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Background Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease characterized by a progressive paresis of the extremities and the loss of manual functioning. Due to the severe functional impairment that the disease entails, ALS requires the provision of comprehensive nursing care and a complex set of assistive technology devices. To relieve caregivers and promote autonomy of people with ALS, robotic assistance systems are being developed. This trial aims to evaluate the acceptance of technology, in general, and of robotic arm assistance among people with ALS in order to lay the groundwork for the development of a semiautomatic robotic arm that can be controlled by humans via a multimodal user interface and that will allow users to handle objects and attend to their own bodies. Objective The aim of this study was to perform a systematic analysis of technology commitment and acceptance of robotic assistance systems from the perspective of physically limited people living with ALS. Methods The investigation was conducted as a study of a prospective cohort. Participants were only included if they had received a medical diagnosis of ALS. Data collection took place via an online questionnaire on the Ambulanzpartner Soziotechnologie internet platform. Technological commitment was measured using the Neyer short scale. Furthermore, a multidimensional questionnaire was specially developed to analyze participant acceptance of robotic arm assistance: the Acceptance Measure of Robotic Arm Assistance (AMRAA). This questionnaire was accompanied by a video introducing the robot arm. ALS severity was ascertained using the ALS Functional Rating Scale–Extended (ALSFRS-EX). Results A total of 268 people with ALS participated in the survey. Two-thirds of the participants were male. The overall mean ALS severity score was 42.9 (SD 11.7) points out of 60 on the ALSFRS-EX, with the most relevant restrictions on arms and legs (<60% of normal functioning). Technological commitment ranked high, with the top third scoring 47.2 points out of 60. Younger participants and males showed significantly higher values. The AMRAA score was, again, significantly higher among younger participants. However, the gender difference within the overall cohort was not significant. The more limited the arm functioning of participants according to the ALSFRS-EX subscale, the higher the acceptance rate of robotic assistance. This relationship proved significant. Conclusions People with ALS display high technological commitment and feel positive about using technological assistance systems. In our study, younger participants were more open to technology use, in general, and robotic assistance, in particular. Self-appraisal of technology acceptance, competence, and control conviction were generally higher among men. However, any presumed gender difference vanished when users were asked to rate the anticipated usefulness of the technology, in particular the robotic arm. The acceptance was also reflected in users’ increased willingness to use a robotic arm as the functionality of their own arms decreased. From the perspective of people with ALS, robotic assistance systems are critical to promoting individual autonomy. Another key consideration in the development of future assistive technologies should be the reduction of caregiver burden. Trial Registration German Clinical Trials Register DRKS00012803; https://tinyurl.com/w9yzduhd
Objective: Motor-assisted movement exercisers (MME) enable device-assisted physical therapy delivered in domestic settings. This observational study captures the frequency of MME use, subjective experience of the therapy provided and MME recommendation. Method: The prospective cohort study was implemented at ten ALS centres (02/2019-10/2020) and coordinated by the research platform Ambulanzpartner. Participants assessed symptom severity, frequency of use and subjective benefit of therapy on a numerical rating scale (NRS, 0 to 10 points). The likelihood of recommending the MME was determined by the Net Promotor Score (NPS). Results: Data for 144 participants were analysed. Weekly MME applications ranged from 1 to 4 in 41%, 5 to 7 in 42% and >7 in 17% of participants. Particularly positive results were achieved in the following domains: amplification of a sense of achievement (67%), diminution of the feeling of having rigid limbs (63%), diminution of the feeling of being immobile (61%), improvement of general wellbeing (55%) and reduction of muscle stiffness (52%). Participants with more pronounced self-rated muscle weakness were more likely to note a beneficial effect on preservation and improvement of muscle strength under MME treatment (p<0.05). The NPS for the MME was high (+61). Conclusion: High-frequency MME-assisted treatment (defined as a minimum of five sessions a week) was administered in the majority of participants (59%) in addition to physical therapy. Most patients stated to have achieved their individual objectives of MME intervention as evidenced by a high level of satisfaction. The results underline the justification for extended MME treatment as part of the ALS care concept.
Motor-assisted movement exercisers (MME) are devices that assist with physical therapy in domestic settings for people living with ALS. This observational cross-sectional study assesses the subjective experience of the therapy and analyzes users' likelihood of recommending treatment with MME. The study was implemented in ten ALS centers between February 2019 and October 2020, and was coordinated by the research platform Ambulanzpartner. Participants assessed symptom severity, documented frequency of MME use and rated the subjective benefits of therapy on a numerical scale (NRS, 0 to 10 points, with 10 being the highest). The Net Promotor Score (NPS) determined the likelihood of a participant recommending MME. Data for 144 participants were analyzed. Weekly MME use ranged from 1 to 4 times for 41% of participants, 5 to 7 times for 42%, and over 7 times for 17%. Particularly positive results were recorded in the following domains: amplification of a sense of achievement (67%), diminution of the feeling of having rigid limbs (63%), diminution of the feeling of being immobile (61%), improvement of general wellbeing (55%) and reduction of muscle stiffness (52%). Participants with more pronounced self-reported muscle weakness were more likely to note a beneficial effect on the preservation and improvement of muscle strength during MME treatment (p < 0.05). Overall, the NPS for MME was high (+ 61). High-frequency MME-assisted treatment (defined as a minimum of five sessions a week) was administered in the majority of participants (59%) in addition to physical therapy. Most patients reported having achieved their individual therapeutic objectives, as evidenced by a high level of satisfaction with MME therapy. The results bolster the justification for extended MME treatment as part of a holistic approach to ALS care.
BACKGROUND Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease characterized by a progressive paresis of the extremities, and the loss of manual functioning. Due to the severe functional impairment that the disease entails, ALS requires the provision of comprehensive nursing care and a complex of assistive technology devices. To relieve caregivers and promote patient autonomy, robotic assistance systems are being developed. This trial aims to evaluate the acceptance of technology in general and robotic arm assistance among ALS patients in order to lay the groundwork for the development of a semi-automatic robotic arm which can be controlled by patients via a multimodal user interface, and which will allow users to handle objects and attend to their own bodies. OBJECTIVE Systematic analysis of technology commitment and acceptance of robotic assistance systems from the perspective of physically limited ALS patients. METHODS The investigation was conducted as a study of a prospective cohort. Patients were only included if they had received a medical diagnosis of ALS. Data collection took place via an online questionnaire on the Ambulanzpartner Soziotechnologie (APST) Internet platform. Technological commitment was measured using the Neyer short scale (2012). Furthermore, a multidimensional questionnaire was specially developed to analyze patient acceptance of robotic arm assistance (AMRAA). This questionnaire was accompanied by a video introducing the robot arm. ALS severity was ascertained using the extended ALS Functional rating Scale (ALSFRS-EX). RESULTS 268 ALS patients participated in the survey. The mean age at disease onset was 60 years (SD 10.6 years); 67 % (n=180) were male. The ALS severity score was 42.9 out of 60 on the ALSFRS-extended (SD 11.7 points), with the most relevant restrictions on arms and legs (less than 60 % of normal function). Technological readiness ranked high (top third with 47.2 out 0f 60 points). Younger patients (< 60 years; 50 vs. 46 points) and male (49.5 vs. 44 points) reached significantly higher values. The acceptance of robotic arm assistance (AMRAA) was again significantly higher in younger patients (25.5 vs. 16 points; p < .0001). However, the gender difference within the overall cohort was not significant (female/male: 18 vs. 22; p < .208). The acceptance measure was then correlated to the ALSFRS-EX subscale for arm functioning. The more limited the arm functioning, the higher the acceptance rate of robotic assistance. This relationship proved significant. CONCLUSIONS ALS patients display high technological commitment and feel positive about using technological assistance systems. Younger patients are more open towards technology use in general and robotic assistance in particular. Self-appraisal of technology acceptance, competence, and control conviction was generally higher among men. However, any presumed gender difference vanished when users were asked to rate the anticipated usefulness of the technology, in particular the robotic arm. This is also reflected in users’ increased willingness to use a robotic arm as the functionality of their own arms decreased. Seen from the user perspective, there is currently a need for semi-automatic robotic arms in order to support caregivers and to allow patients to maintain their autonomy. These results form a basis on which robotic prototypes for nursing care can be designed. They also highlight the relevance of robotic assistance systems in promoting patient participation and autonomy in ALS assistive devices schemes.
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