CDE Detailed Report
Disease: Sickle Cell Disease
Sub-Domain: Assessments and Examinations
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 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
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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Care - Adult 6
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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

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 Assessments and Examinations Hospital/Care Management

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Care - Adult 20
27 results.
CSV