The eHealth well-being service for patients with SMA and other neuromuscular disorders during the COVID-19 emergency

The aim of the Wellbeing and Emotional Activities (WEA) project was to sustain families, to reduce the impact of COVID-19 and to create web meetings using Microsoft Teams during which children with muscular dystrophies could interact, have fun and learn. The goals of this study were to compare the perception of service users, both from the point of view of parents and children, measured with a users' satisfaction questionnaire, and to correlate if the level of satisfaction of the children could be correlated to trait self-concepts of the Piers-Harris Children's Self-Concept Scale. Eleven children with neuromuscular disorders participated in the project. The WEA program included 12 web meetings, consisting of 1 hour, 3 times a week over a 1-month period. It included game activities aimed at enhancing cognitive functions, promoting critical thinking and managing emotions. Results indicated that both children and parents perceived the same level of satisfaction. Correlations between children's satisfaction in life and the self-concept scale were found. This study highlights the benefits and disadvantages of the use of a WEA web-based program from the service users' perspective. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Telerehabilitation with Computer Vision-Assisted Markerless Measures: A Pilot Study with Rett Syndrome Patients

The use of telerehabilitation systems has shown a significant growth in the past years, demonstrating their crucial relevance in the time of the COVID-19 pandemic. Many devices and sensors have been proposed to analytically measure parameters for patient assessment, with limitations due to costs or feasibility. In this paper, we present a motor telerehabilitation system with computer vision-assisted markerless measures for patients with Rett syndrome. Twenty-one RTT (Rett syndrome) patients, with ages ranging from age 4 to 31 (Median: 12.50;IQR (interquartile range): 9.50-17.25) were recruited. The study follows a pre-test-post-test design, where the patients were submitted to a pre-test, treatment, post-test 1, treatment, post-test 2 procedure. Progress in patient outcomes was assessed by measuring joint passive range of movement (PRoM). Results show the reliability of our system, and the feasibility of a telerehabilitation treatment for RTT patients, with significant improvements in shoulder mobility and in elbow flexion and extension. Limited results in lower limbs suggest that home treatment should be fostered to reduce sedentary time.

The eHealth well-being service for patients with SMA and other neuromuscular disorders during the COVID-19 emergency

The aim of the Wellbeing and Emotional Activities (WEA) project was to sustain families, to reduce the impact of COVID-19 and to create web meetings using Microsoft Teams during which children with muscular dystrophies could interact, have fun and learn. The goals of this study were to compare the perception of service users, both from the point of view of parents and children, measured with a users' satisfaction questionnaire, and to correlate if the level of satisfaction of the children could be correlated to trait self-concepts of the Piers-Harris Children's Self-Concept Scale. Eleven children with neuromuscular disorders participated in the project. The WEA program included 12 web meetings, consisting of 1 hour, 3 times a week over a 1-month period. It included game activities aimed at enhancing cognitive functions, promoting critical thinking and managing emotions. Results indicated that both children and parents perceived the same level of satisfaction. Correlations between children's satisfaction in life and the self-concept scale were found. This study highlights the benefits and disadvantages of the use of a WEA web-based program from the service users' perspective. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

School's out: Interactive tele-education for Rett patients at the time of COVID

The "Interactive School" project originated in a historical moment in which Italy and almost all countries in the world are experiencing and facing the fear of coronavirus disease 2019 (COVID-19) contagion. Many countries, including Italy, have imposed the closure of schools, universities, and all centers that host patients with Rett Syndrome (RTT), a rare disease that heavily impacts on autonomy, mobility, and some cognitive and communication abilities of the affected subjects. As a consequence, we decided to launch a remotely operated, Interactive School program specifically oriented to Rett patients, and in this article, we briefly provide a report of the ongoing activity. The Interactive School project exploits an easy-to-use technological system designed to be as acceptable as possible for families with RTT patients. We are currently using this system with positive feedback from both families and patients. This is encouraging and confirms the design and realization choices. (PsycInfo Database Record (c) 2021 APA, all rights reserved) Impact Statement This study advances the idea that both parents and therapists working with subjects with Rett Syndrome can benefit from a remotely operated Interactive School program. This Interactive School program may be easier to incorporate into both clinical settings and patients' daily life. (PsycInfo Database Record (c) 2021 APA, all rights reserved)

The Influence of Media Exposure on Anxiety and Working Memory during Lockdown Period in Italy.

The rapid spread of the coronavirus pandemic has caused anxiety around the world. During lockdown, the media became a point of reference for people seeking information. However, little is known on the relationships between anxiety resulting from persistent media exposure to coronavirus-related programs and the effects produced on working memory. In this work, a total of 101 Italian citizens (53.7% female) aged between 18 and 45 years old, who were from 14 provinces in Italy, participated in an online survey. Participants were presented with media exposure and anxiety questionnaires and they were instructed to carry out working memory tasks (visual and auditory n-back). The results showed that media exposure is related to anxiety. It was also found that high levels of anxiety have a negative influence on the performance of both visual and auditory working memory tasks in terms of increased reaction times of responses and decreased accuracy. The results were critically discussed in the light of the Social Compensation Hypothesis.

Effects of a remotely supervised motor rehabilitation program for individuals with Rett syndrome at home.

PURPOSE: In this study, the effect of a remotely supervised, home-based, family-centered individualized rehabilitation program of motor activities for individuals with Rett syndrome (RTT) was evaluated. MATERIALS AND METHODS: Thirteen participants with classic genetically confirmed RTT followed by a three-month program of motor activities at home. A total of 47 rehabilitative goals were set. Goals achievement, motor function, and parental satisfaction were evaluated. Each program was carried out by the participant's parents and remotely supervised via Skype calls, twice by a therapist experienced in RTT rehabilitation. RESULTS: Thirty-seven (78.7%) rehabilitative goals were achieved or overachieved. Ten participants (76.9%) significantly increased their gross motor functional level with a medium size effect (0.604). Parental reports of the involved families suggest, on average, a high level of usefulness of the program (4.4/5), adherence to the program (4.4/5), and general satisfaction (4.5/5). CONCLUSIONS: Our findings strongly support the implementation of such programs for this population. As these programs were remotely supervised, they can be implemented when the children are away from referenced facilities for long durations, such as during long holidays or a Covid-19 type lockdown.Implications for rehabilitationA remote supervised motor activity program carried out by the primary caregiver supports motor functioning in RTT.Therapists should consider family members' motivation to carry out the activities and integrate them into the family's daily routine.The program should be flexible to adapt to any sudden change in medical and environmental conditions, functional ability, and family members' motivational levels.

Social and Cognitive Interactions Through an Interactive School Service for RTT Patients at the COVID-19 Time.

Background: The closure of all educational institutions and most rehabilitation centres represents a precautionary measure to face the COVID-19 pandemic, but the isolation and social distancing may be particularly challenging for children with special needs and disabilities (SEND), such as Rett Syndrome (RTT). The main aim of this study was to promote cognitive and social interactions among children with RTT through an interactive school program. Methods: The Interactive School palimpsest was composed of moments in which a teacher spoke directly to children with RTT and expected a response through eye gaze, and moments in which storeys-cartoon were presented while tracking the eye gaze of children. We investigated behavioural, social and cognitive parameters. Results: Children participated in both social and cognitive tasks with the spontaneous reduction of stereotypies and with increase in attention. They recalled more significant indexes when music or a song was presented together with a cartoon or a cognitive task. Conclusions: This study provides initial insights in promoting cognitive and social interactions and in the support needs of families with a child with RTT during the COVID-19 pandemic.