Communication and eating proficiency in 125 females with Rett syndrome: The Swedish Rett center survey

Disability and Rehabilitation

Volumn 28, Issue 20, 2006, Pages 1267-1279

  Lavås, Jennie ^a   Slotte, Annika ^a   Jochym Nygren, Magdalena ^b   van Doorn, Jan ^a   Engerström, Ingegerd Witt ^b  

^a UMEÅ UNIVERSITY   (Sweden)

^b Swedish Rett Center   (Sweden)

Author keywords

Communication; Eating proficiency; Rett syndrome

Indexed keywords

ADULT; ARTICLE; BREATHING DISORDER; CAREGIVER; COMMUNICATION SKILL; COMPARATIVE STUDY; DESCRIPTIVE RESEARCH; EATING; EYE; FAMILY; FEMALE; FINGER; FOOD; GESTURE; HEALTH PRACTITIONER; HUMAN; INFORMATION PROCESSING; LANGUAGE ABILITY; MAJOR CLINICAL STUDY; MOTOR ACTIVITY; MOUTH DISEASE; NONVERBAL COMMUNICATION; PARENT; PRIORITY JOURNAL; QUALITATIVE RESEARCH; QUESTIONNAIRE; RETT SYNDROME; SOCIAL BEHAVIOR; SOCIAL INTERACTION; SWEDEN; TOOTH DISEASE;

ACTIVITIES OF DAILY LIVING; ADOLESCENT; ADULT; CHILD; CHILD, PRESCHOOL; COMMUNICATION; COMMUNICATION AIDS FOR DISABLED; EATING; FEMALE; HEALTH SURVEYS; HUMANS; MIDDLE AGED; ODDS RATIO; QUESTIONNAIRES; RESPIRATION DISORDERS; RETT SYNDROME; SWEDEN; TASK PERFORMANCE AND ANALYSIS;

EID: 33749577607     PISSN: 09638288     EISSN: 14645165     Source Type: Journal    
DOI: 10.1080/09638280600554868     Document Type: Article

References (26)

1. Hagberg, B. (1995) The Rett syndrome: Clinical peculiarities and biological mysteries Acta Paediatrica, 84, pp. 971-976.
2. Leonard, H and Silberstein, J and Falk, R and Houwink-Manville, I and Ellaway, C and Raffaele, L and Witt Engerström, I and Schanen, C. (2001) Occurrence of Rett syndrome in males Journal of Child Neurology, 16, pp. 333-338.
3. Kerr, A and Witt Engerström, I.(2001) The clinical background to the Rett disorder. In Rett disorder and the developing brain. (pp. 349-359). Oxford: Oxford University Press.
4. Amir, R and Van den Veyver, I and Wan, M and Tran, C and Francke, U and Zoghbi, H. (1999) Rett syndrome is caused by mutations in X-linked MECP2, encoding methyl-CpG-binding protein 2 Nature Genetics, 23, pp. 185-188.
5. Huppke, P and Laccone, F and Krämer, N and Engel, W and Hanefeld, F. (2000) Rett syndrome: Analysis of MECP2 and clinical characterization of 31 patients Human Molecular Genetics, 9, pp. 1369-1375.
6. Hagberg, B and Witt Engerström, I. (1986) Rett syndrome: A suggested staging system for describing impairment profile with increasing age towards adolescence American Journal of Medical Genetics, 24, pp. 1-20.
7. Witt Engerström, I. (1990) Rett syndrome in Sweden. Neurodevelopment-Disability-Pathophysiology Acta Paediatrica Scandinavica Supplement, 369, pp. 1-60.
8. National Institute of Neurological Disorders and Stroke [Internet]. (2004) Bethesda MD: National Institute of Health (US). Available from: http://www.ninds.nih.gov/disorders/rett/detail_rett.htm (cited 10 December 2004)
9. Diagnostic Criteria Working Group. (1988) Diagnostic criteria for Rett syndrome Annals of Neurology, 23, pp. 425-428.
10. Zappella, M and Gillberg, C and Ehlers, S. (1998) The preserved speech variant: A subgroup of the Rett complex: A clinical report of 30 cases Journal of Autism and Developmental Disorders, 28, pp. 519-526.
11. Budden, S and Meek, M and Henighan, C. (1990) Communication and oral-motor function in Rett syndrome Developmental Medicine and Child Neurology, 32, pp. 51-55.
12. Uchino, J and Suzuki, M and Hoshino, K and Nomura, Y and Segawa, M. (2001) Development of language in Rett syndrome Brain and Development, 23(Suppl 1), pp. S233-S235.
13. Leonard, H and Fyfe, S and Leonard, S and Msall, M. (2001) Functional status, medical impairments, and rehabilitation resources in 84 females with Rett syndrome: A snapshot across the world from the parental perspective Disability and Rehabilitation, 23, pp. 107-117.
14. Morton, R and Bonas, R and Minford, J and Kerr, A and Ellis, R. (1997) Feeding ability in Rett syndrome Developmental Medicine and Child Neurology, 39, pp. 331-335.
15. Morton, R and Bonas, R and Minford, J and Tarrant, S and Ellis, R. (1997) Respiration patterns during feeding in Rett syndrome Developmental Medicine and Child Neurology, 39, pp. 607-613.
16. Reilly, S and Cass, H. (2001) Growth and nutrition in Rett syndrome Disability and Rehabilitation, 23, pp. 118-128.
17. Motil, K and Schultz, R and Browning, K and Trautwein, L and Glaze, D. (1999) Oropharyngeal dysfunction and gastroesophageal dysmotility are present in girls and women with Rett syndrome Journal of Gastroenterology and Nutrition, 29, pp. 31-37.
18. Thommessen, M and Kase, B and Heiberg, A. (1992) Growth and nutrition in 10 girls with Rett syndrome Acta Paediatrica, 81, pp. 686-690.
19. Magalhñes, M and Kawamura, J and Araújo, L. (2002) General and oral characteristics in Rett syndrome Special Care in Dentistry, 22, pp. 147-150.
20. Larsson, G.(2003) General development in females with Rett syndrome, focusing on abilities, deformities and management: The Swedish Rett Center Survey [Masters thesis]. In. Umeå Available from: Dept of Community Medicine and Rehabilitation, Umeå University, Sweden
21. Granlund, M and Olsson, C. (1993) Kommunicera mera 3rd ed.. Stockholm: Stiftelsen ALA.
22. Coleman, M and Brubaker, J and Hunter, K and Smith, G. (1988) Rett syndrome: A survey of North American patients Journal of Mental Deficiency Research, 32, pp. 117-124.
23. Larsson, G and Witt Engerström, I. (2001) Gross motor ability in Rett syndrome - The power of expectation, motivation and planning Brain and Development, 23(Suppl 1), pp. S77-S81.
24. Cochavit, E.(2001) Speechless yet communicative: Revealing the person behind the disability of Rett syndrome through clinical research on songs in music therapy. In Music therapy in Europe. (pp. 113-128). Roma: ISMEZ/Onlus.
25. Budden, S. (1995) Management of Rett syndrome: A ten year experience Neuropediatrics, 26, pp. 75-77.
26. Heister Trygg, B and Andersson, I and Hardenstedt, L and Sigurd Pilesjö, M.(1998) Alternativ och kompletterande kommunikation (AKK) i teori och praktik. Malmö Tryckfolket.