Quality of life, psycho-pathological risks and sexuality in adolescents and young adults with spina bifida: Cases report study

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 their quality of 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 competencies associated to familiarity with the psychological and social problems of patients and their families. In light of the limited literature on SB and psychopathological risks, this study aimed to assess the presence of psychopathological behaviour in the current clinical sample. Then, it was assessed the quality of life as perceived by adolescents and young adults with SB not only in relation to their physical skills but also to their psychosocial health and well-being, with particular attention referred to sexuality of these patients. The starting hypothesis is that the presence of psychopathology is associated to a lower quality of life. The following tests were administered: Barthel Index, SF-36, SCL-90 R, YSR 11-18 and CBCL 6-18. The psychopathology results indicate a relevant percentage of pathological behaviour, mostly internalizing problems. As regards the relationship between quality of life, physical disability and psychic disability, the study has 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. About sexuality, the results suggest that it is not directly related to quality of life. The fact that adolescents with fewer physical problems have a worse emotional self-concept than adolescents with severe disability are discussed.