Article

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.

Langue : ANGLAIS