Incontinence in Individuals with Rett Syndrome: A Comparative Study

Journal of Developmental and Physical Disabilities

Volumn 24, Issue 3, 2012, Pages 287-300

  Giesbers, Sanne ^a   Didden, Robert ^a   Radstaake, Maartje ^a   Korzilius, Hubert ^a   von Gontard, Alexander ^b   Lang, Russell ^c   Smeets, Eric ^d   Curfs, Leopold M G ^d  

^a RADBOUD UNIVERSITY NIJMEGEN   (Netherlands)

^b SAARLAND UNIVERSITY   (Germany)

^c TEXAS STATE UNIVERSITY   (United States)

^d MAASTRICHT UNIVERSITY   (Netherlands)

Author keywords

Comparative study; Incontinence; Rett syndrome

Indexed keywords

EID: 84860673363     PISSN: 1056263X     EISSN: None     Source Type: Journal    
DOI: 10.1007/s10882-012-9271-7     Document Type: Article

References (44)

1. Averink, M., Melein, L., & Duker, P. C. (2005). Establishing diurnal bladder control with the response restriction method: extended study on its effectiveness. Research in Developmental Disabilities, 26, 143-151.
2. Azrin, N. H., & Foxx, R. M. (1971). A rapid method of toilet training in the institutionalized retarded. Journal of Applied Behavior Analysis, 4, 89-99.
3. Backes, M., Genç, B., Schreck, J., Doerfler, W., Lehmkuhl, G., & Von Gontard, A. (2000). Cognitive and behavioural profile of Fragile X boys: correlations to molecular data. American Journal of Medical Genetics, 95, 150-156.
4. Beetz, R., Von Gontard, A., & Lettgen, B. (1994). Anamnese-Fragebogen: Einnässen/Harninkontinenz und Erläuterungen zum Anamnese-Fragebogen. Bad Homburg: Enuresis Informationszentrum.
5. Borrie, M. J., & Davidson, H. A. (1992). Incontinence in institutions: costs and contributing factors. Canadian Medical Association Journal, 147, 322-328.
6. Bruschini, H., Faria, N., Garcez, E., & Srougi, M. (2003). Development of bladder control in mentally handicapped children. Official Journal of the Brazilian Society of Urology, 29, 455-458.
7. Cass, H., Reilly, S., Owen, L., Wisbeach, A., Weekes, L., Slonims, V., et al. (2003). Findings from a multidisciplinary clinical case series of females with Rett Syndrome. Developmental Medicine & Child Neurology, 45, 325-337.
8. Chang, S. S. Y., Ng, C. F., & Wong, S. N. (2002). Behavioural problems in children en parenting stress associated with primary nocturnal enuresis in Hong Kong. Acta Paediatrica, 91, 475-479.
9. Chase, J., Austin, P., Hoebeke, P., & McKenna, P. (2010). The management of dysfunctional voiding in children: a report from the standardisation committee of the International Children's Continence Society. Journal of Urology, 183, 1296-1302.
10. De Bruyne, E., van Hoecke, E., van Gompel, K., Verbeken, S., Baeyens, D., Hoebeke, P., et al. (2009). Problem behavior, parental stress and enuresis. The Journal of Urology, 182, 2015-2021.
11. Didden, R., Korzilius, H., Smeets, E., Green, V. A., Lang, R., Lancioni, G. E., et al. (2010). Communication in individuals with Rett Syndrome: an assessment of forms and functions. Journal of Developmental and Physical Disabilities, 22, 105-118.
12. Didden, R., Sikkema, S. P. E., Bosman, I. T. M., Duker, P. C., & Curfs, L. M. G. (2001). The use of a modified Azrin-Foxx toilet training procedure with individuals with Angelman Syndrome. Journal of Applied Research in Intellectual Disabilities, 14, 64-70.
13. Driver, D. S. (2007). Perineal Dermatitis in critical care patients. American Association of Critical-Care Nurses, 27, 42-46.
14. Dykens, E. M. (1995). Measuring behavioral phenotypes: provocations from the "new genetics". American Journal of Mental Retardation, 99, 522-532.
15. Foxman, B. (2003). Epidemiology of urinary tract infections: incidence, morbidity, and economic costs. Disease-a-Month, 49, 53-70.
16. Gotoh, M., Matsukawa, Y., Yoshikawa, Y., Funahashi, Y., Kato, M., & Hattori, R. (2009). Impact of urinary incontinence on the psychological burden of family members. Neurourology and Urodynamics, 28, 492-496.
17. Grey, I., & McClean, B. (2007). Toileting problems. In A. Carr, G. O'Reilly, P. Noonan Walsh, & J. McEvoy (Eds.), The handbook of intellectual disability and clinical psychology practice (pp. 422-445). London: Routledge.
18. Hagberg, B. (2002). Clinical manifestations and stages of Rett Syndrome. Mental Retardation and Developmental Disabilities Research Reviews, 8, 61-65.
19. Hodapp, R. M., & Dykens, E. M. (2001). Strengthening behavioral research on genetic mental retardation syndromes. American Journal on Mental Retardation, 106, 4-15.
20. Hodapp, R. M., & Dykens, E. M. (2005). Measuring behavior in genetic disorders of mental retardation. Mental Retardation and Developmental Disabilities Research Reviews, 11, 340-346.
21. Miner, P. B. (2004). Economic and personal impact of fecal and urinary incontinence. Gastroenterology, 126, 8-13.
22. Morison, M. J. (2000). Living with a young person who wets the bed: the families' experience. British Journal of Nursing, 9, 572-574.
23. Moss, S., & Patel, P. (1997). Dementia in older people with intellectual disability: symptoms of physical and mental illness, and levels of adaptive behaviour. Journal of Intellectual Disability Research, 41, 60-69.
24. Mount, R. H., Charman, T., Hastings, R. P., Reilly, S., & Cass, H. (2002). The Rett Syndrome Behaviour Questionnaire (RSBQ): refining the behavioural phenotype of Rett syndrome. Journal of Child Psychology and Psychiatry, 43, 1099-1110.
25. Mount, R. H., Hastings, R. P., Reilly, S., Cass, H., & Charman, T. (2003). Towards a behavioural phenotype of Rett Syndrome. American Journal on Mental Retardation, 108, 1-12.
26. Neul, J. L., Kaufmann, W. E., Glaze, D. G., Christodoulou, J., Clarke, A. J., Bahi-Buisson, N., et al. (2010). Rett Syndrome: revised diagnostic criteria and nomenclature. Annals of Neurology, 68, 944-949.
27. Nevéus, T., Von Gontard, A., Hoebeke, P., Hjälmås, K., Yeung, C. K., Vande Walle, J., et al. (2006). The standardisation of terminology of Lower Urinary Tract function in children and adolescents: Report from the Standardisation Committee of the International Children's Continence Society (ICCS). Journal of Urology, 176, 314-24.
28. Landefeld, C. S., Bowers, B. J., Feld, A. D., Hartmann, K. E., Hoffman, E., Ingber, M. J., et al. (2008). National institutes of health state-of-the-science conference statement: prevention of fecal and urinary incontinence in adults. Annals of Internal Medicine, 148, 449-460.
29. Laurvick, C., de Klerk, N., Bower, C., Christodoulou, J., Ravine, D., Ellaway, C., et al. (2006). Rett syndrome in Australia: a review of the epidemiology. Journal of Paediatrics, 148, 347-352.
30. Lavas, J., Slotte, A., Jochym-Nygren, M., van Doorn, J., & Witt-Engerström, I. (2006). Communication and eating proficiency in 125 females with Rett Syndrome: the Swedisch Rett Center survey. Disability & Rehabilitation, 28, 1267-1279.
31. Quander, R. C., Morris, M. C., Mendes de Leon, C. F., Bienias, J. L., & Evans, D. A. (2006). Association of fecal incontinence with physical disability and impaired cognitive function. American Journal of Gastroenterology, 101, 2588-2593.
32. Rasquin, A., Di Lorenzo, C., Forbes, D., Guiraldes, E., Hyams, J. S., Staiano, A., & Walker, L. S. (2006). Childhood functional gastrointestinal disorders: child/adolescent. Gastroenterology, 130, 1527-1537.
33. Saloviita, T. (2002). Dry bed training method in the elimination of bed wetting in two adults with autism and severe mental retardation. Cognitive Behaviour Therapy, 31, 135-140.
34. Scholte, E., van Duin, G., Dijkxhoorn, Y., Noens, I., & van Berckelaer-Onnes, I. (2008). Handleiding Vineland Screener 0-6 jaar. Leiden: PITS.
35. Sigafoos, J., Kagohara, D., van der Meer, L., Green, V. A., O'Reilly, M. F., Lancioni, G., et al. (2011). Communication assessment for individuals with Rett Syndrome: a systematic review. Research in Autism Spectrum Disorders, 5, 692-700.
36. Smeets, E., Schollen, E., Moog, U., Matthijs, G., Herbergs, J., Smeets, H., et al. (2003). Rett syndrome in adolescents and adult females: clinical and molecular genetic findings. American Journal of Medical Genetics, 122A, 227-233.
37. Sweet, R. L., & Gibbs, R. S. (2009). Infectious diseases of the female genital tract (5th ed.). Philadelphia: Wolters Kluwer Health/Lippincott Williams & Wilkins.
38. van Laecke, E., Hoebeke, P., Raes, A., & Vande Walle, J. (2010). Urinary incontinence in physically and/or intellectually disabled children: a multifactorial problem. Journal of Pediatric Urology, 6, 67.
39. van Laecke, E., Raes, A., Vande Walle, J., & Hoebeke, P. (2009). Adequate fluid intake, urinary incontinence, and physical and/or intellectual disability. Journal of Urology, 182, 2079-2084.
40. Von Gontard, A. (2010). Enkopresis: Erscheinungsformen-Diagnostik-Therapie (2nd ed.). Stuttgart: Kohlhammer Verlag.
41. Von Gontard, A., Didden, R., Sinnema, M., & Curfs, L. (2010). Urinary incontinence in persons with Prader-Willi Syndrome. British Journal of Urology International, 106, 1758-1762.
42. Von Gontard, A., Laufersweiler-Plass, C., Backes, M., Zerres, K., & Rudnik-Schöneborn, S. (2001). Enuresis and urinary incontinence in children and adolescents with spinal muscular atrophy. British Journal of Urology International, 88, 409-413.
43. Von Gontard, A., & Neveus, T. (2006). Management of disorders of bladder and bowel control in childhood. London: MacKeith.
44. Yang, P., Meng, N., & Chou, E. C. (2010). Voiding dysfunctions in children with mental retardation. Neurourology and Urodynamics, 29, 1272-1275.