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. 2020 Aug;10(8):e01736.
doi: 10.1002/brb3.1736. Epub 2020 Jul 7.

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

Martina Bendt  1   2 , Hanna Gabrielsson  1   3   4 , Dorothee Riedel  5 , Göran Hagman  2 , Claes Hultling  2   5 , Erika Franzén  6   7   8 , Mats Eriksson  3 , Åke Seiger  1   2
Affiliations

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

Martina Bendt et al. Brain Behav. 2020 Aug.

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.

Keywords: adult; health issues; living conditions; myelomeningocele; spina bifida.

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Conflict of interest statement

The authors declare no potential conflicts of interest with respect to the research, authorship, or publication of this article.

References

    1. Alriksson‐Schmidt, A.I. , Arner, M. , Westbom, L. , Krumlinde‐Sundholm, L. , Nordmark, E. , Rodby‐Bousquet, E. , & Hägglund, G. (2017). A combined surveillance program and quality register improves management of childhood disability. Disability and Rehabilitation, 39, 830–836. 10.3109/09638288.2016.1161843 - DOI - PubMed
    1. Alriksson‐Schmidt, A. , Josenby, A.L. , Lindquist, B. , & Westbom, L. (2018). Pain and health status in adults with myelomeningocele living in Sweden. Journal of Pediatric Rehabilitation Medicine, 11, 255–264. 10.3233/PRM-170517 - DOI - PMC - PubMed
    1. Alriksson‐Schmidt, A.I. , Thibadeau, J.K. , Swanson, M.E. , Marcus, D. , Carris, K.L. , Siffel, C. , & Ward, E. (2013). The natural history of spina bifida in children pilot project: Research protocol. Journal of Medical Internet Research, 2, e2 10.2196/resprot.2209 - DOI - PMC - PubMed
    1. American Academy of Orthopedic & Surgeons (1988). Joint motion. Edinburgh, UK: Churchill Livingstone.
    1. Bakaniene, I. , Ziukiene, L. , Vasiliauskiene, V. , & Prasauskiene, A. (2018). Participation of children with spina bifida: A scoping review using the international classification of functioning, disability and health for children and youth (ICF‐CY) as a reference framework. Medicina (Kaunas), 54, 40 10.3390/medicina54030040 - DOI - PMC - PubMed

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