CDE Detailed Report | NINDS Common Data Elements

Disease: Unruptured Cerebral Aneurysms and Subarachnoid Hemorrhage
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CRF: Palliative

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CDE ID	CDE Name	Variable Name	Definition	Short Description	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 / Guidance)	Subdomain Name	Domain Name	Size	Input Restrictions
C14279	Comfort care indicator	ComfortCareInd	Indicates if there is any evidence that the participant's/ subject's care was restricted to "Comfort Measures Only". Commonly referred to as "palliative care" in the medical community and "comfort care" by the general public. Palliative care includes attention to the psychological and spiritual needs of the patient and support for the dying patient and the patient's family	Indicates if there is any evidence that the participant's/ subject's care was restricted to "Comfort Measures Only". Commonly referred to as "palliative care" in the medical community and "comfort care" by the general public. Palliative care includes attention to the psychological and spiritual needs of the patient and support for the dying patient and the patient's famil	Was the participant's/subject's care restricted to "Comfort Measures Only"	Yes;No;Unknown	Yes;No;Unknown	Alphanumeric	Choose one	Get With The Guidelines (GWTG) Stroke Patient Management Tool Coding Instructions (Updated on 11/4/2009); Paul Coverdell National Acute Stroke Registry	Adult;Pediatric	Supplemental	3.00	2013-06-21 00:00:00.0	Palliative/Comfort Care and End of Life Issues	[php]	[php_1]		Single Pre-Defined Value Selected
C14280	Comfort care earliest documentation timepoint type	ComfrtCareEarlistDocTimepntTyp	Timepoint of the earliest documentation of comfort measures only	Timepoint of the earliest documentation of comfort measures only	Earliest documents of "Comfort Measures Only"	Day 1 or 2;Day 3 or after;Timing unclear;ND/UTD	The earliest day the physician/APN/PA documented comfort measures only was the day of arrival (Day 1) or day after arrival (Day 2).;The earliest day the physician/APN/PA documented comfort measures only was two or more days after arrival day (Day 3+).;There is physician/APN/PA documentation of comfort measures only during this hospital stay, but whether the earliest documentation of comfort measures only was on day 1 or 2 OR after day 2 is unclear.;Not Documented/ Unable To Determine: There is no physician/APN/PA documentation of comfort measures only, or unable to determine from medical record documentation.	Alphanumeric	Choose one	Get With The Guidelines (GWTG) Stroke Patient Management Tool Coding Instructions (Updated on 11/4/2009); Paul Coverdell National Acute Stroke Registry	Adult;Pediatric	Supplemental	3.00	2013-06-21 00:00:00.0	Palliative/Comfort Care and End of Life Issues	[php]	[php_1]		Single Pre-Defined Value Selected
C14281	Comfort care measure type	ComfortCareMeasureTyp	Describes the types of comfort care the participant/ subject received	Describes the types of comfort care the participant/ subject received	Type(s) of comfort care measures received	Eliminating sources of discomfort;Providing effective pain and symptom management through the use of medications and other therapies;Offering a quiet, private environment that supports the intimate process of dying;Encouraging personal rituals that may honor or celebrate the person dying;Providing support, reassurance, and information about grief, bereavement, and information and guidance about the dying process;Providing spiritual care as desired;Offering food and fluids as the dying person desires and is able to take;Preventing constipation, even if oral intake has been minimal;Positioning at frequent intervals to prevent bedsores;Offering frequent mouth care for discomfort from drying (as tolerated);Instilling artificial tears or eye lubricant for discomfort from drying;Limiting vital signs to respirations (breathing) and temperature (this practice may vary);Stopping medications that are not essential to promoting comfort, including antibiotics;Stopping needle sticks and blood draws, including finger sticks for blood sugar;Removing nonessential equipment that may distract care providers and loved ones from focusing on the one who is dying;Other, specify	Eliminating sources of discomfort;Providing effective pain and symptom management through the use of medications and other therapies;Offering a quiet, private environment that supports the intimate process of dying;Encouraging personal rituals that may honor or celebrate the person dying;Providing support, reassurance, and information about grief, bereavement, and information and guidance about the dying process;Providing spiritual care as desired;Offering food and fluids as the dying person desires and is able to take;Preventing constipation, even if oral intake has been minimal;Positioning at frequent intervals to prevent bedsores;Offering frequent mouth care for discomfort from drying (as tolerated);Instilling artificial tears or eye lubricant for discomfort from drying;Limiting vital signs to respirations (breathing) and temperature (this practice may vary);Stopping medications that are not essential to promoting comfort, including antibiotics;Stopping needle sticks and blood draws, including finger sticks for blood sugar;Removing nonessential equipment that may distract care providers and loved ones from focusing on the one who is dying (e.g., cardiac monitors, feeding tubes and tube feedings, IV access devices, Foley catheters, etc.);Other, specify	Alphanumeric	Choose all that apply	Kathleen Moneymaker. Comfort Measures Only. Journal of Palliative Medicine. June 2005, 8(3): 688-688. doi:10.1089/jpm.2005.8.688.	Adult;Pediatric	Supplemental	3.00	2013-06-21 00:00:00.0	Palliative/Comfort Care and End of Life Issues	[php]	[php_1]		Multiple Pre-Defined Values Selected
C14282	Do not resuscitate or intubate (DNR or DNI) indicator	DNRDNIInd	Indicates if participant/ subject was made DNR/DNI (Do not resuscitate or Do not intubate) during hospitalization	Indicates if participant/ subject was made DNR/ DNI (Do not resuscitate/ Do not intubate) during hospitalization	Was the participant/subject made DNR/DNI during the hospitalization	Yes;No;Unknown	Yes;No;Unknown	Alphanumeric	Choose one	No references available	Adult;Pediatric	Supplemental	3.00	2013-06-21 00:00:00.0	Palliative/Comfort Care and End of Life Issues	[php]	[php_1]		Single Pre-Defined Value Selected
C14283	Do not resuscitate or intubate (DNR or DNI) earliest documentation timepoint type	DNRDNIEarliestDocTimpntTyp	Timepoint of earliest documentation of DNR/DNI (Do not resuscitate or Do not intubate) during hospitalization	Timepoint of earliest documentation of DNR/ DNI (Do not resuscitate/ Do not intubate) during hospitalization	Earliest documentation of DNR/DNI	Day 1 or 2;Day 3 or after;Timing unclear;Not Documented/Unable to Determine (UTD);Unknown	Day 1 or 2;Day 3 or after;Timing unclear;Not Documented/Unable to Determine (UTD);Unknown	Alphanumeric	The date/time should be recorded to the level of granularity known (e.g., year, year and month, complete date plus hours and minutes, etc.) and in the format acceptable to the study database.	No references available	Adult;Pediatric	Supplemental	3.00	2013-06-21 00:00:00.0	Palliative/Comfort Care and End of Life Issues	[php]	[php_1]		Single Pre-Defined Value Selected
C18912	Comfort care measure other text	ComfortCareMeasureOTH	The free-text field related to 'Comfort care measure type' specifying other text. Describes the types of comfort care the participant/ subject received	The free-text field related to 'Comfort care measure type' specifying other text. Describes the types of comfort care the participant/ subject received	Other, specify			Alphanumeric	Choose all that apply	Kathleen Moneymaker. Comfort Measures Only. Journal of Palliative Medicine. June 2005, 8(3): 688-688. doi:10.1089/jpm.2005.8.688.	Adult;Pediatric	Supplemental	3.00	2013-06-21 00:00:00.0	Palliative/Comfort Care and End of Life Issues	[php]	[php_1]	4000	Free-Form Entry