CDE Detailed Report

Record any assistance device utilized at the time of evaluation to augment ventilation. For each device indicate if it was utilized at the time of evaluation.
Respiratory insufficiency is common following spinal cord lesions. Ventilatory assistance devices include, but are not limited to: mechanical ventilators, phrenic nerve stimulators, diaphragmatic pacers, external
negative pressure devices, and bi-level positive airway pressure (BiPAP). These devices do not include routine administration of oxygen, intermittent positive pressure breathing (IPPB), or continuous positive airway pressure (CPAP). Wording of this variable reflects the International Spinal Cord Injury Core Data Set for the type of ventilatory assistance used to sustain respiration at discharge after the initial rehabilitation period following the spinal lesion (DeVivo et al. 2006). As the situation may have changed since discharge from the initial inpatient period the question is asked.

Based on physical examination

within the last four weeks

Choose one
In able-bodied men erections are usually a combination of psychogenic and reflex; however, in men with spinal cord lesion, varying types of erectile function may occur. Reflex erection potential is based on presence of reflex
function in S2-5 spinal segments.

Choose one. Awareness of the need to empty the bladder indicates any kind of bladder sensation as defined by International Continence Society (Abrams et al. 2002), i.e. normal (the individual is aware of bladder filling and increasing sensation up to a strong desire to void), increased (the individual feels an early and persistent desire to void), reduced (the individual is aware of bladder filling but does not feel a definite desire to void) or non-specific bladder sensation (the individual reports no specific bladder sensation, but may perceive bladder filling as abdominal fullness, vegetative symptoms like sweating or spasticity). No awareness of the need to empty the bladder should be noted as "no". Absent bladder sensation according to the definition of bladder sensation by the International Continence Society (the individual reports no sensation of bladder filling or desire to void) (Abrams et al. 2002) is not exactly the same as filling sensation and desire to void can be absent while temperature sensation or electrosensation can be present. "Not applicable" is to be used when the individual with spinal cord lesion has for example an unclamped indwelling catheter or non-continent urinary diversion.

Response of "Not applicable" includes too young to determine.

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

Respiratory insufficiency is common following spinal cord lesions. Ventilatory assistance devices include, but are not limited to: mechanical ventilators, phrenic nerve stimulators, diaphragmatic pacers, external negative pressure devices, and bi-level positive airway pressure (BiPAP). These devices do not include routine administration of oxygen, intermittent positive pressure breathing (IPPB), or continuous positive airway pressure (CPAP). Wording of this variable reflects the International Spinal Cord Injury Core Data Set for the type of ventilatory assistance used to sustain respiration at discharge after the initial rehabilitation period following the spinal lesion (DeVivo et al. 2006). As the situation may have changed since discharge from the initial inpatient period the question is asked.

Choose one

Choose one
Normal refers to normal antegrade ejaculation occurring after a similar amount of sexual stimulation as prior to spinal cord lesion.
Reduced/altered, refers to ejaculation that is possible after sexual stimulation, but is changed after the spinal cord lesion in either time required to ejaculate, or changes in semen volume, color, or quality.
Absent refers to an absence of external semen propulsion to sexual stimulation following the spinal cord lesion despite attempts to ejaculate.
Unknown refers to reports by individuals that they have not been sexually active thus they do not know if they are able to achieve ejaculation after the spinal cord lesion.

For each method of bladder emptying, indicate whether this is a main or a supplementary method. Two main and more supplementary methods may be indicated (adopted from Levi and Ertzgaard 1998).
Normal voiding: Voluntary initiation of micturition without reflex stimulation or compression of the bladder. This does not presume entirely normal function (Levi and Ertzgaard 1998).
Bladder reflex triggering comprises various manoeuvres performed by the individual with spinal cord lesion or an attendant in order to elicit reflex detrusor contraction by exteroceptive stimuli. The most commonly used manoeuvres are
suprapubic tapping, thigh scratching and anal/rectal manipulation (Abrams et al. 2002).
Voluntary bladder reflex triggering indicates that the bladder reflex is triggered by the spinal cord lesioned individual him/herself or by the attendant.
Involuntary bladder reflex triggering imply that there is no voluntary triggering of the voiding, but the individual with spinal cord lesion just let the urine run by itself when the reflex detrusor contraction occur by itself.
Bladder expressioncomprises various manoeuvres aimed at increasing intravesical pressure in order to facilitate bladder emptying. The most commonly used manoeuvres are abdominal straining, Valsalva's manoeuvre and CredÉ manoeuvre
(Abrams et al. 2002).
Straining includes abdominal straining, Valsalva's manoeuvre.
External compression includes CredÉ manoeuvre.
Catheterisation is a technique for bladder emptying employing a catheter to drain the bladder or a urinary reservoir (Abrams et al. 2002).
Intermittent catheterisation is defined as drainage or aspiration of the bladder or urinary reservoir / continent urinary diversion with subsequent removal of the catheter.
The following types of intermittent catheterisationare defined by the International Continence Society (Abrams et al. 2002):
Intermittent self-catheterisation is performed by the individual with spinal cord lesion himself/herself
Intermittent catheterisation can also be performed by an attendant (e.g. Family member or personal aid)
Indwelling catheterisation:an indwelling catheter remains in the bladder, urinary reservoir or urinary conduit for a period of time longer than one emptying (Abrams et al. 2002).
Transurethral indwelling catheterisationindicates that the urine is drained trough a catheter placed in the urethra.
Suprapubic indwelling catheterisation indicates that the urine is drained trough a catheter via the abdominal wall.
Sacral Anterior Root Stimulator (SARS): Emptying the bladder by electrical stimulation of the anterior sacral nerve roots via implanted electrodes.
Non-continent urinary diversion/ostomy: This includes ureteroileocutaneostomy (Bricker conduit), ileovesicostomy, vesicostomy. If any other method is used for bladder emptying it is recommended to be written in a text-field, from which it will be possible to retrieve more detailed data when necessary. Because other methods of bladder emptying are generally rare, it is not practical to give an inclusive list of bladder emptying methods. Use of diapers etc. because of incontinence is not to be reported here,but under "Collecting appliances for urinary incontinence".

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

Choose one
Many individuals with SCI lack any awareness of the need to defecate. Others have indirect symptoms. These are mainly abdominal cramping or discomfort and spasms of the abdominal muscles or lower extremities. Autonomic symptoms including headache, perspiration, piloerection, and chills before or during defecation are common, especially in individuals with lesions above Th6 (Krogh et al. 1997). Autonomic symptoms are often unpleasant to the individual and may indicate insufficient bowel emptying. Lack of awareness of the need to defecate is especially common in individual with complete lesions and increases the risk of fecal incontinence. Symptoms may change with time and in the present data set they are given for the last four weeks.

For each event related to cardiovascular function after spinal cord lesion record whether it was experienced by the participant.
These time-limited cardiovascular events with long-term sequelae should have their dates documented to be able to compute the time since injury and to identify the data collected in relation to various time points. If more than one episode has occured the last one has to be documented.

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.

Choose one. Data element should be checked against Gender. Question should be blank for Females.

For each method of bladder emptying, indicate whether this is a main or a supplementary method. Two main and more supplementary methods may be indicated (adopted from Levi and Ertzgaard 1998).

Choose one

Choose one main method
Individuals with SCI may use a combination of bowel emptying rocedures. For practical purposes one should be defined as the Main method. Supplementary methods should be performed at least once every week. More than one supplementary method can be used. The choice of defecation method and bowel care procedures may change with time and in the present data set they are given for the last four weeks. Digital ano-rectal stimulation is digital triggering of rectal
contractions and anal relaxation and thus rectal emptying.
Digital evacuation is the need to dig out stools with a finger. Mini enema (or Clysma) contains 150 ml or less and enema contain > 150 ml.
In individuals having a colostomy, this is always considered the main method for defecation.

For each type of cardiovascular function after spinal cord lesion record whether it was experienced by the participant within the last three months.
Cardiac conditions: Subjective symptoms related to the heart that occur post-spinal cord lesion should be documented (e.g. abnormal heart rates/rhythm, angina, palpitation etc.).
Orthostatic hypotension: Symptomatic or asymptomatic decrease in blood pressure usually exceeding 20 mmHg systolic or 10 mmHg diastolic on moving from the supine to an upright position.
Dependent oedema: A clinically detectable increase in extracellular fluid volume localized in a dependent area, such as a limb, characterized by swelling or pitting.
Hypertension: (arterial blood pressure >140/90 mmHg). The diagnosis of hypertension in individual with SCI should be considered after careful monitoring and documentation of the level of arterial blood pressure and exclusion of possible elevation of BP due to episodes of AD.
Autonomic dysreflexia: A constellation of signs and/or symptoms in SCI above T5-6 spinal cord segments in response to noxious or non-noxious stimuli below the level of injury defined by an increase in systolic blood pressure (> 20mm Hg above baseline), and which may include one of the following symptoms: headache, flushing and sweating above the level of the lesion, vasoconstriction below the level of the lesion, and dysrhythmia. This syndrome may or may not be symptomatic and may occur at any time following SCI.

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.

Choose one. Data element should be checked against Gender. Question should be blank for Males.

The average number of voluntary bladder emptying per day during the last week is given separately. This number refers to the number of voluntary bladder emptying irrespective of the method. Any of the following methods may be used separate or in combination: normal voiding, voluntary bladder reflex triggering, bladder expression, intermittent catheterization, or sacral anterior root stimulation. If a combination of methods is used during the same bladder emptying it should only be counted as one bladder emptying. The number is given as an average for the last week only, as the individual is not expected to remember this for a longer period of time. The number is given as the nearest integer number.

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