The Growing Role of Telerehabilitation and Teleassessment in the Management of Movement Disorders in Rare Neurological Diseases: A Scoping Review.

Background: People with rare neurological diseases (RNDs) often experience symptoms related to movement disorders, requiring a multidisciplinary approach, including rehabilitation. Telemedicine applied to rehabilitation and symptom monitoring may be suitable to ensure treatment consistency and personalized intervention. The objective of this scoping review aimed to emphasize the potential role of telerehabilitation and teleassessment in managing movement disorders within RNDs. By providing a systematic overview of the available literature, we sought to highlight potential interventions, outcomes, and critical issues. Methods: A literature search was conducted on PubMed, Google Scholar, IEEE, and Scopus up to March 2024. Two inclusion criteria were followed: (1) papers focusing on telerehabilitation and teleassessment and (2) papers dealing with movement disorders in RNDs. Results: Eighteen papers fulfilled the inclusion criteria. The main interventions were home-based software and training programs, exergames, wearable sensors, smartphone applications, virtual reality and digital music players for telerehabilitation; wearable sensors, mobile applications, and patient home video for teleassessment. Key findings revealed positive outcomes in gait, balance, limb disability, and in remote monitoring. Limitations include small sample sizes, short intervention durations, and the lack of standardized protocols. Conclusion: This review highlighted the potential of telerehabilitation and teleassessment in addressing movement disorders within RNDs. Data indicate that these modalities may play a major role in supporting conventional programs. Addressing limitations through multicenter studies, longer-term follow-ups, and standardized protocols is essential. These measures are essential for improving remote rehabilitation and assessment, contributing to an improved quality of life for people with RNDs.

Twenty years of intrathecal baclofen therapy in Slovenia: a retrospective single-center analysis of complications.

Since the first implantation in July 2001, the intrathecal baclofen (ITB) therapy for patients with generalized spasticity has been used in Slovenia for 20 years. The aim of this retrospective study was to evaluate the rates of different complications, especially if catheter-related complications were less frequent after the introduction of the coated catheter type in February 2013, and the potential correlation between higher baclofen doses and the incidence of complications. We retrospectively collected data from all patients in the registry during the period from 3 July 2001 to 31 December 2021. Among 138 patients (48 females), 120 patients had the first ITB system implanted at the University Medical Centre Ljubljana. Forty-three complications were reported in 38 patients (27%), with a total complication rate of 0.203/1000 days or 0.074/pump year. The most frequent was catheter-related (0.083/1000 days or 0.030/pump year), followed by skin-related (0.063/1000 days or 0.023/pump year) and pump-related complication (0.026/1000 days or 0.009/pump year). The incidence of catheter-related complications decreased significantly since the use of Ascenda type catheter: 14/7 complications per 88/147 implantations ( P  = 0.008). Patients with complications had a statistically significantly higher dose of baclofen: median 400 µg/24h vs. median 300 µg/24h ( P  = 0.016). Our retrospective analysis confirmed a significant decrease of catheter-related complications after the implementation of Ascenda type catheter in February 2013. Patients with a higher ITB dose had a statistically significantly higher incidence of complications. The total complication rate was a bit higher as previously reported in other studies, which is consistent with a long follow-up time.

Psychometric assessment of the Slovene translation of the Measure of Processes of Care for Service Providers.

The Measure of Processes of Care for professionals (MPOC-SP) is valid and reliable a self-administered questionnaire for paediatric service providers engaged in care for chronically ill children. Our aim was to evaluate internal consistency reliability, one-year stability and some aspects of validity of its Slovene translation. Sixty-seven service providers from seven professional groups of several hospitals and health centres participated in the study. MPOC-SP mean scores for all four subscales were high; their ranking order was the same as in other MPOC-SP studies. All subscales exhibited sufficient internal consistency (Cronbach alpha from 0.69 to 0.86, adequate corrected item-total correlations). None of the mean subscale scores changed significantly after one year (P values from 0.11 to 0.80). The Slovene translation of the MPOC-SP can therefore be considered a reliable instrument that shows good stability over a period of one year, and as such it can be adopted in clinical practice.

Effect of Robot-Assisted Gait Training on Selective Voluntary Motor Control in Ambulatory Children with Cerebral Palsy.

This pilot study investigated the efficacy of a four week robot-assisted gait training in twelve children with spastic diparesis. Short-term results and a 3-month follow-up showed statistically significantly increased selective motor control, walking farther distances, gross motor score, and decreased joint contractures.

Effect of Robot-Assisted Gait Training on Selective Voluntary Motor Control in Ambulatory Children with Cerebral Palsy.

This pilot study investigated the efficacy of a four week robot-assisted gait training in twelve childrenwith spastic diparesis. Short-term results and a 3-month follow-up showed statistically significantly increased selective motor control, walking farther distances, gross motor score, and decreased joint contractures.

Parental evaluation of processes of care in relation to the child, parent and family characteristics.

The Measure of Processes of Care (MPOC) is a questionnaire for parents used to evaluate the behaviours of healthcare providers. We applied its 20-item version (MPOC-20) to explore the associations between parental evaluation of processes of care and child, parent and family characteristics in Slovenia. A novelty of our approach was the emphasis on the role of a key person. Parents of 235 children who were admitted as inpatients or outpatients of six institutions (hospitals and health centres) because of chronic illness or disability participated in the study. Parents were asked to fill in a general questionnaire on several characteristics of the child, child's health problems, the family and the therapy programmes, and MPOC-20. Univariate associations of the five MPOC-20 scale scores with child, parent and family characteristics were tested first. Multiple linear regression was used for modelling scale scores in relation to child, parent and family characteristics. The analyses singled out availability of a key person as the factor most consistently and unequivocally influencing parental satisfaction. We also found a general positive effect of male sex of the child on the MPOC-20 scores. Neither the present age of children nor age at the onset of health problems was found to be associated with MPOC-20 scores. We found no notable association of the number of health problems with the MPOC-20 scores, but observed clear differences when comparing parental satisfaction with processes of care between different participating institutions.