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.

Background and objective Individuals with spina bifida often have cognitive impairments leading to difficulties in education and daily activities. The aims of this study were to explore cognitive impairments in adults with spina bifida and to consider associations between impairments, educational outcome and performance of daily activities, comparing individuals with and without intellectual disability. Methods Data were collected on 35 adults with spina bifida via cognitive tests and Assessment of Motor and Process Skills (AMPS). Participants were divided into 3 groups: individuals without intellectual disability who completed compulsory education (NID-C); those without intellectual disability, who failed to successfully pass compulsory education (NID-F); and those with intellectual disability failed to successfully pass compulsory education (ID-F). Results All individuals with intellectual disability failed to successfully pass compulsory education (group ID-F) and had poorer scores across almost all measures than group NID-F and significantly poorer scores than group NID-C. All except 6 individuals scored below cut-off levels for effort and safety on both AMPS motor and process scales; more significant associations were seen between the cognitive tests and the motor rather than process scale. Conclusion Cognitive impairments, irrespective of intellectual disability, impact on the performance of everyday activities and on educational achievement, and thus need to be considered in assessments and interventions to improve outcomes and promote independence in people with spina bifida. LAY ABSTRACT Individuals with spina bifida often have cognitive impairments, resulting in difficulties in performing their everyday life activities at home, in education, training and social life. These difficulties are often not recognized, and the individuals do not receive the support they need from society. This study investigated the relationship between cognitive impairments, school achievements and performance of daily life activities of 35 adults with spina bifida. The study examined whether individuals had an intellectual disability, and whether they had completed compulsory education, and compared this with their cognitive function and performance in everyday activities. The results confirm that individuals with cognitive impairments, even those without intellectual disabilities, often have considerable difficulties in school achievements, and performance of daily life activities, reducing their ability to live independently.

The purpose of the study was to analyse the content and evaluate the quality of clinical occupational therapy in outpatients as reported by their respective therapists. An inductive and interpretive technique with special study protocols was developed in Sweden for the study of six patients. Each therapist kept a protocol of the patient's 2–3 months' participation in occupational therapy. The protocols were subsequently interpreted independently by another occupational therapist and a physician. At the end of the study, function and ability had improved in four cases and quality of life in five out of six cases as demonstrated by their ability in activities of daily living.

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