Targeting mindfulness interventions for people affected by motor neurone disease: consideration of the influence of baseline distress on psychological outcomes

Aims: This study of people with motor neurone disease (MND) and caregivers examined how baseline levels of psychological distress influenced engagement with and psychological responses to a mindfulness intervention. This was with a view to guiding how services can best target mindfulness programs.

Methods: Forty participants completed an MND-adapted four-session mindfulness-based stress reduction intervention (the 'MindfulMND' program). Participants were stratified into high and low distress groups with the Depression subscale of the MND-adapted Hospital Anxiety and Depression Scale (M-HADS). To examine engagement with the intervention, we compared session attendance and mindfulness practice frequency in the high and low distress groups. To examine psychological responses to the mindfulness intervention, we used a single arm waitlist design with assessments at pre-waitlist, pre-intervention, post-intervention and 1-month follow-up. Measures examined psychological distress, quality of life, positive psychological adjustment (benefit finding and post-traumatic growth) and mindfulness.

Results: Forty participants completed the program, with baseline stratification yielding high distress (n=11) and low distress (n=28) groups. Both groups had excellent attendance and engaged well with mindfulness practice, with different patterns of practice over time (percentage of participants per group practicing >=4 times per week during fortnights 1, 2, and 3, respectively: high distress group- 91%, 72%, 66%; low distress group- 77%, 91%, 87%). In the high distress group, pre-post intervention comparisons showed improvements with large effects on measures of psychological distress (Demoralization, Perceived Stress and M-HADS Anxiety scales), quality of life (Global Life Satisfaction item, The Amyotrophic Lateral Sclerosis Specific Quality of Life Instrument-Revised), and positive psychological adjustment (Benefit-Finding Scale). Improvements in psychological adjustment were not evidenced in the low distress group.

Conclusions: Where resources are stretched, targeting mindfulness programs towards MND patients and carers with higher levels of distress may yield the greatest measurable clinical benefit. Screening tools such as the M-HADS may assist in the allocation of psychological services to those affected by MND. It is recommended that mindfulness interventions are modified to support access and engagement for people affected by MND.