Pilot study of an online-delivered mindfulness meditation in Ehlers-Danlos syndrome (hEDS): effect on quality-of-life and participant lived experience.
Paul Lattimore, Fay Harrison
Disability and Rehabilitation November 1, 2023 DOI: 10.1080/09638288.2022.2140843 (opens in new tab)
Study at a glance
AI-extracted from the abstract| Characteristics | Pre-post design Pilot study Peer reviewed |
|---|---|
| Sample size | 157 |
| Population | People with Ehlers-Danlos syndromes recruited from UK EDS charities mailing lists |
| Duration | Two-week intervention |
| Topics | Meditation |
| Keywords | Ehlers-danlos Pain Quality-of-life |
| Key points | Daily mindfulness meditation for two weeks improved the SF-36 mental component summary score with a clinically important medium effect size in people with EDS. |
Abstract
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. 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. 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. 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 rehabilitationMindfulness-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.
Comparable studies
Other non-randomized and open-label trials on meditation, most cited first.
| Study | Year | Design | Participants |
|---|---|---|---|
| Mindfulness-Based Stress Reduction in Relation to Quality of Life, Mood, Symptoms of Stress, and Immune Parameters in Breast and Prostate Cancer Outpatients Early-stage breast and prostate cancer patients | 2003 | Pre-post intervention study | n = 59 |
| Exploring self‐compassion and empathy in the context of mindfulness‐based stress reduction (MBSR) Community sample | 2010 | Pre-post intervention study | |
| Mindfulness-Based Stress Reduction Lowers Psychological Distress In Medical Students Second-year medical students | 2003 | Prospective nonrandomized cohort-controlled study | n = 302 |
| Intensive meditation training, immune cell telomerase activity, and psychological mediators. Retreat participants and matched controls | 2011 | Controlled trial with wait-list control group | n = 60 |
| The Effectiveness of Mindfulness Training for Children with ADHD and Mindful Parenting for their Parents Children aged 8-12 with ADHD and their parents | 2011 | Within-group waitlist controlled trial | n = 22 |
Citations in the library
Cites 4
- Neural mechanisms of attentional control in mindfulness meditation Frontiers in Neuroscience 2013
- Mindfulness meditation–based pain relief: a mechanistic account Annals of the New York Academy of Sciences June 1, 2016
- Differential efficacy between cognitive-behavioral therapy and mindfulness-based therapies for chronic pain: Systematic review International Journal of Clinical and Health Psychology October 23, 2020
- Mindfulness Meditation for Chronic Pain: Systematic Review and Meta-analysis Annals of Behavioral Medicine September 22, 2016