Cognition and emotional distress in middle-aged and older adults with spina bifida myelomeningocele

Abstract

Purpose To investigate cognitive functioning and emotional distress in adults aged 55 to 68 years old with spina bifida myelomeningocele (SBM), both with and without hydrocephalus. A secondary aim was to explore the associations between psychosocial factors in relation to emotional distress. Materials and methods Cross-sectional study of eleven females and eight males with SBM, five with and twelve without hydrocephalus. Cognitive functioning was investigated with neuropsychological tests and self-report measures. Furthermore, participants completed questionnaires regarding resilience, access to social support, coping, and emotional distress. Descriptive statistics were applied, and Spearman Rho correlation coefficients were used to explore the relationships between psychosocial factors and emotional distress. Results Eleven exhibited normal cognitive functioning. An observed difference was seen between participants with and without hydrocephalus, where six and five persons reported clinical levels of depression and anxiety, respectively. Positive perceptions of self and future were associated with lower levels of depression and anxiety. Conclusion This study adds important information about cognitive functioning and emotional distress in an understudied population. The results indicated normal cognitive functioning in adults aged 55 to 68 years with SBM without hydrocephalus. Prevalence of emotional distress was comparable with previous studies of younger adults with SBM. There is a need for longitudinal studies investigating cognition and psychological health to fully capture important aspects of the life course of SBM with and without hydrocephalus.

Linguistic, Content and Face Validity of the Swedish Version of a Quality-of-Life Assessment for Children, Teenagers and Adults with Spina Bifida

“…Furthermore, the study sample consisted of a good spread as to patient age and sex. As in many cases of MMC, the majority of study participants had shunt-treated hydrocephalus, and as this may indicate the severity of these patients' clinical presentation [41,58], this should be taken into account when interpreting our results. Furthermore, more characteristics regarding the patients and their parents could have been collected to increase the understanding of the study results, such as their educational status.…”

“…The cognitive debriefing technique encompasses quantitative and qualitative inquiries [36], which were shown to be important in this study in detecting the difficulties study participants perceived in the translated questionnaires. This may be especially important to consider in HRQoL assessments of people with spina bifida, as many of them have impaired cognitive abilities [40][41][42], manifested in problems with language, perception, memory, and executive and attentional functions. For example, we observed some challenges for the children to rate their experience of HRQoL on a 5-point Likert scale.…”