title: Perception of secondary conditions in adults with spina bifida and impact on daily life.
abstract: BACKGROUND
  Spina bifida is a congenital defect of the neural tube resulting in motor and sensory disruption. Persons with spina bifida can also experience executive function impairments. Secondary conditions are physical, medical, cognitive, emotional, or psychosocial consequences to which persons with disabilities are more susceptible. Our experience suggested clinicians underappreciate the presence and impact of secondary conditions in adults with spina bifida because they do not specifically ask for this information.
  
  
  OBJECTIVE
  Describe the presence and impact of secondary conditions on daily life, as perceived by adults with spina bifida.
  
  
  METHODS
  A clinic-based sample was recruited from the active patient population of an adult specialty center for spina bifida-related care. All subjects were verbally administered a survey developed through literature review and clinical experience of the researchers. The survey measured the presence and perceived impact of secondary conditions. Recruitment and survey data collection occurred over a 6-month period to maximize age representation. Survey data were stratified by age, gender and lesion level for analysis.
  
  
  RESULTS
  Seventy-two respondents completed the survey. Pain was commonly reported, along with pressure ulcers, bowel & bladder concerns, depression, sleep disturbance, and limited social and community participation. No significant relationships were found between the presence or perceived impact of secondary conditions and age, gender or level of lesion.
  
  
  CONCLUSIONS
  Secondary conditions in spina bifida are present by early adulthood. Identifying these conditions during clinical encounters requires specific rather than general questions. Future study should evaluate earlier initiation of preventative measures by pediatric providers.
authors.affiliation: Gillette Children's Specialty Healthcare, St. Paul, MN, USA. Electronic address: rwagner@gillettechildrens.com.
authors.forename: Robert
authors.initials: R
authors.lastname: Wagner
authors.affiliation: Gillette Children's Specialty Healthcare, St. Paul, MN, USA.
authors.forename: Ronna
authors.initials: R
authors.lastname: Linroth
authors.affiliation: Gillette Children's Specialty Healthcare, St. Paul, MN, USA.
authors.forename: Candice
authors.initials: C
authors.lastname: Gangl
authors.affiliation: Gillette Children's Specialty Healthcare, St. Paul, MN, USA.
authors.forename: Nancy
authors.initials: N
authors.lastname: Mitchell
authors.affiliation: Gillette Children's Specialty Healthcare, St. Paul, MN, USA.
authors.forename: Michelle
authors.initials: M
authors.lastname: Hall
authors.affiliation: Gillette Children's Specialty Healthcare, St. Paul, MN, USA.
authors.forename: Rhonda
authors.initials: R
authors.lastname: Cady
authors.affiliation: Professional Data Analysts, Inc., Minneapolis, MN, USA.
authors.forename: Matthew
authors.initials: M
authors.lastname: Christenson
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D000368:Aged; D003863:Depression / Q000209:etiology; D006233:Persons with Disabilities / Q000523:psychology; D005260:Female; D005767:Gastrointestinal Diseases / Q000209:etiology; D006306:Health Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D010146:Pain / Q000209:etiology; D010465:Perception; D003668:Pressure Ulcer / Q000209:etiology; D011788:Quality of Life; D012893:Sleep Wake Disorders / Q000209:etiology; D012934:Social Isolation; D016135:Spinal Dysraphism / Q000150:complications* / Q000523:psychology; D011795:Surveys and Questionnaires; D014570:Urologic Diseases / Q000209:etiology; D055815:Young Adult
keywords: Adults; Impact of disability; Patient perceptions; Secondary conditions; Spina bifida