Adults with spina bifida: A cross‐sectional study of health issues and living conditions

Bendt, Martina; Gabrielsson, Hanna; Riedel, Dorothee; Hagman, Göran; Hultling, Claes; Franzén, Erika; Eriksson, Mats; Seiger, Åke

doi:10.1002/brb3.1736

Cited by 27 publications

(24 citation statements)

References 50 publications

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“…At the Spinalis Outpatient Clinic at Rehab Station in Stockholm a cross‐sectional study of a near‐total regional cohort of adults with SB within the Greater Stockholm area was conducted by a multidisciplinary team 8 …”

Section: Methodsmentioning

confidence: 99%

Voiding conditions, renal and bowel function in a cohort of adults with spina bifida

Ehrén

Lindbo

Gabrielsson

et al. 2020

Neurourology and Urodynamics

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Aim To map voiding patterns, degree of continence, use of drugs for voiding disorders, kidney function and surgical interventions but also the bowel function in a near‐total regional cohort of adults with spina bifida aged more than or equal to 18 years. Methods All individuals more than or equal to 18 years of age with spina bifida registered at a regional outpatient clinic (n = 219) were invited to participate, of which 196 persons were included. Bladder and bowel function were assessed according to questions used by the Nordic Spinal Cord Injury Registry by structured interviews and questionnaires in combination with review of patient charts including kidney function. Results Twenty percent of the patients voided spontaneously. Fifty‐four percent used clean intermittent catherization (CIC) and of these, 14% had also undergone augmentation of the bladder and/or implantation of an artificial sphincter or sling, 23% had undergone major urological surgery, and 3% had an indwelling catheter. Seventeen percent of patients voiding spontaneously or using CIC reported total continence but as many as 36% reported daily leakage. Anticholinergics was the most common drug, used by 21% in the total cohort. About 13% of the patients had a reduced kidney function but only 1.5% had end stage renal failure. Seventy‐three percent had problems emptying the bowel and 18% experienced fecal leakage weekly or even daily. Conclusion We found a large variation in problems with bladder and bowel function in this adult group of persons with spina bifida. A structured customized program for follow‐up seems necessary to optimize their health status in these areas.

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Section: Methodsmentioning

confidence: 99%

Voiding conditions, renal and bowel function in a cohort of adults with spina bifida

Ehrén

Lindbo

Gabrielsson

et al. 2020

Neurourology and Urodynamics

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“…Subtests from Wechsler Adult Intelligence Scale®—Fourth Edition (WAIS‐IV): Coding, Block design, Arithmetic's, FAS (word generation), R30_tot (Rey Auditory Verbal Test [RAVLT], learning), R30_delrec (RAVLT, delayed recall 30 min). Coding, Block design, and FAS as described by Bendt et al 6 Arithmetic's, R30_tot, and R30_delrec not previously published…”

Section: Methodsmentioning

confidence: 99%

Cognitive challenges in persons with spina bifida: Bearing on urological dysfunctions?

Ehrén

Hagman

Lindbo

et al. 2020

Neurourology and Urodynamics

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Aim: To evaluate if adult persons with spina bifida (SB) who have urinary tract complications have cognitive difficulties that can be identified by neuropsychological tests. Methods: All individuals with SB ≥ 18 years of age registered at a regional outpatient clinic (n = 219) were invited, of which, 154 persons were included. Neuropsychological assessment of their cognitive status was performed with Wechsler Adult Intelligence Scale®-Fourth Edition: Coding, Block design, Arithmetic's, FAS (word generation), Rey Auditory Verbal Test for learning, and delayed recall 30 min. Bladder and bowel function were assessed with questions used by the Nordic Spinal Cord Injury Registry (NSCIR) in structured interviews, by questionnaires, and by chart reviews. Results: Average neuropsychological test results for this SB population was shown to be approximately 1 SD under the median for the general population. The Coding test showed significantly lower test results as compared with the whole SB group in persons with urinary tract complications, especially urinary tract infections, reduced kidney function, dependent emptying of the bladder, and the bowel and accidental bowel leakage. The Arithmetic's test showed a significant difference between subgroups in all parameters except reduced kidney function whereas the other neuropsychological tests were significantly correlated with some but not all urological parameters. Conclusion: We propose neuropsychological testing with primarily two tests to find those persons with SB who, due to cognitive challenges, might need extra support to minimize urological complications.

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“…Various other sequels may occur involving other organs depending on the level of MMC, including motor and sensory deficits, urological problems, and bowel incontinence [ 30 – 34 ]. Such complications may cause ambulation difficulties, diminished quality of life, and restriction of the patients’ ability to attend school [ 34 – 37 ]. Managing these potentially unfavorable consequences require a multidisciplinary approach and highly specialized care.…”

Section: Introductionmentioning

confidence: 99%

Orthopedic management of myelomeningocele with a multidisciplinary approach: a systematic review of the literature

et al. 2021

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Background Myelomeningocele (MMC) is the most common and severe form of spina bifida and imposes a significant burden on patients and the healthcare system. Recently, the multidisciplinary management of MMC has become popular. Herein, we aimed to review the orthopedic management, outcomes, and complications of the of patients with MMC eyeing a multidisciplinary approach. Methods We searched PubMed and EMBASE to find relevant studies published before August 2020. All studies that included clinical management of MMC patients and published earlier than 2000 were considered for review on the condition that they reported at least one orthopedic intervention and the rate of complications. We excluded review articles, case reports, case series, letters, commentaries, editorials, and conference abstracts. The primary and secondary goals of our review were to report the outcomes and complication rates of multidisciplinary management for MMC patients. Results Twenty-six studies included data for the management of 229,791 patients with MMC and were selected. Sixteen studies reported multidisciplinary management in addition to orthopedic management. From those, 11 (42.31%) included urologic management, 13 (50%) neurosurgical management, 11 (42.31%) neurologic management, and 5 (19.23%) gastrointestinal management. All studies included postnatal operations and related management. No randomized clinical trial was found in our search. Conclusion Orthopedic approaches play a key role in MMC management by alleviating spinal deformities, particularly scoliosis, and hip, foot, and ankle complications. However, the most appropriate management, whether surgical or non-surgical, may vary for different patients, given disease severity and the age of patients. Graphical abstract

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Adults with spina bifida: A cross‐sectional study of health issues and living conditions

Cited by 27 publications

References 50 publications

Voiding conditions, renal and bowel function in a cohort of adults with spina bifida

Voiding conditions, renal and bowel function in a cohort of adults with spina bifida

Cognitive challenges in persons with spina bifida: Bearing on urological dysfunctions?

Orthopedic management of myelomeningocele with a multidisciplinary approach: a systematic review of the literature

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