Gaps and Opportunities: An Agenda for Further Research, Services, and Program Development in Spina Bifida

Pediatric Clinics of North America

Volumn 57, Issue 4, 2010, Pages 1041-1057

  Sawin, Kathleen J ^a   Betz, Cecily L ^b   Linroth, Ronna ^c  

^a UNIVERSITY OF WISCONSIN MILWAUKEE   (United States)

^b UNIVERSITY OF SOUTHERN CALIFORNIA   (United States)

^c Adult Outpatient Services   (United States)

Author keywords

Program development; Research; Services; Spina bifida

Indexed keywords

ACADEMIC ACHIEVEMENT; CHILD BEHAVIOR; CHILD HEALTH CARE; EDUCATION; EMPLOYMENT; HUMAN; HUMAN RELATION; INCOME; INTERNET; LIFE HISTORY; MEDICAL RESEARCH; PATIENT MOBILITY; PROGRAM DEVELOPMENT; QUALITY OF LIFE; REVIEW; SELF CARE; SELF CONCEPT; SOCIAL ADAPTATION; SOCIAL INTERACTION; SPINA BIFIDA; HEALTH CARE QUALITY; SPINAL DYSRAPHISM; TRENDS; UNITED STATES;

BIOMEDICAL RESEARCH; HUMANS; PROGRAM DEVELOPMENT; QUALITY OF HEALTH CARE; SPINAL DYSRAPHISM; UNITED STATES;

EID: 77957171924     PISSN: 00313955     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.pcl.2010.07.020     Document Type: Review

References (62)

1. Evidence-based practice in spina bifida: developing a research agenda 2003, Spina Bifida Association, Washington, DC. G. Liptak (Ed.).
2. First World Congress on Spina Bifida Research and Care Proceedings 2009, Spina Bifida Association, Washington, DC. G. Liptak (Ed.).
3. Fletcher J.M., Brei T.J. Introduction: spina bifida-a multidisciplinary perspective. Dev Disabil Res Rev 2010, 16(1):1-5.
4. Guidelines for spina bifida health care services throughout the lifespan 2006, Spina Bifida Association, Washington, DC. M. Merkens (Ed.).
5. World Heath Organization International classification of functioning, disability, and health 2001, World Health Organization, Geneva (Switzerland).
6. Greenley R.N. A family intervention to enhance involvement in condition management of youth with spina bifida: a pilot study. Scientific abstracts: the future is now 2009, First World Congress on Spina Bifida Research and Care, Orlando (FL).
7. Holmbeck G.N., Greenley R.N., Coakley R.M., et al. Family functioning in children and adolescents with spina bifida: an evidence-based review of research and interventions. J Dev Behav Pediatr 2006, 27(3):249-277.
8. Dennis M., Landry S.H., Barnes M., et al. A model of neurocognitive function in spina bifida over the life span. J Int Neuropsychol Soc 2006, 12(2):285-296.
9. Sellet S. Creating tele learning communities and social networks or teens and young adults with spina bifida. Scientific Abstracts: The Future is Now. First World Congress on Spina Bifida Research and Care 2009, Spina Bifida Association, Orlando (FL).
10. Rauen K. Mentoring projects for teens with spina bifida result in improved socialization skills, independence and community participation. Scientific Abstracts. The Future is Now. First World Congress on Spina Bifida Research and Care 2009, Spina Bifida Association, Orlando (FL).
11. Aldana P.R., Ragheb J., Sevald J., et al. Cerebrospinal fluid shunt complications after urological procedures in children with myelodysplasia. Neurosurgery 2002, 50(2):313-318.
12. Greenley R.N., Coakley R.M., Holmbeck G.N., et al. Condition-related knowledge among children with spina bifida: longitudinal changes and predictors. J Pediatr Psychol 2006, 31(8):828-839.
13. Hetherington R., Dennis M., Barnes M., et al. Functional outcome in young adults with spina bifida and hydrocephalus. Childs Nerv Syst 2006, 22(2):117-124.
14. McDonnell G.V., McCann J.P. Why do adults with spina bifida and hydrocephalus die? A clinic-based study. Eur J Pediatr Surg 2000, 1:31-32.
15. Oakeshott P., Hunt G.M. Long-term outcome in open spina bifida. Br J Gen Pract 2003, 53(493):632-636.
16. Hunt G., Oakeshott P., Kerry S. Link between the CSF shunt and achievement in adults with spina bifida. J Neurol Neurosurg Psychiatry 1999, 67(5):591-595.
17. Blaymore Bier J.A., Liebling J.A., Morales Y., et al. Parents' and pediatricians' views of individuals with meningomyelocele. Clin Pediatr (Phila) 1996, 35(3):113-117.
18. Vachha B., Adams R.C. Memory and selective learning in children with spina bifida-myelomeningocele and shunted hydrocephalus: a preliminary study. Cerebrospinal Fluid Res 2005, 2:10.
19. Vermaes I.P., Janssens J.M., Bosman A.M., et al. Parents' psychological adjustment in families of children with spina bifida: a meta-analysis. BMC Pediatr 2005, 5:32.
20. Vachha B., Adams R. Influence of family environment on language outcomes in children with myelomeningocele. Child Care Health Dev 2005, 31(5):589-596.
21. Holmbeck G.N., Belvedere M.C., Christensen M., et al. Assessment of adherence with multiple informants in pre-adolescents with spina bifida: initial development of a multidimensional, multitask parent-report questionnaire. J Pers Assess 1998, 70(3):427-440.
22. Greenley R.N. Health professional expectations for self-care skill development in youth with spina bifida. Pediatr Nurs 2010, 36(2):98-102.
23. Sawin K.J., Buran C.F., Brei T.J., et al. Correlates of functional status, self-management, and developmental competence outcomes in adolescents with spina bifida. SCI Nurs 2003, 20(2):72-85.
24. Heffelfinger A.K., Koop J.I., Fastenau P.S., et al. The relationship of neuropsychological functioning to adaptation outcome in adolescents with spina bifida. J Int Neuropsychol Soc 2008, 14(5):793-804.
25. Sawin K.J., Brei T.J. Enhancing independence 2010, World Congress, Next Steps, International Federation of Spina Bifida and Hydrocephalus, Dublin (Ireland).
26. Sawin K.J., Bellin M.H. Quality of life in individuals with spina bifida: a research update. Dev Disabil Res Rev 2010, 16:47-59.
27. Moore C., Kogan B.A., Parekh A. Impact of urinary incontinence on self-concept in children with spina bifida. J Urol 2004, 171(4):1659-1662.
28. Sawin K.J., Brei T.J., Buran C.F., et al. Factors associated with quality of life in adolescents with spina bifida. J Holist Nurs 2002, 20(3):279-304.
29. Leger R.R. Severity of illness, functional status, and HRQOL in youth with spina bifida. including commentary by Zimmerman B. Rehabil Nurs 2005, 30(5):180-188.
30. Parekh A.D., Trusler L.A., Pietsch J.B., et al. Prospective, longitudinal evaluation of health related quality of life in the pediatric spina bifida population undergoing reconstructive urological surgery. J Urol 2006, 176(4 Pt 2):1878-1882.
31. Lemelle J.L., Guillemin F., Aubert D., et al. Quality of life and continence in patients with spina bifida. Qual Life Res 2006, 15(9):1481-1492.
32. Brand J., Sawin K.J., Koo H., et al. Urologic outcomes and quality of life in children with a neurogenic bladder: a pilot study. Scientific Abstracts: The Future is Now. First World Congress on Spina Bifida Research and Care 2009, Spina Bifida Association, Orlando (FL).
33. Borzyskowski M., Cox A., Edwards M., et al. Neuropathic bladder and intermittent catheterization: social and psychological impact on families. Dev Med Child Neurol 2004, 46(3):160-167.
34. Edwards M., Borzyskowski M., Cox A., et al. Neuropathic bladder and intermittent catheterization: social and psychological impact on children and adolescents. Dev Med Child Neurol 2004, 46(3):168-177.
35. Schoenmakers M.A., Uiterwaal C.S., Gulmans V.A., et al. Determinants of functional independence and quality of life in children with spina bifida. Clin Rehabil 2005, 19(6):677-685.
36. Kirpalani H.M., Parkin P.C., Willan A.R., et al. Quality of life in spina bifida: importance of parental hope. Arch Dis Child 2000, 83(4):293-297.
37. Singh D.K. Families of children with spina bifida: a review. J Dev Phys Disabil 2003, 15:37-55.
38. Holmbeck G.N., Devine K.A. Psychosocial and family functioning in spina bifida. Dev Disabil Res Rev 2010, 16:40-46.
39. Kazak A.E., Simms S., Barakat L., et al. Surviving Cancer Competently Intervention Program (SCCIP): a cognitive-behavioral and family therapy intervention for adolescent survivors of childhood cancer and their families. Fam Process 1999, 38(2):175-191.
40. Levitt M., Levitt J., Bustos G., et al. Patterns of social support in the middle childhood to early adolescent transition: implications for adjustment. Soc Dev 2005, 14(3):398-420.
41. Brei T.J., Sawin K.J., Webb T., et al. Testing a model predicting health related quality of life in a multi-site study of adolescents & young adults with spina bifida. Scientific abstracts: the future is now. First World Congress on Spina Bifida Research and Care 2009, Spina Bifida Association, Orlando (FL).
42. Bellin M.H., Zabel T.A., Dicianno B., et al. Correlates of depressive and anxiety symptoms in young adults with spina bifida. J Pediatr Psychol 2010, 35(7):778-789.
43. Bellin M.H., Bentley K.J., Sawin K.J. Factors associated with the psychological and behavioral adjustment of siblings of youths with spina bifida. Fam Syst Health 2009, 27(1):1-15.
44. Bellin M.H., Kovacs P.J., Sawin K.J. Risk and protective influences in the lives of siblings of youths with spina bifida. Health Soc Work 2008, 33(3):199-209.
45. Fletcher J.M., Copeland K., Frederick J.A., et al. Spinal lesion level in spina bifida: a source of neural and cognitive heterogeneity. J Neurosurg 2005, 102(Suppl 3):268-279.
46. Verhoef M., Barf H.A., Post M.W., et al. Secondary impairments in young adults with spina bifida. Dev Med Child Neurol 2004, 46(6):420-427.
47. Zabel T.A., Ries J., Mahone E.M., et al. The Kennedy Independence Scales-Spina Bifida version: a parent report rating scale of adaptive functioning in adolescents with spina bifida. Eur J Pediatr Surg 2003, 13(Suppl 1):S37-S39.
48. Betz C.L., Redcay G., Tan S. Self-reported health care needs of transition-age youth: a pilot study. Issues Compr Pediatr Nurs 2003, 26(3):159-191.
49. Johnson K.L., Dudgeon B., Kuehn C., et al. Assistive technology use among adolescents and young adults with spina bifida. Am J Public Health 2007, 97(2):330-336.
50. Jaffari-Bimmel N., Juffer F., van Ijzendoom M., et al. Social development from infancy to adolescence: longitudinal and concurrent factors in an adoption sample. Dev Psychol 2006, 46(6):1143-1153.
51. Bronstein P., Ginsburg G., Herrera I. Parental predictors of motivational orientation in early adolescence: a longitudinal study. J Youth Adolesc 2005, 34(6):559-575.
52. van Mechelen M.C., Verhoef M., van Asbeck F.W., et al. Work participation among young adults with spina bifida in the Netherlands. Dev Med Child Neurol 2008, 50(10):772-777.
53. Dicianno B.E., Gaines A., Collins D.M., et al. Mobility, assistive technology use, and social integration among adults with spina bifida. Am J Phys Med Rehabil 2009, 88(7):533-541.
54. Dicianno B.E., Bellin M.H., Zabel A.T. Spina bifida and mobility in the transition years. Am J Phys Med Rehabil 2009, 88(12):1002-1006.
55. Buran C.F., McDaniel A.M., Brei T.J. Needs assessment in a spina bifida program: a comparison of the perceptions by adolescents with spina bifida and their parents. Clin Nurse Spec 2002, 16(5):256-262.
56. Barf H.A., Post M.W., Verhoef M., et al. Restrictions in social participation of young adults with spina bifida. Disabil Rehabil 2009, 31(11):921-927.
57. Reiss J., Gibson R., Walker L. Health care transition: youth, family, and provider perspectives. Pediatrics 2005, 115:112-120.
58. Heffelfinger A., Koop J. A description of the neuropsychological assessment and diagnostic impressions in the P.I.N.T. clinic after the first five years. Clin Neuropsychol 2009, 23:51-76.
59. Heffelfinger A., Craft S., White D., et al. Visual attention in preschool children prenatally exposed to cocaine: implications for behavioral regulation. J Int Neuropsychol Soc 2002, 8:12-21.
60. Office of Special Education Programs 24th Annual Report to Congress on the Implementation of IDEA 2001, US Government Printing Office, Washington, DC.
61. National Information Center for Children and Youth with Disabilities Transition summary: vocational assessment: a guide for parents and professionals 1990, National Information Center for Children and Youth with Disabilities, Washington, DC
62. Bandura A. Social learning theory 1977, Prentice-Hall, Englewood Cliffs (NJ).