Factors Associated with Clinical Meaningful Recovery after Upper Limb Task-Oriented Training in People with Stroke: A Cohort Study Alberto Romano, Anna Di Meo, Maurizio Ferrarin, Rune Thorsen, Davide Cattaneo, Rita Bertoni, Johanna Jonsdottir Neurorehabilitation, 2025 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.
Effects of a Supervised-As-Needed Home Exercise Program on Scoliosis and Motor Function in Rett Syndrome: A Multiple-Baseline Study Alberto Romano, Marina Luisa Rodocanachi Roidi, Miriam Nella Savini, Ilaria Viganò, Michal Dziubak, Luca Pietrogrande, Daniel Sender Moran, Meir Lotan Journal of Clinical Medicine, 2025 Background/Objectives: Scoliosis is a prevalent comorbidity in Rett syndrome (RTT), often necessitating surgical intervention. This study investigated the impact of a 10-month individualized home exercise program (HEP) on scoliosis progression and gross motor function in girls aged six to 16 years with RTT. Methods: A multiple-baseline single-case design (AABA) was employed with 20 participants. A remotely supervised HEP, based on established principles focused on posture and physical activity, was implemented daily for at least one hour. The primary outcome was the rate of scoliosis progression assessed through the Cobb angle change measured via spinal radiographs at baseline, pre-intervention, and post-intervention. The secondary outcome was the gross motor function. Results: The HEP did not significantly reduce the rate of scoliosis progression. However, individual responses varied, with three participants showing scoliosis reduction. Significant improvements were observed in gross motor function, particularly in standing, walking, and stair-climbing abilities. Conclusions: The HEP did not significantly impact overall scoliosis progression, but a significant improvement was found in gross motor function. Further research into larger sample sizes is needed to confirm the effectiveness of exercise interventions in people with RTT.
Remote Physiotherapy for Children with ASD during the COVID-19 Pandemic: A Thematic Analysis of Physical Therapists’ Perspectives Yael Harel, Alberto Romano, Meir Lotan Journal of Clinical Medicine, 2024 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.
A Severity Comparison between Italian and Israeli Rett Syndrome Cohorts Alberto Romano, Meir Lotan, Rosa Angela Fabio Diagnostics, 2023 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.
Psychometric Values of a New Scale: The Rett Syndrome Fear of Movement Scale (RSFMS) Meir Lotan, Moti Zwilling, Alberto Romano Diagnostics, 2023 (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.
Evaluation Tools Developed for Rett Syndrome Meir Lotan, Jenny Downs, Michelle Stahlhut, Alberto Romano Diagnostics, 2023 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 activPALTM; (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.
Individualized Remotely Supervised Motor Activity Programs Promote Rehabilitation Goal Achievement, Motor Functioning, and Physical Activity of People with Rett Syndrome—A Single-Cohort Study Alberto Romano, Elena Ippolito, Martina Favetta, Meir Lotan, Daniel Sender Moran International Journal of Environmental Research and Public Health, 2023 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.
Telerehabilitation with Computer Vision-Assisted Markerless Measures: A Pilot Study with Rett Syndrome Patients Andrea Nucita, Giancarlo Iannizzotto, Michela Perina, Alberto Romano, Rosa Angela Fabio Electronics Switzerland, 2023 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.
A scoping review of scientific concepts concerning motor recovery after stroke as employed in clinical trials Martina Favetta, Alberto Romano, Nicola Valè, Blazej Cieslik, Sara Federico, Alessia Girolami, Deborah Mazzarotto, Giorgia Pregnolato, Anna Righetti, Silvia Salvalaggio, Enrico Castelli, Nicola Smania, Stefano Bargellesi, Pawel Kiper, Maurizio Petrarca Frontiers in Neurology, 2023 The scientific literature on poststroke rehabilitation is remarkably vast. Over the last decades, dozens of rehabilitation approaches have been investigated. However, sometimes it is challenging to trace new experimental interventions back to some of the known models of motor control and sensorimotor learning. This scoping review aimed to investigate motor control models’ diffusion among the literature on motor recovery after stroke. We performed a literature search on Medline, Cochrane, Web of Science, Embase, and Scopus databases. The last search was conducted in September 2023. This scoping review included full-text articles published in English in peer-reviewed journals that provided rehabilitation interventions based on motor control or motor learning frameworks for at least one individual with stroke. For each study, we identified the theoretical framework the authors used to design the experimental treatment. To this aim, we used a previously proposed classification of the known models of motor control, dividing them into the following categories: neuroanatomy, robotics, self-organization, and ecological context. In total, 2,185 studies were originally considered in this scoping review. After the screening process, we included and analyzed 45 studies: 20 studies were randomized controlled trials, 12 were case series, 4 were case reports, 8 were observational longitudinal pilot studies, and 1 was an uncontrolled trial. Only 10 studies explicitly declared the reference theoretical model. Considering their classification, 21 studies referred to the robotics motor control model, 12 to the self-organization model, 8 to the neuroanatomy model, and 4 to the ecological model. Our results showed that most of the rehabilitative interventions purposed in stroke rehabilitation have no clear theoretical bases on motor control and motor learning models. We suggest this is an issue that deserves attention when designing new experimental interventions in stroke rehabilitation.
Development and validation of a system for the prediction of challenging behaviors of people with autism spectrum disorder based on a smart wearable shirt: A mixed-methods design Moti Zwilling, Alberto Romano, Hay Hoffman, Meir Lotan, Riki Tesler Frontiers in Behavioral Neuroscience, 2022 BackgroundMost people with autism spectrum disorder (ASD) present at least one form of challenging behavior (CB), causing reduced life quality, social interactions, and community-based service inclusion.ObjectivesThe current study had two objectives: (1) to assess the differences in physiological reaction to stressful stimuli between adults with and without high-functioning ASD; (2) to develop a system able to predict the incoming occurrence of a challenging behaviors (CBs) in real time and inform the caregiver that a CB is about to occur; (3) to evaluate the acceptability and usefulness of the developed system for users with ASD and their caregivers.MethodsComparison between physiological parameters will be conducted by enrolling two groups of 20 participants with and without ASD monitored while watching a relaxing and disturbing video. To understand the variations of the parameters that occur before the CB takes place, 10 participants with ASD who have aggressive or disruptive CBs will be monitored for 7 days. Then, an ML algorithm capable of predicting immediate CB occurrence based on physiological parameter variations is about to be developed. After developing the application-based algorithm, an efficient proof of concept (POC) will be carried out on one participant with ASD and CB. A focus group, including health professionals, will test the POC to identify the strengths and weaknesses of the developed system.ResultsHigher stress level is anticipated in the group of people with ASD looking at the disturbing video than in the typically developed peers. From the obtained data, the developed algorithm is used to predict CBs that are about to occur in the upcoming 1 min. A high level of satisfaction with the proposed technology and useful consideration for further developments are expected to emerge from the focus group.Clinical trial registration[https://clinicaltrials.gov/], identifier [NCT05340608].
Longitudinal gait assessment in a stiff person syndrome Tommaso Schirinzi, Andrea Sancesario, Alberto Romano, Martina Favetta, Marina Gobbi, Massimiliano Valeriani, Enrico S. Bertini, Enrico Castelli, Gessica Vasco, Maurizio Petrarca, Gessica Della Bella International Journal of Rehabilitation Research, 2018