Beighton P, De Paepe A, Steinmann B, Tsipouras P, Wenstrup RJ. Ehlers-Danlos syndromes: revised nosology, Villefranche, 1997. Ehlers-Danlos National Foundation (USA) and Ehlers-Danlos Support Group (UK). Am J Med Genet. 1998;77(1):31–7.
Article CAS PubMed Google Scholar
Tinkle B, Castori M, Berglund B, Cohen H, Grahame R, Kazkaz H, 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.
Voermans NC, Knoop H, Bleijenberg G, van Engelen BG. Pain in Ehlers-Danlos syndrome is common, severe, and associated with functional impairment. J Pain Symptom Manage. 2010;40(3):370–8.
Brady AF, Demirdas S, Fournel-Gigleux S, Ghali N, Giunta C, Kapferer-Seebacher I, et al. The Ehlers-Danlos syndromes, rare types. Am J Med Genet C Semin Med Genet. 2017;175(1):70–115.
Grahame R. Hypermobility: an important but often neglected area within rheumatology. Nat Clin Pract Rheumatol. 2008;4(10):522–4.
Castori M, Morlino S, Celletti C, Celli M, Morrone A, Colombi M, et al. Management of pain and fatigue in the joint hypermobility syndrome (aka Ehlers–Danlos syndrome, hypermobility type): principles and proposal for a multidisciplinary approach. Am J Med Genet Part A. 2012;158(8):2055–70.
Adib N, Davies K, Grahame R, Woo P, Murray K. Joint hypermobility syndrome in childhood. A not so benign multisystem disorder? Rheumatology. 2005;44(6):744–50.
Article CAS PubMed Google Scholar
Voermans NC, Knoop H. Both pain and fatigue are important possible determinants of disability in patients with the Ehlers-Danlos syndrome hypermobility type. Disabil Rehabil. 2011;33(8):706–7.
Williams SE, Tran ST, Lynch-Jordan A, Goldschneider KR, Ting TV, Kashikar‐Zuck S, et al. Healthcare utilization among youth with Ehlers–Danlos syndrome hypermobile type. Am J Med Genet Part A. 2022;188(4):1109–17.
Hamonet CSP, Bezire P, Ducret L, Brissot R. Cognitive and psychopathological aspects of Ehlers-Danlos syndrome - experience in a specialized medical consultation. Res Adv Brain Disorders Therapy 2018;104.
Anderson LK, Lane KR. The diagnostic journey in adults with hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders. J Am Association Nurse Practitioners. 2022;34(4):639–48.
Wright LJ, Afari N, Zautra A. The Illness uncertainty concept: a review. Curr Pain Headache Rep. 2009;13:133–8.
Reich JW, Johnson LM, Zautra AJ, Davis MC. Uncertainty of Illness relationships with mental health and coping processes in fibromyalgia patients. J Behav Med. 2006;29(4):307–16.
Johnson LM, Zautra AJ, Davis MC. The role of Illness uncertainty on coping with fibromyalgia symptoms. Health Psychol. 2006;25(6):696–703.
Article PubMed PubMed Central Google Scholar
Braden CJ. A test of the self-help model: learned response to chronic Illness experience. Nurs Res. 1990;39(1):42–7.
Article CAS PubMed Google Scholar
Landis B. Uncertainty, spiritual well-being, and psychosocial adjustment to chronic Illness. Issues Ment Health Nurs. 1996;17(3):217–31.
Article CAS PubMed Google Scholar
Christman NJ. Uncertainty and adjustment during radiotherapy. Nurs Res. 1990;39(1):17–20.
Article CAS PubMed Google Scholar
Mishel MH, Hostetter T, King B, Graham V. Predictors of psychosocial adjustment in patients newly diagnosed with gynecological cancer. LWW; 1984. pp. 291–300.
MISHEL MH, SORENSON DS. Uncertainty in gynecological cancer: a test of the mediating functions of mastery and coping. Nurs Res. 1991;40(3):167–71.
Article CAS PubMed Google Scholar
Mullins LL, Chaney JM, Hartman VL, Albin K, Miles B, Roberson S. Cognitive and affective features of postpolio syndrome: Illness uncertainty, attributional style, and adaptation. Int J Rehabilitation Health. 1995;1:211–22.
Sanders-Dewey NE, Mullins LL, Chaney JM. Coping style, perceived uncertainty in Illness, and distress in individuals with Parkinson’s Disease and their caregivers. Rehabil Psychol. 2001;46(4):363.
Mullins LL, Cote MP, Fuemmeler BF, Jean VM, Beatty WW, Paul RH. Illness intrusiveness, uncertainty, and distress in individuals with multiple sclerosis. Rehabil Psychol. 2001;46(2):139.
Wineman NM, Schwetz KM, Goodkin DE, Rudick RA. Relationships among Illness uncertainty, stress, coping, and emotional well-being at entry into a clinical drug trial. Appl Nurs Res. 1996;9(2):53–60.
Article CAS PubMed Google Scholar
Mast ME. Adult uncertainty in illness: A critical review of research. Scholarly inquiry for nursing practice. 1995;9:3-.
McCormick KM. A concept analysis of uncertainty in Illness. J Nurs Scholarsh. 2002;34(2):127–31.
Mishel MH. The measurement of uncertainty in Illness. Nurs Res. 1981;30(5):258–63.
Article CAS PubMed Google Scholar
Heidlebaugh AR. Illness identity and psychological adaptation in individuals with hypermobile ehlers danlos syndrome or hypermobility spectrum disorder. Johns Hopkins University; 2020.
Bennett SE, Walsh N, Moss T, Palmer S. 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.
Green BN, Johnson CD, Adams A. Writing narrative literature reviews for peer-reviewed journals: secrets of the trade. J Chiropr Med. 2006;5(3):101–17.
Article PubMed PubMed Central Google Scholar
Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8(1):19–32.
Tanna V, Heathcote LC, Heirich MS, Rush G, Neville A, Noel M et al. Something else going on? Diagnostic uncertainty in children with Chronic Pain and their parents. Child (Basel). 2020;7(10).
Neville A, Jordan A, Beveridge JK, Pincus T, Noel M. Diagnostic uncertainty in Youth with Chronic Pain and their parents. J Pain. 2019;20(9):1080–90.
Shayer M, Küchemann D, Wylam H. The distribution of piagetian stages of thinking in British middle and secondary school children. Br J Educ Psychol. 1976;46(2):164–73.
Becker WC, Dorflinger L, Edmond SN, Islam L, Heapy AA, Fraenkel L. Barriers and facilitators to use of non-pharmacological treatments in chronic pain. BMC Fam Pract. 2017;18(1):41.
Article PubMed PubMed Central Google Scholar
Neville A, Kopala-Sibley DC, Soltani S, Asmundson GJG, Jordan A, Carleton RN, et al. A longitudinal examination of the interpersonal fear avoidance model of pain: the role of intolerance of uncertainty. Pain. 2021;162(1):152–60.
Ploghaus A, Narain C, Beckmann CF, Clare S, Bantick S, Wise R, et al. Exacerbation of pain by anxiety is associated with activity in a hippocampal network. J Neurosci. 2001;21(24):9896–903.
Article CAS PubMed PubMed Central Google Scholar
Rhudy JL, Meagher MW. Fear and anxiety: divergent effects on human pain thresholds. Pain. 2000;84(1):65–75.
Sawamoto N, Honda M, Okada T, Hanakawa T, Kanda M, Fukuyama H, et al. Expectation of pain enhances responses to nonpainful somatosensory stimulation in the anterior cingulate cortex and parietal operculum/posterior insula: an event-related functional magnetic resonance imaging study. J Neurosci. 2000;20(19):7438–45.
Article CAS PubMed PubMed Central Google Scholar
Kohn A, Chang C. The relationship between Hypermobile Ehlers-Danlos syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and mast cell activation syndrome (MCAS). Clin Rev Allergy Immunol. 2020;58(3):273–97.
Malfait F, Francomano C, Byers P, Belmont J, Berglund B, Black J, et al. The 2017 international classification of the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017;175(1):8–26.
Al-Rawi ZS, Al-Aszawi AJ, Al-Chalabi T. Joint mobility among university students in Iraq. Br J Rheumatol. 1985;24(4):326–31.
Article CAS PubMed Google Scholar
Acasuso Diaz M, Collantes Estevez E, Sanchez Guijo P. Joint hyperlaxity and musculoligamentous lesions: study of a population of homogeneous age, sex and physical exertion. Br J Rheumatol. 1993;32(2):120–2.
Article CAS PubMed Google Scholar
Klemp P, Learmonth ID. Hypermobility and injuries in a professional ballet company. Br J Sports Med. 1984;18(3):143–8.
Article CAS PubMed PubMed Central Google Scholar
Clinch J, Deere K, Sayers A, Palmer S, Riddoch C, Tobias JH, et al. Epidemiology of generalized joint laxity (hypermobility) in fourteen-year-old children from the UK: a population-based evaluation. Arthritis Rheum. 2011;63(9):2819–27.
Comments (0)