Variable Label (VAR)	Variable Name	Category	N(%)	N(Missing)	Mean(SD)	Median(Q1,Q3)	Range of Values	
A1. Blind_ID	BLIND_ID			967(0)	476.74(273.09)	477.00(229.00,723.00)	2.00-919.00	
								
A3. Study visit	VISIT	Study visit 6 (3 years)	230(23.8)					
								
		Study visit 7 (4 years)	249(25.7)					
								
		Study visit 8 (5 years)	239(24.7)					
								
		Study visit 9 (6 years)	249(25.7)					
								
A5. Patient gender	GENDER	Female	374(38.7)					
								
		Male	593(61.3)					
								
A6. Form completed with/without assistance	ASSISTANCE	No	57(5.9)					
								
		Yes	910(94.1)					
								
A6a. Form completed without assistance	NOASSIST	Father	61(6.3)					
								
		Missing	1(0.1)					
								
		Mother	818(84.6)					
								
		Other primary caregiver	30(3.1)					
								
		Skipped	57(5.9)					
								
A6b. Form completed with assistance	WITHASSIST	Father	4(0.4)					
								
		Mother	52(5.4)					
								
		Other primary caregiver	1(0.1)					
								
		Skipped	910(94.1)					
								
A7. Siblings	SIBLINGS	No	185(19.1)					
								
		Skipped	1(0.1)					
								
		Yes	781(80.8)					
								
A7a. Siblings age 4	SIBLINGS_4	Missing	44(4.6)					
								
		No	137(14.2)					
								
		Skipped	142(14.7)					
								
		Yes	644(66.6)					
								
A8. Patient age (years) at instrument completion by parent or caregiver	PATIENT_AGE_INSTRUM			967(0)	4.61(1.15)	4.92(3.92,6.00)	2.76-6.94	
								
B1a. Financial problem	FINANC_PROB	Agree	194(20.1)					
								
		Disagree	414(42.8)					
								
		Missing	3(0.3)					
								
		Strongly Agree	62(6.4)					
								
		Strongly disagree	294(30.4)					
								
B1aa. Is this related to your child's health?	F_PROB_R	FULLY	74(7.7)					
								
		NOT AT ALL	46(4.8)					
								
		PARTLY	136(14.1)					
								
		Skipped	711(73.5)					
								
B1b. Additional income	ADD_INCOME	Agree	328(33.9)					
								
		Disagree	358(37.0)					
								
		Missing	4(0.4)					
								
		Strongly Agree	101(10.4)					
								
		Strongly disagree	176(18.2)					
								
B1ba. Is this related to your child's health?	ADD_INCOME_R	FULLY	174(18.0)					
								
		Missing	5(0.5)					
								
		NOT AT ALL	57(5.9)					
								
		PARTLY	193(20.0)					
								
		Skipped	538(55.6)					
								
B1c. Because of my child we are not able to travel much	TRAVEL	Agree	204(21.1)					
								
		Disagree	393(40.6)					
								
		Missing	3(0.3)					
								
		Strongly Agree	106(11.0)					
								
		Strongly disagree	261(27.0)					
								
B1ca. Is this related to your child's health?	TRAVEL_R	FULLY	167(17.3)					
								
		Missing	3(0.3)					
								
		NOT AT ALL	18(1.9)					
								
		PARTLY	122(12.6)					
								
		Skipped	657(67.9)					
								
B1d. We have little desire to go out because of my child	GO_OUT	Agree	90(9.3)					
								
		Disagree	322(33.3)					
								
		Missing	2(0.2)					
								
		Strongly Agree	17(1.8)					
								
		Strongly disagree	536(55.4)					
								
B1da. Is this related to your child's health?	GO_OUT_R	FULLY	46(4.8)					
								
		Missing	2(0.2)					
								
		NOT AT ALL	16(1.7)					
								
		PARTLY	43(4.4)					
								
		Skipped	860(88.9)					
								
B1e. It is hard to find reliable person to take care of my child	REL_PERSON	Agree	271(28.0)					
								
		Disagree	274(28.3)					
								
		Missing	1(0.1)					
								
		Strongly Agree	157(16.2)					
								
		Strongly disagree	264(27.3)					
								
B1ea. Is this related to your child's health?	REL_PERSON_R	FULLY	228(23.6)					
								
		Missing	9(0.9)					
								
		NOT AT ALL	57(5.9)					
								
		PARTLY	134(13.9)					
								
		Skipped	539(55.7)					
								
B1f. Sometimes we have to change plans about going out	CH_PLANS	Agree	222(23.0)					
								
		Disagree	346(35.8)					
								
		Missing	1(0.1)					
								
		Strongly Agree	49(5.1)					
								
		Strongly disagree	349(36.1)					
								
B1fa. Is this related to your child's health?	CH_PLANS_R	FULLY	114(11.8)					
								
		Missing	6(0.6)					
								
		NOT AT ALL	27(2.8)					
								
		PARTLY	124(12.8)					
								
		Skipped	696(72.0)					
								
B1g. We see family and fiends less because of my child	SEE_FAM	Agree	105(10.9)					
								
		Disagree	315(32.6)					
								
		Missing	1(0.1)					
								
		Strongly Agree	33(3.4)					
								
		Strongly disagree	513(53.1)					
								
B1ga. Is this related to your child's health?	SEE_FAM_R	FULLY	64(6.6)					
								
		Missing	3(0.3)					
								
		NOT AT ALL	17(1.8)					
								
		PARTLY	54(5.6)					
								
		Skipped	829(85.7)					
								
B1h. Because of the experience we've been through we are a closer	CLOSER_FAM	Agree	340(35.2)					
								
		Disagree	77(8.0)					
								
		Missing	1(0.1)					
								
		Strongly Agree	537(55.5)					
								
		Strongly disagree	12(1.2)					
								
B1ha. Is this related to your child's health?	CLOSER_FAM_R	FULLY	316(32.7)					
								
		Missing	56(5.8)					
								
		NOT AT ALL	97(10.0)					
								
		PARTLY	497(51.4)					
								
		Skipped	1(0.1)					
								
B1i. Relatives help	RELATIV_HELP	Agree	344(35.6)					
								
		Disagree	57(5.9)					
								
		Strongly Agree	548(56.7)					
								
		Strongly disagree	18(1.9)					
								
B1ia. Is this related to your child's health?	RELAT_HELP_R	FULLY	320(33.1)					
								
		Missing	50(5.2)					
								
		NOT AT ALL	141(14.6)					
								
		PARTLY	456(47.2)					
								
B1j. No more children	NO_CHILD	Agree	271(28.0)					
								
		Disagree	182(18.8)					
								
		Missing	4(0.4)					
								
		Strongly Agree	323(33.4)					
								
		Strongly disagree	187(19.3)					
								
B1ja. Is this related to your child's health?	NO_CHILD_R	FULLY	164(17.0)					
								
		Missing	9(0.9)					
								
		NOT AT ALL	223(23.1)					
								
		PARTLY	198(20.5)					
								
		Skipped	373(38.6)					
								
B1k. Discuss child problem	DISCUSS	Agree	454(46.9)					
								
		Disagree	43(4.4)					
								
		Missing	2(0.2)					
								
		Strongly Agree	453(46.8)					
								
		Strongly disagree	15(1.6)					
								
B1ka. Is this related to your child's health?	DISCUSS_R	FULLY	296(30.6)					
								
		Missing	44(4.6)					
								
		NOT AT ALL	162(16.8)					
								
		PARTLY	463(47.9)					
								
		Skipped	2(0.2)					
								
B1l. No much time	MUCH_TIME	Agree	128(13.2)					
								
		Disagree	448(46.3)					
								
		Missing	2(0.2)					
								
		Strongly Agree	17(1.8)					
								
		Strongly disagree	372(38.5)					
								
B1la. Is this related to your child's health?	MUCH_TIME_R	FULLY	40(4.1)					
								
		Missing	1(0.1)					
								
		NOT AT ALL	20(2.1)					
								
		PARTLY	84(8.7)					
								
		Skipped	822(85.0)					
								
B1m. Relatives interfere	INTERFERE	Agree	155(16.0)					
								
		Disagree	447(46.2)					
								
		Missing	3(0.3)					
								
		Strongly Agree	32(3.3)					
								
		Strongly disagree	330(34.1)					
								
B1ma. Is this related to your child's health?	INTERFERE_R	FULLY	53(5.5)					
								
		Missing	4(0.4)					
								
		NOT AT ALL	32(3.3)					
								
		PARTLY	98(10.1)					
								
		Skipped	780(80.7)					
								
B1n. Gives up	GIVES_UP	Agree	224(23.2)					
								
		Disagree	391(40.4)					
								
		Missing	1(0.1)					
								
		Strongly Agree	49(5.1)					
								
		Strongly disagree	302(31.2)					
								
B1na. Is this related to your child's health?	GIVES_UP_R	FULLY	100(10.3)					
								
		Missing	3(0.3)					
								
		NOT AT ALL	27(2.8)					
								
		PARTLY	143(14.8)					
								
		Skipped	694(71.8)					
								
B1o. Being tired	TIRED	Agree	348(36.0)					
								
		Disagree	353(36.5)					
								
		Missing	1(0.1)					
								
		Strongly Agree	123(12.7)					
								
		Strongly disagree	142(14.7)					
								
B1oa. Is this related to your child's health?	TIRED_R	FULLY	42(4.3)					
								
		Missing	5(0.5)					
								
		NOT AT ALL	222(23.0)					
								
		PARTLY	202(20.9)					
								
		Skipped	496(51.3)					
								
B1p. Plan for the future	FUTURE	Agree	142(14.7)					
								
		Disagree	489(50.6)					
								
		Missing	1(0.1)					
								
		Strongly Agree	36(3.7)					
								
		Strongly disagree	299(30.9)					
								
B1pa. Is this related to your child's health?	FUTURE_R	FULLY	53(5.5)					
								
		Missing	2(0.2)					
								
		NOT AT ALL	44(4.6)					
								
		PARTLY	79(8.2)					
								
		Skipped	789(81.6)					
								
B1q. Burden	BURDEN	Agree	271(28.0)					
								
		Disagree	431(44.6)					
								
		Missing	2(0.2)					
								
		Strongly Agree	67(6.9)					
								
		Strongly disagree	196(20.3)					
								
B1qa. Is this related to your child's health?	BURDEN_R	FULLY	170(17.6)					
								
		Missing	6(0.6)					
								
		NOT AT ALL	16(1.7)					
								
		PARTLY	146(15.1)					
								
		Skipped	629(65.0)					
								
B1r. Strain	STRAIN	Agree	216(22.3)					
								
		Disagree	444(45.9)					
								
		Strongly Agree	43(4.4)					
								
		Strongly disagree	264(27.3)					
								
B1ra. Is this related to your child's health?	STRAIN_R	FULLY	145(15.0)					
								
		Missing	5(0.5)					
								
		NOT AT ALL	17(1.8)					
								
		PARTLY	92(9.5)					
								
		Skipped	708(73.2)					
								
B1s. Learning	LEARNING	Agree	468(48.4)					
								
		Disagree	88(9.1)					
								
		Strongly Agree	394(40.7)					
								
		Strongly disagree	17(1.8)					
								
B1sa. Is this related to your child's health?	LEARNING_R	FULLY	360(37.2)					
								
		Missing	31(3.2)					
								
		NOT AT ALL	144(14.9)					
								
		PARTLY	430(44.5)					
								
		Skipped	2(0.2)					
								
B1t. Worry	WORRY	Agree	323(33.4)					
								
		Disagree	110(11.4)					
								
		Missing	1(0.1)					
								
		Strongly Agree	503(52.0)					
								
		Strongly disagree	30(3.1)					
								
B1ta. Is this related to your child's health?	WORRY_R	FULLY	546(56.5)					
								
		Missing	20(2.1)					
								
		NOT AT ALL	33(3.4)					
								
		PARTLY	227(23.5)					
								
		Skipped	141(14.6)					
								
B1u. Stable	STABLE	Agree	357(36.9)					
								
		Disagree	305(31.5)					
								
		Missing	2(0.2)					
								
		Strongly Agree	184(19.0)					
								
		Strongly disagree	119(12.3)					
								
B1ua. Is this related to your child's health?	STABLE_R	FULLY	338(35.0)					
								
		Missing	12(1.2)					
								
		NOT AT ALL	12(1.2)					
								
		PARTLY	179(18.5)					
								
		Skipped	426(44.1)					
								
B1v. Stop work	STOP_WORK	Missing	3(0.3)					
								
		No	521(53.9)					
								
		Yes	443(45.8)					
								
B1va. Is this related to your child's health?	STOP_WORK_R	FULLY	289(29.9)					
								
		Missing	8(0.8)					
								
		NOT AT ALL	26(2.7)					
								
		PARTLY	120(12.4)					
								
		Skipped	524(54.2)					
								
B1w. Job	JOB	Missing	2(0.2)					
								
		No	171(17.7)					
								
		Yes	794(82.1)					
								
B1wa. Is this related to your child's health?	JOB_R	FULLY	30(3.1)					
								
		Missing	40(4.1)					
								
		NOT AT ALL	67(6.9)					
								
		PARTLY	34(3.5)					
								
		Skipped	796(82.3)					
								
B2a. Lost time	TIME_LOST	Agree	318(32.9)					
								
		Disagree	252(26.1)					
								
		Missing	42(4.3)					
								
		Skipped	131(13.5)					
								
		Strongly Agree	121(12.5)					
								
		Strongly disagree	103(10.7)					
								
B2aa. Is this related to your child's health?	TIME_LOST_R	FULLY	284(29.4)					
								
		Missing	2(0.2)					
								
		NOT AT ALL	10(1.0)					
								
		PARTLY	143(14.8)					
								
		Skipped	528(54.6)					
								
B2b. Cut down	CUT_DOWN	Agree	153(15.8)					
								
		Disagree	376(38.9)					
								
		Missing	55(5.7)					
								
		Skipped	131(13.5)					
								
		Strongly Agree	59(6.1)					
								
		Strongly disagree	193(20.0)					
								
B2ba. Is this related to your child's health?	CUT_DOWN_R	FULLY	110(11.4)					
								
		Missing	1(0.1)					
								
		NOT AT ALL	11(1.1)					
								
		PARTLY	90(9.3)					
								
		Skipped	755(78.1)					
								
B3a. Special	SPECIAL	Agree	96(9.9)					
								
		Disagree	488(50.5)					
								
		Missing	32(3.3)					
								
		Strongly Agree	26(2.7)					
								
		Strongly disagree	325(33.6)					
								
B3aa. Is this related to your child's health?	SPECIAL_R	FULLY	64(6.6)					
								
		Missing	1(0.1)					
								
		NOT AT ALL	4(0.4)					
								
		PARTLY	53(5.5)					
								
		Skipped	845(87.4)					
								
B3b. Treated	TREATED	Agree	393(40.6)					
								
		Disagree	294(30.4)					
								
		Missing	4(0.4)					
								
		Strongly Agree	88(9.1)					
								
		Strongly disagree	188(19.4)					
								
B3ba. Is this related to your child's health?	TREATED_R	FULLY	390(40.3)					
								
		Missing	55(5.7)					
								
		NOT AT ALL	224(23.2)					
								
		PARTLY	294(30.4)					
								
		Skipped	4(0.4)					
								
B3c. Treat same	TREAT_SAME	Agree	400(41.4)					
								
		Disagree	56(5.8)					
								
		Missing	7(0.7)					
								
		Strongly Agree	492(50.9)					
								
		Strongly disagree	12(1.2)					
								
B3ca. Is this related to your child's health?	TREAT_SAME_R	FULLY	333(34.4)					
								
		Missing	24(2.5)					
								
		NOT AT ALL	213(22.0)					
								
		PARTLY	322(33.3)					
								
		Skipped	75(7.8)					
								
B4a. Attention	ATTENTION	Agree	129(13.3)					
								
		Disagree	361(37.3)					
								
		Missing	46(4.8)					
								
		Skipped	142(14.7)					
								
		Strongly Agree	31(3.2)					
								
		Strongly disagree	258(26.7)					
								
B4aa. Is this related to your child's health?	ATTENTION_R	FULLY	65(6.7)					
								
		Missing	3(0.3)					
								
		NOT AT ALL	6(0.6)					
								
		PARTLY	86(8.9)					
								
		Skipped	807(83.5)					
								
B4b. Siblings worry	SIB_WORRY	Agree	291(30.1)					
								
		Disagree	267(27.6)					
								
		Missing	49(5.1)					
								
		Skipped	142(14.7)					
								
		Strongly Agree	115(11.9)					
								
		Strongly disagree	103(10.7)					
								
B4ba. Is this related to your child's health?	SIB_WORRY_R	FULLY	65(6.7)					
								
		Missing	13(1.3)					
								
		NOT AT ALL	186(19.2)					
								
		PARTLY	142(14.7)					
								
		Skipped	561(58.0)					
								
B4c. Fighting	FIGHTING	Agree	85(8.8)					
								
		Disagree	288(29.8)					
								
		Missing	79(8.2)					
								
		Skipped	249(25.7)					
								
		Strongly Agree	13(1.3)					
								
		Strongly disagree	253(26.2)					
								
B4ca. Is this related to your child's health?	FIGHTING_R	FULLY	8(0.8)					
								
		Missing	3(0.3)					
								
		NOT AT ALL	51(5.3)					
								
		PARTLY	36(3.7)					
								
		Skipped	869(89.9)					
								
B4d. Frightened	FRIGHTENED	Agree	20(2.1)					
								
		Disagree	199(20.6)					
								
		Missing	80(8.3)					
								
		Skipped	249(25.7)					
								
		Strongly Agree	1(0.1)					
								
		Strongly disagree	418(43.2)					
								
B4da. Is this related to your child's health?	FRIGHTENED_R	FULLY	7(0.7)					
								
		NOT AT ALL	2(0.2)					
								
		PARTLY	12(1.2)					
								
		Skipped	946(97.8)					
								
B4e. Medical problems	MED_PROB	Agree	22(2.3)					
								
		Disagree	226(23.4)					
								
		Missing	77(8.0)					
								
		Skipped	249(25.7)					
								
		Strongly Agree	5(0.5)					
								
		Strongly disagree	388(40.1)					
								
B4ea. Is this related to your child's health?	MED_PROB_R	FULLY	5(0.5)					
								
		Missing	3(0.3)					
								
		NOT AT ALL	6(0.6)					
								
		PARTLY	13(1.3)					
								
		Skipped	940(97.2)					
								
B4f. Grades	GRADES	Agree	12(1.2)					
								
		Disagree	197(20.4)					
								
		Missing	81(8.4)					
								
		Skipped	249(25.7)					
								
		Strongly disagree	428(44.3)					
								
B4fa. Is this related to your child's health?	GRADES_R	FULLY	1(0.1)					
								
		NOT AT ALL	2(0.2)					
								
		PARTLY	9(0.9)					
								
		Skipped	955(98.8)					
								
Form Version	VER_ID	A	892(92.2)					
								
		UNKNOWN	75(7.8)