)					
								
		Often	5(1.0)					
								
		Sometimes	45(9.2)					
								
D4. Not able	NOTABLE	Almost Always	34(6.9)					
								
		Almost Never	105(21.4)					
								
		Missing	6(1.2)					
								
		Never	192(39.1)					
								
		Often	26(5.3)					
								
		Sometimes	128(26.1)					
								
D5. Keeping up	KEEPING_UP	Almost Always	45(9.2)					
								
		Almost Never	112(22.8)					
								
		Missing	7(1.4)					
								
		Never	161(32.8)					
								
		Often	40(8.1)					
								
		Sometimes	126(25.7)					
								
E1. Attention in class	ATTENTION	Almost Always	28(5.7)					
								
		Almost Never	106(21.6)					
								
		Missing	19(3.9)					
								
		Never	171(34.8)					
								
		Often	46(9.4)					
								
		Sometimes	121(24.6)					
								
E2. Forgetting	FORGET	Almost Always	9(1.8)					
								
		Almost Never	137(27.9)					
								
		Missing	22(4.5)					
								
		Never	186(37.9)					
								
		Often	19(3.9)					
								
		Sometimes	118(24.0)					
								
E3. School activities	SCHOOL_ACT	Almost Always	20(4.1)					
								
		Almost Never	122(24.8)					
								
		Missing	20(4.1)					
								
		Never	204(41.5)					
								
		Often	31(6.3)					
								
		Sometimes	94(19.1)					
								
E4. Not feeling well	SCHOOL_FEEL	Almost Always	5(1.0)					
								
		Almost Never	129(26.3)					
								
		Missing	18(3.7)					
								
		Never	192(39.1)					
								
		Often	35(7.1)					
								
		Sometimes	112(22.8)					
								
E5. Go to doctor	SCHOOL_DOC	Almost Always	11(2.2)					
								
		Almost Never	140(28.5)					
								
		Missing	18(3.7)					
								
		Never	145(29.5)					
								
		Often	32(6.5)					
								
		Sometimes	145(29.5)					
								
F1. Out of breath	OUT_BREATH	Almost Always	41(8.4)					
								
		Almost Never	115(23.4)					
								
		Missing	4(0.8)					
								
		Never	81(16.5)					
								
		Often	65(13.2)					
								
		Sometimes	185(37.7)					
								
F2. Chest pain	CHEST_PAIN	Almost Always	2(0.4)					
								
		Almost Never	90(18.3)					
								
		Missing	11(2.2)					
								
		Never	325(66.2)					
								
		Often	9(1.8)					
								
		Sometimes	54(11.0)					
								
F3. Catch cold	CATCH_COLD	Almost Always	26(5.3)					
								
		Almost Never	125(25.5)					
								
		Missing	2(0.4)					
								
		Never	120(24.4)					
								
		Often	78(15.9)					
								
		Sometimes	140(28.5)					
								
F4. Fast heartbeat	HEARTBEAT	Almost Always	29(5.9)					
								
		Almost Never	115(23.4)					
								
		Missing	5(1.0)					
								
		Never	126(25.7)					
								
		Often	49(10.0)					
								
		Sometimes	167(34.0)					
								
F5. Blue lips	BLUE_LIPS	Almost Always	30(6.1)					
								
		Almost Never	108(22.0)					
								
		Missing	3(0.6)					
								
		Never	180(36.7)					
								
		Often	47(9.6)					
								
		Sometimes	123(25.1)					
								
F6. Waking up	WAKING_UP	Almost Never	67(13.6)					
								
		Missing	5(1.0)					
								
		Never	393(80.0)					
								
		Often	4(0.8)					
								
		Sometimes	22(4.5)					
								
F7. More rest	MORE_REST	Almost Always	57(11.6)					
								
		Almost Never	98(20.0)					
								
		Missing	4(0.8)					
								
		Never	108(22.0)					
								
		Often	63(12.8)					
								
		Sometimes	161(32.8)					
								
G1. Refusing to take heart medicine	REFUSE_HMED	Almost Always	2(0.4)					
								
		Almost Never	30(6.1)					
								
		Missing	31(6.3)					
								
		Never	387(78.8)					
								
		Often	2(0.4)					
								
		Skipped	21(4.3)					
								
		Sometimes	18(3.7)					
								
G2. Difficulty taking heart medicine	DTAKE_HMED	Almost Always	4(0.8)					
								
		Almost Never	27(5.5)					
								
		Missing	32(6.5)					
								
		Never	398(81.1)					
								
		Often	3(0.6)					
								
		Skipped	21(4.3)					
								
		Sometimes	6(1.2)					
								
G3. Heart medicine making him/her sick	FSICK_HMED	Almost Never	25(5.1)					
								
		Missing	32(6.5)					
								
		Never	397(80.9)					
								
		Often	3(0.6)					
								
		Skipped	21(4.3)					
								
		Sometimes	13(2.6)					
								
H1. Not good looking	NOTGOOD_LOOK	Almost Never	43(8.8)					
								
		Missing	1(0.2)					
								
		Never	429(87.4)					
								
		Sometimes	18(3.7)					
								
H2. See scars	SEE_SCAR	Almost Always	9(1.8)					
								
		Almost Never	59(12.0)					
								
		Missing	2(0.4)					
								
		Never	363(73.9)					
								
		Often	10(2.0)					
								
		Sometimes	48(9.8)					
								
H3. Teased	TEASED_SCAR	Almost Always	1(0.2)					
								
		Almost Never	55(11.2)					
								
		Missing	2(0.4)					
								
		Never	415(84.5)					
								
		Often	4(0.8)					
								
		Sometimes	14(2.9)					
								
I1. Anxious waiting	ANXIOUS_WAIT	Almost Always	34(6.9)					
								
		Almost Never	102(20.8)					
								
		Missing	1(0.2)					
								
		Never	200(40.7)					
								
		Often	39(7.9)					
								
		Sometimes	115(23.4)					
								
I2. Anxious going	ANXIOUS_GO	Almost Always	31(6.3)					
								
		Almost Never	102(20.8)					
								
		Missing	1(0.2)					
								
		Never	186(37.9)					
								
		Often	35(7.1)					
								
		Sometimes	136(27.7)					
								
I3. Anxious going to the hospital	ANXIOUS_GO_H	Almost Always	44(9.0)					
								
		Almost Never	89(18.1)					
								
		Missing	3(0.6)					
								
		Never	191(38.9)					
								
		Often	46(9.4)					
								
		Sometimes	118(24.0)					
								
I4. Anxious has medical treatment	ANXIOUS_MED	Almost Always	52(10.6)					
								
		Almost Never	83(16.9)					
								
		Missing	3(0.6)					
								
		Never	137(27.9)					
								
		Often	61(12.4)					
								
		Sometimes	155(31.6)					
								
J1. Something bothers	BOTHER	Almost Always	19(3.9)					
								
		Almost Never	134(27.3)					
								
		Missing	3(0.6)					
								
		Never	162(33.0)					
								
		Often	42(8.6)					
								
		Sometimes	131(26.7)					
								
J2. Trouble with math	TROUBLE_MATH	Almost Always	50(10.2)					
								
		Almost Never	113(23.0)					
								
		Missing	13(2.6)					
								
		Never	173(35.2)					
								
		Often	34(6.9)					
								
		Sometimes	108(22.0)					
								
J3. Trouble with writing	TROUBLE_WRIT	Almost Always	69(14.1)					
								
		Almost Never	104(21.2)					
								
		Missing	11(2.2)					
								
		Never	130(26.5)					
								
		Often	56(11.4)					
								
		Sometimes	121(24.6)					
								
J4. Pay attention	PAY_ATTENT	Almost Always	22(4.5)					
								
		Almost Never	128(26.1)					
								
		Missing	10(2.0)					
								
		Never	148(30.1)					
								
		Often	41(8.4)					
								
		Sometimes	142(28.9)					
								
J5. Remembering readings	REMEMB_READ	Almost Always	30(6.1)					
								
		Almost Never	128(26.1)					
								
		Missing	7(1.4)					
								
		Never	177(36.0)					
								
		Often	25(5.1)					
								
		Sometimes	124(25.3)					
								
K1. Telling how feels	TELL_FEEL	Almost Always	44(9.0)					
								
		Almost Never	120(24.4)					
								
		Missing	3(0.6)					
								
		Never	206(42.0)					
								
		Often	36(7.3)					
								
		Sometimes	82(16.7)					
								
K2. Asking questions	ASK_QUEST	Almost Always	57(11.6)					
								
		Almost Never	103(21.0)					
								
		Missing	8(1.6)					
								
		Never	221(45.0)					
								
		Often	36(7.3)					
								
		Sometimes	66(13.4)					
								
K3. Explaining problems	EXPLAIN_PROB	Almost Always	73(14.9)					
								
		Almost Never	75(15.3)					
								
		Missing	18(3.7)					
								
		Never	223(45.4)					
								
		Often	32(6.5)					
								
		Sometimes	70(14.3)					
								
Form Version	VER_ID	A	416(84.7)					
								
		UNKNOWN	75(15.3)