Effects of hand-training in persons with myotonic dystrophy type 1 – a randomised controlled cross-over pilot study

Abstract

Purpose: To investigate the effects of a hand-training programme on grip, pinch and wrist force, manual dexterity and activities of daily living, in adults with myotonic dystrophy type 1 (DM1). Method: In this randomised controlled trial with a crossover design, 35 adults with DM1 were, after stratification for grip force, assigned by lot to two groups. Group A started with 12 weeks of hand training, while group B had no intervention. After a wash-out period of 12 weeks, where none received training, the order was reversed. The Grippit® was used as primary outcome measure and the hand-held Microfet2™ myometer, the Purdue Pegboard, the Canadian Occupational Performance Measure (COPM) and the Assessment of Motor and Process Skills (AMPS) were secondary outcome measures. Assessments were performed before and after training and control periods, i.e. four times altogether. Results: Ten persons dropped out and 13 had acceptable adherence. Intention-to-treat analyses revealed significant intervention effects for isometric wrist flexor force (p = 0.048), and for COPM performance (p = 0.047) and satisfaction (p = 0.027). On an individual level, improvements were in general showed after a training period. Conclusion: The hand-training programme had positive effects on wrist flexor force and self-perception of occupational performance, and of satisfaction with performance. No evident detrimental effects were shown.

Implications for Rehabilitation

• Myotonic dystrophy type 1 (DM1) is a slowly progressive neuromuscular disease characterised by myotonia and muscle weakness and wasting.

• People with DM1 are often concerned about their ability to carry out ADL and to participate in, e.g. work, sports and hobbies when they gradually become weaker.

• This pilot study showed that a hand-training programme improved wrist flexor force and self-perception and satisfaction of occupational performance.

• Resistance training of hand muscles with a silicon-based putty can be a therapy option for people with DM1 in clinical practise.

• Activities of daily living
• myotonic dystrophy type 1
• neuromuscular diseases
• occupational therapy
• resistance training

Acknowledgements

Special thanks to Carin Renger, supervising occupational therapist, and Jan Kowalski, statistician.