Innovative Medical Technology and the Treatment Decision-Making Process in Multiple Sclerosis: A Focus Group Study to Examine Patient Perspectives

Abstract

Background Disease-modifying therapies are given to people with multiple sclerosis (MS) to reduce disease progression and relapse frequency. Current modes of administration include oral, injectable and infusion therapy and the treatment decision-making process is complex. A novel mode of treatment administration, an implantable device, is currently under development, yet patient attitudes about the device are unknown. The aim of this study was 1) to understand the treatment decision-making process from the patient perspective and 2) to explore the possible acceptance of an implant to treat MS. Methods Focus groups with people with MS were conducted in the Netherlands. Three topics were addressed: the treatment decision-making process, the current treatment landscape, and attitudes about the implantable device. All focus groups were recorded and transcribed and data were analyzed by raw data coding and creating themes. An online survey was conducted in the Netherlands to quantify interest in an implant. Results Two focus group sessions were held (n=16 participants) and n=93 persons filled out the survey. The main theme that emerged was the constant uncertainty persons with MS face throughout their disease course and during treatment decisions (when to start, stop, continue or switch treatment). Patients were generally positive towards the implant but felt that efficacy and safety should be guaranteed. Conclusion People with MS want some form of control over their disease and treatment course. New medical technologies, such as an implant, may enhance the treatment landscape and with caution we postulate that it may be accepted by patients as a new mode of administration, though further research is needed. For medical technologies to be successful, patients should be engaged early on in the design process.

Determinants of chronic disease acceptance

“…The importance of disease acceptance is extremely important in the course of treatment, and therefore its assessment, in the opinion of researchers, should be a constant element during the patient's follow-up visit [18], similarly to the assessment of experienced emotions. The progress of medicine allows the implementation of different methods or the improvement of those already existing, providing optimal comfort and effectiveness of treatment [34], but it is the patient who ultimately decides to undertake treatment and chooses from the proposed methods the one that in his/her opinion seems to be the best.…”

A reaction time deficit in virtual tasks may be related to delayed neuronal impulse or depression in patients with multiple sclerosis

“…Although VR is used in rehabilitation, little is known about the influence of fatigue, anxiety and depression on virtual task (VT) performance in people with MS. [17, 18, 19, 21, 22, 23, 24]…”

“…Rehabilitation programs have used virtual reality (VR) to monitor, control, maintain or improve functionality and increase transfer from virtual to reality. [11,12,13,14,15,16] Although VR is used in rehabilitation, little is known about the influence of fatigue, anxiety and depression on virtual task (VT) performance in people with MS. [17,18,19,21,22,23,24] The objective of this study was to evaluate the reaction time in MS patients and the interference of fatigue, anxiety and depression in performing VT. The hypothesis was fatigue, anxiety and depression will reduce VT performance in the MS group (GMS) and the control group (GC).…”

“…[8,9,10,20,21] Fatigue, scored in MFIS, has not been shown to interfere with VT. [6,20,31] Few studies address the relationship between fatigue, anxiety and depression in VT and MS. Perhaps due to the lack of standardization of anxiety and depression assessment instruments in MS or because the symptoms are less noticeable or are confused with the symptoms of fatigue. [1,2,8,9,10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,26,32,33,34,35]…”