Do people with multiple sclerosis perceive upper limb improvements from robotic-mediated therapy? A mixed methods study

Multiple sclerosis (MS) is a demyelinating central degenerative nervous system disease causing visual, motor, sensory, cognitive, autonomic dysfunctions (Noseworthy et al., 2000). One main problem faced by people with MS is upper limb dysfunction, experienced by 66% of the population (Spooren et al., 2012, Bertoni et al., 2015). Upper limb dysfunctions are usually caused by muscle weakness, sensory impairment and coordination problems (Lamers et al., 2015). As a result, this has a major impact on their independence during activities of daily living (ADL) (Spooren et al., 2012, Yozbatıran et al., 2006).

Rehabilitation is usually recommended to ensure that people with MS can preserve and retain their level of function. Evidence has also shown the potential of rehabilitation to enhance upper extremity function and activity (Lamers et al., 2016). In the last decade, different technological rehabilitation tools such as virtual reality and robot therapy became more available to improve upper limb dysfunction (Bastiaens et al., 2011) which can be used as adjacent cost-effective therapy modality (Gijbels et al., 2011). Such technological tools could provide highly repetitive movements of the upper limb and accurate feedback on performance which is sometimes difficult to achieve through conventional rehabilitation (Merians et al., 2002, Maggio et al., 2019). With the use of technological devices, there are therefore new opportunities to train and improve upper limb function in people with MS (Maris et al., 2018). A recent study has identified that robot therapy resulted in increased upper limb function and muscle activity in people with MS (Gandolfi et al., 2018). However, there seems to be a lack of strong evidence that robot therapy could be superior on outcome measures of body function and activity level (Gandolfi et al., 2018, Feys et al., 2015). This could be due to the chosen quantitative clinical measures that do not capture all aspects of patients' experiences from an intervention.

Usage and recognition of the value of qualitative research has been increasingly used in neurological rehabilitation research (Kuper et al., 2008, Tedesco Triccas et al., 2018). Qualitative methods such as interviews or focus groups allow for in-depth exploration of the experiences and perceptions of patients, and at the same time could create added knowledge to quantitative methods to improve rehabilitation programs. Patients' perception could also provide user-centered information on why some rehabilitation programs are successful or on those programs which are not (Barker and Brauer, 2005). Views and experiences of upper limb robot therapy have been explored in people with stroke, traumatic brain injury and spinal cord injury (Tedesco Triccas et al., 2018, Louie et al., 2021, Laparidou et al., 2021). Participants felt that robot therapy was engaging, enjoyable and beneficial for their affected arm. In addition to technological challenges, barriers were also encountered by users such as fatigue or difficulty. This type of research is also relevant for multiple sclerosis, as patients may expect rather deterioration of arm function due to the progressive and chronic condition. Mixed methods (Creswell and Hirose, 2019) involving qualitative in addition to quantitative approaches in studying the (subjective) experience of the upper limb or rehabilitation technology in people with MS are rarely used. Very recently, during interviews, two patients with MS also expressed that an upper limb technology-based system called the i-ACT was an added tool in neurological rehabilitation, an alternative system than usual care and that it instilled feelings of motivation (Knippenberg et al., 2021).

Prior to the research presented in this paper, first a pilot RCT was conducted involving 17 people with MS comparing the effects of additional robot-supported training to conventional treatment only (Feys et al., 2015). Additional training consisted of 3 weekly sessions of patients interacting 30 min interacting with the HapticMaster (HM) robot within an individualised virtual learning environment (I-TRAVLE). From the pilot RCT, it was found that three dimensional movement tasks during training, were performed in less time. However, no significant changes for any clinical measure were found in both groups, although observational analyses indicated meaningful improvements on the motor impairments in persons with more marked upper limb dysfunction. Second, an interventional study was conducted in people with MS and stroke with an updated virtual learning environment and with a higher dosage of training (20 h) albeit only partly supervised (Maris et al., 2018). In order to obtain an in-depth view on the potential behavioural effects that occurred from the aforementioned study, identification of the subjective experience of participants was therefore important (Calsius et al., 2015). Therefore, this research embedded in the larger project used quantitative (questionnaires) and qualitative methodologies (focus groups) to address the main research question: ‘how do people with MS experience the 8-weeks I-TRAVLE training of the upper limb with regard to their functioning and what is their appreciation of the training system’.

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