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

Displaying 1 - 50 of 79
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
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
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
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
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
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
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
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
C59272 Child health care provider offer option last 6 month indicate code ChldHCPvdrOfrOptnLst6MoIndCode Code indicating whether in the last 6 months the child's health care provider(s) offered multiple options for the child's care. Code indicating whether in the last 6 months the child's health care provider(s) offered multiple options for the child's care. Choices for your child's treatment or health care can include choices about medicine, surgery, or other treatment. In the last 6 months, did your child's doctor or other health provider tell you there was more than one 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 CC2
C59314 Appointment specialist attempt make for child last 6 month indicate code ApptSpcAttMakFrChLst6MoIndCode Code indicating whether the child's caregiver attempted to make an appointment with a specialist for the child in the last 6 months Code indicating whether the child's caregiver attempted to make an appointment with a specialist for the child in the last 6 months Specialists are doctors like surgeons, heart doctors, allergy doctors, skin doctors, and other doctors who specialize in one area of health care. In the last 6 months, did you try to make any appointments for your child to see a specialist? 1;2;1;2 Yes;No;Yes;No 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 2019-04-01 09:59:58.0 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 19
C59346 Respondent age range code RespondentAgeRangeCode Code for the age range of the individual responding to the questionnaire. Code for the age range of the individual responding to the questionnaire. What is your age? 0;1;2;3;4;5;6;7 Under 18;18 to 24;25 to 34;35 to 44;45 to 54;55 to 64;65 to 74;75 or older Numeric Values PhenX Protocol: Quality of Care - Children (#820102) Adult;Pediatric Proposed 1.00 2019-04-01 13:25:22.0 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 36
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
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

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
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
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
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
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
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
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
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
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
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
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