50 Years and older – born with spina bifida: participation, health issues and physical function

Lidal, Ingeborg Beate; Larsen, Kristin; Hoff, Marie D.

doi:10.1080/09638288.2019.1621953

Cited by 21 publications

(42 citation statements)

References 39 publications

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“…However, different social systems make it hard to compare results. A Norwegian study (Lidal et al., 2019) with a social system more like Sweden reported that 53% of their cohort (adults > 50 years) were employed, which corresponds with results in this study where 50% of participants > 46 years were employed (41% were retired). Social policies in Sweden have managed to integrate adults born with a disability into the regular educational system but have failed to offer them permanent work (Törnbom et al., 2011).…”

Section: Discussionsupporting

confidence: 89%

“…Up until now, most studies concerning adults with SB have focused on young adults (Young, Anselmo, Burke, McCormick, & Mukherjee, 2014), and the studies often describe specific impairments and limitations such as urological (Lindehall et al., 2008), neurological (Young et al., 2014), orthopedic (Wright, 2011), and neuropsychiatric issues (Zabel et al., 2011). A multidisciplinary approach to study the health and living conditions of adults with SB, including the aging population, is of importance since there is limited knowledge of the SB natural history (Bakaniene et al., 2018; Fletcher & Brei, 2010; Lidal, Lundberg Larsen, & Hoff, 2019; Webb, 2010).…”

Section: Introductionmentioning

confidence: 99%

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

Bendt

Gabrielsson

Riedel³

et al. 2020

Brain and Behavior

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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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Section: Discussionsupporting

confidence: 89%

Section: Introductionmentioning

confidence: 99%

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

Bendt

Gabrielsson

Riedel³

et al. 2020

Brain and Behavior

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“…The clinical framework that encompasses healthcare for patients with CP and SB has been largely confined to issues that arise during childhood and adolescence. Despite the shortage of surveillance research to evaluate lifespan health and developmental trajectories in both of these populations, there is ample indication that adults living with CP and SB have a significant and progressive functional decline, inadequate muscle and bone development, increased obesity, and risk for secondary chronic disease (Dosa et al, 2009; Lampe, Grassl, Mitternacht, Gerdesmeyer, & Gradinger, 2006; Lidal, Lundberg Larsen, & Hoff, 2019; Marreiros, Monteiro, Loff, & Calado, 2010; Moreau, Li, Geaghan, & Damiano, 2008; Peterson, Zhang, Haapala, Wang, & Hurvitz, 2015; Polfuss, Bandini, & Sawin, 2017; Trinh et al, 2017; Whitney et al, In Press; D. G. Whitney et al, 2018). However, there have been very few studies to examine psychological morbidity among adults living with CP or SB (Bellin et al, 2010; Dicianno et al, 2015; Smith et al, 2018; Whitney et al, 2019a), and no current studies have examined the longitudinal trends of a broad array of mental health disorders in these populations.…”

Section: Introductionmentioning

confidence: 99%

Psychological morbidity among adults with cerebral palsy and spina bifida

et al. 2020

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Background Very little is known about the risk of developing psychological morbidities among adults living with cerebral palsy (CP) or spina bifida (SB). The objective of this study was to compare the incidence of and adjusted hazards for psychological morbidities among adults with and without CP or SB. Methods Privately insured beneficiaries were included if they had an International Classification of Diseases, Ninth revision, Clinical Modification diagnostic code for CP or SB (n = 15 302). Adults without CP or SB were also included (n = 1 935 480). Incidence estimates of common psychological morbidities were compared at 4-years of enrollment. Survival models were used to quantify unadjusted and adjusted hazard ratios for incident psychological morbidities. Results Adults living with CP or SB had a higher 4-year incidence of any psychological morbidity (38.8% v. 24.2%) as compared to adults without CP or SB, and differences were to a clinically meaningful extent. Fully adjusted survival models demonstrated that adults with CP or SB had a greater hazard for any psychological morbidity [hazard ratio (HR): 1.60; 95% CI 1.55–1.65], and all but one psychological disorder (alcohol-related disorders), and ranged from HR: 1.32 (1.23, 1.42) for substance disorders, to HR: 4.12 (3.24, 5.25) for impulse control disorders. Conclusions Adults with CP or SB have a significantly higher incidence of and risk for common psychological morbidities, as compared to adults without CP or SB. Efforts are needed to facilitate the development of improved clinical screening algorithms and early interventions to reduce the risk of disease onset/progression in these higher-risk populations.

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“…In a previous study, we shared findings on participation in society, overall health issues, and health service usage among these adults with SB. 15 We also presented study methods and justified the generalizability of the results to individuals aged 50 years and older with SB, without hydrocephalus. 15…”

mentioning

confidence: 76%

“…15 We also presented study methods and justified the generalizability of the results to individuals aged 50 years and older with SB, without hydrocephalus. 15…”

mentioning

confidence: 76%

Gait Function in Adults Aged 50 Years and Older With Spina Bifida

Larsen

Maalen-Johansen

Rennie

et al. 2021

Archives of Physical Medicine and Rehabilitation

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To study gait function among individuals with spina bifida (SB) aged 50 years or older. Design: A cross-sectional study conducted in 2017. Setting: Home-dwelling participants from all regions in Norway. Participants: Individuals between the ages of 51 and 76 years (NZ26; 16 women) categorized as independent walkers (nZ9), walkers with aids (nZ10) and nonwalkers (nZ7). Interventions: Not applicable. Main Outcome Measures: Questionnaire, pain assessment, anthropometry, Falls Efficacy Scale International (FES-I), objective gait analysis, 6-minute walk test (6MWT), and timed Up and Go (TUG). Results: Walking speed correlated with SB severity (rZe.59; PZ.008). Individuals who walked slower than 0.81 m/s had a higher body mass index (BMI) than those who walked faster (PZ.008). Independent walkers walked slower than healthy age-matched walkers (PZ.046); spatiotemporal variables showed that this was owing to shorter steps rather than cadence. The mean TUG was 10.6AE2.6 seconds in independent walkers and 20.2AE6.5 in walkers with aids (P<.01). The mean 6MWT was 504AE126 meters in independent walkers and 316AE88 in walkers with aids (P<.01). The mean pain intensity (numeric rating scale) was 4.9AE2.2 in independent walkers and 4.2AE1.6 in walkers with aids, but the difference was not statistically significant. FES-I was significantly lower among independent walkers (mean, 23.6AE3.9) than walkers with aids (mean, 31.4AE10.0) (PZ.042). Conclusions: Participants commonly experienced an early onset deterioration in gait function, and walking speed was influenced by SB severity and BMI. This highlights the importance of early monitoring and weight management during follow-up for SB.

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50 Years and older – born with spina bifida: participation, health issues and physical function

Cited by 21 publications

References 39 publications

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

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

Psychological morbidity among adults with cerebral palsy and spina bifida

Gait Function in Adults Aged 50 Years and Older With Spina Bifida

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