Cure Sickle Cell Initiative | Cure Sickle Cell

CDE Detailed Report

Disease: Sickle Cell Disease
Sub-Domain: Additional Proposed Instruments
CRF: PhenX Toolkit: Quality of Care - Adults

27 results.

CDE ID	CDE Name	Variable Name	Definition	Short Description	Additional Notes (Question Text)	Permissible Values	Description	Data Type	Disease Specific Reference	Population	Classification (e.g., Core)	Version Number	Version Date	CRF Name (CRF Module / Guideline)	Sub Domain Name	Domain Name	Input Restrictions	Source	Form Set	Form	Field
C59367	Emergency room sickle cell care administrative staff respectful last 12 month frequency status	ERSCCarAdmStRspLst12MoFrqStat	Status of the frequency that administrative staff were courteous and respectful when the subject/participant received emergency room care for his or her sickle cell disease in the last 12 months	Status of the frequency that administrative staff were courteous and respectful when the subject/participant received emergency room care for his or her sickle cell disease in the last 12 months	In the past 12 months, when you went to the emergency room for this care, how often did the clerks and receptionists treat you with courtesy and respect?	Always;Never;Sometimes;Usually	Always;Never;Sometimes;Usually	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-01 15:49:51.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	17
C59357	Primary health care provider listen carefully last 12 month frequency status	PrHthCrPvdrLsnCflLs12MoFrqStat	Status of the frequency that the subject/participant's primary health care provider listened carefully in the last 12 months	Status of the frequency that the subject/participant's primary health care provider listened carefully in the last 12 months	In the past 12 months, how often did this doctor or nurse listen carefully to you?	Always;Never;Sometimes;Usually	Always;Never;Sometimes;Usually	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-01 15:17:52.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	7
C59368	Emergency room sickle cell care satisfactory last 12 month frequency status	ERSCCarStsfctryLst12MoFrqStat	Status of the frequency that the subject/participant was satisfied with the emergency room care he or she received for his or her sickle cell disease in the last 12 months	Status of the frequency that the subject/participant was satisfied with the emergency room care he or she received for his or her sickle cell disease in the last 12 months	In the past 12 months, when you went to the emergency room for this care, how often were you satisfied with the care you received?	Always;Never;Sometimes;Usually	Always;Never;Sometimes;Usually	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-01 15:49:51.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	18
C59358	Primary health care provider courteous respectful last 12 month frequency status	PrHthCrPvdrCtsRspLs12MoFrqStat	Status of the frequency that the subject/participant's primary health care provider showed courtesy and respect in the last 12 months	Status of the frequency that the subject/participant's primary health care provider showed courtesy and respect in the last 12 months	In the past 12 months, how often did this doctor or nurse treat you with courtesy and respect?	Always;Never;Sometimes;Usually	Always;Never;Sometimes;Usually	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-01 15:17:52.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	8
C59369	Sickle cell pain attack manage at home last 12 month count range	SCPnAtMngAtHmLst12MoCtRng	Range of count of times that the subject/participant managed a sickle cell pain attack in the last 12 months without seeking medical assistance	Range of count of times that the subject/participant managed a sickle cell pain attack in the last 12 months without seeking medical assistance	In the past 12 months, how many times did you manage a pain attack (crisis) at home without going to a doctor, clinic, or hospital?	0 times;1 time;2 times;3 times;4 or more times;I did not have a pain attack (crisis) in the past 12 months	0 times;1 time;2 times;3 times;4 or more times;I did not have a pain attack (crisis) in the past 12 months	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-02 10:11:48.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	19
C59359	Primary health care provider spend enough time last 12 month frequency status	PrHthCrPvdSpEnTimLs12MoFrqStat	Status of the frequency that the subject/participant's primary health care provider spent enough time with him or her in the last 12 months	Status of the frequency that the subject/participant's primary health care provider spent enough time with him or her in the last 12 months	In the past 12 months, how often did this doctor or nurse spend enough time with you?	Always;Never;Sometimes;Usually	Always;Never;Sometimes;Usually	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-01 15:17:52.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	9
C59370	Emergency room visit delay avoid last 12 month indicator	ERVstDlyAvdLst12MoInd	Indicator of whether the subject/participant delayed or avoided seeking emergency room care in the last 12 months	Indicator of whether the subject/participant delayed or avoided seeking emergency room care in the last 12 months	In the past 12 months, did you ever delay or avoid going to an emergency room when you thought you needed care?	Yes, I did not always go for care when I needed it;No, I always went for care when I thought I needed it	Yes, I did not always go for care when I needed it;No, I always went for care when I thought I needed it	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-02 10:19:12.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	20
C59360	Satisfied care primary health provider last 12 month frequency status	StsfCarPrHthPvdLst12MoFrqStat	Status of the frequency that the subject/participant was satisfied with the care received from his or her primary health care provider in the last 12 months	Status of the frequency that the subject/participant was satisfied with the care received from his or her primary health care provider in the last 12 months	In the past 12 months, how often were you satisfied with the care you received from this doctor or nurse?	Always;Never;Sometimes;Usually	Always;Never;Sometimes;Usually	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-01 15:17:52.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	10
C59371	Emergency room bad experience important decide avoid care status	ERBadExpImptDecAvCarStat	Status of how important prior bad experiences in the emergency room were to the subject/participant's decision to avoid visiting the emergency room for care	Status of how important prior bad experiences in the emergency room were to the subject/participant's decision to avoid visiting the emergency room for care	How important were bad experiences in the emergency room in your decision to avoid going for care?	Not at all;A little;Somewhat;Quite;Very	Not at all;A little;Somewhat;Quite;Very	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-02 10:38:15.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	21
C59361	Primary health care provider know how sickle cell affect patient personally status	PrHlCrPvKnHwSCAfPtPrsStat	Status of how much the subject/participant's primary health care provider knows about how sickle cell disease affects him or her personally	Status of how much the subject/participant's primary health care provider knows about how sickle cell disease affects him or her personally	How much does this doctor or nurse know how sickle cell affects you personally?	Nothing;A little bit;Some;quite a bit;very much	Nothing;A little bit;Some;quite a bit;very much	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-01 15:34:38.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	11
C59372	Emergency room health insurance problem important decide avoid care status	ERHthInsPrbImptDecAvCarStat	Status of how important health insurance problems were to the subject/participant's decision to avoid visiting the emergency room for care	Status of how important health insurance problems were to the subject/participant's decision to avoid visiting the emergency room for care	How important were health insurance issues in your decision to avoid going for care?	Not at all;A little;Somewhat;Quite;Very	Not at all;A little;Somewhat;Quite;Very	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-02 10:38:15.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	22
C59351	Medical appointment attempt last 12 month indicator	MedApptAtmptLst12MoInd	Indicator of whether the subject/participant attempted to make a medical appointment in the last 12 months	Indicator of whether the subject/participant attempted to make a medical appointment in the last 12 months	In the past 12 months, did you try to make an appointment to see a doctor or nurse?	No;Yes	No;Yes	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-01 14:45:36.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	1
C59362	Primary health care provider treat many sickle cell patient indicator	PriHlthCarPvdTrtMnySCPtInd	Indicator of whether the subject/participant's primary health care provider treats many sickle cell patients	Indicator of whether the subject/participant's primary health care provider treats many sickle cell patients	Does this doctor or nurse treat a lot of patients with sickle cell disease?	No;Yes	No;Yes	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-01 15:41:26.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	12
C59373	Pain attack emergency room visit last 12 month count range	PnAttERVstLst12MoCtRng	Range of count of times the subject/participant went to the emergency room because of a sickle cell pain attack or crisis	Range of count of times the subject/participant went to the emergency room because of a sickle cell pain attack or crisis	In the past 12 months, how many times did you go to the emergency room because of a pain attack (crisis)?	0 times;1 time;2 times;3 times;4 or more times	0 times;1 time;2 times;3 times;4 or more times	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-02 10:47:20.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	23
C59352	Medical appointment schedule timely last 12 month frequency Status	MdApptSchedTimlyLst12MoFrqStat	Status of the frequency that medical appointments could be scheduled in a timely manner in the last 12 months	Status of the frequency that medical appointments could be scheduled in a timely manner in the last 12 months	In the past 12 months, when you tried to make an appointment to see a doctor or nurse, how often were you able to get one as soon as you wanted?	Always;Never;Sometimes;Usually	Always;Never;Sometimes;Usually	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-01 14:51:39.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	2
C59363	Emergency room sickle cell care last 12 month indicator	EmrgncyRmSCCarLst12MoInd	Indicator of whether the subject/participant went to the emergency room for sickle cell care in the last 12 months	Indicator of whether the subject/participant went to the emergency room for sickle cell care in the last 12 months	In the past 12 months, did you go to an emergency room for any sickle cell care you needed right away?	No;Yes	No;Yes	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-01 15:45:07.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	13
C59374	Emergency room visit able improve sickle cell pain last 12 month status	ERVstAblImprvSCPnLst12MoStat	Status of the extent to which the subject/participant's visits to the emergency room were able to improve the pain he or she felt because of sickle cell disease in the last 12 months	Status of the extent to which the subject/participant's visits to the emergency room were able to improve the pain he or she felt because of sickle cell disease in the last 12 months	In the past 12 months, how much were the emergency room doctors and nurses able to help your pain?	Not at all;A little bit;Somewhat;quite a bit;very much	Not at all;A little bit;Somewhat;quite a bit;very much	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-02 10:51:45.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	24
C59353	Medical appointment care satisfy last 12 month frequency status	MdApptCarSatsfyLst12MoFrqStat	Status of the frequency that the subject/participant was satisfied with care at scheduled medical appointments in the last 12 months	Status of the frequency that the subject/participant was satisfied with care at scheduled medical appointments in the last 12 months	In the past 12 months, how often were you satisfied with the care you received during these scheduled appointments?	Always;Never;Sometimes;Usually	Always;Never;Sometimes;Usually	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-01 14:51:39.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	3
C59364	Emergency room sickle cell care received timely last 12 month frequency status	ERSCCarRecdTimlyLst12MoFrqStat	Status of the frequency that the subject/participant received emergency room care for his or her sickle cell disease in a timely manner in the last 12 months	Status of the frequency that the subject/participant received emergency room care for his or her sickle cell disease in a timely manner in the last 12 months	In the past 12 months, when you went to the emergency room for this care, how often did you get it as soon as you wanted?	Always;Never;Sometimes;Usually	Always;Never;Sometimes;Usually	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-01 15:49:51.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	14
C59375	Emergency room medical staff believe sickle cell pain last 12 month status	ERMdStfBlvSCPnLst12MoStat	Status of the extent to which emergency room medical staff believed the subject/participant was experiencing sickle cell pain in the last 12 months	Status of the extent to which emergency room medical staff believed the subject/participant was experiencing sickle cell pain in the last 12 months	In the past 12 months, how much did the emergency room doctors and nurses believe that you had very bad sickle cell pain?	Not at all;A little bit;Somewhat;quite a bit;very much	Not at all;A little bit;Somewhat;quite a bit;very much	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-02 10:51:45.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	25
C59354	Primary health care provider indicator	PrimaryHealthCareProviderInd	Indicator of whether the subject/participant has a primary health care provider	Indicator of whether the subject/participant has a primary health care provider	Do you have a doctor or nurse who you usually see if you need a check-up, want advice about a health problem, or get sick or hurt?	No;Yes	No;Yes	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-01 15:00:18.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	4
C59365	Emergency room sickle cell care doctors seem caring last 12 month frequency status	ERSCCarDrSmCrngLst12MoFrqStat	Status of the frequency that doctors seemed caring when the subject/participant received emergency room care for his or her sickle cell disease in the last 12 months	Status of the frequency that doctors seemed caring when the subject/participant received emergency room care for his or her sickle cell disease in the last 12 months	In the past 12 months, when you went to the emergency room for this care, how often did the doctors treating you seem to really care about you?	Always;Never;Sometimes;Usually	Always;Never;Sometimes;Usually	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-01 15:49:51.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	15
C59376	Emergency room longest wait sickle cell pain treatment last 12 month duration range	ERLngWtSCPnTxLst12MoDurRng	Range of the duration of the longest wait in the past 12 months that the subject/participant experienced at the emergency room waiting for treatment for sickle cell pain	Range of the duration of the longest wait in the past 12 months that the subject/participant experienced at the emergency room waiting for treatment for sickle cell pain	In the past 12 months, what is the longest you had to wait in the emergency room before your sickle cell pain was treated?	Less than 5 minutes;5 to 15 minutes;16 minutes to 1 hour;More than 1 hour but less than 2 hours;2 hours or more	Less than 5 minutes;5 to 15 minutes;16 minutes to 1 hour;More than 1 hour but less than 2 hours;2 hours or more	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-02 11:00:08.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	26
C59355	Primary health care provider visit last 12 month count range	PriHlthCarPvdrVstLst12MoCtRng	Range of count of visits by the subject/participant to his or her primary health care provider in the last 12 months	Range of count of visits by the subject/participant to his or her primary health care provider in the last 12 months	In the past 12 months, how many visits have you had with this doctor or nurse?	0 visits;1 visit;2 visits;3 visits;4 or more visits	0 visits;1 visit;2 visits;3 visits;4 or more visits	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-01 15:04:20.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	5
C59366	Emergency room sickle cell care nurses seem caring last 12 month frequency status	ERSCCarNrsSmCrngLst12MoFrqStat	Status of the frequency that nurses seemed caring when the subject/participant received emergency room care for his or her sickle cell disease in the last 12 months	Status of the frequency that nurses seemed caring when the subject/participant received emergency room care for his or her sickle cell disease in the last 12 months	In the past 12 months, when you went to the emergency room for this care, how often did the nurses treating you seem to really care about you?	Always;Never;Sometimes;Usually	Always;Never;Sometimes;Usually	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-01 15:49:51.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	16
C59377	Health care last 12 month 0 10 rating number	HthCarLst12Mo010RatingNum	Number of the rating from 0 to 10 the subject/participant gives to all of the health care he or she received over the last 12 months	Number of the rating from 0 to 10 the subject/participant gives to all of the health care he or she received over the last 12 months	Using any number from 0 to 10 where 0 is the worst care possible and 10 is the best care possible, what number would you use to rate all of the care you received for your health in the last 12 months?	1;2;3;4;5;6;7;8;9;0;10	1;2;3;4;5;6;7;8;9;Worst care possible;Best care possible	Numeric Values	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-02 11:08:11.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	27
C59356	Primary health care provider explain clearly last 12 month frequency status	PrHthCrPvdrExpClyLs12MoFrqStat	Status of the frequency that the subject/participant's primary health care provider explained things clearly in the last 12 months	Status of the frequency that the subject/participant's primary health care provider explained things clearly in the last 12 months	In the past 12 months, how often did this doctor or nurse explain things in a way that is easy to understand?	Always;Never;Sometimes;Usually	Always;Never;Sometimes;Usually	Alphanumeric	PhenX Protocol: Quality of Care - Adults (#820101)	Adult	Proposed	1.00	2019-04-01 15:17:52.0	PhenX Toolkit: Quality of Care - Adults	Additional Proposed Instruments	Phen-X	Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Adult	6

27 results.