Alberto Romano

Background: People with intellectual and developmental disabilities (IDDs) face difficulties in being included in activities with their peers due to differences in cognitive abilities and social skills. Video games offer a promising medium to support inclusion, physical activity, and social engagement, but current solutions struggle to provide equitable experiences to heterogeneous groups of users, especially in multiplayer real-time contexts. Objective: This study aims to co-design and develop an inclusive collaborative real-time multiplayer exergame, assessing its usability, the impact of accessibility features, and players’ satisfaction and enjoyment. Methods: The exergame Elemental was co-designed following the CeHRes (Centre for eHealth and Wellbeing Research) Roadmap, involving clinicians, educators, engineers, and individuals with IDDs. A total of 2 cooperative minigames were developed: Igloo (focused on stimulus collection) and Volcano (focused on enhancing collaboration), playable with 4 different input devices (buttons, tablet, hand-tracking, and full-body tracking). Customizable facilitation options were implemented to adapt gameplay to sensory, cognitive, and motor needs. Young adults with IDDs participated in a 2-phase study testing whether personalized accommodations could eliminate performance disparities: (1) Igloo in homogeneous groups, based on functioning and expected behavior and interaction with stimuli, without facilitations, using all devices to identify optimal input methods, and (2) Volcano in heterogeneous groups using their best-performing devices with individualized facilitations tailored by educators. Data collected included in-game performance (accuracy, reaction time, and collaboration contributions), behavioral observations, and questionnaires on satisfaction and usability from players. Nonparametric analyses were used to assess relationships between disability severity, performance, and the impact of facilitations. Results: A total of 11 individuals (2 male and 9 female; mean age 25.1, SD 4.4 years) with different IDD diagnoses were recruited from an association supporting individuals with cognitive impairments. In the Igloo sessions, performance was negatively correlated with intellectual disability severity (ρ=–0.87, 95% CI –1.00 to –0.56; P<.001) and reaction time was positively correlated (ρ=0.69, 95% CI 0.08-0.94; P=.02). Instead, no significant correlation between performance and intellectual disability severity was observed in the Volcano sessions (ρ=0.24, 95% CI –0.48 to 0.79; P=.48). These results highlight that tailored support (personalized facilitations and best-suited devices) can foster equitable participation even in heterogeneous groups. Behavioral analysis revealed frequent peer collaboration. Participants reported high usability and satisfaction (median 4/5, IQR 0.5). Conclusions: This study introduces an inherently accessible, co-designed multiplayer exergame. Unlike approaches that adapt games or create separate disability-specific solutions, Elemental was conceived as inclusive from the outset. By demonstrating that personalized features can eliminate performance disparities, this work highlights how inclusive co-design can transform an activity into an inclusive, collaborative, and enjoyable experience for individuals with different abilities and intellectual impairments, supporting the shift from fitting individuals into existing digital spaces to designing environments able to embrace diversity.

BACKGROUND People with intellectual and developmental disabilities (IDD) face difficulties in being included in activities with their peers due to differences in cognitive abilities and social skills required for group interaction. While existing accessibility policies attempt to accommodate their needs, these adaptations may result in experiences that differ from those of neurotypical peers, limiting true inclusion. Videogames offer a promising medium to support inclusion, physical activity, and social engagement, but current solutions struggle to provide equitable experiences to heterogeneous group of users, especially in a multiplayer real-time context. OBJECTIVE This work aims to co-design and develop an inclusive collaborative real-time multiplayer exergame, assessing its usability, the impact of accessibility features, and players’ satisfaction and enjoyment. METHODS The exergame Elemental was co-designed following the CeHRes Roadmap, involving clinicians, educators, engineers, and individuals with IDDs. Two cooperative minigames were developed: Igloo (focused on collecting reaction time data), and Volcano (focused on enhancing collaboration), each playable with four different input devices (buttons, tablet, hand-tracking, and full-body tracking). Customizable facilitation options were implemented to adapt gameplay to sensory, cognitive and motor needs. Young adults with IDDs participated in a two-phase study testing whether personalized accommodations could eliminate performance disparities: 1) Igloo in homogeneous groups without facilitations, using all devices to identify optimal input methods; 2) Volcano in heterogeneous groups using their best-performing devices with individualized facilitations tailored by educators. Data collected included in-game performance (accuracy, reaction time, collaboration contributions), behavioral observations, and questionnaires on usability and enjoyment from both players and operators. Non-parametric analyses were used to assess relationships between disability severity, performance, and the impact of facilitations. RESULTS 11 individuals aged 19-36 with different IDD diagnosis were included in the testing. In the Igloo sessions performance was correlated with their intellectual disability severity (r = –0.87, P < .001), while in the Volcano sessions no correlation was retrieved (P = .45). These results highlight that tailored support (personalized facilitations and best-suited devices) can foster equitable participation even in heterogeneous groups. Behavioral analysis revealed frequent peer collaboration, and both participants and operators reported high usability, satisfaction, and enjoyment. CONCLUSIONS This study demonstrates the effectiveness of inclusive co-design and personalized features to transform an activity into an inclusive and collaborative experience that is enjoyable by individuals with different abilities and intellectual impairments. This work proves the importance of shifting the focus from fitting individuals into existing digital spaces, to designing digital spaces able to embrace diversity.

Background: Task-oriented training (TOT) is a commonly used intervention to improve upper extremity function after stroke. However, predictors of response to rehabilitation for performance and participation remain poorly understood. Aim: To identify baseline predictors of clinically significant upper extremity (UE) recovery across impairment, performance, and participation in individuals post-stroke following TOT. Methods: This is a retrospective study. Sixty-four individuals with stroke were enrolled and received five weeks of inpatient TOT for UE. Baseline characteristics and outcome measures were assessed using the Fugl-Meyer Assessment-Upper Extremity (FMA-UE) for impairment, the Action Research Arm Test (ARAT-15) for performance, and the QuickDASH-9 for participation. Participants were classified as responders and non-responders to the intervention, and binary logistic regression models were developed to predict responsiveness to impairment, performance, and participation measures. Results: All outcome measures showed significant improvement post-intervention. The baseline FMA-UE score, chronicity, and dominance of the involved UE predicted responsiveness for impairment. The FMA-UE score was the main predictor of responsiveness in performance, while no predictors were identified for participation. Conclusions: TOT improved UE impairment and performance in stroke patients, particularly those with moderate baseline impairment. Baseline UE function, chronicity, and dominance were key predictors of responsiveness in impairment and performance. This study highlights the importance of personalized TOT after a stroke. It demonstrates that baseline function, chronicity, and affected limb dominance predict impairment and performance responsiveness to TOT while emphasizing the need to incorporate strategies that facilitate real-world skill transfer and address personal and environmental factors to maximize participation.

Individuals with intellectual and developmental disabilities (IDD) present multiple co-morbidities within the medical, physiological, and mental areas, thereby putting them at an increased risk for a variety of illnesses. Moreover, many of them are living a life of inactivity, thereby worsening their health condition. Many researchers have identified a clear relationship between physical fitness and wellness. This chapter will describe the poor physical condition of individuals with IDD and will suggest some intervention possibilities, focusing on motivational factors and integration into the person’s daily living routines. While some physical activity possibilities are free and can be found online, other more advanced tools for promoting an active lifestyle can be implemented with this group of people. The present chapter will suggest research-based effective strategies to enhance the physical activity of people with IDD through remote activity intervention programs, virtual reality training, and personally adapted simple training applications.

Background: Physical therapy plays a crucial role in addressing the physical challenges faced by individuals with autism spectrum disorder (ASD). Amidst the COVID-19 pandemic lockdown, physical therapists (PTs) working in special education centers for ASD children were tasked with deploying remote telehealth interventions (RTIs), an uncommon approach in physical therapy until then. The present article aims to describe and discuss the PTs’ perspective of using RTI with children with ASD during the national Israeli COVID-19 lockdown. Methods: Reports from 13 experienced PTs who treated and supported 244 children with ASD using RTIs over six weeks were analyzed. The study employed quantitative research methods, including freely written reports and discussions addressing the question “what were your experiences as a PT treating ASD children remotely during the nationwide COVID-19 lockdown?” Results: the reports were categorized into four main themes: (a) the implications of RTIs on the children; (b) the implications of RTIs on the PTs; (c) modifications for applying RTI; and (d) PTs’ family rapport as a necessary basis for RTI. Noteworthy findings include the unaffected implementation of RTIs by ASD severity level and the dependence of RTI’s success on parental availability and the ability of parents to tailor activities for their child. Conclusions: The findings of the current research suggest that PT services through RTIs are well-suited for individuals with ASD and their families.

Rett syndrome (RTT) is a neurodevelopmental disorder marked by profound cognitive, communication, and motor impairments. Despite identified genotype/phenotype connections, the extent of clinical severity varies even among individuals sharing the same genetic mutation. Diverse sociocultural environments, such as the level of inclusivity of the scholar system, the time spent with family, and the intensity of the rehabilitative intervention provided, might influence their development diversely. This study examines the severity of RTT in people in Italy and Israel, countries with distinct contradictory approaches to caring for those with intricate disabilities, across two age groups. Data from 136 Italian and 59 Israeli girls and women with RTT were assessed and divided into two age categories: above and below 12 years. The RARS, a standardized RTT-specific clinical severity tool, was administered. Despite no differences in age and genetic characteristics, the Italian group showed better scores in the RARS motor and disease-related characteristics areas in both age groups. Moreover, the young Italian participants gathered better total RARS scores and emotional and behavioral characteristics area scores. Furthermore, the young group showed significantly less scoliosis, foot problems, and epilepsy than the older group. These findings endorse the inclusion of girls with RTT in the regular schooling system for a limited daily period, investing in high activity levels within the home and community environments, and suggest continuously providing the person with daily occasions of physical activity and socialization.

(1) Background: One of the characteristics associated with Rett syndrome (RTT) is a fear of movement (FOM). Despite the grave consequences on health, function, and the caregiver’s burden associated with bradykinesia accompanying FOM, there is no specific FOM assessment tool for RTT. (2) Objective: To construct and assess the psychometric values of a scale evaluating FOM in RTT (Rett syndrome fear of movement scale—RSFMS). (3) Methods: Twenty-five girls aged 5–33, including a research group (N = 12 individuals with RTT) and control group (N = 13 typically developing girls at equivalent ages). The Pain and Discomfort Scale (PADS) and Facial Action Coding System (FACS) assessed the participants’ behavior and facial expressions in rest and movement situations. (4) Results: Significant behavioral differences were recorded in these rest and movement situations within the research groups using the RSFMS (p = 0.003), FACS (p = 0.002) and PADS (p = 0.002). No differences in reactions were found within the control group. The new scale, RSFMS, was found to show a high inter- and intra-rater reliability (r = 0.993, p < 0.001; r = 0.958, p < 0.001; respectively), good internal consistency (α = 0.77), and high accuracy (94.4%). (5) Conclusions: The new scale for measuring FOM in RTT, the RSFMS, was validated using the FACS and PADS. The RSFMS was found to be a tool that holds excellent psychometric values. The new scale can help clinicians working with individuals with RTT to plan appropriate management strategies for this population.

Rett syndrome (RTT) is a complex neurodevelopmental X-linked disorder associated with severe functional impairments and multiple comorbidities. There is wide variation in the clinical presentation, and because of its unique characteristics, several evaluation tools of clinical severity, behavior, and functional motor abilities have been proposed specifically for it. This opinion paper aims to present up-to date evaluation tools which have specifically been adapted for individuals with RTT often used by the authors in their clinical and research practice and to provide the reader with essential considerations and suggestions regarding their use. Due to the rarity of Rett syndrome, we found it important to present these scales in order to improve and professionalize their clinical work. The current article will review the following evaluation tools: (a) the Rett Assessment Rating Scale; (b) the Rett Syndrome Gross Motor Scale; (c) the Rett Syndrome Functional Scale; (d) the Functional Mobility Scale—Rett Syndrome; (e) the Two-Minute Walking Test modified for Rett syndrome; (f) the Rett Syndrome Hand Function Scale; (g) the StepWatch Activity Monitor; (h) the activPAL^TM; (i) the Modified Bouchard Activity Record; (j) the Rett Syndrome Behavioral Questionnaire; and (k) the Rett Syndrome Fear of Movement Scale. The authors recommend that service providers consider evaluation tools validated for RTT for evaluation and monitoring to guide their clinical recommendations and management. In this article, the authors suggest factors that should be considered when using these evaluation tools to assist in interpreting scores.

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.

Background: Gross motor function in Rett syndrome (RTT) is always limited. The complex clinical picture typical of most people with RTT requires intensive and specific rehabilitation programs. Previous reports on remotely supervised motor activity programs suggested positive outcomes for this population. The current article describes the impact of a remote-supervised motor activity program carried out by family members of individuals with RTT on achieving rehabilitation goals and improving gross and fine motor functioning and daily physical activity. Methods: Forty subjects with RTT followed a three-month remotely supervised motor activity program carried out by their family members at home after a three-month baseline period. After the end of the intervention, a three-month wash-out period was implemented. Rehabilitation goal achievement, motor functioning, and level of daily physical activity were measured. Results: 82.4% of rehabilitation goals were achieved or overachieved. Participants’ motor functioning and physical activity significantly increased after the intervention (p ˂ 0.001). Improvements were maintained after the wash-out phase. Conclusions: The proposed intervention was effective for people with RTT of various ages and severity levels. The results highlight the need for lifelong, individualized, daily based, and professionally supervised rehabilitation possibilities for individuals with RTT.