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	Size	Input Restrictions	Source	Form Set	Form	Field
C59289	Easy obtain special therapy child last 6 month frequency scale	EsyObtSpcTherChLst6MoFrqScl	Scale of the frequency in the last 6 months that it was easy to obtain special therapy for the child.	Scale of the frequency in the last 6 months that it was easy to obtain special therapy for the child.	In the last 6 months, how often was it easy to get this therapy 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	CC12
C59325	Health plan rating scale	HlthPlanRatingScl	Scale for rating the subject/participant's health plan	Scale for rating the subject/participant's health plan	Using any number from 0 to 10, where 0 is the worst health plan possible and 10 is the best health plan possible, what number would you use to rate your child's health plan?	1;2;3;4;5;6;7;8;9;0;10	1;2;3;4;5;6;7;8;9;Worst health plan possible;Best health plan 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	30
C59304	Child personal physician listen carefully last 6 month frequency scale	ChPslPhysLstCrflLst6MoFrqScl	Scale for the frequency over the past 6 months that the child's personal physician listened carefully	Scale for the frequency over the past 6 months that the child's personal physician listened carefully	In the last 6 months, how often did your child's personal doctor listen carefully to you?	1;2;4;3	Never;Sometimes;Always;usually	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-29 10:22:22.0	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	12
C59336	Reduced ability usual activities peers due health condition indicate code	RdAbUsAcPrDuHlCdIndCode	Code indicating whether the subject/participant's reduced ability to participate in the usual activities of his or her peers is due to a health condition	Code indicating whether the subject/participant's reduced ability to participate in the usual activities of 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 12:28:42.0	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	CC32
C13201	Healthy Days Core Module (CDC HRQOL) - General health scale	CDCHRQOLGenHlthScale	The scale related to general health as part of the Healthy Days Core Module (CDC HRQOL).	The scale related to general health as part of the Healthy Days Core Module (CDC HRQOL).	In general, how would you rate your child's overall health?	1;2;3;4;5	Excellent;Very good;Good;Fair;Poor	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	3.00	2013-07-16 14:01:43.01	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected
C59273	Child health care provider discuss option pro con last 6 month indicate code	ChdHCPvdDscOptPrCnLst6MoInCode	Code indicating whether in the last 6 months the child's health care provider(s) discussed the pros and cons of multiple options for the child's care.	Code indicating whether in the last 6 months the child's health care provider(s) discussed the pros and cons of multiple options for the child's care.	In the last 6 months, did your child's doctor or other health provider talk with you about the pros and cons of each choice for your child's treatment or health care?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 15:21:15.0	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	CC3
C59315	Easy get appointment specialist for child last 6 month frequency scale	EsGetApSpcFrChLst6MoFrqScl	Scale of the frequency in the last 6 months that it was easy to get an appointment with a specialist for the child.	Scale of the frequency in the last 6 months that it was easy to get an appointment with a specialist for the child.	In the last 6 months, how often was it easy to get appointments for your child with specialists?	1;2;4;3	Never;Sometimes;Always;usually	Numeric Values	Do not include dental visits or care your child got when he or she stayed overnight in a hospital.	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	20
C59347	Respondent gender code	RespondentGenderCode	Code for the gender of the individual answering the questionnaire.	Code for the gender of the individual answering the questionnaire.	Are you male or female?	1;2;1;2	Male;Female;Male;Female	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Adult;Pediatric	Proposed	1.00	2019-04-01 13:36:13.0	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	37
C59290	Receive help obtain special therapy child last 6 month indicate code	RcvHpObtSpThrChLst6MoIndCode	Code indicating whether help obtaining special therapy for the child was received in the last 6 months	Code indicating whether help obtaining special therapy for the child was received in the last 6 months	Did anyone from your child's health plan, doctor's office, or clinic help you get this therapy 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	CC13
C59326	Prescription medication obtain refill last 6 month indicate code	PrescrMdObtRefilLst6MoIndCode	Code indicating whether prescription medications were obtained or refilled for the subject/participant in the last 6 months.	Code indicating whether prescription medications were obtained or refilled for the subject/participant in the last 6 months.	In the last 6 months, did you get or refill any prescription medicines for your child?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 11:19:28.0	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	CC22
C59305	Child personal physician show respect last 6 month frequency scale	ChPslPhysShwRspLst6MoFrqScl	Scale for the frequency over the past 6 months that the child's personal physician showed respect for what the child's caregiver had to say	Scale for the frequency over the past 6 months that the child's personal physician showed respect for what the child's caregiver had to say	In the last 6 months, how often did your child's personal doctor show respect for what you had to say?	1;2;4;3	Never;Sometimes;Always;usually	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-29 10:22:22.0	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	13
C59337	Reduced ability usual activities peers due health condition endure 12 month indicate code	RdAbUsAcPrDuHlCdEn12MoIndCode	Code indicating whether the subject/participant's reduced ability to participate in the usual activities of his or her peers is due to a health condition that has endured or is expected to endure for at least 12 months	Code indicating whether the subject/participant's reduced ability to participate in the usual activities of his or her peers is due to 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 12:28:42.0	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	CC33
C58703	Hispanic Latino Spanish ethnicity indicate code	HspncLtnSpnshEthnctyIndCode	Code indicating whether the subject/participant is of Hispanic, Latino, or Spanish ethnicity.	Code indicating whether the subject/participant is of Hispanic, Latino, or Spanish ethnicity.	Is your child of Hispanic or Latino origin or descent?	1;2	Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2018-11-01 09:36:30.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Core Tier 1	Ethnicity	1
C59274	Child health care provider ask best choice care last 6 month indicate code	ChdHCPvdAskBstChCrLs6MoInCode	Code indicating whether in the last 6 months the child's health care provider(s) asked what the best choice of options was for the child	Code indicating whether in the last 6 months the child's health care provider(s) asked what the best choice of options was for the child	In the last 6 months, when there was more than one choice for your child's treatment or health care, did your child's doctor or other health provider ask you which choice was best for your child?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 15:21:15.0	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	CC4
C59316	Specialist seen by child last 6 month count range	SpclstSeenByChildLst6MoCtRng	Range of count of specialists seen by the child in the last 6 months	Range of count of specialists seen by the child in the last 6 months	How many specialists has your child seen in the last 6 months?	0;2;3;4;1;5 or more	None;2;3;4;1 specialist;5 or more specialists	Alphanumeric	Do not include dental visits or care your child got when he or she stayed overnight in a hospital.	PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 10:11:52.0	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	21
C59348	Respondent education code	RespondentEducationCode	Code for the highest level of education of the individual answering the questionnaire.	Code for the highest level of education of the individual answering the questionnaire.	What is the highest grade or level of school that you have completed?	1;2;3;4;5;6	8th grade or less;Some high school, but did not graduate;High school graduate or GED;Some college or 2-year degree;4-year college graduate;More than 4-year college degree	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Adult;Pediatric	Proposed	1.00	2019-04-01 13:39:41.0	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	38
C59291	Obtain attempt counseling child last 6 month indicate code	ObAtCounslChLst6MoIndCode	Code indicating whether counseling or treatment for emotional, developmental, or behavioral problems was obtained or attempted to be obtained for the child in the last 6 months.	Code indicating whether counseling or treatment for emotional, developmental, or behavioral problems was obtained or attempted to be obtained for the child in the last 6 months.	In the last 6 months, did you get or try to get treatment or counseling for your child for an emotional, developmental, or behavioral problem?	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	CC14
C59327	Prescription medication easy obtain health plan last 6 month frequency scale	PrscpMdEzObtHthPlnLst6MoFrqScl	Scale for the frequency over the last 6 months that it was easy to obtain prescription medications for the subject/participant using his or her health plan	Scale for the frequency over the last 6 months that it was easy to obtain prescription medications for the subject/participant using his or her health plan	In the last 6 months, how often was it easy to get prescription medicines for your child 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	2019-04-01 11:22:44.0	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	CC23
C59306	Child able talk about health care indicate code	ChdAblTlkAbtHlthCarIndCode	Code indicating whether the child is able to talk to doctors about his or her health care	Code indicating whether the child is able to talk to doctors about his or her health care	is your child able to talk with doctors about his or her health care?	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	14
C59338	Special therapy indicate code	SpecialTherapyIndicateCode	Code indicating whether the subject/participant needs or receives special therapy such as physical, occupational, or speech therapy.	Code indicating whether the subject/participant needs or receives special therapy such as physical, occupational, or speech therapy.	Does your child need or get special therapy such as physical, occupational, or speech therapy?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 12:38:12.0	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	CC34
C59264	Child health plan name verify indicate code	ChildHlthPlanNameVerfyIndCode	Code indicating that the study has the correct name of the child's health plan on file	Code indicating that the study has the correct name of the child's health plan on file	Our records show that your child is now in [INSERT HEALTH PLAN NAME]. Is that right?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 11:45:40.0	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	1
C59275	Child health care rating last 6 month scale	ChldHCRtngLst6MoScl	Scale for rating the child's health care over the last 6 months.	Scale for rating the child's health care over the last 6 months.	Using any number from 0 to 10, where 0 is the worst health care possible and 10 is the best health care possible, what number would you use to rate all your child's health care in the last 6 months?	0;1;2;3;4;5;6;7;8;9;10	Worst health care possible;1;2;3;4;5;6;7;8;9;Best health care 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	8
C59317	Specialist seen most often rating scale	SpcstSeenMostOftnRatingScl	Scale for rating the specialist the subject/participant saw most often in the last 6 months.	Scale for rating the specialist the subject/participant saw most often in the last 6 months.	We want to know your rating of the specialist your child saw most often in the last 6 months. Using any number from 0 to 10, where 0 is the worst specialist possible and 10 is the best specialist possible, what number would you use to rate that specialist?	1;2;3;4;5;6;7;8;9;0;10	1;2;3;4;5;6;7;8;9;Worst specialist possible;Best specialist possible	Numeric Values	Do not include dental visits or care your child got when he or she stayed overnight in a hospital.	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	22
C59349	Respondent relation patient code	RespondRelatePtCode	Code for the relationship to the patient of the individual answering the questionnaire.	Code for the relationship to the patient of the individual answering the questionnaire.	How are you related to the child?	1;2;3;4;5;6	Mother or father;Grandparent;Aunt or uncle;Older sibling;Other relative;Legal guardian	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Adult;Pediatric	Proposed	1.00	2019-04-01 13:45:19.0	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	39
C59292	Easy obtain counseling child last 6 month frequency scale	EsyObtCounslChLst6MoFrqScl	Scale of the frequency in the last 6 months that it was easy to obtain counseling or treatment for emotional, developmental, or behavioral problems for the child.	Scale of the frequency in the last 6 months that it was easy to obtain counseling or treatment for emotional, developmental, or behavioral problems for the child.	In the last 6 months, how often was it easy to get this treatment o r counseling for your child?	1;2;3	Never;Sometimes;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	CC15
C59328	Receive assistance obtain prescription medication indicate code	RcvAsstObtPrscrpMdIndCode	Code indicating whether assistance was received in obtaining prescription medications	Code indicating whether assistance was received in obtaining prescription medications	Did anyone from your child's health plan, doctor's office, or clinic help you get your child's prescription medicines?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 11:37:53.0	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	CC24
C59307	Child personal physician explain clearly to child last 6 month frequency scale	ChPslPhyExpClrToChLst6MoFrqScl	Scale for the frequency over the past 6 months that the child's personal physician explained things in a way that was easy for the child to understand	Scale for the frequency over the past 6 months that the child's personal physician explained things in a way that was easy for the child to understand	In the last 6 months, how often did your child's personal doctor explain things in a way that was easy for your child to understand?	1;2;4;3	Never;Sometimes;Always;usually	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-29 10:22:22.0	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	15
C59339	Special therapy due health condition indicate code	SpcTherDueHlthCondIndCode	Code indicating whether the subject/participant needs or receives special therapy such as physical, occupational, or speech therapy due to a health condition	Code indicating whether the subject/participant needs or receives special therapy such as physical, occupational, or speech therapy 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 12:38:12.0	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	CC35
C59265	Child health plan name	ChildHlthPlanName	Name of the child's health plan	Name of the child's health plan	What is the name of your child's health plan?			Alphanumeric	Collect if "Child health plan name verify indicate code" is answered 2 (No).	PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 11:50:08.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	100	Free-Form Entry	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	2

79 results.