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

References

• Tinkle B, Castori M, Berglund B, et al. Hypermobile Ehlers-Danlos syndrome (a.k.a. Ehlers-Danlos syndrome type III and Ehlers-Danlos syndrome hypermobility type): clinical description and natural history. Am J Med Genet C Semin Med Genet. 2017;175(1):48–69.
   PubMed Web of Science ®Google Scholar
• Malfait F, Francomano C, Byers P, et al. The 2017 international classification of the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017;175(1):8–26.
   PubMed Web of Science ®Google Scholar
• Voermans NC, Knoop H, van de Kamp N, et al. Fatigue is a frequent and clinically relevant problem in Ehlers-Danlos syndrome. Semin Arthritis Rheum. 2010;40(3):267–274.
   PubMed Web of Science ®Google Scholar
• Castori M. Pain in Ehlers-Danlos syndromes: manifestations, therapeutic strategies and future perspectives. Expert Opin Orphan D. 2016;4(11):1145–1158.
   Web of Science ®Google Scholar
• Chopra P, Tinkle B, Hamonet C, et al. Pain management in the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017;175(1):212–219.
   PubMed Web of Science ®Google Scholar
• Reychler G, De Backer MM, Piraux E, et al. Physical therapy treatment of hypermobile Ehlers-Danlos syndrome: a systematic review. Am J Med Genet. 2021;185(10):2986–2994.
   PubMed Web of Science ®Google Scholar
• Linton SJ, Shaw WS. Impact of psychological factors in the experience of pain. Phys Ther. 2011;91(5):700–711.
   PubMed Web of Science ®Google Scholar
• Ehde DM, Dillworth TM, Turner JA. Cognitive-behavioral therapy for individuals with chronic pain efficacy, innovations, and directions for research. Am Psychol. 2014;69(2):153–166.
   PubMed Web of Science ®Google Scholar
• Baeza-Velasco C, Bulbena A, Polanco-Carrasco R, et al. Cognitive, emotional, and behavioral considerations for chronic pain management in the Ehlers-Danlos syndrome hypermobility-type: a narrative review. Disabil Rehabil. 2019;41(9):1110–1118.
   PubMed Web of Science ®Google Scholar
• Pardos-Gascon EM, Narambuena L, Leal-Costa C, et al. Differential efficacy between cognitive-behavioral therapy and mindfulness-based therapies for chronic pain: Systematic review. Int J Clin Hlth Psyc. 2021;21(1):1–17.
   Web of Science ®Google Scholar
• Day MA. Mindfulness-based cognitive therapy for chronic pain: a clinical manual and guide. Chichester: John Wiley & Sons Inc.; 2017.
   Google Scholar
• Hilton L, Hempel S, Ewing BA, et al. Mindfulness meditation for chronic pain: systematic review and meta-analysis. Ann Behav Med. 2017;51(2):199–213.
   PubMed Web of Science ®Google Scholar
• Kabat-Zinn J. Mindfulness-based interventions in context: past, present, and future. Clin Psychol-Sci Pr. 2003;10(2):144–156.
   Web of Science ®Google Scholar
• Malinowski P. Neural mechanisms of attentional control in mindfulness meditation. Front Neurosci-Switz. 2013;7:1–11.
   PubMed Web of Science ®Google Scholar
• Zeidan F, Vago DR. Mindfulness meditation-based pain relief: a mechanistic account. Ann N Y Acad Sci. 2016;1373(1):114–127.
   PubMedGoogle Scholar
• Kabat-Zinn J. Full catastrophe living: using the wisdom of your body and mind to face stress, pain, and illness. Rev. ed. New York (NY): Bantam Books Trade Paperback; 2013.
   Google Scholar
• Parikh SV, Huniewicz P. E-health: an overview of the uses of the internet, social media, apps, and websites for mood disorders. Curr Opin Psychiatry. 2015;28(1):13–17.
   PubMed Web of Science ®Google Scholar
• Williams M, Penman D. Mindfulness: a practical guide to finding peace in a frantic world. St Ives: Piatkus; 2011.
   Google Scholar
• Ware JE. SF-36 health survey update. Spine. 2000;25(24):3130–3139.
   PubMed Web of Science ®Google Scholar
• Ware JE, Kosinski M, Dewey JE. How to score version two of the SF-36 health survey. Lincoln (RI): Quality Metric Incorporated; 2000.
   Google Scholar
• Chan EKH, Zumbo BD, Zhang W, et al. Medical outcomes study short form-36 (SF-36) and the World Health Organization quality of life (WHOQoL) assessment: reporting of psychometric validity evidence. Soc Indic Res Ser. 2014;54:243–255.
   Google Scholar
• Cohen J. Statistical power analysis for the behavioral sciences. 2nd ed. Hillsdale (NJ): Lawrence Erlbaum Associates; 1988.
   Google Scholar
• Norman GR, Sloan JA, Wyrwich KW. Interpretation of changes in health-related quality of life - the remarkable universality of half a standard deviation. Med Care. 2003;41(5):582–592.
   PubMed Web of Science ®Google Scholar
• Braun V, Clarke V. Successful qualitative research: a practical guide for beginners. Los Angeles (CA): SAGE; 2013.
   Google Scholar
• Braun V, Clarke V. What can "thematic analysis" offer health and wellbeing researchers? Int J Qual Stud Heal. 2014;9:1–2.
   Web of Science ®Google Scholar
• Ogura K, Yakoub MA, Christ AB, et al. What are the minimum clinically important differences in SF-36 scores in patients with orthopaedic oncologic conditions? Clin Orthop Relat Res. 2020;478(9):2148–2158.
   PubMed Web of Science ®Google Scholar
• Brigden A, Parslow RM, Gaunt D, et al. Defining the minimally clinically important difference of the SF-36 physical function subscale for paediatric CFS/ME: triangulation using three different methods. Health Qual Life Out. 2018;16:1–7.
   PubMed Web of Science ®Google Scholar
• Bowling A, Bond M, Jenkinson C, et al. Short form 36 (SF-36) health survey questionnaire: which normative data should be used? Comparisons between the norms provided by the omnibus survey in Britain, the Health Survey for England and the Oxford Healthy Life Survey. J Public Health Med. 1999;21(3):255–270.
   PubMedGoogle Scholar
• Molander P, Novo M, Hallstam A, et al. Ehlers-Danlos syndrome and hypermobility syndrome compared with other common chronic pain diagnoses-a study from the Swedish quality registry for pain rehabilitation. J Clin Med. 2020;9(7):1–16.
   Web of Science ®Google Scholar