The conductive environment enhances gross motor function of girls with Rett syndrome. A pilot study

Lotan, Meir; Schenker, Rony; Wine, Judy; Downs, Jenny

doi:10.3109/17518423.2011.629374

Cited by 29 publications

(29 citation statements)

References 26 publications

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“…This program is also known as more demanding and more intensive than conventional educational programs. The participants in the above mentioned study showed improvements in functional abilities when measured with the Australian Rett scale [16]. In contrast, to those findings a stable slightly deteriorating trend was observed in children with RTT which were treated within conventional programs [37].…”

Section: Functional Abilitycontrasting

confidence: 44%

“…Today we know that individuals with RTT are able to communicate once given the appropriate tools [30] such as body signals, voices, picture symbols, communication boards, or different gestures [19,25]. An intensive communication program which was implemented by the domestic environment and was supported by the educational facility has led to significant improvement in communication abilities in 3 girls with RTT over a two years period [16].…”

Section: Communication Abilitiesmentioning

confidence: 99%

“…Individuals with RTT not receiving an appropriate intensive intervention might regress [15], whereas a more intensive approach might preserve and even improve their overall abilities [2,16].…”

Section: Introductionmentioning

confidence: 99%

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The Time is Now: The Need for an Intensive, Appropriate Individual Intervention for Individuals with Rett Syndrome

2015

J Syndr

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Rett syndrome (RTT) is a complex neurological disorder caused by an affected MECP-2 gene, primarily affecting females. In 2007, a reversal of typical clinical characteristics of MECP2 mice was performed successfully. The results suggest that similar reversals might be achieved in human patients with RTT in a foreseeable future. Nonetheless, this future cure will not be able to reverse already acquired disabilities and limitations, such as osteoporosis, muscle degeneration, orthopedic contractures, and functional loss attributed to a long sedentary life typical for this group of clients. Evidence suggests that many aspects of clients' well-being and functional status depend on the therapeutic interventions they receive. Findings from diverse, intensive therapeutic programs implemented both with mice and individuals with RTT imply that such programs can enhance longevity, communications, learning, well-being, functional ability, and other life aspects characterizing this syndrome.The authors therefore urge that individuals with this syndrome should be treated with an intensive intervention programs from childhood to maintain their optimal functional performance and medical condition so that maximal gains will be achievable for those individuals with the availability of the forthcoming genetic cure.

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Section: Functional Abilitycontrasting

confidence: 44%

Section: Communication Abilitiesmentioning

confidence: 99%

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The Time is Now: The Need for an Intensive, Appropriate Individual Intervention for Individuals with Rett Syndrome

2015

J Syndr

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“…Health and disability supports and services for Rett syndrome may include developmental therapies (e.g., gross motor function [Lotan et al, 2012]) and medical management of comorbidities (e.g., gastrointestinal and nutritional problems [Baikie et al, 2014]), although the level of evidence for these interventions is generally low. More empirical research is needed to determine which treatments, services and programs are most effective in improving outcomes for those affected by Rett syndrome.…”

Section: Introductionmentioning

confidence: 99%

Conceptualizing a quality of life framework for girls with Rett syndrome using qualitative methods

Epstein

Leonard

Davis

et al. 2015

American J of Med Genetics Pt A

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Rett syndrome is a neurodevelopmental disorder mainly affecting females and associated with a mutation on the MECP2 gene. There has been no systematic evaluation of the domains of quality of life (QOL) in Rett syndrome. The aims of this study were to explore QOL in school-aged children with Rett syndrome and compare domains with those identified in other available QOL scales. The sample comprised 21 families registered with the Australian Rett Syndrome Database whose daughter with Rett syndrome was aged 6-18 years. Semi-structured telephone interviews were conducted with each parent caregiver (19 mothers, 2 fathers) to investigate aspects of their daughter's life that were satisfying or challenging to her. Qualitative thematic analysis using a grounded theory framework was conducted, and emerging domains compared with those in two generic and three disability parent-report child QOL measures. Ten domains were identified: physical health, body pain, and discomfort, behavioral and emotional well-being, communication skills, movement and mobility, social connectedness, variety of activities, provision of targeted services, stability of daily routines, and the natural environment. The two latter domains were newly identified and each domain contained elements not represented in the comparison measures. Our data articulated important aspects of life beyond the genetic diagnosis. Existing QOL scales for children in the general population or with other disabilities did not capture the QOL of children with Rett syndrome. Our findings support the construction of a new parent-report measure to enable measurement of QOL in this group.

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“…22 Grasping skills did not improve in three preschool girls with Rett syndrome following 15 months of conductive education characterised by strong support for functional use of hands, although at this young age, their hand function skills could still have been regressing. 47 Whilst there is some evidence that active therapy programs can contribute to improved functional abilities, each of these studies has been conducted with extremely small sample sizes and without a control group. There is a desperate need for research to provide higher level evidence of what strategies are useful for those with Rett syndrome.…”

Section: Management Of Hand Stereotypies and Hand Functionmentioning

confidence: 99%

Perspectives on hand function in girls and women with Rett syndrome

Downs¹,

Parkinson²,

Ranelli³

et al. 2013

Developmental Neurorehabilitation

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The conductive environment enhances gross motor function of girls with Rett syndrome. A pilot study

Abstract: Replication of this study with more subjects is justified as is comparison with other educational methods. A home intervention programme should be constructed to prevent decline of skills over the summer vacation.

Cited by 29 publications

References 26 publications

The Time is Now: The Need for an Intensive, Appropriate Individual Intervention for Individuals with Rett Syndrome

The Time is Now: The Need for an Intensive, Appropriate Individual Intervention for Individuals with Rett Syndrome

Conceptualizing a quality of life framework for girls with Rett syndrome using qualitative methods

Perspectives on hand function in girls and women with Rett syndrome

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