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 Min Value Max Value Measurement Type Source Form Set Form Field Domain CDASH Variable CDASH Definition CDASH Label Controlled Terminology Prompt Essentiality Question Text CDASH imp guidance SDTM IG target csDSR PhenX Data Type CRF Completion Inst SDTMIG Target Var SDTMIG Target Map Codelist Name PVs Pre Pop Value Query Display List Style
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
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
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
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
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
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
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
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
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
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
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
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)
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
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
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
C59298 Child personal physician explain clearly last 6 month frequency scale ChPslPhysExpClrLst6MoFrqScl Scale for the frequency over the past 6 months that the child's personal physician explained things in a way that was easy 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 to understand In the last 6 months, how often did your child's personal doctor explain things in a way that was easy 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 11
C59334 Health eductional service above average peer need health condition endure 12 month indicate code HlEdSvAbAvPrNdHlCdEn12MoInCode 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 that has endured or is expected to endure for at least 12 months 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 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 11:54:17.0 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 CC30
C59313 Child personal physician understand how health condition affect family life indicate code ChPePhUnHwHeCoAfFaLfIndCode Code indicating whether the child's personal physician understands how the child's health conditions affect the family's daily life Code indicating whether the child's personal physician understands how the child's health conditions affect the family's daily life Does your child's personal doctor understand how your child's medical, behavioral, or other health conditions affect your family'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 CC21
C59345 Race USA category code RaceUSACategoryCode Code denoting the USA race category of the subject/participant Code denoting the USA race category of the subject/participant What is your child's race? Please mark one or more. 6;1;2;3;4;5 Other;White;Black or African-American;Asian;Native Hawaiian or other Pacific Islander;American Indian or Alaska Native Numeric Values PhenX Protocol: Quality of Care - Children (#820102) Pediatric Proposed 1.00 2019-04-01 13:20:23.0 PhenX Toolkit: Quality of Care - Children Additional Proposed Instruments Phen-X

Multiple Pre-Defined Values Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Care - Children 35
C59271 Questions answered child health care provider last 6 month frequency scale QAChldHCPrvdrLst6MoFrqScl Scale of the frequency that the child's caregiver's questions were answered by the child's health care providers in the last 6 months. Scale of the frequency that the child's caregiver's questions were answered by the child's health care providers in the last 6 months. In the last 6 months, how often did you have your questions answered by your child's doctors or other health providers? 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 CC1
C59324 Health plan form easy to complete last 6 month frequency scale HthPlnFrmEzToCmpltLs6MoFrqScl Scale for the frequency over the last 6 months that forms from the subject/participant's health plan were easy to complete Scale for the frequency over the last 6 months that forms from the subject/participant's health plan were easy to complete In the last 6 months, how often were the forms from your child's health plan easy to fill out? 1;2;4;3 Never;Sometimes;Always;usually Numeric Values PhenX Protocol: Quality of Care - Children (#820102) Pediatric Proposed 1.00 2019-04-01 10:50:01.0 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 29
C59288 Obtain attempt special therapy child last 6 month indicate code ObAtSpTherChLst6MoIndCode Code indicating whether special therapy was obtained or attempted to be obtained for the child in the last 6 months. Code indicating whether special therapy 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 special therapy such as physical, occupational, or speech 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 09:15:44.0 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 CC11
C59299 Gender code GenderCode Code indicating whether subject/participant is male, female, unsure, or refused to answer. Code indicating whether subject/participant is male, female, unsure, or refused to answer. Is your child male or female? 1;2 Male;Female Alphanumeric PhenX Protocol: Quality of Care - Children (#820102) Pediatric Proposed 1.00 2019-03-29 12:26:21.0 PhenX Toolkit: Quality of Care - Children Additional Proposed Instruments Phen-X

Single Pre-Defined Value Selected

PhenX Core tier 1 Gender 1
C59335 Reduced ability usual activities peers indicate code RedAbilUslActPeerIndCode Code indicating whether the subject/participant has a reduced ability to participate in the usual activities of his or her peers Code indicating whether the subject/participant has a reduced ability to participate in the usual activities of his or her peers Is your child limited or prevented in any way in his or her ability to do the things most children of the same age can do? 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 CC31
79 results.
CSV