Variable Label (VAR)	Variable Name	Category	N(%)	N(Missing)	Mean(SD)	Median(Q1,Q3)	Range of Values	
A1. Blind_ID	BLIND_ID			484(0)	481.79(274.83)	486.00(230.00,736.00)	2.00-919.00	
								
A3. Study visit	VISIT	Study visit 6 (3 years)	231(47.7)					
								
		Study visit 7 (4 years)	253(52.3)					
								
A5. Patient gender	GENDER	Female	183(37.8)					
								
		Male	301(62.2)					
								
A6. Form completed with/without assistance	ASSISTANCE	No	21(4.3)					
								
		Yes	463(95.7)					
								
A6a. Form completed without assistance	NOASSIST	Father	29(6.0)					
								
		Mother	423(87.4)					
								
		Other primary caregiver	11(2.3)					
								
		Skipped	21(4.3)					
								
A6b. Form completed with assistance	WITHASSIST	Father	2(0.4)					
								
		Mother	18(3.7)					
								
		Other primary caregiver	1(0.2)					
								
		Skipped	463(95.7)					
								
A7. Daycare	DAYCARE	Missing	1(0.2)					
								
		No	232(47.9)					
								
		Yes	251(51.9)					
								
A8. Heart medicine	HEART_MED	No	50(10.3)					
								
		Yes	434(89.7)					
								
A9. Patient age (years) at instrument completion	PATIENT_AGE_INSTR			484(0)	3.58(0.50)	3.92(3.04,4.01)	2.76-4.76	
								
B1. Walking	WALKING	Almost Always	21(4.3)					
								
		Almost Never	41(8.5)					
								
		Missing	6(1.2)					
								
		Never	363(75.0)					
								
		Often	9(1.9)					
								
		Sometimes	44(9.1)					
								
B2. Running	RUNNING	Almost Always	38(7.9)					
								
		Almost Never	59(12.2)					
								
		Missing	5(1.0)					
								
		Never	295(61.0)					
								
		Often	18(3.7)					
								
		Sometimes	69(14.3)					
								
B3. Active play	ACT_PLAY	Almost Always	25(5.2)					
								
		Almost Never	95(19.6)					
								
		Missing	6(1.2)					
								
		Never	265(54.8)					
								
		Often	19(3.9)					
								
		Sometimes	74(15.3)					
								
B4. Lift heavy	LIFT_HEAVY	Almost Always	29(6.0)					
								
		Almost Never	92(19.0)					
								
		Missing	9(1.9)					
								
		Never	215(44.4)					
								
		Often	31(6.4)					
								
		Sometimes	108(22.3)					
								
B5. Bathing	BATHING	Almost Always	22(4.5)					
								
		Almost Never	42(8.7)					
								
		Missing	9(1.9)					
								
		Never	368(76.0)					
								
		Often	14(2.9)					
								
		Sometimes	29(6.0)					
								
B6. Pick up toys	PICKUP_TOYS	Almost Always	19(3.9)					
								
		Almost Never	81(16.7)					
								
		Missing	6(1.2)					
								
		Never	283(58.5)					
								
		Often	25(5.2)					
								
		Sometimes	70(14.5)					
								
B7. Having hurts or aches	HURTS_ACHES	Almost Always	9(1.9)					
								
		Almost Never	115(23.8)					
								
		Missing	12(2.5)					
								
		Never	227(46.9)					
								
		Often	21(4.3)					
								
		Sometimes	100(20.7)					
								
B8. Low energy level	LOW_ENERGY	Almost Always	8(1.7)					
								
		Almost Never	107(22.1)					
								
		Missing	7(1.4)					
								
		Never	220(45.5)					
								
		Often	27(5.6)					
								
		Sometimes	115(23.8)					
								
C1. Feeling afraid or scaring	AFRAID	Almost Always	6(1.2)					
								
		Almost Never	143(29.5)					
								
		Missing	8(1.7)					
								
		Never	156(32.2)					
								
		Often	27(5.6)					
								
		Sometimes	144(29.8)					
								
C2. Feeling sad or blue	SAD_BLUE	Almost Always	1(0.2)					
								
		Almost Never	150(31.0)					
								
		Missing	8(1.7)					
								
		Never	262(54.1)					
								
		Often	1(0.2)					
								
		Sometimes	62(12.8)					
								
C3. Feeling angry	ANGRY	Almost Always	4(0.8)					
								
		Almost Never	121(25.0)					
								
		Missing	11(2.3)					
								
		Never	182(37.6)					
								
		Often	34(7.0)					
								
		Sometimes	132(27.3)					
								
C4. Trouble sleeping	TROUB_SLEEP	Almost Always	14(2.9)					
								
		Almost Never	110(22.7)					
								
		Missing	7(1.4)					
								
		Never	233(48.1)					
								
		Often	34(7.0)					
								
		Sometimes	86(17.8)					
								
C5. Worrying	WORRYING	Almost Never	102(21.1)					
								
		Missing	12(2.5)					
								
		Never	319(65.9)					
								
		Often	7(1.4)					
								
		Sometimes	44(9.1)					
								
D1. Playing with other children	PLAY_OTHER	Almost Always	14(2.9)					
								
		Almost Never	107(22.1)					
								
		Missing	8(1.7)					
								
		Never	275(56.8)					
								
		Often	13(2.7)					
								
		Sometimes	67(13.8)					
								
D2. Others not wanting to play	OTH_NOTWANT	Almost Always	3(0.6)					
								
		Almost Never	76(15.7)					
								
		Missing	8(1.7)					
								
		Never	348(71.9)					
								
		Often	3(0.6)					
								
		Sometimes	46(9.5)					
								
D3. Teased	TEASED	Almost Always	1(0.2)					
								
		Almost Never	43(8.9)					
								
		Missing	11(2.3)					
								
		Never	411(84.9)					
								
		Sometimes	18(3.7)					
								
D4. Not able	NOTABLE	Almost Always	31(6.4)					
								
		Almost Never	90(18.6)					
								
		Missing	7(1.4)					
								
		Never	240(49.6)					
								
		Often	28(5.8)					
								
		Sometimes	88(18.2)					
								
D5. Keeping up	KEEPING_UP	Almost Always	26(5.4)					
								
		Almost Never	110(22.7)					
								
		Missing	8(1.7)					
								
		Never	190(39.3)					
								
		Often	40(8.3)					
								
		Sometimes	110(22.7)					
								
E1. Same activity	SAME_ACT	Almost Always	20(4.1)					
								
		Almost Never	44(9.1)					
								
		Missing	4(0.8)					
								
		Never	126(26.0)					
								
		Often	17(3.5)					
								
		Skipped	233(48.1)					
								
		Sometimes	40(8.3)					
								
E2. Notfeeling well	NOTFEEL_WELL	Almost Always	1(0.2)					
								
		Almost Never	57(11.8)					
								
		Missing	4(0.8)					
								
		Never	122(25.2)					
								
		Often	22(4.5)					
								
		Skipped	233(48.1)					
								
		Sometimes	45(9.3)					
								
E3. Go to doctor	GO_DOCTOR	Almost Always	6(1.2)					
								
		Almost Never	62(12.8)					
								
		Missing	4(0.8)					
								
		Never	85(17.6)					
								
		Often	17(3.5)					
								
		Skipped	233(48.1)					
								
		Sometimes	77(15.9)					
								
F1. Out of breath	OUT_BREATH	Almost Always	39(8.1)					
								
		Almost Never	107(22.1)					
								
		Missing	5(1.0)					
								
		Never	87(18.0)					
								
		Often	78(16.1)					
								
		Sometimes	168(34.7)					
								
F2. Chest pain	CHEST_PAIN	Almost Always	2(0.4)					
								
		Almost Never	77(15.9)					
								
		Missing	16(3.3)					
								
		Never	356(73.6)					
								
		Often	8(1.7)					
								
		Sometimes	25(5.2)					
								
F3. Catch cold	CATCH_COLD	Almost Always	26(5.4)					
								
		Almost Never	118(24.4)					
								
		Missing	5(1.0)					
								
		Never	128(26.4)					
								
		Often	71(14.7)					
								
		Sometimes	136(28.1)					
								
F4. Fast heartbeat	HEARTBEAT	Almost Always	33(6.8)					
								
		Almost Never	104(21.5)					
								
		Missing	16(3.3)					
								
		Never	132(27.3)					
								
		Often	49(10.1)					
								
		Sometimes	150(31.0)					
								
F5. Blue lips	BLUE_LIPS	Almost Always	42(8.7)					
								
		Almost Never	113(23.3)					
								
		Missing	11(2.3)					
								
		Never	157(32.4)					
								
		Often	35(7.2)					
								
		Sometimes	126(26.0)					
								
F6. Waking up	WAKING_UP	Almost Always	1(0.2)					
								
		Almost Never	48(9.9)					
								
		Missing	6(1.2)					
								
		Never	400(82.6)					
								
		Often	5(1.0)					
								
		Sometimes	24(5.0)					
								
F7. More rest	MORE_REST	Almost Always	50(10.3)					
								
		Almost Never	98(20.2)					
								
		Missing	8(1.7)					
								
		Never	139(28.7)					
								
		Often	38(7.9)					
								
		Sometimes	151(31.2)					
								
G1. Refusing to take heart medicine	REFUSE_HMED	Almost Always	1(0.2)					
								
		Almost Never	61(12.6)					
								
		Missing	9(1.9)					
								
		Never	339(70.0)					
								
		Often	6(1.2)					
								
		Skipped	50(10.3)					
								
		Sometimes	18(3.7)					
								
G2. Difficulty taking heart medicine	DTAKE_HMED	Almost Always	1(0.2)					
								
		Almost Never	40(8.3)					
								
		Missing	8(1.7)					
								
		Never	369(76.2)					
								
		Often	2(0.4)					
								
		Skipped	50(10.3)					
								
		Sometimes	14(2.9)					
								
G3. Heart medicine making him/her sick	FSICK_HMED	Almost Always	1(0.2)					
								
		Almost Never	33(6.8)					
								
		Missing	9(1.9)					
								
		Never	383(79.1)					
								
		Often	2(0.4)					
								
		Skipped	50(10.3)					
								
		Sometimes	6(1.2)					
								
H1. Not good looking	NOTGOOD_LOOK	Almost Never	20(4.1)					
								
		Missing	11(2.3)					
								
		Never	443(91.5)					
								
		Often	2(0.4)					
								
		Sometimes	8(1.7)					
								
H2. See scars	SEE_SCAR	Almost Always	3(0.6)					
								
		Almost Never	31(6.4)					
								
		Missing	8(1.7)					
								
		Never	403(83.3)					
								
		Often	4(0.8)					
								
		Sometimes	35(7.2)					
								
H3. See body	SEE_BODY	Almost Always	3(0.6)					
								
		Almost Never	34(7.0)					
								
		Missing	11(2.3)					
								
		Never	412(85.1)					
								
		Often	4(0.8)					
								
		Sometimes	20(4.1)					
								
I1. Anxious waiting	ANXIOUS_WAIT	Almost Always	39(8.1)					
								
		Almost Never	70(14.5)					
								
		Missing	7(1.4)					
								
		Never	194(40.1)					
								
		Often	43(8.9)					
								
		Sometimes	131(27.1)					
								
I2. Anxious going	ANXIOUS_GO	Almost Always	34(7.0)					
								
		Almost Never	76(15.7)					
								
		Missing	9(1.9)					
								
		Never	200(41.3)					
								
		Often	40(8.3)					
								
		Sometimes	125(25.8)					
								
I3. Anxious going to the hospital	ANXIOUS_GO_H	Almost Always	48(9.9)					
								
		Almost Never	65(13.4)					
								
		Missing	11(2.3)					
								
		Never	200(41.3)					
								
		Often	47(9.7)					
								
		Sometimes	113(23.3)					
								
I4. Anxious has medical treatment	ANXIOUS_MED	Almost Always	79(16.3)					
								
		Almost Never	60(12.4)					
								
		Missing	9(1.9)					
								
		Never	129(26.7)					
								
		Often	56(11.6)					
								
		Sometimes	151(31.2)					
								
J1. Something bothers	BOTHER	Almost Always	13(2.7)					
								
		Almost Never	132(27.3)					
								
		Missing	12(2.5)					
								
		Never	173(35.7)					
								
		Often	40(8.3)					
								
		Sometimes	114(23.6)					
								
J2. Pay attention	PAY_ATTENT	Almost Always	8(1.7)					
								
		Almost Never	141(29.1)					
								
		Missing	8(1.7)					
								
		Never	138(28.5)					
								
		Often	35(7.2)					
								
		Sometimes	154(31.8)					
								
J3. Remembering readings	REMEMB_READ	Almost Always	18(3.7)					
								
		Almost Never	133(27.5)					
								
		Missing	15(3.1)					
								
		Never	216(44.6)					
								
		Often	22(4.5)					
								
		Sometimes	80(16.5)					
								
K1. Telling how feels	TELL_FEEL	Almost Always	55(11.4)					
								
		Almost Never	102(21.1)					
								
		Missing	26(5.4)					
								
		Never	193(39.9)					
								
		Often	23(4.8)					
								
		Sometimes	85(17.6)					
								
K2. Asking questions	ASK_QUEST	Almost Always	70(14.5)					
								
		Almost Never	78(16.1)					
								
		Missing	31(6.4)					
								
		Never	219(45.2)					
								
		Often	23(4.8)					
								
		Sometimes	63(13.0)					
								
K3. Explaining problems	EXPLAIN_PROB	Almost Always	98(20.2)					
								
		Almost Never	45(9.3)					
								
		Missing	51(10.5)					
								
		Never	220(45.5)					
								
		Often	23(4.8)					
								
		Sometimes	47(9.7)					
								
Form Version	VER_ID	A	484(100.0)