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

Abstract

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.

• Adult
• myelomeningocele
• occult spinal dysraphism
• quality of life
• social participation
• spina bifida

Acknowledgements

We also thank Marcel Post for his useful comments to improve this manuscript.