Communication intervention in Rett syndrome: a survey of speech language pathologists in Swedish health services

Wandin, Helena; Lindberg, Per; Sonnander, Karin

doi:10.3109/09638288.2014.962109

Cited by 26 publications

(23 citation statements)

References 62 publications

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“…For example, a survey study of individuals with ALS in Germany found a rejection rate of 48% by health insurance institutions concerning communication devices such as eye-gaze controlled computer [32]. A survey in the Netherlands on families with a child with Rett syndrome [33] and a study of speech-language therapists in Sweden who support individuals with Rett syndrome [34] show that not all of these individuals have an opportunity to try eye-gaze technology to see if they may benefit from its use.…”

Section: Discussionmentioning

confidence: 99%

Usability of Eye-Gaze Controlled Computers in Sweden: A Total Population Survey

Hemmingsson

Borgestig

2020

IJERPH

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Eye-gaze technology allows individuals with severe physical disabilities and complex communication needs to control a computer or other devices with eye-gaze, thereby enabling them to communicate and participate in society. To date, most research on eye-gaze controlled devices related to persons with disabilities has focused on a single diagnosis in either adults or children and has included only a few participants. This current study utilized a total population survey to identify the prevalence and perceived usability of eye-gaze technology among adults and children in Sweden. Participants were 171 eye-gaze technology users with severe physical and communication impairments, ranging between 4 and 81 years. Cerebral palsy was the most common diagnosis. Daily usage was found in 63%, while 33% had weekly, and 4% had less frequent usage. Adults, compared with children, reported using their computers more frequently (65%/38%; p < 0.01), and for the activities they needed to perform (59%/31%; p < 0.01) and were more satisfied with services, indicating that service providers should prioritize and develop more effective services for children and their parents.

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Section: Discussionmentioning

confidence: 99%

Usability of Eye-Gaze Controlled Computers in Sweden: A Total Population Survey

Hemmingsson

Borgestig

2020

IJERPH

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“…Without the ability to speak or to adeptly use their hands for pointing, typing, or sign language, expressive language is difficult. Evolving strategies in teaching and augmentative communication technologies have resulted in fresh perspectives and attitudes about what individuals with RTT can achieve [16]. …”

Section: Genetics and Clinical Features Of Rttmentioning

confidence: 99%

Rett Syndrome: Crossing the Threshold to Clinical Translation

Katz

Bird

Coenraads

et al. 2016

Trends in Neurosciences

138

141

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Lying at the intersection between neurobiology and epigenetics, Rett syndrome (RTT) has garnered intense interest in recent years, not only from a broad range of academic scientists, but also from the pharmaceutical and biotechnology industries. In addition to the critical need for treatments for this devastating disorder, optimism for developing RTT treatments derives from a unique convergence of factors, including a known monogenic cause, reversibility of symptoms in preclinical models, a strong clinical research infrastructure highlighted by an NIH-funded natural history study and well-established clinics with significant patient populations. Here, we review recent advances in understanding the biology of RTT, particularly promising preclinical findings, lessons from past clinical trials, and critical elements of trial design for rare disorders.

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“…New technologies applied to communication therapies and rehabilitation (e.g. eye tracking-based devices; [28]) are also effective and promote better development and QoL.…”

Section: Rtt Diagnosis Clinical Features and Managementmentioning

confidence: 99%

“…The latter include aggressive nutritional management, with particular attention to adequate caloric intake and calcium and vitamin D metabolism, prevention of gastrointestinal and orthopedic complications, as well as the entire range of rehabilitation therapies. Some of these RTT-specific approaches have been formalized as management guidelines [24,28–32], with others still under development.…”

Section: Rtt Diagnosis Clinical Features and Managementmentioning

confidence: 99%

Neurobiologically-based treatments in Rett syndrome: opportunities and challenges

Kaufmann

Stallworth

Everman

et al. 2016

Expert Opinion on Orphan Drugs

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Introduction: Rett syndrome (RTT) is an X-linked neurodevelopmental disorder that primarily affects females, typically resulting in a period of developmental regression in early childhood followed by stabilization and severe chronic cognitive, behavioral, and physical disability. No known treatment exists beyond symptomatic management, and while insights into the genetic cause, pathophysiology, neurobiology, and natural history of RTT have been gained, many challenges remain. Areas covered: Based on a comprehensive survey of the primary literature on RTT, this article describes and comments upon the general and unique features of the disorder, genetic and neurobiological bases of drug development, and the history of clinical trials in RTT, with an emphasis on drug trial design, outcome measures, and implementation. Expert opinion: Neurobiologically based drug trials are the ultimate goal in RTT, and due to the complexity and global nature of the disorder, drugs targeting both general mechanisms (e.g., growth factors) and specific systems (e.g., glutamate modulators) could be effective. Trial design should optimize data on safety and efficacy, but selection of outcome measures with adequate measurement properties, as well as innovative strategies, such as those enhancing synaptic plasticity and use of biomarkers, are essential for progress in RTT and other neurodevelopmental disorders.

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Communication intervention in Rett syndrome: a survey of speech language pathologists in Swedish health services

Cited by 26 publications

References 62 publications

Usability of Eye-Gaze Controlled Computers in Sweden: A Total Population Survey

Usability of Eye-Gaze Controlled Computers in Sweden: A Total Population Survey

Rett Syndrome: Crossing the Threshold to Clinical Translation

Neurobiologically-based treatments in Rett syndrome: opportunities and challenges

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