Robotic and clinical evaluation of upper limb motor performance in patients with Friedreich's Ataxia: an observational study
children; Rehabilitation; Neurosciences & Neurology; Engineering; coordination; therapy; rating-scale; Accuracy; and Rating of Ataxia; cerebellar-ataxia; Friedreich's ataxia; Kinematics; movement; multiple-sclerosis; quantitative-evaluation; Reaching task; rehabilitation; Robot-mediated evaluation; Scale for the Assessment; smoothness; Smoothness; stroke recovery; Submovements; Upper limb; tone and motor problems; tool development; scale development; InMotion Arm Robot
Background: Friedreich's ataxia (FRDA) is the most common hereditary autosomal recessive form of ataxia. In this disease there is early manifestation of gait ataxia, and dysmetria of the arms and legs which causes impairment in daily activities that require fine manual dexterity. To date there is no cure for this disease. Some novel therapeutic approaches are ongoing in different steps of clinical trial. Development of sensitive outcome measures is crucial to prove therapeutic effectiveness. The aim of the study was to assess the reliability and sensitivity of quantitative and objective assessment of upper limb performance computed by means of the robotic device and to evaluate the correlation with clinical and functional markers of the disease severity. Methods: Here we assess upper limb performances by means of the InMotion Arm Robot, a robot designed for clinical neurological applications, in a cohort of 14 children and young adults affected by FRDA, matched for age and gender with 18 healthy subjects. We focused on the analysis of kinematics, accuracy, smoothness, and submovements of the upper limb while reaching movements were performed. The robotic evaluation of upper limb performance consisted of planar reaching movements performed with the robotic system. The motors of the robot were turned off, so that the device worked as a measurement tool. The status of the disease was scored using the Scale for the Assessment and Rating of Ataxia (SARA). Relationships between robotic indices and a range of clinical and disease characteristics were examined. Results: All our robotic indices were significantly different between the two cohorts except for two, and were highly and reliably discriminative between healthy and subjects with FRDA. In particular, subjects with FRDA exhibited slower movements as well as loss of accuracy and smoothness, which are typical of the disease. Duration of Movement, Normalized Jerk, and Number of Submovements were the best discriminative indices, as they were directly and easily measurable and correlated with the status of the disease, as measured by SARA. Conclusions: Our results suggest that outcome measures obtained by means of robotic devices can improve the sensitivity of clinical evaluations of patients' dexterity and can accurately and efficiently quantify changes over time in clinical trials, particularly when functional scales appear to be no longer sensitive.
Germanotta M; Vasco G; Petrarca M; Rossi S; Carniel S; Bertini E; Cappa P; Castelli E
Journal of Neuroengineering and Rehabilitation
2015
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12984-015-0032-6" target="_blank" rel="noreferrer noopener">10.1186/s12984-015-0032-6</a>
Advancing a comprehensive cancer care agenda for children and their families: Institute of Medicine Workshop highlights and next steps
Family; National Academies Of Science; Palliative Care; Quality Of Life; Adult; American Cancer Society/organization & Administration; And Medicine (u.S.) Health And; Child; Education/ Organization & Administration; Engineering; Humans; Medical Oncology; Medicine Division/organization & Administration; Neoplasms/rehabilitation/ Therapy; Psychosocial Support Systems; United States
This article highlights key findings from the "Comprehensive Cancer Care for Children and Their Families" March 2015 joint workshop by the Institute of Medicine (IOM) and the American Cancer Society. This initiative convened more than 100 family members, clinician investigators, advocates, and members of the public to discuss emerging evidence and care models and to determine the next steps for optimizing quality-of-life outcomes and well-being for children and families during pediatric cancer treatment, after treatment completion, and across the life spectrum. Participants affirmed the triple aim of pediatric oncology that strives for every child with cancer to be cured; provides high-quality palliative and psychosocial supportive, restorative, and rehabilitative care to children and families throughout the illness course and survivorship; and assures receipt of high-quality end-of-life care for patients with advancing disease. Workshop outcomes emphasized the need for new pediatric cancer drug development and identified critical opportunities to prioritize palliative care and psychosocial support as an integral part of pediatric cancer research and treatment, including the necessity for adequately resourcing these supportive services to minimize suffering and distress, effectively address quality-of-life needs for children and families at all stages of illness, and mitigate the long-term health risks associated with childhood cancer and its treatment. Next steps include dismantling existing silos and enhancing collaboration between clinical investigators, disease-directed specialists, and supportive care services; expanding the use of patient-reported and parent-reported outcomes; effectively integrating palliative and psychosocial care; and clinical communication skills development. CA Cancer J Clin 2016;66:398-407. (c) 2016 American Cancer Society.
Kirch R; Reaman G; Feudtner C; Wiener L; Schwartz LA; Sung L; Wolfe J
Ca: A Cancer Journal For Clinicians
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3322/caac.21347" target="_blank" rel="noreferrer">10.3322/caac.21347</a>