Abstract: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 question… Show more
“…Bladder and bowel regimes were assessed with NSCIR (Levi & Ertzgaard, 1998), and part of the results are presented in Table 3. More in‐depth results will be presented in a separate article (Ehrén, Lindbo, Gabrielsson, Bendt, & Seiger, 2020 accepted for publication).…”
Section: Methodsmentioning
confidence: 99%
“…More in-depth results will be presented in a separate article (Ehrén, Lindbo, Gabrielsson, Bendt, & Seiger, 2020 accepted for publication).…”
Section: Structural and Medical Characteristicsmentioning
Objective
To describe health issues and living conditions in a cohort of adults living with Spina bifida.
Material and methods
A cross‐sectional study was conducted by a multidisciplinary team.
Adults with spina bifida (
n
= 219) were invited to participate. One‐hundred‐and‐ninety‐six persons (104 women and 92 men; 18–73 years, median age 33 years) were included. Structured interviews, questionnaires, and clinical assessments for medical, social, physical, and cognitive functions were used.
Results
There was large variation among participants as regards the consequences of their spina bifida. Individuals < 46 years seemed to have more secondary conditions such as hydrocephalus, Chiari II malformation, tethered cord symptoms, and latex allergy. A higher proportion of the individuals
>
46 years and older was able to walk, and they had performed better in primary school and on tests of psychomotor speed and executive function.
Conclusions
This study demonstrates that adults with spina bifida have a complex set of physical, cognitive, and social needs that need to be addressed in order to improve their health issues and living conditions. The high prevalence of urinary and fecal incontinence, pain, and overweight underline that these issues need much attention during follow‐up. The future generations of older adults may need more attention in many ways, since they at a younger age do have more complex medical conditions, lower physical and cognitive functions, and lower prerequisites for independent living and participation in society than those > 46 years today. This elucidates that adults with spina bifida need systematic follow‐up services and social support throughout life.
“…Bladder and bowel regimes were assessed with NSCIR (Levi & Ertzgaard, 1998), and part of the results are presented in Table 3. More in‐depth results will be presented in a separate article (Ehrén, Lindbo, Gabrielsson, Bendt, & Seiger, 2020 accepted for publication).…”
Section: Methodsmentioning
confidence: 99%
“…More in-depth results will be presented in a separate article (Ehrén, Lindbo, Gabrielsson, Bendt, & Seiger, 2020 accepted for publication).…”
Section: Structural and Medical Characteristicsmentioning
Objective
To describe health issues and living conditions in a cohort of adults living with Spina bifida.
Material and methods
A cross‐sectional study was conducted by a multidisciplinary team.
Adults with spina bifida (
n
= 219) were invited to participate. One‐hundred‐and‐ninety‐six persons (104 women and 92 men; 18–73 years, median age 33 years) were included. Structured interviews, questionnaires, and clinical assessments for medical, social, physical, and cognitive functions were used.
Results
There was large variation among participants as regards the consequences of their spina bifida. Individuals < 46 years seemed to have more secondary conditions such as hydrocephalus, Chiari II malformation, tethered cord symptoms, and latex allergy. A higher proportion of the individuals
>
46 years and older was able to walk, and they had performed better in primary school and on tests of psychomotor speed and executive function.
Conclusions
This study demonstrates that adults with spina bifida have a complex set of physical, cognitive, and social needs that need to be addressed in order to improve their health issues and living conditions. The high prevalence of urinary and fecal incontinence, pain, and overweight underline that these issues need much attention during follow‐up. The future generations of older adults may need more attention in many ways, since they at a younger age do have more complex medical conditions, lower physical and cognitive functions, and lower prerequisites for independent living and participation in society than those > 46 years today. This elucidates that adults with spina bifida need systematic follow‐up services and social support throughout life.
“…One hundred forty‐one persons had a myelomeningocele and 13 persons had a non‐myelomeningocele lesion of whom 10 persons were diagnosed with a lipomeningocele and 3 persons with SB occulta. As we in our recently published study 7 found persons in the group with non‐myelomeningocele lesions with urologic/bowel problems, we included all persons in the study group in this survey. Neuropsychological tests from Wechsler Adult Intelligence Scale®—Fourth Edition (WAIS‐IV), known to be sensitive for common cognitive problems in the population with SB 3 were used in the examination of a relationship to urological problems 8 .…”
Section: Methodsmentioning
confidence: 99%
“…6 A more detailed study of the function of the urinary tract and the bowel function in the cohort has also been performed, describing voiding conditions, complications, renal function, urological interventions and bowel function/dysfunction. 7 When analyzing the urological complications, it became apparent that some patients had difficulties to maintain necessary routines for managing voiding and bowel function, which may be related to their cognitive challenges.…”
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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