CDE Detailed Report

Disease: Spinal Cord Injury
Subdomain Name: The International SCI Data Sets
CRF: International SCI Bowel Function Extended Data Set

Displaying 1 - 38 of 38
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 Min Value Max Value Measurement Type External Id Loinc External Id Snomed External Id caDSR External Id CDISC
C06224 Bowel care position past three months type BowelCrPostnPstThrMoTyp The indicator of whether the bowel care position was used within the past three months The indicator of whether the bowel care position was used within the past three months. Position for bowel care within the last three months Bed;Toilet chair/Commode;Raised toilet seat;Conventional toilet;Other, specify;Unknown Bed;Toilet chair/Commode;Raised toilet seat;Conventional toilet;Other, specify;Unknown Alphanumeric

For each bowel care position indicate if it was used within the last three months

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Multiple Pre-Defined Values Selected

C06242 Anal canal voluntary contraction indicator AnlCnlVolContrctnInd Indicator of whether the anal canal can voluntary contract. This is the result of the digital evaluation of voluntary contraction of the anal canal and is an assessment of the voluntary function of the external anal sphincter muscle Indicator of whether the anal canal can voluntary contract. This is the result of the digital evaluation of voluntary contraction of the anal canal and is an assessment of the voluntary function of the external anal sphincter muscl Voluntary contraction of the anal canal Yes;No;Not assessed;Not applicable Yes;No;Not assessed;Not applicable Alphanumeric

Choose one. Voluntary anal contraction may be confused with spasms or reflex activity of the external anal sphincter muscle. Accordingly, it is recommended to ask the subject to contract the anal canal two times or more during the examination. The code "Not applicable" is used if e.g. anus is surgically closed.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C21617 Stool defecation assistance past three month average indicator StlDefctnAstncPstThrMoAvgInd The indicator related to the average time duration in minutes during bowel movement that stool intermittently or continuously (in the case of a single defecation) comes out with or without assistance within the last three months The indicator related to the average time duration in minutes during bowel movement that stool intermittently or continuously (in the case of a single defecation) comes out with or without assistance within the last three month Average time during bowel movement that stool intermittently or continuously comes out with or without assistance within the last three months Not applicable;Unknown Not applicable;Unknown Alphanumeric

Record in time duration in minutes based on each individual's own assessment of time consumption. This element begins at the end of the previous element (Bowel care initiation to stool comes out past three months average duration).

House JG, Stiens SA. Pharmacologically initiated defecation for persons with spinal cord injury: effectiveness of three agents. Arch Phys Med Rehabil 1997; 78: 1062-1065. Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06214 Rectal emptying incomplete frequency RectEmptIncmpltFreq The frequency of any sense of incomplete rectal emptying after defecation within the last three months. The frequency of any sense of incomplete rectal emptying after defecation within the last three months. Incomplete rectal emptying after defecation within the last three months Daily;Not every day but at least once per week;Not every week but at least once per month;Less than once per month;Never;Not applicable;Unknown Daily;Not every day but at least once per week;Not every week but at least once per month;Less than once per month;Never;Not applicable;Unknown Alphanumeric

Choose one. Most individuals with complete SCI do not have any subjective sense of rectal filling. In such cases the code "Never" and not the code "Unknown" should be used. The code "Not applicable" is mainly for individuals with stomas.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06229 Bowel management independence past three months scale BowelMngmntIndpdncPstThrMoScl The scale that assesses the participant's degree of independence during bowel management within the last three months. The scale that assesses the participant's degree of independence during bowel management within the last three months. Degree of independency during bowel management within the last three months Requires total assistance;Requires partial assistance, does not clean self;Requires partial assistance, cleans self independently;Uses toilet independently in all tasks but needs adaptive devices or special setting (e.g. bars);Uses toilet independently, does not need adaptive devices or special setting;Unknown Requires total assistance;Requires partial assistance, does not clean self;Requires partial assistance, cleans self independently;Uses toilet independently in all tasks but needs adaptive devices or special setting (e.g. bars);Uses toilet independently, does not need adaptive devices or special setting;Unknown Alphanumeric

Choose one

The codes used are identical to those used in the Spinal Cord Independence Measure III (SCIM III) (Catz 2007). Catz A, Itzkovich M, Tesio L, Biering-SØrensen F, Weeks C, Laramee MT, Craven BC, Tonack M, Hitzing SL, Glaser E, Zeilig G, Aito S, Scivoletto G, Mecci M, Chadwick RJ, El Marsy WS, Osman A, Glass CA, Silva P, Soni BM, Gardner BP, Savic G, Bergstrom EM, Bluvshtein V, Ronen J. A multicenter international study on the spinal cord independence measure; version III: Rasch psychometric validation. Spinal Cord 2007;45(4):275-91. Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06243 Gastrointestinal colonic transit time measurement GastIntstnlColncTransTmMeasr The total gastrointestinal or colonic transit time assessed by means of radioopaque markers and measured in hours. The total gastrointestinal or colonic transit time assessed by means of radioopaque markers and measured in hours. Total Gastrointestinal or Colonic Transit Time Numeric Values

Record the Total Gastrointestinal or Colonic Transit Time in hours measured through X-ray investigation. Several types of radiopaque markers and protocols for determining total gastrointestinal and colonic transit times exist. However, no evidence exists to recommend one from the others. The code Unknown is used if the transit time is not determined.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Leduc BE, Spacek S, Lepage Y. Colonic transit time after spinal cord injury: Any clinical significance. J Spinal Cord Med 2002; 25: 161-166. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Free-Form Entry

C21618 Bowel care time stool pass care past three month average indicator BwlCrTmStlPsCrPstThrMoAvgInd The indicator related to average time duration spent waiting after last stool passes before ending bowel care within the last three months The indicator related to average time duration spent waiting after last stool passes before ending bowel care within the last three month Average time spent waiting after last stool passes before ending bowel care within the last three months Not applicable;Unknown Not applicable;Unknown Alphanumeric

Record in time duration in minutes based on each individual's own assessment of time consumption. This element begins at the end of the previous element (Stool intermittent or continuous defecation with or without assistance past three months average duration).

House JG, Stiens SA. Pharmacologically initiated defecation for persons with spinal cord injury: effectiveness of three agents. Arch Phys Med Rehabil 1997; 78: 1062-1065. Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06215 Abdominal bloating frequency AbdmnlBltFreq The frequency of abdominal bloating within the last three months. The frequency of abdominal bloating within the last three months. Abdominal bloating within the last three months Daily;Not every day but at least once per week;Not every week but at least once per month;Less than once per month;Never;Not applicable;Unknown Daily;Not every day but at least once per week;Not every week but at least once per month;Less than once per month;Never;Not applicable;Unknown Alphanumeric

Choose one. Some individuals with high complete lesions may not feel abdominal bloating. In such cases the code "Never" and not the code "Unknown" should be used.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06230 Bowel care facilitators other text BowelCrFacltatrOthrTxt The text of maneuver used to facilitate bowel care The text of maneuver used to facilitate bowel car Bowel care facilitators within the last three months Alphanumeric

For each bowel care facilitator indicate if it was used

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets 255

Free-Form Entry

C06244 Colonic transit right side measurement ColncTransRtSdMeasr The transit time of the caecum, ascending- and transverse colon assessed by means of radioopaque markers and measured in hours. The transit time of the caecum, ascending- and transverse colon assessed by means of radioopaque markers and measured in hours. Right Colonic Transit Time Numeric Values

Record the transit time in hours. The code Not tested is used if the transit time is not determined.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Free-Form Entry

C06216 Abdominal pain discomfort frequency AbdmnlPainDiscfrtFreq The frequency of abdominal pain/discomfort within the last three months. The frequency of abdominal pain/discomfort within the last three months. Abdominal pain discomfort within the last three months Daily;Not every day but at least once per week;Not every week but at least once per month;Less than once per month;Never;Not applicable;Unknown Daily;Not every day but at least once per week;Not every week but at least once per month;Less than once per month;Never;Not applicable;Unknown Alphanumeric

Choose one. Abdominal pain or discomfort is a common symptom in individuals with SCI but also in chronic constipation or irritable bowel syndrome. It should be documented separately from abdominal bloating and perianal symptoms covered by those specific variables. In some individuals abdominal pain is an indirect signal of the need to defecate. In such cases it is covered both by that specific variable in the Bowel Function Basic SCI Data Set and here. In subjects unable to feel abdominal pain the term "Never" should be used.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06231 Bowel care facilitators past three months type BwlCrFacltatrPstThrMoTyp The indicator of whether the type of bowel care facilitator was practiced regularly within the past three months The indicator of whether the type of bowel care facilitator was practiced regularly within the past three months. Bowel care facilitators within the last three months None;Digital stimulation or evacuation;Abdominal massage;Gastrocolonic response;Other, specify;Unknown None;Digital stimulation or evacuation;Abdominal massage;Gastrocolonic response;Other, specify;Unknown Alphanumeric

For each bowel care facilitator indicate if it was used regularly within the past three months.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Multiple Pre-Defined Values Selected

C06416 Colonic transit left side measurement ColncTransLftSdMeasr The transit time of the descending colon (including the splenic flexure) and the rectosigmoid assessed by means of radioopaque markers and measured in hours. The transit time of the descending colon (including the splenic flexure) and the rectosigmoid assessed by means of radioopaque markers and measured in hours. Left Colonic Transit Time Numeric Values

Record the transit time in hours. The code Not tested is used if the transit time is not determined.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Free-Form Entry

C06217 Respiratory discomfort distended abdomen frequency ResprtyDiscfrtDistndAbdmnFreq The frequency of any respiratory discomfort (shortness of breath/difficulty in taking a deep breath) considered to be entirely or partly due to a distended abdomen within the last three months. The frequency of any respiratory discomfort (shortness of breath/difficulty in taking a deep breath) considered to be entirely or partly due to a distended abdomen within the last three months. Any respiratory discomfort shortness of breath difficulty in taking a deep breath considered to be entirely or partly due to a distended abdomen within the last three months Daily;Not every day but at least once per week;Not every week but at least once per month;Less than once per month;Never;Not applicable;Unknown Daily;Not every day but at least once per week;Not every week but at least once per month;Less than once per month;Never;Not applicable;Unknown Alphanumeric

Choose one. Respiratory symptoms entirely due to higher level SCI should not be included in this element.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06235 Bowel care initiation stool out past three months average duration BwlCrInittnStlOtPstThrMoAvgDur The average time duration in minutes from initiation of bowel care to first stool coming out within the last three months. The average time duration in minutes from initiation of bowel care to first stool coming out within the last three months. Average time from initiation of bowel care to stool comes out within the last three months Numeric Values

Record the time duration in minutes based on each individual?s own assessment of average time consumption. The code "Not applicable" can be used by some individuals with stomas.

House JG, Stiens SA. Pharmacologically initiated defecation for persons with spinal cord injury: effectiveness of three agents. Arch Phys Med Rehabil 1997; 78: 1062-1065. Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Free-Form Entry

Minute
C18142 Bowel care initiation stool out past three months average indicator BwlCrInittnStlOtPstThrMoAvgInd Indicator for whether the bowel care to stool coming out average time was not applicable or unknown Indicator for whether the bowel care to stool coming out average time was not applicable or unknow Average time from initiation of bowel care to stool comes out within the last three months Not applicable;Unknown Not applicable;Unknown Alphanumeric No references available Adult;Pediatric Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06218 Perianal pain defecation frequency PernlPainDefctnFreq The frequency of any perianal pain during defecation within the last three months The frequency of any perianal pain during defecation within the last three month Perianal pain during defecation within the last three months Daily;Not every day but at least once per week;Not every week but at least once per month;Less than once per month;Never;Not applicable;Unknown Daily;Not every day but at least once per week;Not every week but at least once per month;Less than once per month;Never;Not applicable;Unknown Alphanumeric

Choose one. Most individuals with complete SCI are unable to feel perianal pain during defecation. In such cases the code "Never" and not the code "Unknown" should be used. Indirect indicators of perianal pain during defecation such as perspiration, spasms or headache are not registered here. The code "Not applicable" is mainly for individuals with stomas.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06236 Stool defecation assistance past three months average duration StlDefctnAsstncPstThrMoAvgDur The average time duration in minutes during bowel movement that stool intermittently or continuously (in the case of a single defecation) comes out with or without assistance within the last three months The average time duration in minutes during bowel movement that stool intermittently or continuously (in the case of a single defecation) comes out with or without assistance within the last three months. Average time during bowel movement that stool intermittently or continuously comes out with or without assistance within the last three months Numeric Values

Record in time duration in minutes based on each individual's own assessment of time consumption. This element begins at the end of the previous element (Bowel care initiation to stool comes out past three months average duration).

House JG, Stiens SA. Pharmacologically initiated defecation for persons with spinal cord injury: effectiveness of three agents. Arch Phys Med Rehabil 1997; 78: 1062-1065. Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Free-Form Entry

minute
C18143 Stool defecation assistance past three months average indicator StlDefctnAsstncPstThrMoAvgInd Indicator for whether the average time during bowel movement that stool intermittently or continuously comes out with or without assistance is not applicable or unknown Indicator for whether the average time during bowel movement that stool intermittently or continuously comes out with or without assistance is not applicable or unknow Average time during bowel movement that stool intermittently or continuously comes out with or without assistance within the last three months Not applicable;Unknown Not applicable;Unknown Alphanumeric No references available Adult;Pediatric Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06219 Flatus incontinence frequency FltsIncntncFreq The frequency of flatus incontinence within the last three months. The frequency of flatus incontinence within the last three months. Frequency of flatus incontinence within the last three months Daily;Not every day but at least once per week;Not every week but at least once per month;Less than once per month;Never;Not applicable;Unknown Daily;Not every day but at least once per week;Not every week but at least once per month;Less than once per month;Never;Not applicable;Unknown Alphanumeric

Choose one. The code "Not applicable" is mainly for individuals with stomas.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06237 Bowel care time stool pass care past three months average duration BwlCrTmStlPssCrPstThrMoAvgDur The average time duration spent waiting after last stool passes before ending bowel care within the last three months. The average time duration spent waiting after last stool passes before ending bowel care within the last three months. Average time spent waiting after last stool passes before ending bowel care within the last three months Numeric Values

Record in time duration in minutes based on each individual's own assessment of time consumption. This element begins at the end of the previous element (Stool intermittent or continuous defecation with or without assistance past three months average duration).

House JG, Stiens SA. Pharmacologically initiated defecation for persons with spinal cord injury: effectiveness of three agents. Arch Phys Med Rehabil 1997; 78: 1062-1065. Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Free-Form Entry

minute
C18144 Bowel care time stool pass care past three months average indicator BwlCrTmStlPssCrPstThrMoAvgInd Indicator for whether the average time spent waiting for the last stool passes before ending bowel care is not applicable or unknown Indicator for whether the average time spent waiting for the last stool passes before ending bowel care is not applicable or unknow Average time spent waiting after last stool passes before ending bowel care within the last three months Not applicable;Unknown Not applicable;Unknown Alphanumeric No references available Adult;Pediatric Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06220 Fecal incontinence liquid stools frequency FclIncntncLiqStlFreq The frequency of fecal incontinence to liquid stools within the last three months. The frequency of fecal incontinence to liquid stools within the last three months. Frequency of incontinence to liquid stools within the last three months Two or more episodes per day;Once daily;Not every day but at least once per week;Not every week but more than once per month;Once per month;Less than once per month;Never;Not applicable;Unknown Two or more episodes per day;Once daily;Not every day but at least once per week;Not every week but more than once per month;Once per month;Less than once per month;Never;Not applicable;Unknown Alphanumeric

Choose one. If the individual has not had liquid stools within the last three months the code "Never" and not the code "Unknown" should be used. In individuals with episodes of fecal incontinence to liquid stools before the last three months without any episodes within in the last three months the code "Never" and not the code "Less than once per month" be should used. The code "Not applicable" is mainly for individuals with stomas.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06238 Anal incontinence lifestyle alteration past three months scale AnlInctncLifstylAltPstThrMoScl The scale that assesses lifestyle alteration due to anal incontinence within the last three months. The scale that assesses lifestyle alteration due to anal incontinence within the last three months. Lifestyle alteration due to anal incontinence within the last three months Lifestyle altered each day;Lifestyle altered at least once per week but not every day;Lifestyle altered more than once per month but not every week;Lifestyle altered once per month;Lifestyle altered less than once per month;Lifestyle not altered;Not applicable;Unknown Lifestyle altered each day;Lifestyle altered at least once per week but not every day;Lifestyle altered more than once per month but not every week;Lifestyle altered once per month;Lifestyle altered less than once per month;Lifestyle not altered;Not applicable;Unknown Alphanumeric

Choose one. This variable only covers altered lifestyle due to anal incontinence or the risk of anal incontinence. Examples may by avoidance of social activities, traveling, sexual activities etc. The code "Not applicable" is mainly for individuals with stomas.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C18791 Bowel care position past three months other text BowelCrPostnPstThrMoOTH The free-text field related to 'Bowel care position past three months type' specifying other text. The indicator of whether the bowel care position was used within the past three months The free-text field related to 'Bowel care position past three months type' specifying other text. The indicator of whether the bowel care position was used within the past three month Other, specify Alphanumeric

For each bowel care position indicate if it was used within the last three months

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets 4000

Free-Form Entry

C06000 Site identifier number SiteIDNum Unique identification number given to the study site to distinguish the location where data is recorded Unique identification number given to the study site to distinguish the location where data is recorde Site Alphanumeric

The site identifiers or IDs should be assigned by the study.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets 255

Free-Form Entry

C06221 Fecal incontinence solid stools frequency FclIncntncSldStlFreq The frequency of fecal incontinence to solid stools within the last three months. The frequency of fecal incontinence to solid stools within the last three months. Frequency of incontinence to solid stools within the last three months Two or more episodes per day;Once daily;Not every day but at least once per week;Not every week but more than once per month;Once per month;Less than once per month;Never;Not applicable;Unknown Two or more episodes per day;Once daily;Not every day but at least once per week;Not every week but more than once per month;Once per month;Less than once per month;Never;Not applicable;Unknown Alphanumeric

In individuals with episodes of fecal incontinence to solid stools before the last three months without any episodes within the last three months the code "Never" and not the code "Less than once per month" should used. The code "Not applicable" is mainly for individuals with stomas.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06239 Constipation lifestyle alteration past three months scale ConstptnLifstylAltPstThrMoScl The scale that assesses lifestyle alteration due to constipation within the last three months. The scale that assesses lifestyle alteration due to constipation within the last three months. Lifestyle alteration due to constipation within the last three months Lifestyle altered each day;Lifestyle altered at least once per week but not every day;Lifestyle altered more than once per month but not every week;Lifestyle altered once per month;Lifestyle altered less than once per month;Lifestyle not altered;Not applicable;Unknown Lifestyle altered each day;Lifestyle altered at least once per week but not every day;Lifestyle altered more than once per month but not every week;Lifestyle altered once per month;Lifestyle altered less than once per month;Lifestyle not altered;Not applicable;Unknown Alphanumeric

Choose one. This variable only covers altered lifestyle due constipation related symptoms including difficult bowel evacuation. Examples may by avoidance of social activities, traveling etc.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C18792 Bowel care facilitators past three months other text BowelCrFacltatrPstThrMoOTH The free-text field related to 'Bowel care facilitators past three months type' specifying other text. The indicator of whether the type of bowel care facilitator was practiced regularly within the past three months The free-text field related to 'Bowel care facilitators past three months type' specifying other text. The indicator of whether the type of bowel care facilitator was practiced regularly within the past three month Other, specify Alphanumeric

For each bowel care facilitator indicate if it was used regularly within the past three months.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets 4000

Free-Form Entry

C06005 Data collected date and time DataCollDateTime Date (and time, if applicable and known) the data were collected. This may be the date/time a particular examination or procedure was performed Date (and time, if applicable and known) the data were collected. This may be the date/time a particular examination or procedure was performe Date of data collection Date or Date & Time

Record the date/time according to the ISO 8601, the International Standard for the representation of dates and times (http://www.iso.org/iso/home.html). 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.).

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult;Pediatric Supplemental 3.00 2013-07-24 21:00:23.88 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Free-Form Entry

C06222 Defecation deferral past three months indicator DefctnDefrlPstThrMoInd The indicator of the ability to defer defecation for 15 minutes or more within the last three months. The indicator of the ability to defer defecation for 15 minutes or more within the last three months. Ability to defer defecation for fifteen minutes or more within the last three months Yes;No;Not applicable;Unknown Yes;No;Not applicable;Unknown Alphanumeric

Choose one. The code "Not applicable" is mainly for individuals with stomas or individuals without sensation of need to defecate.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06240 Bowel dysfunction impact life quality scale BwlDysfnctnImpctLifQualtyScale The self report scale that describes impact on quality of life caused by neurogenic bowel dysfunction. The self report scale that describes impact on quality of life caused by neurogenic bowel dysfunction. Self reported impact on quality of life due to bowel dysfunction Major impact;Some impact;Little impact;No impact;Unknown Major impact;Some impact;Little impact;No impact;Unknown Alphanumeric

Choose one. Self reported impact on quality of life caused by neurogenic bowel dysfunction covers the subject's own assessment of the impact of all aspects of neurogenic bowel dysfunction.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C19247 Subject ID SubIDNam Subject identification ID Subject identification ID Subject Alphanumeric

The participant or subject identifiers or IDs should be assigned by the study.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult;Pediatric Supplemental 1.00 2014-06-05 13:10:49.0 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets 255

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C06212 Bowel function SCI data constipation duration BowelFuncSCIDataConstipatDur The duration of participant's/subject's constipation. The duration of participant's/subject's constipation. Duration of constipation Less than a year;1-5 years;6-10 years;11-20 years;More than 20 years;Not applicable;Unknown Less than a year;1-5 years;6-10 years;11-20 years;More than 20 years;Not applicable;Unknown Alphanumeric

Choose one

Drossman DA. The functional gastrointestinal disorders and the Rome III process. Gastroenterology 2006; 130:1377-1390. Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Thompson WG, Longstreth GF, Drossman DA, Heaton KW, Irvine EJ, Muller-Lissner SA. Functional bowel disorders and functional abdominal pain. Gut 1999; 45 (Suppl II): II43-II47. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06223 Bowel care position text BowelCrPostnTxt The text of position assumed for bowel care The text of position assumed for bowel car Position for bowel care within the last three months Alphanumeric

For each bowel care position indicate if it was used

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets 255

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C06241 Anal tone examination result AnlTnExamReslt The result of digital examination of anal tone. The result of digital examination of anal tone. Anal tone Normal;Reduced;Excessive;Not tested;Not applicable Normal;Reduced;Excessive;Not tested;Not applicable Alphanumeric

Choose one

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Lestar B, Pennickx F, Kerremans R. The composition of the anal basal pressure. Int J Colorectal Dis 1989; 4: 118-122. Pedersen IK, Christiansen J. A study of the physiological variation in anal manometry. Br Surg 1989; 76: 69-70. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C21616 Bowel care initiation stool out past three month average indicator BwlCrInttnStlOtPstThrMoAvgInd The indicator related to average time duration in minutes from initiation of bowel care to first stool coming out within the last three months The indicator related to average time duration in minutes from initiation of bowel care to first stool coming out within the last three month Average time from initiation of bowel care to stool comes out within the last three months Not applicable;Unknown Not applicable;Unknown Alphanumeric

Record the time duration in minutes based on each individual?s own assessment of average time consumption. The code "Not applicable" can be used by some individuals with stomas.

House JG, Stiens SA. Pharmacologically initiated defecation for persons with spinal cord injury: effectiveness of three agents. Arch Phys Med Rehabil 1997; 78: 1062-1065. Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06213 Defecation unsuccessful frequency DefctnUnscsflFreq The frequency of unsuccessful attempts at defecation within the last three months The frequency of unsuccessful attempts at defecation within the last three month Unsuccessful attempts at defecation within the last three months Never;Less than once per month;Less than once per week but at least once per month;Once or more per week but not every day;1-3 times daily;4-6 times daily;7-9 times daily;10 times or more per day;Not applicable;Unknown Never;Less than once per month;Less than once per week but at least once per month;Once or more per week but not every day;1-3 times daily;4-6 times daily;7-9 times daily;10 times or more per day;Not applicable;Unknown Alphanumeric

Choose one. To be considered as one attempt the bowel emptying procedure should be separated from the previous bowel emptying procedure by some other activity. The code "Not applicable" is mainly for individuals with stomas.

Krogh K, Perkash I, Stiens SA, Biering-SØrensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Bowel Function Extended Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

CSV