Patient experience of chronic illness care and complementary integrative health use: a cross-sectional study of patients with hypermobility spectrum disorders (HSD) and Ehlers–Danlos syndromes (EDS)

References

• Forghani I. Updates in clinical and genetics aspects of hypermobile ehlers danlos syndrome. Balkan Med J. 2019;36(1):12–16.
   PubMed Web of Science ®Google Scholar
• Malek S, Reinhold EJ, Pearce GS. The Beighton score as a measure of generalised joint hypermobility. Rheumatol Int. 2021;41(10):1707–1716.
   PubMed Web of Science ®Google Scholar
• Castori M, Tinkle B, Levy H, et al. A framework for the classification of joint hypermobility and related conditions. Am J Med Genet C Semin Med Genet. 2017;175(1):148–157.
   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
• Levy HP. Hypermobile Ehlers-Danlos Syndrome. 2004 Oct 22 [Updated 2018 Jun 21]. In: Adam MP, Everman DB, Mirzaa GM, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993–2022. Available from: https://www.ncbi.nlm.nih.gov/books/NBK1279/
   Google Scholar
• Castori M. Ehlers-Danlos syndrome, hypermobility type: an underdiagnosed hereditary connective tissue disorder with mucocutaneous, articular, and systemic manifestations. ISRN Dermatol. 2012;2012:751768–751722.
   PubMedGoogle Scholar
• Ehlers-Danlos syndrome - Genetics Home Reference - NIH. [cited 2020 Jul 11]. https://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome#statistics.
   Google Scholar
• Demmler JC, Atkinson MD, Reinhold EJ, et al. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case-control comparison. BMJ Open. 2019;9(11):e031365.
   PubMed Web of Science ®Google Scholar
• Bennett SE, Walsh N, Moss T, et al. Understanding the psychosocial impact of joint hypermobility syndrome and Ehlers–Danlos syndrome hypermobility type: a qualitative interview study. Disabil Rehabil. 2021;43(6):795–804.
   PubMed Web of Science ®Google Scholar
• Halverson CME, Clayton EW, Garcia Sierra A, et al. Patients with Ehlers–Danlos syndrome on the diagnostic odyssey: Rethinking complexity and difficulty as a hero’s journey. Am J Med Genet C Semin Med Genet. 2021;187(4):416–424.
   PubMed Web of Science ®Google Scholar
• Murphy-Ryan M, Psychogios A, Lindor NM. Hereditary disorders of connective tissue: a guide to the emerging differential diagnosis. Genet Med. 2010;12(6):344–354.
   PubMed Web of Science ®Google Scholar
• Hakim AJ, Tinkle BT, Francomano CA. Ehlers-Danlos syndromes, hypermobility spectrum disorders, and associated co-morbidities: reports from EDS ECHO. Am J Med Genet C Semin Med Genet. 2021;187(4):413–415.
   PubMed Web of Science ®Google Scholar
• Voermans NC, Knoop H, Bleijenberg G, et al. Pain in Ehlers-Danlos syndrome is common, severe, and associated with functional impairment. J Pain Symptom Manage. 2010;40(3):370–378.
   PubMed Web of Science ®Google Scholar
• Bovet C, Carlson M, Taylor M. Quality of life, unmet needs, and iatrogenic injuries in rehabilitation of patients with Ehlers–Danlos syndrome hypermobility type/joint hypermobility syndrome. Am J Med Genet A. 2016;170(8):2044–2051.
   PubMed Web of Science ®Google Scholar
• Engelbert RHH, Juul-Kristensen B, Pacey V, et al. The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome. Am J Med Genet C Semin Med Genet. 2017;175(1):158–167.
   PubMed Web of Science ®Google Scholar
• Russek LN, Stott P, Simmonds J. Recognizing and effectively managing hypermobility-related conditions. Phys Ther. 2019;99(9):1189–1200.
   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
• Wade DT, Halligan PW. The biopsychosocial model of illness: a model whose time has come. Clin Rehabil. 2017;31(8):995–1004.
   PubMed Web of Science ®Google Scholar
• Complementary, alternative, or integrative health: What’s in a name? NIH: NCCIH. 2016. https://www.nccih.nih.gov/health/complementary-alternative-or-integrative-health-whats-in-a-name.
   Google Scholar
• National Health Interview Survey 2017 | NCCIH. [cited 2021 Jul 29]. https://www.nccih.nih.gov/research/statistics/nhis/2017.
   Google Scholar
• Koithan M. Introducing complementary and alternative therapies. J Nurse Pract. 2009;5(1):18–20.
   PubMedGoogle Scholar
• Astin JA, Shapiro SL, Eisenberg DM, et al. Mind-body medicine: state of the science, implications for practice. J Am Board Fam Pract. 2003;16(2):131–147.
   PubMedGoogle Scholar
• .Mbizo J, Okafor A, Sutton MA, et al. Complementary and alternative medicine use among persons with multiple chronic conditions: results from the 2012 National Health Interview Survey. BMC Complement Altern Med. 2018;18(1):281. https://doi.org/10.1186/s12906-018-2342-2
   Google Scholar
• Falci L, Shi Z, Greenlee H. Multiple chronic conditions and use of complementary and alternative medicine among us adults: results from the 2012 national health interview survey. Prev Chronic Dis. 2016;13(5):150501. https://doi.org/10.5888/pcd13.150501.
   PubMedGoogle Scholar
• Arthur K, Caldwell K, Forehand S, et al. Pain control methods in use and perceived effectiveness by patients with Ehlers-Danlos syndrome: a descriptive study. Disabil Rehabil. 2016;38(11):1063–1074.
   PubMed Web of Science ®Google Scholar
• Demes JS, McNair B, Taylor MRG. Use of complementary therapies for chronic pain management in patients with reported Ehlers-Danlos syndrome or hypermobility spectrum disorders. Am J Med Genet A. 2020;182(11):2611–2623.
   PubMed Web of Science ®Google Scholar
• Strategic Priorities - The Ehlers Danlos Society : The Ehlers Danlos Society. [cited 2022 Jun 4]. https://www.ehlers-danlos.com/strategic-priorities/.
   Google Scholar
• Research Survey Submission | The Ehlers Danlos Society : The Ehlers Danlos Society. [cited 2020 Jul 12]. https://www.ehlers-danlos.com/research-survey-submission/.
   Google Scholar
• Louie A, Meyerle C, Francomano C, et al. Survey of Ehlers-Danlos patients’ ophthalmic surgery experiences. Mol Genet Genomic Med. 2020;8e1155. https://doi.org/10.1002/mgg3.1155
   PubMed Web of Science ®Google Scholar
• Glasgow RE, Wagner EH, Schaefer J, et al. Development and validation of the patient assessment of chronic illness care (PACIC). Medical Care. 2005;43(5):436–444.
   PubMed Web of Science ®Google Scholar
• Vrijhoef HJM, Berbee R, Wagner EH, et al. Quality of integrated chronic care measured by patient survey: Identification, selection and application of most appropriate instruments. Health Expect. 2009;12(4):417–429.
   PubMed Web of Science ®Google Scholar
• Glasgow RE, Wagner EH, Schaefer J, Mahoney LD, Reid RJ, Greene SM. Development and Validation of the Patient Assessment of Chronic Illness Care (PACIC). Medical Care. 2005;43(5):436–444. https://doi.org/10.1097/01.mlr.0000160375.47920.8c
   Google Scholar
• Fiandt K. The chronic care model: description and application or practice. Top Adv Pract Nur. 2006;6(4):7–14.
   Google Scholar
• Russell E. Glasgow, Holly Whitesides, Candace C. Nelson, Diane K. King; Use of the Patient Assessment of Chronic Illness Care (PACIC) With Diabetic Patients: Relationship to patient characteristics, receipt of care, and self-management. Diabetes Care 1 November 2005; 28 (11): 2655–2661. https://doi.org/10.2337/diacare.28.11.2655
   Google Scholar
• Glasgow RE, Emont S, Miller DC. Assessing delivery of the five “as” for patient-centered counseling. Health Promotion International. 2006;21(3):245–255.
   PubMed Web of Science ®Google Scholar
• Glickman SW, Boulding W, Manary M, et al. Patient satisfaction and its relationship with clinical quality and inpatient mortality in acute myocardial infarction. Circ Cardiovasc Qual Outcomes. 2010;3(2):188–195.
   PubMed Web of Science ®Google Scholar
• Tsai AC, Morton SC, Mangione CM, et al. A meta-analysis of interventions to improve care for chronic illnesses. Am J Manag Care. 2005;11(8):478–488.
   PubMed Web of Science ®Google Scholar
• Coleman K, Austin BT, Brach C, et al. Evidence on the chronic care model in the new millennium: thus far, the evidence on the chronic care model is encouraging, but we need better tools to help practices improve their systems. Health Aff (Millwood). 2009;28(1):75–85.
   PubMed Web of Science ®Google Scholar
• Wensing M, Van Lieshout J, Jung HP, et al. The patients assessment chronic illness care (PACIC) questionnaire in The Netherlands: a validation study in rural general practice. BMC Health Serv Res. 2008;8:182. https://doi.org/10.1186/1472-6963-8-182
   Web of Science ®Google Scholar
• Zeugfang D, Wisetborisut A, Angkurawaranon C, et al. Translation and validation of the PACIC + questionnaire: the Thai version. BMC Fam Pract. 2018;19(1):123.
   PubMedGoogle Scholar
• Cortina J.M. What is coefficient alpha? An examination of theory and applications. J of Appl Psychol. 1993;78(1):98–104. https://doi.org/10.1037/0021-9010.78.1.98
   Google Scholar
• Kalisch L, Hamonet C, Bourdon C, et al. Predictors of pain and mobility disability in the hypermobile Ehlers-Danlos syndrome. Disabil Rehabil. 2020;42(25):3679–3686.
   PubMed Web of Science ®Google Scholar
• De Wandele I, Rombaut L, Malfait F, et al. Clinical heterogeneity in patients with the hypermobility type of Ehlers-Danlos syndrome. Res Dev Disabil. 2013;34(3):873–881.
   PubMed Web of Science ®Google Scholar
• Simmonds J v. Advances in assessment of hypermobility-related disorders. Am J Med Genet. 2021;187(4):453–457.
   PubMed Web of Science ®Google Scholar
• Hamonet C, Brissot R, Gompel AA, et al. Ehlers-Danlos syndrome (EDS) - contribution to clinical diagnosis - a prospective study of 853 patients. EC Neurology. 2018;10(6):428–439.
   Google Scholar
• Schubart JR, Bascom R, Francomano CA, et al. Initial description and evaluation of EDS ECHO: an international effort to improve care for people with the Ehlers-Danlos syndromes and hypermobility spectrum disorders. Am J Med Genet C Semin Med Genet. 2021;187(4):609–615.
   PubMed Web of Science ®Google Scholar
• The Challenges of Living with a Rare Disorder - Professor Fransiska Malfait | English (EN) - YouTube. [cited 2021 Aug 16]. https://www.youtube.com/watch?v=z1TGXh4V_RE.
   Google Scholar
• Zhang H, Griswold BF, Sloper L, et al. High prevalence of Food Allergies in Patients with Ehlers-Danlos Syndromes. Presented at the 63rd Annual Meeting of The American Society of Human Genetics, October 23-27 in San Diego, CA. https://www.ashg.org/wp-content/uploads/2020/07/2007-allabstracts.pdf
   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