Medical and psychosocial problems in middle-aged spina bifida patients: survey among members of the Dutch patients' association.

Purpose: To identify physical, emotional and psychosocial issues in the older person with spina bifida (SB).

Method: Members of the Dutch patients' association aged >25 years (n = 184) were asked to complete a questionnaire. This survey contained questions on physical and psychosocial complaints, as well as problems regarding social participation.

Results: A total of 61 people (33.2%) with a median age of 45 years (IQR 33.5-60.0) years responded. During the previous 5 years, 86.9% experienced new physical complaints, whereas only 13.1% remained free of new complaints. 50.8% of the persons had new bladder problems and 44.1% had bowel complaints. Older persons more often had physical complaints. New musculoskeletal problems occurred in 75.4%. Psychological problems were common (78.7%). Overall psychological problems were not associated with gender, hydrocephalus or age. Social participation was good, with 90.2% of persons taking part in some type of social activity.

Conclusions: In this study, a majority of adult persons with SB reported newly arising physical and psychological problems during the previous 5 years. Given the large number and diversity of the newly emerging problems after adolescence, regular and multidisciplinary surveillance of adult persons with SB is recommended.

Implications For Rehabilitation: Adults with spina bifida often disappear from follow-up, or are forced to take care of their follow-up themselves. According to a survey carried out among adult SB-patients from the general community, these persons continued to struggle with many physical and psychosocial problems. Given the high number of psychosocial problems in this sample of patients, psychosocial counseling could be beneficial during follow-up. This paper adds to the body of evidence indicating that multidisciplinary follow-up for SB-patients could be beneficial, also when patients grow beyond the age of 18 years.