Version 2.1 of the International Spinal Cord Injury Bowel Function Basic Data Set

Krogh, Klaus; Halvorsen, Annette; Pettersen, Ann Louise; Biering‐Sørensen, Fin

doi:10.1038/s41394-019-0210-z

Cited by 7 publications

(3 citation statements)

References 2 publications

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“…It was considered important to keep the data collection manageable to ensure complete data. The following five ISCI datasets have been implemented over the years, of which two are Patient Reported Outcome Measures (PROM): ISCI Core Data Set (8,9), ISCI Quality of Life Data Basic Set (PROM) (10), ISCI Lower urinary tract function Basic Data Set (11,12), ISCI Bowel function Basic Data Set (13)(14)(15), and an adapted version of the ISCI Activity and participation data set (participation part is PROM) (16). In 2021 it was decided to implement a non-specific SCI PROM instrument to describe and value health EuroQol-5 Dimension-5 levels (EQ-5D-5L) (17).…”

Section: The Further Development Of Norscir -A Continuous Processmentioning

confidence: 99%

“…The figure illustrates that NorSCIR strives to implement the latest version of ISCI Data Sets, when updates are made. It is relevant in this case to mention that inconsistencies in the ISCI Bowel Data Set version 2.0 were recognized by NorSCIR and that was corrected and clarified in version 2.1 (15).…”

Section: The Further Development Of Norscir -A Continuous Processmentioning

confidence: 99%

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Realizing the potentials of a National Spinal Cord Injury Registry – 10 years of experiences

Halvorsen,

Pettersen,

Langlo

et al. 2023

Nor J Epidemiol

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The Norwegian Spinal Cord Injury Registry is a national quality registry that just celebrated its 10-year anniversary. The registry contributes to quality improvement in spinal cord injury care in Norway and other Nordic countries. The continuous improvement in clinical practice goes hand-in-hand with the further registry development. Data from the registry are furthermore used in different kinds of research projects. This article aims to provide an overview of how the Norwegian Spinal Cord Injury Registry was established, to share our experiences, insights, lessons learned during its development and ten years in operation, and to highlight its potential.

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Section: The Further Development Of Norscir -A Continuous Processmentioning

confidence: 99%

Section: The Further Development Of Norscir -A Continuous Processmentioning

confidence: 99%

Realizing the potentials of a National Spinal Cord Injury Registry – 10 years of experiences

Halvorsen,

Pettersen,

Langlo

et al. 2023

Nor J Epidemiol

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“…14 A number of validated data sets for spinal cord injury (including cauda equina) have been developed and approved by the International Spinal Cord Society and American Spinal Injury Association, including bowel, lower urinary tract, and sexual function. [19][20][21][22] Use of standardized data sets may aid screening and facilitate multicenter studies of post-CES dysfunction. In addition to clinical assessment-based tools, urodynamic and electromyographical tools have also been shown to predict bladder dysfuction outcomes, including electrically induced bulbocavernosus reflex, Qmax and Bladder Contractility Index.…”

Section: Table 2 Proportions Of Patients Reporting Problems Pre and Post Cauda Equina Syndrome (Ces)mentioning

confidence: 99%

Patient-Reported Bladder, Bowel, and Sexual Function After Cauda Equina Syndrome Secondary to a Herniated Lumbar Intervertebral Disc

Lam

deSouza

Laycock

et al. 2020

Topics in Spinal Cord Injury Rehabilitation

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Background: Cauda equina syndrome (CES) is rare neurosurgical emergency requiring emergent surgical decompression to prevent bladder, bowel, and sexual dysfunction that can have significant impact on quality of life. There is a paucity of data relating to the prevalence of these long-term complications. Objective: The aim of this observational study was to evaluate the long-term prevalence of CES-related bladder, bowel, and sexual dysfunction and impact on quality of life to inform service provision. Methods: Participants were selected through coding of operative records of patients who underwent lumbar decompression for CES secondary to a herniated intervertebral disc at two large UK neurosurgical departments between 2011 and 2015 inclusive. A telephone-based survey including both validated and modified tools was used to collect data pertaining to bladder, bowel, and sexual function and impact on quality of life both before development of CES and at the time of the survey, at least 1 year postoperatively. Results: Of 135 patients contacted, 71 (42 male, 29 female) responded. Post-CES compared to pre-CES, there was higher prevalence and significant intrarespondent deterioration of bowel dysfunction, bladder dysfunction, perception of bladder function, sexual function, effect of back pain on sex life, and activities of daily living/quality of life (p < .0001 for all). Significant differences in individual questions pre-CES versus post-CES were also found. Conclusion: We show high prevalence of long-term bowel, bladder, and sexual dysfunction post-CES, with functional and psychosocial consequences. Our results demonstrate the need for preoperative information and subsequent screening and long-term multidisciplinary support for these complications.

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Leitlinie: Neurogene Darmfunktionsstörung bei Querschnittlähmung (Langfassung)

Geng

Böthig

Hildesheim³

et al. 2020

coloproctology

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Version 2.1 of the International Spinal Cord Injury Bowel Function Basic Data Set

Cited by 7 publications

References 2 publications

Realizing the potentials of a National Spinal Cord Injury Registry – 10 years of experiences

Realizing the potentials of a National Spinal Cord Injury Registry – 10 years of experiences

Patient-Reported Bladder, Bowel, and Sexual Function After Cauda Equina Syndrome Secondary to a Herniated Lumbar Intervertebral Disc

Leitlinie: Neurogene Darmfunktionsstörung bei Querschnittlähmung (Langfassung)

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