Cure Sickle Cell Initiative | Page 2

CDE Detailed Report

Disease: Sickle Cell Disease
Sub-Domain: Additional Proposed Instruments
CRF: PhenX Toolkit: Quality of Care - Children

79 results.

CDE ID	CDE Name	Variable Name	Definition	Short Description	Additional Notes (Question Text)	Permissible Values	Description	Data Type	Disease Specific Instructions	Disease Specific Reference	Population	Classification (e.g., Core)	Version Number	Version Date	CRF Name (CRF Module / Guideline)	Sub Domain Name	Domain Name	Input Restrictions	Min Value	Max Value	Measurement Type	Source	Form Set	Form	Field
C59319	Easy obtain care child health plan last 6 month frequency scale	EsyObtCrChHlthPlnLst6MoFrqScl	Scale of the frequency in the last 6 months that it was easy to obtain care for the child through his or her health plan	Scale of the frequency in the last 6 months that it was easy to obtain care for the child through his or her health plan	In the last 6 months, how often was it easy to get the care, tests, or treatment you thought your child needed through his or her health plan?	1;2;4;3	Never;Sometimes;Always;usually	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 15:16:41.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	24
C59294	Child more one kind health care provider service last 6 month indicate code	ChlMr1KdHthCrPvSvLst6MoIndCode	Code indicating whether child received care from more than one health care provider or service in the last 6 months.	Code indicating whether child received care from more than one health care provider or service in the last 6 months.	In the last 6 months, did your child get care from more than one kind of health care provider or use more than one kind of health care service?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-29 09:53:45.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC17
C59330	Prescription medication health condition indicate code	PrscrpMdHlthCondIndCode	Code indicating whether the subject/participant needs or uses prescription medications other than vitamins because of a health condition	Code indicating whether the subject/participant needs or uses prescription medications other than vitamins because of a health condition	Is this because of any medical, behavioral, or other health condition?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 11:46:19.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC26
C59267	Child receive timely urgent care last 6 month reliability scale	ChdRcvTmlyUrgtCrLst6MoRelScl	Scale of how reliably the child received timely urgent care in the last 6 months.	Scale of how reliably the child received timely urgent care in the last 6 months.	In the last 6 months, when your child needed care right away, how often did your child get care as soon as you thought he or she needed?	1;2;4;3	Never;Sometimes;Always;usually	Numeric Values	Collect if "Child need urgent care last 6 month indicate code" is answered 1 (Yes).	PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 11:52:32.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	4
C59309	Child personal physician talk about child feel grow behave last 6 month indicate code	ChPrPhTkAbChFlGrBhLs6MoIndCode	Code indicating whether the child's personal physician talked in the last 6 months about how the child is feeling, growing, or behaving	Code indicating whether the child's personal physician talked in the last 6 months about how the child is feeling, growing, or behaving	In the last 6 months, did your child's personal doctor talk with you about how your child is feeling, growing, or behaving?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 09:24:49.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	17
C59341	Problem emotion behavior development indicate code	PrbEmBhvDevIndCode	Code indicating whether the subject/participant has emotional, developmental, or behavioral problems for which he or she needs or receives treatment	Code indicating whether the subject/participant has emotional, developmental, or behavioral problems for which he or she needs or receives treatment	Does your child have any kind of emotional, developmental, or behavioral problem for which he or she needs or gets treatment or counseling?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 12:45:35.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC37
C59278	Child health care provider help contact school daycare last 6 month indicate code	ChdHCPvHpCntSchDycLst6MoInCode	Code indicating whether the child's health care providers helped contact school or daycare about the child's health or care in the last 6 months.	Code indicating whether the child's health care providers helped contact school or daycare about the child's health or care in the last 6 months.	In the last 6 months, did you get the help you needed from your child's doctors or other health providers in contacting your child's school or daycare?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 15:44:38.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC7
C59320	Use health plan customer service last 6 month indicate code	UseHlthPlnCustSvcLst6MoIndCode	Code indicating whether attempts were made to use customer service at the subject/participant's health plan in the last 6 months	Code indicating whether attempts were made to use customer service at the subject/participant's health plan in the last 6 months	In the last 6 months, did you try to get information or help from customer service at your child's health plan?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 10:38:36.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	25
C59295	Receive help coordinate different health care provider service last 6 month indicate code	RcHpCordDfHlCrPvSvLs6MoIndCode	Code indicating whether child's health plan, doctor's office, or clinic helped coordinate your child's care among different providers or services in the last 6 months	Code indicating whether child's health plan, doctor's office, or clinic helped coordinate your child's care among different providers or services in the last 6 months	In the last 6 months, did anyone from your child's health plan, doctor's office, or clinic help coordinate your child's care among these different providers or services?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-29 10:03:32.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC18
C59331	Prescription medication health condition endure 12 month indicate code	PrscrpMdHlthCondEnd12MoIndCode	Code indicating whether the subject/participant needs or uses prescription medications other than vitamins because of a health condition that has endured or is expected to endure for at least 12 months	Code indicating whether the subject/participant needs or uses prescription medications other than vitamins because of a health condition that has endured or is expected to endure for at least 12 months	Is this a condition that has lasted or is expected to last for at least 12 months?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 11:46:19.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC27
C59268	Child non-urgent medical appointment last 6 month indicate code	ChldNonUrgtMdApptLst6MoIndCode	Code indicating whether any non-urgent medical appointments were made for the child in the last 6 months.	Code indicating whether any non-urgent medical appointments were made for the child in the last 6 months.	In the last 6 months, not counting the times your child needed care right away, did you make any appointments for your child's health care at a doctor's office or clinic?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 12:07:49.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	5
C59310	Child personal physician rating scale	ChildPersPhyscnRatingScl	Scale for rating the child's personal physician	Scale for rating the child's personal physician	Using any number from 0 to 10, where 0 is the worst personal doctor possible and 10 is the best personal doctor possible, what number would you use to rate your child's personal doctor?	1;2;3;4;5;6;7;8;9;0;10	1;2;3;4;5;6;7;8;9;Worst personal doctor possible;Best personal doctor possible	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 15:33:42.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	18
C59342	Problem emotion behavior development endure 12 month indicate code	PrbEmBhvDevEn12MoIndCode	Code indicating whether the subject/participant's emotional, developmental, or behavioral problems for which he or she needs or receives treatment have endured or are expected to endure for at least 12 months	Code indicating whether the subject/participant's emotional, developmental, or behavioral problems for which he or she needs or receives treatment have endured or are expected to endure for at least 12 months	Has this problem lasted or is it expected to last for at least 12 months?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 12:45:35.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC38
C59285	Obtain attempt specialized medical equipment child last 6 month indicate code	ObAtSpMdEqChLst6MoIndCode	Code indicating whether specialized medical equipment or devices were obtained or attempted to be obtained for the child in the last 6 months.	Code indicating whether specialized medical equipment or devices were obtained or attempted to be obtained for the child in the last 6 months.	Special medical equipment or devices include a walker, wheelchair, nebulizer, feeding tubes, or oxygen equipment. In the last 6 months, did you get or try to get any special medical equipment or devices for your child?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-29 09:15:44.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC8
C59321	Health plan customer service provide assistance needed last 6 month frequency scale	HthPlnCusSvcPrAsNeLst6MoFrqScl	Scale of the frequency in the last 6 months that the subject/participant's health plan's customer service provided the assistance needed	Scale of the frequency in the last 6 months that the subject/participant's health plan's customer service provided the assistance needed	In the last 6 months, how often did customer service at your child's health plan give you the information or help you needed?	1;2;4;3	Never;Sometimes;Always;usually	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 10:42:23.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	26
C59296	Child have personal physician indicate code	ChldHvPrsnlPhyscnIndCode	Code indicating whether the child has a personal physician	Code indicating whether the child has a personal physician	A personal doctor is the one your child would see if he or she needs a check-up or gets sick or hurt. Does your child have a personal doctor?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-29 10:08:55.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	9
C59332	Health eductional service above average peer need indicate code	HthEdSvcAbvAvgPrNdIndCode	Code indicating whether the subject/participant has need of health or eductional services above the average need for his or her peers	Code indicating whether the subject/participant has need of health or eductional services above the average need for his or her peers	Does your child need or use more medical care, more mental health services, or more educational services than is usual for most children of the same age?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 11:54:17.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC28
C59269	Child receive timely non-urgent care last 6 month reliability scale	ChdRcvTmlyNoUrgtCrLst6MoRelScl	Scale of how reliably the child received timely non-urgent care in the last 6 months.	Scale of how reliably the child received timely non-urgent care in the last 6 months.	In the last 6 months, not counting the times your child needed care right away, how often did you get an appointment for health care at a doctor's office or clinic as soon as you thought your child needed?	1;2;3	Never;Sometimes;usually	Numeric Values	Collect if "Child non-urgent medical appointment last 6 month indicate code" is answered 1 (Yes).	PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 11:52:32.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	6
C59311	Child medical behavioral other health condition persist 3 month indicate code	ChMdBhOtHtCnPs3MoIndCode	Code indicating whether the child has any medical, behavioral, or other health conditions that have persisted for 3 months or longer	Code indicating whether the child has any medical, behavioral, or other health conditions that have persisted for 3 months or longer	Does your child have any medical, behavioral, or other health conditions that have lasted for more than 3 months?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 09:49:52.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC19
C59343	Age below 1 year code	AgeBelow1YearCode	Code indicating that the subject/participant's age is less than 1 year	Code indicating that the subject/participant's age is less than 1 year	What is your child's age?	1	Less than 1 year old	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 12:57:55.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	32
C59286	Easy obtain specialized medical equipment last 6 month frequency scale	EsyObtSpcMdEquipLst6MoFrqScl	Scale of the frequency in the last 6 months that it was easy to obtain specialized medical equipment or devices for the child.	Scale of the frequency in the last 6 months that it was easy to obtain specialized medical equipment or devices for the child.	In the last 6 months, how often was it easy to get special medical equipment or devices for your child?	1;2;4;3	Never;Sometimes;Always;usually	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 15:16:41.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC9
C59322	Health plan customer service show courtesy respect last 6 month frequency scale	HthPlnCusSvcShCoReLst6MoFrqScl	Scale of the frequency in the last 6 months that the subject/participant's health plan's customer service showed courtesy and respect	Scale of the frequency in the last 6 months that the subject/participant's health plan's customer service showed courtesy and respect	In the last 6 months, how often did customer service staff at your child's health plan treat you with courtesy and respect?	1;2;4;3	Never;Sometimes;Always;usually	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 10:42:23.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	27
C59297	Child see personal physician last 6 month count range	ChdSeePrslPhyscnLst6MoCtRng	Range of the count of times that the child was seen by his or her personal physician in the last 6 months	Range of the count of times that the child was seen by his or her personal physician in the last 6 months	In the last 6 months, how many times did your child visit his or her personal doctor for care?	None;1;2;3;4;10 or more;5 to 9	None;1;2;3;4;10 or more;5 to 9	Alphanumeric		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-29 10:12:59.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	10
C59333	Health eductional service above average peer need health condition indicate code	HthEdSvcAbvAvgPrNdHthCdIndCode	Code indicating whether the subject/participant's need of health or eductional services above the average need for his or her peers, is due to a health condition	Code indicating whether the subject/participant's need of health or eductional services above the average need for his or her peers, is due to a health condition	Is this because of any medical, behavioral, or other health condition?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 11:54:17.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC29
C59270	Child non-urgent medical appointment last 6 month count range	ChldNoUrgtMdApptLst6MoCtRng	Range of the count of non-urgent medical appointments attended by the child in the last 6 months	Range of the count of non-urgent medical appointments attended by the child in the last 6 months	In the last 6 months, not counting the times your child went to an emergency room, how many times did he or she go to a doctor's office or clinic to get health care?	None;1;2;3;4;10 or more;5 to 9	None;1;2;3;4;10 or more;5 to 9	Alphanumeric		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 12:42:34.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	7
C59312	Child personal physician understand how health condition affect child life indicate code	ChPePhUnHwHeCoAfChLfIndCode	Code indicating whether the child's personal physician understands how the child's health conditions affect the child's daily life	Code indicating whether the child's personal physician understands how the child's health conditions affect the child's daily life	Does your child's personal doctor understand how these medical, behavioral, or other health conditions affect your child's day-to-day life?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 09:49:52.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC20
C59344	Age year value	AgeYearVal	Age in years of the subject/participant	Age in years of the subject/participant	YEARS OLD			Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 13:02:27.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Free-Form Entry	1	99	year	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	32 (write in)
C59287	Receive help obtain specialized medical equipment last 6 month indicate code	RcvHpObtSpcMdEqLst6MoIndCode	Code indicating whether help obtaining specialized medical equipment or devices was received in the last 6 months	Code indicating whether help obtaining specialized medical equipment or devices was received in the last 6 months	Did anyone from your child's health plan, doctor's office, or clinic help you get special medical equipment or devices for your child?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-29 09:26:29.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC10
C59323	Health plan form to complete last 6 month indicate code	HlthPlanFrmToCmplLst6MoIndCode	Code indicating whether the subject/participant's health plan provided any forms to complete within the last 6 months	Code indicating whether the subject/participant's health plan provided any forms to complete within the last 6 months	In the last 6 months, did your child's health plan give you any forms to fill out?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 10:50:01.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected				PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	28

79 results.