Perception of secondary conditions in adults with spina bifida and impact on daily life

Disability and Health Journal

Volumn 8, Issue 4, 2015, Pages 492-498

  Wagner, Robert ^a   Linroth, Ronna ^a   Gangl, Candice ^a   Mitchell, Nancy ^a   Hall, Michelle ^a   Cady, Rhonda ^a   Christenson, Matthew ^b  

^a GILLETTE CHILDREN'S SPECIALTY HEALTHCARE   (United States)

^b Professional Data Analysts Inc   (United States)

Author keywords

Adults; Impact of disability; Patient perceptions; Secondary conditions; Spina bifida

Indexed keywords

ADULT; AGE DISTRIBUTION; AGED; ARTICLE; ATTITUDE TO ILLNESS; DAILY LIFE ACTIVITY; DECUBITUS; DEPRESSION; EXECUTIVE FUNCTION; FECES INCONTINENCE; FEMALE; HEALTH SURVEY; HOSPITALIZATION; HUMAN; INFORMATION PROCESSING; MAJOR CLINICAL STUDY; MALE; MEDICAL RECORD; NEURAL TUBE; NEUROGENIC BOWEL; OUTCOME ASSESSMENT; OUTPATIENT DEPARTMENT; PAIN ASSESSMENT; PATIENT CARE; PRIORITY JOURNAL; SELF CONCEPT; SEX DIFFERENCE; SLEEP DISORDER; SOCIAL PARTICIPATION; SPINAL DYSRAPHISM; URINARY TRACT INFECTION; WALKING DIFFICULTY; YOUNG ADULT; ADOLESCENT; COMPLICATION; DISABLED PERSON; GASTROINTESTINAL DISEASES; MIDDLE AGED; PAIN; PERCEPTION; PRESSURE ULCER; PSYCHOLOGY; QUALITY OF LIFE; QUESTIONNAIRE; SLEEP WAKE DISORDERS; SOCIAL ISOLATION; UROLOGIC DISEASES;

ACTIVITIES OF DAILY LIVING; ADOLESCENT; ADULT; AGED; DEPRESSION; DISABLED PERSONS; FEMALE; GASTROINTESTINAL DISEASES; HEALTH SURVEYS; HUMANS; MALE; MIDDLE AGED; PAIN; PERCEPTION; PRESSURE ULCER; QUALITY OF LIFE; SLEEP WAKE DISORDERS; SOCIAL ISOLATION; SPINAL DYSRAPHISM; SURVEYS AND QUESTIONNAIRES; UROLOGIC DISEASES; YOUNG ADULT;

EID: 84946171858     PISSN: 19366574     EISSN: 18767583     Source Type: Journal    
DOI: 10.1016/j.dhjo.2015.03.012     Document Type: Article

References (31)

1. G.S. Liptak What is Spina Bifida? 2014 Spina Bifida Association Accessed 11/14 http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8277225/k.5A79/What-is-Spina-Bifida.htm
2. S.E. Parker, M.M. Yazdy, A.A. Mitchell, L.A. Demmer, and M.M. Werler A description of spina bifida cases and co-occurring malformations, 1976-2011 Am J Med Genet A 164 2 2014 432 440
3. J.M. Fletcher, and T.J. Brei Introduction: spina bifida - A multidisciplinary perspective Dev Disabil Res Rev 16 1 2010 1 5
4. National Birth Defects Prevention Network Selected birth defects data from population-based birth defects surveillance programs in the United States, 2003-2007 Birth Defects Res A Clin Mol Teratol 88 12 2010 1062 1174
5. S.E. Parker, C.T. Mai, M.A. Canfield, and et al. Updated national birth prevalence estimates for selected birth defects in the United States, 2004-2006 Birth Defects Res A Clin Mol Teratol 88 12 2010 1008 1016
6. R.M. Bowman, D.G. McLone, J.A. Grant, T. Tomita, and J.A. Ito Spina bifida outcome: a 25-year prospective Pediatr Neurosurg 34 3 2001 114 120
7. J. Hough Disability and health. A national public health agenda R.J. Simeonsson, L.N. McDevitt, Issues in Disability and Health: The Role of Secondary Conditions and Quality of Life 1999 University of North Carolina Press Chapel Hill, NC 161 203
8. G.S. Liptak, K. Garver, and N.P. Dosa Spina bifida grown up J Dev Behav Pediatr 34 3 2013 206 215
9. Overview of the National (Nationwide) Inpatient Sample (NIS) HCUP - Healthcare Cost and Utilization Project Web Site 2014 Updated 2014. Accessed 14.11.14 http://www.hcup-us.ahrq.gov/nisoverview.jsp
10. B.E. Dicianno, and R. Wilson Hospitalizations of adults with spina bifida and congenital spinal cord anomalies Arch Phys Med Rehabil 91 4 2010 529 535
11. J.W. Roach, B.F. Short, and H.M. Saltzman Adult consequences of spina bifida: a cohort study Clin Orthop Relat Res 469 5 2011 1246 1252
12. T.S. Webb Optimizing health care for adults with spina bifida Dev Disabil Res Rev 16 1 2010 76 81
13. A.K. Heffelfinger, J.I. Koop, P.S. Fastenau, and et al. The relationship of neuropsychological functioning to adaptation outcome in adolescents with spina bifida J Int Neuropsychol Soc 14 5 2008 793 804
14. R. Elliott Executive functions and their disorders: Imaging in clinical neuroscience Br Med Bull 65 1 2003 49 59
15. World Health Organization Towards a Common Language for Functioning, Disability and Health (ICF) [online] 2002 Available http://www.who.int/entity/classifications/icf/training/
16. Gillette Lifetime Specialty Healthcare for Older Teens and Adults 2014 Gillette Children's Specialty Healthcare Accessed 2/5 http://www.gillettechildrens.org/conditions-and-care/gillette-lifetime-specialty-healthcare-for-older-teens-and-adults/#patientsandconditionswetreat
17. Why Gillette? 2014 Gillette Children's Specialty Healthcare Accessed 2/5 http://www.gillettechildrens.org/why-gillette/
18. J.H. Piatt Treatment of myelomeningocele: a review of outcomes and continuing neurosurgical considerations among adults J Neurosurg Pediatr 6 6 2010 515 525
19. P. Oakeshott, G.M. Hunt, A. Poulton, and F. Reid Expectation of life and unexpected death in open spina bifida: a 40-year complete, non-selective, longitudinal cohort study Dev Med Child Neurol 52 8 2010 749 753
20. J.M. Zukerman, K.A. Devine, and G.N. Holmbeck Adolescent predictors of emerging adulthood milestones in youth with spina bifida J Pediatr Psychol 36 3 2011 265 276
21. I. McDowell Measuring Health: A Guide to Rating Scales and Questionnaires 3rd ed. 2006 Oxford University Press Oxford; New York
22. V.L. Shavers, C.F. Lynch, and L.F. Burmeister Racial differences in factors that influence the willingness to participate in medical research studies Ann Epidemiol 12 4 2002 248 256
23. L. Werhagen, H. Gabrielsson, N. Westgren, and K. Borg Medical complication in adults with spina bifida Clin Neurol Neurosurg 115 8 2013 1226 1229
24. S.L. Kinsman, and M.C. Doehring The cost of preventable conditions in adults with spina bifida Eur J Pediatr Surg 6 S 1 1996 17 20
25. D. Mahmood, B. Dicianno, and M. Bellin Self-management, preventable conditions and assessment of care among young adults with myelomeningocele Child Care Health Dev 37 6 2011 861 865
26. M. Verhoef, H.A. Barf, M.W. Post, F.W. van Asbeck, R.H. Gooskens, and A.J. Prevo Secondary impairments in young adults with spina bifida Dev Med Child Neurol 46 6 2004 420 427
27. M. Mitra, N. Wilber, D. Allen, and D.K. Walker Prevalence and correlates of depression as a secondary condition among adults with disabilities Am J Orthop 75 1 2005 76 85
28. M.H. Bellin, B.E. Dicianno, P. Osteen, and et al. Family satisfaction, pain, and quality-of-life in emerging adults with spina bifida: a longitudinal analysis Am J Phys Med Rehabil 92 8 2013 641 655
29. M. Ridosh, P. Braun, G. Roux, M. Bellin, and K. Sawin Transition in young adults with spina bifida: a qualitative study Child Care Health Dev 37 6 2011 866 874
30. C. Ipsen Health, secondary conditions, and employment outcomes for adults with disabilities J Disabil Policy Stud 17 2 2006 77 87
31. About National Spina Bifida Patient Registry 2015 NCBDDD | CDC http://www.cdc.gov/ncbddd/spinabifida/nsbprregistry.html Accessed 19.02.15