Adolescents and young adults with spina bifida: psycho-pathological risks and quality of life

Background: Youths with Spina Bifida (SB) experience a variety of urological, neurological and orthopaedic problems, as well as varying degrees of limitations in mobility and autonomy which affect their psycho-affective state and the quality of their life (QOL).So far the psycho-relational functioning of SB subjects has been little studied in terms of psychological problems and psycho-pathological risks, especially in children and teen-age patients. The multidisciplinary team taking care of individuals with SB must have medical competences associated to familiarity with the psychological and social problems of patients and their families.We analized the quality of life as perceived by adolescents and young adults with Spina Bifida not only in relation to their physical skills but also to their psychosocial health and well-being. The starting hypothesis is that greater physical disability and the presence of psychopathology are associated to a lower quality of life. Objectives: In light of the limited literature on Spina Bifida and psychopathological risks, this study aimed to assess the presence of psychopathological behaviour in the current clinical sample. Methods: The sample included 42 subjects, 20 males (47.6%) and 22 females (52.4%), average age 19 years ± 3.5. The following tests were administered: Barthel Index, SF-36, SCL-90 R, YSR 11-18 and CBCL 6-18. Results: The psychopathology results indicate a relevant percentage of pathological behaviour, mostly internalizing problems. In particular psychopathological elements are associated to more serious physical disability.As regards the relationship between quality of life, physical disability and psychic disability, the study revealed that psychopathology is generally associated to a lower quality of life (both in physical and emotional aspects), whereas physical dysfunction is related to quality of life in different ways. The fact that adolescents with fewer physical problems have a worse emotional self-concept than adolescents with severe disability is discussed. Conclusions: This trend does not make it possible to predict the evolution of psychic disturbance and suggests that, for the treatment and for a good quality of life, it is important to consider each patient’s personal history and life setting in terms of culture, education and family history, with particular attention to how the condition is perceived.