Telerehabilitation Hand Training for Patients With Neuromuscular Conditions

Introduction The importance of rehabilitation and physiotherapy for patients suffering from muscle diseases and neuropathy has already been highlighted by numerous studies. Since many patients live far from specialized centers and face mobility constraints, attending center-based, in-person physiotherapy sessions is highly challenging. Social isolation and the fear of falling further hinder participation in exercise programs.

Telerehabilitation dates back a few decades, but its implementation via videoconferencing platforms (e.g., Zoom, Skype, Google Meet, Teams, etc.) has begun to expand rapidly since the COVID-19 pandemic, approximately 3-4 years ago, when these platforms became widely adopted across schools and workplaces. Today, the widespread availability of smartphones and other computing devices in Hungary allows patients living far from specialized centers to join physiotherapy sessions remotely through these channels.

Due to the novelty of this method, examples and protocols are scarce and remain to be developed. Ensuring safety and preventing or, if necessary, managing falls and injuries is of paramount importance during physiotherapy. Therefore, when introducing this method, an area was selected where the likelihood of such incidents is minimal: hand exercises, which patients can perform while seated. At the same time, weakness in the distal hand muscles can be a severely limiting factor in daily life; thus, improving hand dexterity can lead to an enhanced quality of life.

The benefit of small-group sessions (5-7 patients per group) may include a reduction in social isolation, and a supportive environment could encourage the integration of more physical activity into daily life. (This was also observed during a previous study involving a 3-week treatment program in a rehabilitation hospital with small patient groups). Consequently, rest periods during the videoconference sessions will be utilized to incorporate opportunities for conversation, social connection, health education, and motivation for physical activity. Furthermore, alongside hand function assessments, tests evaluating quality of life, fatigue, and daily functioning have been integrated into the evaluation battery.

In the first phase of the planned study, the intention is to invite 12-14 patients managed in Pécs, primarily those suffering from myotonic dystrophy type 1 (DM1). The objective of this phase is to test and fine-tune the method. Plans are in place to expand the scope of the study based on these initial experiences.

Study Objectives Primary objective To improve the hand function and manual dexterity of participating patients, thereby enhancing participation in daily life and overall quality of life.

Secondary objectives

1. To develop a videoconferencing-based physiotherapy methodology and adapt it to local conditions.
2. To prepare for a subsequent study involving a larger patient cohort. Study Design Patients will be invited via telephone from the cohort currently managed in Pécs.

The assessments required for the study (baseline, interim, and post-intervention data collection, as well as data processing) will take place at the Department of Neurology, Clinical Center, University of Pécs. The manipulation-developing hand training will be conducted via videoconferencing (e.g., Google Meet or Zoom), with patients participating in these sessions by logging in from home.

Following the provision of patient information and the signing of the informed consent form, baseline assessments in Pécs will include verifying whether patients can effectively use the videoconferencing platform. Baseline clinical assessments (detailed below) will then be performed, comprising motion evaluations (e.g., the 9-Hole Peg Test) in addition to questionnaires. Next, patients will be randomly allocated into two groups. After the first group completes the 12-week videoconference-assisted physiotherapy program, assessments will be repeated in Pécs. This will be followed by the 12-week physiotherapy program for the second group (planned with a 2-to-6-week delay), which will also be followed by post-intervention assessments (crossover study design). During the intervention and the weeks following it, patients will be asked to maintain a simple physical activity diary (for 2x2 weeks).

The first phase of the study is scheduled to begin in the spring of 2024. The group physiotherapy will last for 12 weeks, encompassing two or three sessions per week, with a duration of 45-60 minutes per session.

During the assessments, hand muscle strength (MRC scale, grip force, and pinch force), hand and arm dexterity (9HPT, Box and Blocks test), and walking ability (6/2-minute walk test) will be evaluated. Self-administered (and to a small extent, investigator-administered) questionnaires will be used to assess hand dexterity and hand use (DASH, Cochin, ACTIVLIM, ABILHAND), subjective balance confidence and fear of falling (FES-I, ABC), quality of life (SF-36, INQoL), mood and perception of fatigue (Beck Depression Inventory, FSS), as well as DM1-specific scales (MIRS, DM1 Disability Scale, and DM1-Active).

Each physiotherapy session will last 60 minutes. Following a brief opening circle, the plan is to conduct 2-3 blocks of 10-15 minutes of guided hand training, primarily utilizing therapeutic putty with resistance levels tailored to muscle strength, alongside other simple tools (e.g., pencils, ping-pong balls). During the breaks, brief informational segments aimed at health education and encouraging physical activity will be provided, and feedback will be requested regarding recent experiences and perceptions related to exercise.

Methodology and Study Organization The study is open-label, non-invasive, prospective, and features a crossover design. The methods and procedures directly involving patients do not exceed the scope of routine, protocol-based clinical care.

The "9-Hole Peg Test" and a hand function assessment scale (DASH or Cochin) have been selected as primary endpoints; all other assessments will be considered secondary endpoints.