Further thoughts on transition of care for spina bifida patients: Experiences in BC

Chehroudi, Cyrus; MacNeily, Andrew E.

doi:10.5489/cuaj.4249

Cited by 3 publications

(2 citation statements)

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Section: Introductionmentioning

confidence: 99%

“…High-quality integration of care between involved services such as neurosurgery, orthopedic surgery, urology, rehabilitation medicine, pediatrics, psychology, physical therapy, nursing, and social work eases management and communication between a myriad of providers, maximizes the functional capacity of patients, decreases the number of work/school days lost, and reduces the attrition of patient followups. 1,[7][8][9] Tethered cord syndrome (TCS) results from various pathologies that place the spinal cord under tension. 11 A majority of tethering lesions occur at the distal aspect of the spinal cord and place tension on the conus medullaris, which innervates the lower extremities, bowel, and bladder.…”

Section: Introductionmentioning

confidence: 99%

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<p>Multidisciplinary Management of Tethered Spinal Cord Syndrome in Children: Operationalizing an Outpatient Patient-Centered Workflow</p>

Behbahani

Shlobin

Rosen

et al. 2020

JMDH

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Introduction Multidisciplinary care for patients with tethered spinal cord syndrome (TCS) is valuable in ensuring comprehensive evaluation, timely follow-up, optimal functional outcome, and patient-centered care. The family-centered focus aims to minimize patient and parental burdens associated with care coordination. We present our first-year institutional experience in operationalizing a multidisciplinary, patient-centered, pediatric tethered cord clinic (TCC) to manage routine, long-term surgical follow-up for children with non-myelomeningocele-related tethered spinal cords. Methods TCC is composed of three surgical services: orthopedic surgery, neurosurgery, urology. A retrospective chart review of patients seen in the TCC from January 2019 to January 2020 was conducted. Patients enrolled in the clinic were intended for long-term follow-up. Demographic and outcome variables were collected. Results Fifty-nine patients were seen in TCC. Types of tethered spinal cords amongst these patients were the following: fatty filum (62.7%), dermal sinus tract (15.2%), meningocele manqué (8.4%), lipomyelomeningocele (6.7%), low lying conus medullaris (5.1%), and sacral arachnoid cyst (1.7%). Age at diagnosis was 1.31 ± 2.21 (median: 0.25 years) and at follow-up was 9.0 ± 5.18 years (median: 8 years). A total of 50.9% of patients were female, and 93.2% had a prior untethering procedure. Of all patients, 6.8% have no surgical intervention and continue to be monitored conservatively for evidence of decline. All three services evaluated 84.8% of patients during the same clinic session, while 15.3% of patients were seen by two of the services, and 20.3% of patients were able to schedule related imaging or diagnostic testing during the same visit. Conclusion We describe successful implementation of a multidisciplinary pediatric TCC and document the first year of experience. The TCC streamlines care, decreases burden on families, and reduces those lost to follow-up. Complex disease pathologies, even when clinically stable, require long-term follow-up with multiple subspecialties and benefit from multidisciplinary clinics.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

<p>Multidisciplinary Management of Tethered Spinal Cord Syndrome in Children: Operationalizing an Outpatient Patient-Centered Workflow</p>

Behbahani

Shlobin

Rosen

et al. 2020

JMDH

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Spinal cord issues in adult patients with MPS: transition of care survey

et al. 2018

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Evaluation of the effectiveness of surgical treatment of tethered spinal cord syndrome of secondary origin in spina bifida: a systematic review

Ryabykh,

Kalashnikov,

Lysachev

et al. 2024

Hir. pozvonoč.

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Objective. To present a literature review assessing the effectiveness of surgical treatment methods for tethered spinal cord syndrome of secondary origin in spina bifida.Material and Methods. The Pubmed, EMBASE, eLibrary, and Cochrane Library databases were searched for prospective cohort clinical studies published from 2009 to 2024 and evaluating the effectiveness of methods for correcting tethered spinal cord syndrome in spina bifida. The study was carried out in accordance with the guidelines for Preferred Reporting Items for writing Systematic Reviews and Meta-Analyses (PRISMA).Results. During this period, 20 articles were published assessing the effectiveness of surgical methods for correcting tethered spinal cord syndrome. Of these, 15 are pragmatic clinical trials and 5 are randomized clinical trials. The average level of evidence is III.Conclusion. Currently, it can be stated that there is an intra-expert consensus regarding functional radiological criteria for tethered spinal cord syndrome of secondary origin in spina bifida. However, the issue of the effectiveness of surgical intervention directly depends on the availability of objective methods for clinical assessment of the severity of functional deficit and the reversibility of morphofunctional changes in the nervous tissue. Despite the variety of clinical scales and questionnaires, there is no unified assessment system for neurological, urological and orthopedic deficits in patients with tethered spinal cord syndrome. In this context, functional MRI (spinal MR tractography) can be considered a promising method for objectifying the pathological process. However, the phenomena revealed during the examination are not fully studied and require further research.

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Further thoughts on transition of care for spina bifida patients: Experiences in BC

Cited by 3 publications

References 0 publications

<p>Multidisciplinary Management of Tethered Spinal Cord Syndrome in Children: Operationalizing an Outpatient Patient-Centered Workflow</p>

<p>Multidisciplinary Management of Tethered Spinal Cord Syndrome in Children: Operationalizing an Outpatient Patient-Centered Workflow</p>

Spinal cord issues in adult patients with MPS: transition of care survey

Evaluation of the effectiveness of surgical treatment of tethered spinal cord syndrome of secondary origin in spina bifida: a systematic review

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