| 1. |
- Bendt, Martina, et al.
(författare)
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Adults with spina bifida : A cross-sectional study of health issues and living conditions
- 2020
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Ingår i: Brain and Behavior. - : John Wiley & Sons. - 2162-3279 .- 2162-3279. ; 10:8
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 2. |
- Bendt, Martina, et al.
(författare)
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Adults with spina bifida : Ambulatory performance and cognitive capacity in relation to muscle function
- 2022
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Ingår i: Spinal Cord. - : Springer Science and Business Media LLC. - 1362-4393 .- 1476-5624. ; 60:2, s. 122-128
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Tidskriftsartikel (refereegranskat)abstract
- STUDY DESIGN: Cross-sectional study.OBJECTIVE: Describe and compare ambulatory performance and cognitive capacity in relation to muscle function in an adult cohort with spina bifida. Also, explore factors associated with ambulation in participants with muscle function level 3.SETTING: Specialist clinic for adults with spinal cord disorders in Stockholm, Sweden.METHODS: A total regional cohort of adults (n = 219) with spina bifida was invited, 196 (104 women, mean age 35 years, SD 13 years) participated. Mode of mobility, cognitive capacity and muscle function were investigated. For participants with muscle function level 3, factors associated with ambulation were investigated using multivariate logistic regression analysis.RESULTS: In all, 84 participants (42%) were community ambulators, 22 (12%) household ambulators and 90 (46%) wheelchair users. There was a linear association between the lower degree of muscle function and scoliosis (P < 0.001). Mode of mobility varied despite similar muscle prerequisites in participants with muscle function level 3 (n = 58). Factors associated with ambulation in participants with muscle function level 3 were the absence of scoliosis, lower BMI and higher cognitive capacity.CONCLUSIONS: Cognitive capacity and mode of mobility varied widely across the cohort. However, in participants with muscle function level 3, despite similar muscular prerequisites, a large variation in the mode of mobility was found, suggesting that other factors were involved. It is important to prevent scoliosis, support a healthy lifestyle, as well as offer cognitive screening and support to promote ambulatory function and optimise independence in the everyday lives of adults with spina bifida.
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| 3. |
- Bendt, Martina
(författare)
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Adults with spina bifida : from health and living conditions to motor-cognitive performance
- 2022
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Spina bifida (SB) is a congenital spinal cord dysfunction often leading to physical, medical and cognitive challenges. The level and extent of the spinal involvement often affects both sensory and motor function and secondary complications are common. There is a knowledge gap regarding adults with SB. The first part of this thesis aimed to describe health and living conditions of adults with SB in different age groups. Also, to identify and describe ambulatory and cognitive function within different levels of muscular function (MF). The second part aimed to describe gait and balance in ambulatory adults and explore motor cognitive performance during walking while performing a cognitive task. A cross-sectional study was performed on a near-total regional cohort of adults with SB. Participants were consecutively invited and interviews, questionnaires and assessments on physical, medical, social, and cognitive function were performed. A total of 196 participants were included (104 women 53%, 18-73 years, md 33 years [IQR 23]). Those with MF level 3 (hip flexion and knee extension grade 4–5) were further investigated for potential factors associated with ambulation. In the second part, 41 were included (49% women, 19-59 years, mean 37 [ SD 12]) with a regular daily walk distance >30 meters. A sensor-based gait analysis system was used to capture gait characteristics and dynamic balance was assessed with the Mini-BESTest. Motor and cognitive performance as well as the Timed up and go (TUG) was explored in both single task and dual task (DT) condition. In the total cohort 54% were ambulators and 46% used a wheelchair. Mode of mobility and cognitive capacity varied substantially across the group. A linear association was seen for presence of HC, contractures, and scoliosis with a lower degree of MF. For those with MF level 3 ambulation was independently associated with BMI, scoliosis, and a higher cognitive capacity. The youngest participants had a higher prevalence of HC and tethered cord symptoms, and fewer had passed compulsory school. For those included in the second part mean gait speed was 0.96 m/s (SD 0.2) and for the MiniBESTest 11 (SD 7). Participants with MF level 3 showed lower results (p≤.001, p≤.05 respectively) and a larger thoracic lateral sway (p≤.05). A DT cost was seen for gait speed (4%). For cognition a small DT cost was seen in accuracy, but no difference was seen in reaction time (p≤.05, p=.14 respectively). The largest DT cost was seen for TUG. Adults with SB have a complex set of physical, medical and cognitive problems that must be addressed to increase health and living conditions. More extensive problems were seen in the younger persons, who will most probably need more interventions in the future. Adults with SB showed a significant DT cost on most of the analysed parameters of gait, possibly indicating a risk of falling. Tailored follow-ups are important to meet the differing needs. The results can improve health and living conditions for adults with SB and contribute to more targeted interventions and better care.
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| 4. |
- Bendt, Martina, et al.
(författare)
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Gait and dynamic balance in adults with spina bifida
- 2022
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Ingår i: Gait & Posture. - : Elsevier BV. - 0966-6362 .- 1879-2219. ; 96, s. 343-350
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Spina bifida (SB) is a complex congenital malformation, often causing impaired gait performance depending on the level and extent of malformation. Research regarding gait and balance performance in adults with SB, has not been sufficiently described yet.RESEARCH QUESTION: What are the characteristics of spatiotemporal gait parameters and balance performance in adults with SB? Further, do persons with muscle function (MF) level 3 differ regarding gait and balance performance from those with MF level 1-2?METHODS: Cross-sectional observational study at an outpatient clinic. 41 adults with SB (18-65 years), who walked regularly. Spatiotemporal parameters of gait was assessed with the APDM system and balance performance with the Mini Balance Evaluation Systems Test (Mini-BESTest). Muscle strength in the legs was assessed with 0-5 manual muscle test, and participants were classified according to level of MF into groups MF1, MF2, and MF3. Two-sided t-test was used for parametric independent variables, and Cohen's d was used for effect sizes. The Mann-Whitney U test was used for non-parametric independent data and effect size was calculated by the z value (r = z/√n).RESULTS: Mean gait speed was 0.96 (SD 0.20) m/s and mean stride length 1.08 m (SD 0.17), individuals with MF3 showed significantly slower gaitspeed and shorter stride length (p < 0.05). Lumbar rotation was 21° (SD 11), and thoracic lateral sway 15° (IQR 15) with significantley difference (p < 0.001 and p < 0.05) for individuals in MF3. Mini-BESTest showed a mean score of 11.3 (SD 6.9), and individuals with MF3 showed significantly lower scores (p ≤ 0.001).SIGNIFICANCE: Gait and balance performance was reduced compared to normative data in almost all parameters, especially in persons with less muscle function. Increased knowledge from advanced gait analysis may help healthcare professionals to design rehabilitation programmes, in order to achieve and maintain a sustainable gait and balance performance.
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| 5. |
- Bendt, Martina, et al.
(författare)
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Living and health conditions for adults with spina bifida in Sweden – a comprehensive prevalence group study
- 2018
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Konferensbidrag (refereegranskat)abstract
- Introduction Seventy-five per-cents of children born with Spina Bifida (SB) are expected to live into adulthood, meaning that the adults will need more attention in the future. Adulthood involves great demands for persons with SB, but also for their families, the social well-fare and healthcare systems, as the group has a persistent need for care and support. The aim is to describe the living and health conditions for adults with Spina Bifida in different life stages including medical, physical, psychological, cognitive and social aspects. Methods A cross-sectional study conducted by a multidisciplinary team. Data collection was performed through structured interviews, questionnaires and clinical assessments. All individuals > 18 years with SB (n=219) registered at a regional outpatient clinic were offered participation; 196 persons (104 women, 92 men 18-73 years) were included. Results There was a great variation in the group concerning problems related to their congenital injury. The persons > 45 years and especially > 61 years seems to have less problems such as less prevalence of hydrocephalus, Chiari II malformation, tethered cord syndrome and they also walked to a higher extent. They passed elementary school to a higher extent and performed better on the tests for psychomotor speed and executive function. Conclusions The study shows the multifaceted problems this group is facing as adults with SB and contributes to increased knowledge concerning the living and health conditions. Increased knowledge can lead to targeted interventions and better care, thereby decreasing secondary complications, reducing costs for society and hopefully increasing quality of life for persons with SB and their families.
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| 6. |
- Ehrén, Ingrid, et al.
(författare)
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Cognitive challenges in persons with spina bifida : Bearing on urological dysfunctions?
- 2020
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Ingår i: Neurourology and Urodynamics. - : John Wiley & Sons. - 0733-2467 .- 1520-6777. ; 39:8, s. 2139-2145
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 7. |
- Ehrén, Ingrid, et al.
(författare)
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Voiding conditions, renal and bowel function in a cohort of adults with spina bifida
- 2020
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Ingår i: Neurourology and Urodynamics. - : Wiley. - 0733-2467 .- 1520-6777. ; 39:6, s. 1796-1802
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Tidskriftsartikel (refereegranskat)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 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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