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To study psychological distress and fatigue among persons with spina bifida (SB) 50 years or older and living in Norway. In 2017, cross-sectional data were collected (n = 30). The Hospital Anxiety and Depression Scale (HADS) and the Fatigue Severity Scale (FSS) were used. Descriptive statistics, non-parametric tests, and Spearman correlations were performed. Relevant information from previous studies on adults with chronic spinal cord injury (SCI) and the general population, were collected for comparison. Participants were 18 women and 12 men, mean age 57.5 (SD 5.6), 26 with myelomeningocele, and six with hydrocephalus. Thirty percent scored above the HADS-A- and 20% above the HADS-D thresholds, thus in the same range as previous studies of SB, but higher compared to persons with SCI and norms. HADS-D correlated with pain and FSS scores. Forty percent reported fatigue symptoms (9/15 without hydrocephalus, 3/6 with hydrocephalus). The study revealed a high prevalence of fatigue symptomatology among middle-aged and older adults with SB. Symptoms of anxiety and depression were more common than among persons with chronic SCI and norms. SB follow-ups should include awareness of psychological distress and fatigue, and investigate pain and medication side effects among possible influencing factors. Clinicians treating adult persons with SB should be aware of possible psychological distress and fatigue symptomatology among these patients. We suggest an initial screening for psychological distress and fatigue in persons with SB during follow-up visits and rehabilitation. Interventions to reduce pain may influence levels of psychological distress and/or fatigue in patients with SB. Clinicians should enquire about the effects of medication on fatigue when assessing and prescribing new medications; a thorough medication review helps to assess the benefits and risks. [ABSTRACT FROM AUTHOR]

Purpose: To study physical function perspectives in persons with spina bifida (SB) aged ≥50 years. In relation to this, we also wanted to survey participation perspectives, health issues and health services usage. Methods: We used predefined fixed questions to interview community-dwelling adults with SB in Norway. Physical function assessments included Timed Up and Go, the Six Minute Walk Test, and BMI was calculated. Descriptive statistics were used, and logistic regression was performed to study variables associated with community walking. Results: Eighteen women and twelve men, twenty-four of them without hydrocephalus, participated in the study. Their mean age was 57.5 years (range 51–76). The majority were well-functioning persons, with 53% employed. However, deterioration in ambulation started at a median age of 40 years in >80% of the participants. Higher odds for being a community walker were found for sacral SB, BMI < 30, and/or being more physical active per week. More than 60% of the study sample used antihypertensive medication, and 43% were obese (BMI ≥ 30). Pain was a commonly perceived health problem. About 50% had been through a comprehensive SB-specific health evaluation in adulthood. Conclusion: The striking results on obesity, hypertension, pain and deterioration in ambulatory function in middle-aged and elderly SB cases call for action. Our findings elucidate the importance of prevention and clinical follow-up throughout the lifespan, even in well-functioning SB cases. Weight-management and interventions to reduce hypertension are issues that need attention in follow-up and as part of secondary rehabilitation in spina bifida. Early deterioration in ambulatory function and pain in spina bifida are target areas for multidisciplinary secondary rehabilitation, and should adequately focus on maintaining or improving "real-life" functioning performance. Neurogenic bowel and fecal incontinence are important in relation to social participation in ageing spina bifida. Rehabilitation programs and research should take the level of cele and hydrocephalus into account. [ABSTRACT FROM AUTHOR]