Gross Motor, Physical Activity and Musculoskeletal Disorder Evaluation Tools for Rett Syndrome: A Systematic Review

Romano, Alberto; Caprì, Tindara; Semino, Martina; Bizzego, Ilaria; Rosa, Gabriella Di; Fabio, Rosa Angela

doi:10.1080/17518423.2019.1680761

Cited by 19 publications

(16 citation statements)

References 108 publications

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“…The RARS was established by a standardization procedure involving a sample of 220 Italian patients with RTT. Internal consistency was found at 0.912, and the internal consistency of the subscales was also high (0.811–0.934; Fabio et al, 2005 ; Vignoli et al, 2010 ; Romano et al, 2020 ). This scale will not be discussed within the scope of the present article.…”

Section: Methodsmentioning

confidence: 96%

Skype Supervised, Individualized, Home-Based Rehabilitation Programs for Individuals With Rett Syndrome and Their Families – Parental Satisfaction and Point of View

Lotan

Ippolito²,

Favetta

et al. 2021

Front. Psychol.

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Individuals with Rett syndrome (RTT) experience impaired gross motor skills limiting their capacity. Therefore, they need support to participate in physical activities, and it is crucial to work with primary caregivers when developing appropriate strategies, thereby leading to an active lifestyle. There is limited evidence supporting the effectiveness of remotely supported physical activity interventions. This project aimed to evaluate the effects of a skype-based, telehealth-delivered physical activity program carried out by participants’ parents at home. This article will focus on parental points of view. A mixed-methods design evaluating parental satisfaction was conducted. Forty participants with a confirmed genetic diagnosis of RTT and their families were recruited. The intervention included a 12-week individualized daily physical activity program carried out by participants’ parents and bi-weekly supervised by expert therapists. Parents’ impressions and feelings related to the program implementation were collected throughout semi-structured interviews, and an ad hoc developed questionnaire and discussed. The current project results suggest that a remote physical rehabilitation program, supported fortnightly by video calls, represents an effective way of conducting a remote physical therapy intervention for this population and that it can be easily carried out at home by primary caregivers, promoting positive functional changes, without bringing feelings of frustration due to the required workload. The strategies that families have learned during the program to support the motor activities of their daughters represent an easily performed set of tools that they can maintain and use in everyday life even after the cessation of the program.

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Section: Methodsmentioning

confidence: 96%

Skype Supervised, Individualized, Home-Based Rehabilitation Programs for Individuals With Rett Syndrome and Their Families – Parental Satisfaction and Point of View

Lotan

Ippolito²,

Favetta

et al. 2021

Front. Psychol.

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“…Suitable outcome measures with validation data for RTT were selected. 50 1. The primary outcome of sedentary time will be measured using the activPAL.…”

Section: Primary Outcome Measuresmentioning

confidence: 99%

Implementing telehealth support to increase physical activity in girls and women with Rett syndrome—ActivRett: protocol for a waitlist randomised controlled trial

et al. 2020

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IntroductionIndividuals with Rett syndrome (RTT) experience impaired gross motor skills, limiting their capacity to engage in physical activities and participation in activities. There is limited evidence of the effectiveness of supported physical activity interventions. This study aims to evaluate the effects of a telehealth-delivered physical activity programme on physical activity, sedentary behaviour and quality of life in RTT.Methods and analysisThis is a multicentre study, conducted in Australia, Denmark and Israel. It is a randomised waitlist-controlled trial comparing an intervention to support physical activity with usual care. Participants are children and adults with RTT, recruited from the Australian Rett Syndrome Database, the Danish Center for Rett Syndrome and the Rett Syndrome Association of Israel. The intervention duration is 12 weeks, including fortnightly telephone contact to plan, monitor and develop individual activity programmes. Outcomes are measured at baseline, at 13 weeks and then at 25 weeks. The primary outcomes are sedentary behaviour assessed with an activPAL accelerometer and the number of daily steps measured with a StepWatch Activity Monitor. Secondary outcomes include sleep, behaviour and quality of life. Caregiver experiences will be assessed immediately after the intervention using a satisfaction questionnaire. Group differences for each outcome will be evaluated with analysis of covariance, adjusting for baseline values on an intention-to-treat basis.Ethics and disseminationEthics approval has been obtained in Western Australia from the Child and Adolescent Health Services (RGS3371), in Denmark from the Capital Region Ethics Committee (H-19040514) and in Israel from the Ariel University Institutional Review Board (AU-HEA-ML-20190331). Manuscripts on the development of the intervention from pilot work and the results of the intervention will be submitted to peer-reviewed journals. Results will be presented at conferences and consumer forums. We will develop an online resource documenting the physical activity programme and available supporting evidence.Trial registration numberNCT04167059; Pre-results.

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“…This is crucial in supporting the use of tDCS as a promising alternative for rehabilitation in an RTT population. Currently, multiple therapies such as cognitive, physical, occupational, speech therapy, and others have been shown to be effective in promoting improved communication, motor control and cognitive abilities of subjects with RTT [32][33][34][35][36][37]. However, the question is open: What is missing is the knowledge about the exact combination of these trainings with tDCS and the extent of practice required to promote skill development.…”

Section: Introductionmentioning

confidence: 99%

Effects of Combined Transcranial Direct Current Stimulation with Cognitive Training in Girls with Rett Syndrome

et al. 2020

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Background: Transcranial Direct Current Stimulation (tDCS) combined with traditional rehabilitative techniques has not been widely applied to Rett Syndrome (RTT). The aim of this study was to examine the effects of combined cognitive traditional training with tDCS applied to attention and language measures in subjects with RTT. Methods: 31 subjects with RTT were randomly allocated into two groups: non-sham tDCS (n = 18) and sham tDCS (n = 13). The former received the integrated intervention non-sham tDCS plus cognitive empowerment during the treatment phase. The latter received sham stimulation plus cognitive empowerment. All participants underwent neurological and cognitive assessment to evaluate attention and language measures: before integrated treatment (pre-test phase), at the conclusion of the treatment (post-test phase), and at 1 month after the conclusion of the treatment (follow-up phase). Results: the results indicated longer attention time in the non-sham tDCS group compared to the sham tDCS group with a stable trend also in the follow-up phase; an increase of the number of vowel/phoneme sounds in the non-sham tDCS group; and an improvement in the neurophysiological parameters in the non-sham tDCS group. Conclusions: This study supports the use of tDCS as a promising and alternative approach in the RTT rehabilitation field.

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Gross Motor, Physical Activity and Musculoskeletal Disorder Evaluation Tools for Rett Syndrome: A Systematic Review

Cited by 19 publications

References 108 publications

Skype Supervised, Individualized, Home-Based Rehabilitation Programs for Individuals With Rett Syndrome and Their Families – Parental Satisfaction and Point of View

Skype Supervised, Individualized, Home-Based Rehabilitation Programs for Individuals With Rett Syndrome and Their Families – Parental Satisfaction and Point of View

Implementing telehealth support to increase physical activity in girls and women with Rett syndrome—ActivRett: protocol for a waitlist randomised controlled trial

Effects of Combined Transcranial Direct Current Stimulation with Cognitive Training in Girls with Rett Syndrome

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