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