A Feasibility study of an Online Mindfulness intervention for Duchenne Muscular Dystrophy

Focus
Mental health issues and bodily pain are prevalent within men and young adults with Duchenne muscular dystrophy (DMD), part of the multifaceted contributory factors to depression, anxiety and ultimately a lower quality of life (QoL). Current standards of care lack evidenced based interventions for participant directed self-management of mental health, pain and QoL. Based on our development of mindfulness-based interventions for health in Spinal cord injury, this project will conduct a within-participant control intervention of mindfulness for pain, depression and anxiety in young adults with DMD. Through stakeholder/participant involvement, we are already co-developing an 8-wk online mindfulness course (Breathworks, UK), which will be refined by the evidence provided in this feasibility study. 

Objectives
1.    To implement an 8-week control period (standard care) in people with DMD, followed by an 8-week online mindfulness intervention.
2.    Test Participants for meaningful outcomes including pain, anxiety, depression and Quality of Life (QoL) at 3 points: pre-control, pre-intervention and post-intervention. 
3.    Undertake semi-structured interviews post-intervention to understand participant experiences and refine the intervention to ensure improved delivery of a subsequent mindfulness randomised control trial.

Outputs
1.    Published research on the impact of mindfulness on pain, mental health and QoL in DMD.
2.    A technical report for Duchenne UK and accessible resources on the study outcomes and possible benefits of mindfulness for men with DMD.
3.    An evidence based, co-developed, mindfulness intervention for mental health and pain in DMD.

Impact
The provision of evidence for, and co-development of, a mindfulness intervention for DMD is the first step in providing wider access to a self-directed, pain and mental-health management tool for DMD. This feasibility study will inform a randomised controlled trial, and through support of stakeholders (e.g. Duchenne UK and The Neuromuscular Centre), access to this intervention for those with DMD who can most benefit.

 

To find out more about this study and to register your interest in taking part, please contact the study team:

Phone: 07882548753

Email: l.staniford@mmu.ac.uk

 

 
Primary Outcome Measures

Questionnaires will assess:
•    Participant demographicss
•    Pain and pain impact (Brief pain inventory)
•    Depression (Beck depression inventory)
•    Anxiety (stait anxiety) 
•    Quality of Life (SF-36)

 
Secondary Outcome Measures

Semi structured interviews will be used to assess participant experiences of the mindfulness course to better understand how they found the course, what worked for them, barriers and facilitators to their mindfulness practice and any outcomes they had experienced in terms of physical and mental health.

 
Can I take part?

 
Inclusion Criteria

 
Exclusion Criteria