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 |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| C59294 | Child more one kind health care provider service last 6 month indicate code | ChlMr1KdHthCrPvSvLst6MoIndCode | Code indicating whether child received care from more than one health care provider or service in the last 6 months. | Code indicating whether child received care from more than one health care provider or service in the last 6 months. | In the last 6 months, did your child get care from more than one kind of health care provider or use more than one kind of health care service? | 1;2;1;2 | Yes;No;Yes;No | Numeric Values | PhenX Protocol: Quality of Care - Children (#820102) | Pediatric | Proposed | 1.00 | 2019-03-29 09:53:45.0 | PhenX Toolkit: Quality of Care - Children | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
PhenX | Neurology, Quality of Life, and Health Services Specialty Collection | Quality of Care - Children | CC17 | ||||||||||||||||||||||||||
| C59330 | Prescription medication health condition indicate code | PrscrpMdHlthCondIndCode | Code indicating whether the subject/participant needs or uses prescription medications other than vitamins because of a health condition | Code indicating whether the subject/participant needs or uses prescription medications other than vitamins because of a health condition | Is this because of any medical, behavioral, or other health condition? | 1;2;1;2 | Yes;No;Yes;No | Numeric Values | PhenX Protocol: Quality of Care - Children (#820102) | Pediatric | Proposed | 1.00 | 2019-04-01 11:46:19.0 | PhenX Toolkit: Quality of Care - Children | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
PhenX | Neurology, Quality of Life, and Health Services Specialty Collection | Quality of Care - Children | CC26 | ||||||||||||||||||||||||||
| C59309 | Child personal physician talk about child feel grow behave last 6 month indicate code | ChPrPhTkAbChFlGrBhLs6MoIndCode | Code indicating whether the child's personal physician talked in the last 6 months about how the child is feeling, growing, or behaving | Code indicating whether the child's personal physician talked in the last 6 months about how the child is feeling, growing, or behaving | In the last 6 months, did your child's personal doctor talk with you about how your child is feeling, growing, or behaving? | 1;2;1;2 | Yes;No;Yes;No | Numeric Values | PhenX Protocol: Quality of Care - Children (#820102) | Pediatric | Proposed | 1.00 | 2019-04-01 09:24:49.0 | PhenX Toolkit: Quality of Care - Children | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
PhenX | Neurology, Quality of Life, and Health Services Specialty Collection | Quality of Care - Children | 17 | ||||||||||||||||||||||||||
| C59341 | Problem emotion behavior development indicate code | PrbEmBhvDevIndCode | Code indicating whether the subject/participant has emotional, developmental, or behavioral problems for which he or she needs or receives treatment | Code indicating whether the subject/participant has emotional, developmental, or behavioral problems for which he or she needs or receives treatment | Does your child have any kind of emotional, developmental, or behavioral problem for which he or she needs or gets treatment or counseling? | 1;2;1;2 | Yes;No;Yes;No | Numeric Values | PhenX Protocol: Quality of Care - Children (#820102) | Pediatric | Proposed | 1.00 | 2019-04-01 12:45:35.0 | PhenX Toolkit: Quality of Care - Children | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
PhenX | Neurology, Quality of Life, and Health Services Specialty Collection | Quality of Care - Children | CC37 | ||||||||||||||||||||||||||
| C59267 | Child receive timely urgent care last 6 month reliability scale | ChdRcvTmlyUrgtCrLst6MoRelScl | Scale of how reliably the child received timely urgent care in the last 6 months. | Scale of how reliably the child received timely urgent care in the last 6 months. | In the last 6 months, when your child needed care right away, how often did your child get care as soon as you thought he or she needed? | 1;2;4;3 | Never;Sometimes;Always;usually | Numeric Values |
Collect if "Child need urgent care last 6 month indicate code" is answered 1 (Yes). |
PhenX Protocol: Quality of Care - Children (#820102) | Pediatric | Proposed | 1.00 | 2019-03-28 11:52:32.0 | PhenX Toolkit: Quality of Care - Children | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
PhenX | Neurology, Quality of Life, and Health Services Specialty Collection | Quality of Care - Children | 4 | |||||||||||||||||||||||||
| C59320 | Use health plan customer service last 6 month indicate code | UseHlthPlnCustSvcLst6MoIndCode | Code indicating whether attempts were made to use customer service at the subject/participant's health plan in the last 6 months | Code indicating whether attempts were made to use customer service at the subject/participant's health plan in the last 6 months | In the last 6 months, did you try to get information or help from customer service at your child's health plan? | 1;2;1;2 | Yes;No;Yes;No | Numeric Values | PhenX Protocol: Quality of Care - Children (#820102) | Pediatric | Proposed | 1.00 | 2019-04-01 10:38:36.0 | PhenX Toolkit: Quality of Care - Children | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
PhenX | Neurology, Quality of Life, and Health Services Specialty Collection | Quality of Care - Children | 25 | ||||||||||||||||||||||||||
| C59278 | Child health care provider help contact school daycare last 6 month indicate code | ChdHCPvHpCntSchDycLst6MoInCode | Code indicating whether the child's health care providers helped contact school or daycare about the child's health or care in the last 6 months. | Code indicating whether the child's health care providers helped contact school or daycare about the child's health or care in the last 6 months. | In the last 6 months, did you get the help you needed from your child's doctors or other health providers in contacting your child's school or daycare? | 1;2;1;2 | Yes;No;Yes;No | Numeric Values | PhenX Protocol: Quality of Care - Children (#820102) | Pediatric | Proposed | 1.00 | 2019-03-28 15:44:38.0 | PhenX Toolkit: Quality of Care - Children | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
PhenX | Neurology, Quality of Life, and Health Services Specialty Collection | Quality of Care - Children | CC7 | ||||||||||||||||||||||||||
| C59295 | Receive help coordinate different health care provider service last 6 month indicate code | RcHpCordDfHlCrPvSvLs6MoIndCode | Code indicating whether child's health plan, doctor's office, or clinic helped coordinate your child's care among different providers or services in the last 6 months | Code indicating whether child's health plan, doctor's office, or clinic helped coordinate your child's care among different providers or services in the last 6 months | In the last 6 months, did anyone from your child's health plan, doctor's office, or clinic help coordinate your child's care among these different providers or services? | 1;2;1;2 | Yes;No;Yes;No | Numeric Values | PhenX Protocol: Quality of Care - Children (#820102) | Pediatric | Proposed | 1.00 | 2019-03-29 10:03:32.0 | PhenX Toolkit: Quality of Care - Children | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
PhenX | Neurology, Quality of Life, and Health Services Specialty Collection | Quality of Care - Children | CC18 | ||||||||||||||||||||||||||
| C59331 | Prescription medication health condition endure 12 month indicate code | PrscrpMdHlthCondEnd12MoIndCode | Code indicating whether the subject/participant needs or uses prescription medications other than vitamins because of a health condition that has endured or is expected to endure for at least 12 months | Code indicating whether the subject/participant needs or uses prescription medications other than vitamins because of a health condition that has endured or is expected to endure for at least 12 months | Is this a condition that has lasted or is expected to last for at least 12 months? | 1;2;1;2 | Yes;No;Yes;No | Numeric Values | PhenX Protocol: Quality of Care - Children (#820102) | Pediatric | Proposed | 1.00 | 2019-04-01 11:46:19.0 | PhenX Toolkit: Quality of Care - Children | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
PhenX | Neurology, Quality of Life, and Health Services Specialty Collection | Quality of Care - Children | CC27 | ||||||||||||||||||||||||||
| 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 | ||||||||||||||||||||||||||
| 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 | ||||||||||||||||||||||||||
| C59289 | Easy obtain special therapy child last 6 month frequency scale | EsyObtSpcTherChLst6MoFrqScl | Scale of the frequency in the last 6 months that it was easy to obtain special therapy for the child. | Scale of the frequency in the last 6 months that it was easy to obtain special therapy for the child. | In the last 6 months, how often was it easy to get this therapy for your child? | 1;2;4;3 | Never;Sometimes;Always;usually | Numeric Values | PhenX Protocol: Quality of Care - Children (#820102) | Pediatric | Proposed | 1.00 | 2019-03-28 15:16:41.0 | PhenX Toolkit: Quality of Care - Children | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
PhenX | Neurology, Quality of Life, and Health Services Specialty Collection | Quality of Care - Children | CC12 | ||||||||||||||||||||||||||
| C59325 | Health plan rating scale | HlthPlanRatingScl | Scale for rating the subject/participant's health plan | Scale for rating the subject/participant's health plan | Using any number from 0 to 10, where 0 is the worst health plan possible and 10 is the best health plan possible, what number would you use to rate your child's health plan? | 1;2;3;4;5;6;7;8;9;0;10 | 1;2;3;4;5;6;7;8;9;Worst health plan possible;Best health plan possible | Numeric Values | PhenX Protocol: Quality of Care - Children (#820102) | Pediatric | Proposed | 1.00 | 2019-03-28 15:33:42.0 | PhenX Toolkit: Quality of Care - Children | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
PhenX | Neurology, Quality of Life, and Health Services Specialty Collection | Quality of Care - Children | 30 | ||||||||||||||||||||||||||
| C59304 | Child personal physician listen carefully last 6 month frequency scale | ChPslPhysLstCrflLst6MoFrqScl | Scale for the frequency over the past 6 months that the child's personal physician listened carefully | Scale for the frequency over the past 6 months that the child's personal physician listened carefully | In the last 6 months, how often did your child's personal doctor listen carefully to you? | 1;2;4;3 | Never;Sometimes;Always;usually | Numeric Values | PhenX Protocol: Quality of Care - Children (#820102) | Pediatric | Proposed | 1.00 | 2019-03-29 10:22:22.0 | PhenX Toolkit: Quality of Care - Children | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
PhenX | Neurology, Quality of Life, and Health Services Specialty Collection | Quality of Care - Children | 12 | ||||||||||||||||||||||||||
| C59336 | Reduced ability usual activities peers due health condition indicate code | RdAbUsAcPrDuHlCdIndCode | Code indicating whether the subject/participant's reduced ability to participate in the usual activities of his or her peers is due to a health condition | Code indicating whether the subject/participant's reduced ability to participate in the usual activities of his or her peers is due to a health condition | Is this because of any medical, behavioral, or other health condition? | 1;2;1;2 | Yes;No;Yes;No | Numeric Values | PhenX Protocol: Quality of Care - Children (#820102) | Pediatric | Proposed | 1.00 | 2019-04-01 12:28:42.0 | PhenX Toolkit: Quality of Care - Children | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
PhenX | Neurology, Quality of Life, and Health Services Specialty Collection | Quality of Care - Children | CC32 | ||||||||||||||||||||||||||
| C13201 | Healthy Days Core Module (CDC HRQOL) - General health scale | CDCHRQOLGenHlthScale | The scale related to general health as part of the Healthy Days Core Module (CDC HRQOL). | The scale related to general health as part of the Healthy Days Core Module (CDC HRQOL). | In general, how would you rate your child's overall health? | 1;2;3;4;5 | Excellent;Very good;Good;Fair;Poor | Numeric Values | PhenX Protocol: Quality of Care - Children (#820102) | Pediatric | Proposed | 3.00 | 2013-07-16 14:01:43.01 | PhenX Toolkit: Quality of Care - Children | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
||||||||||||||||||||||||||||||
| 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 | ||||||||||||||||||||||||||
| 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 |