Living and health conditions for adults with spina bifida in Sweden – a comprehensive prevalence group study

• 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.

Subject headings

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Omvårdnad (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Nursing (hsv//eng)

Keyword

Spina bifida

Caring sciences

Omvårdnadsvetenskap

Publication and Content Type

ref (subject category)

kon (subject category)