Pilot study of an online-delivered mindfulness meditation in Ehlers-Danlos syndrome (hEDS): effect on quality-of-life and participant lived experience

Abstract

Purpose Ehlers-Danlos syndromes (EDS) are connective tissue disorders with multi-systemic symptoms. Management of chronic pain and other symptoms of EDS is a challenge for patients and clinicians. Mindfulness-based approaches for chronic pain produce improvement in pain symptoms. Mindfulness meditation could be an acceptable and readily accessible therapy for pain in EDS. This study evaluated the effect of daily practice of mindfulness meditation on pain experience and quality-of-life in EDS. Materials and methods A pre-post design enabled assessment of change in quality-of-life (SF-36) after practicing internet-delivered mindful meditation for two weeks. Thematic analysis of interviews (n = 10) documented lived experience of meditation practice for pain symptoms. One hundred fifty-seven were recruited from UK EDS charities mailing lists. Seventy six completed the two-week intervention. Results There was a statistically significant improvement in the SF-36 mental component summary score of medium effect size; the change was clinically important. Thematic analysis revealed three key themes of lived experience relating to increased body awareness, reduction in pain intensity, and barriers to practicing meditation. Conclusions This study provides novel evidence about the effect and experience of meditation for symptoms in people with EDS. The outcomes warrant further research with appropriate control groups to determine efficacy. Implications for rehabilitation Mindfulness-based interventions are effective for chronic pain relief. Hypermobile Ehlers–Danlos syndrome (hEDS) patients experience chronic pain that affects quality-of-life. Online-delivered mindfulness meditation was clinically significant in reducing pain intensity and improving quality-of-life outcomes. hEDS patients found the online-delivered intervention acceptable and recommended development to make it flexible to meet their specific needs by varying types and duration of meditations offered.