{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,10]],"date-time":"2025-10-10T00:54:49Z","timestamp":1760057689593,"version":"build-2065373602"},"reference-count":37,"publisher":"MDPI AG","issue":"2","license":[{"start":{"date-parts":[[2025,2,15]],"date-time":"2025-02-15T00:00:00Z","timestamp":1739577600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Brain Sciences"],"abstract":"<jats:p>Background: Hypermobility Ehlers\u2013Danlos syndrome (hEDS) is a clinical condition characterized by hypermobility and tissue fragility and is associated with chronic pain. The present study aimed to investigate the associations between affect regulation, pain perception, and psychophysical dimensions as well as alexithymic characteristics in the pathological range. Methods: Twenty-five hEDS patients completed a socio-anamnestic questionnaire as well as the Brief Pain Inventory (BPI), the 36-Item Short Form Survey (psychophysical health), the Difficulties in Emotion Regulation Scale (DERS), and the 20-item Toronto Alexithymia Scale (affect regulation). Results: Correlational analysis showed several negative significant associations between the SF-36, DERS, and TAS-20. The BPI showed few significant associations with both affect regulation measures. Moreover, a relationship between psychological dimensions and the time since diagnosis emerged. A total of 28% of participants reported TAS-20 scores in the clinical range and 36% reported scores in the borderline area. Discussion: Patients with hEDS seem to show high alexithymia levels; pain seems to interfere with the practical aspects of daily life and may reduce an individual\u2019s awareness of their emotional capabilities. The perception of heightened pain has a stronger impact on emotional resources when it interferes with affective life than when it interferes with practical life. Finally, delayed diagnoses of hEDS entail psychological consequences such as alexithymia. Conclusions: The present findings highlight the importance of promoting affect regulation capabilities through the implementation of psychological intervention programs for patients suffering from this medical condition.<\/jats:p>","DOI":"10.3390\/brainsci15020202","type":"journal-article","created":{"date-parts":[[2025,2,17]],"date-time":"2025-02-17T04:40:25Z","timestamp":1739767225000},"page":"202","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Affect Regulation Capabilities in Hypermobility Ehlers Danlos Syndrome: Exploring the Associations with Pain Perception and Psychophysical Health"],"prefix":"10.3390","volume":"15","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0268-4026","authenticated-orcid":false,"given":"Filippo","family":"Camerota","sequence":"first","affiliation":[{"name":"Physical Medicine and Rehabilitation Division, Umberto I University Hospital, 00161 Rome, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5952-3525","authenticated-orcid":false,"given":"Rachele","family":"Mariani","sequence":"additional","affiliation":[{"name":"Department of Dynamic and Clinical Psychology and Health Studies, Sapienza University of Rome, Via degli Apuli 1, 00185 Rome, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Giada","family":"Petronelli","sequence":"additional","affiliation":[{"name":"Physical Medicine and Rehabilitation Division, Sapienza University of Rome, 00185 Rome, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Beatriz","family":"Rabissi","sequence":"additional","affiliation":[{"name":"Department of Dynamic and Clinical Psychology and Health Studies, Sapienza University of Rome, Via degli Apuli 1, 00185 Rome, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0004-9438-1437","authenticated-orcid":false,"given":"Marta Anna Stella","family":"Vizzini","sequence":"additional","affiliation":[{"name":"Department of Dynamic and Clinical Psychology and Health Studies, Sapienza University of Rome, Via degli Apuli 1, 00185 Rome, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michela","family":"Di Trani","sequence":"additional","affiliation":[{"name":"Department of Dynamic and Clinical Psychology and Health Studies, Sapienza University of Rome, Via degli Apuli 1, 00185 Rome, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Valentina","family":"Roselli","sequence":"additional","affiliation":[{"name":"Department of Neurosciences and Mental Health, Umberto I Policlinic, 00185 Rome, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3959-8137","authenticated-orcid":false,"given":"Massimo","family":"Pasquini","sequence":"additional","affiliation":[{"name":"Department of Human Neurosciences, Sapienza University of Rome, 00185 Rome, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8553-4444","authenticated-orcid":false,"given":"Alessia","family":"Renzi","sequence":"additional","affiliation":[{"name":"Department of Dynamic and Clinical Psychology and Health Studies, Sapienza University of Rome, Via degli Apuli 1, 00185 Rome, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7154-5882","authenticated-orcid":false,"given":"Claudia","family":"Celletti","sequence":"additional","affiliation":[{"name":"Department of Life Science, Health, and Health Professions, Link Campus University, 00165 Rome, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2025,2,15]]},"reference":[{"key":"ref_1","first-page":"235","article-title":"Genetic diagnosis of the Ehlers-Danlos syndromes","volume":"36","author":"Zschocke","year":"2024","journal-title":"Med. Genet."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"8","DOI":"10.1002\/ajmg.c.31552","article-title":"The 2017 International Classification of the Ehlers-Danlos syndromes","volume":"175","author":"Malfait","year":"2017","journal-title":"Am. J. Med. Genet. C Semin. Med. Genet."},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"696","DOI":"10.1016\/j.ajhg.2018.02.018","article-title":"Bi-allelic alterations in AEBP1 lead to defective collagen assembly and connective tissue structure resulting in a variant of Ehlers-Danlos syndrome","volume":"102","author":"Blackburn","year":"2018","journal-title":"Am. J. Hum. Genet."},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"1929","DOI":"10.1093\/pm\/pnaa038","article-title":"Pain due to Ehlers-Danlos Syndrome Is Associated with Deficit of the Endogenous Pain Inhibitory Control","volume":"21","author":"Leone","year":"2020","journal-title":"Pain Med."},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"631","DOI":"10.1007\/s00296-013-2901-2","article-title":"Unexpected association between joint hypermobility syndrome\/Ehlers-Danlos syndrome hypermobility type and obsessive-compulsive personality disorder","volume":"34","author":"Pasquini","year":"2014","journal-title":"Rheumatol. Int."},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"187","DOI":"10.2190\/PM.41.2.g","article-title":"Association between psychopathological factors and joint hypermobility syndrome in a group of undergraduates from a French university","volume":"41","author":"Vilarrasa","year":"2011","journal-title":"Int. J. Psychiatry Med."},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"162","DOI":"10.1016\/j.pain.2007.01.002","article-title":"Effects of day-to-day affect regulation on the pain experience of patients with rheumatoid arthritis","volume":"131","author":"Connelly","year":"2007","journal-title":"Pain"},{"key":"ref_8","doi-asserted-by":"crossref","unstructured":"Freiherr Von Schoenhueb, D., Boecking, B., and Mazurek, B. (2023). Alexithymia in Patients with Somatization Difficulties and Tinnitus-Related Distress: A Systematic Review. J. Clin. Med., 12.","DOI":"10.3390\/jcm12216828"},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"435","DOI":"10.1080\/02699931.2021.1916442","article-title":"Having no words for feelings: Alexithymia as a fundamental personality dimension at the interface of cognition and emotion","volume":"35","author":"Luminet","year":"2021","journal-title":"Cogn. Emot."},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"134","DOI":"10.1177\/070674370004500203","article-title":"Recent Developments in Alexithymia Theory and Research","volume":"45","author":"Taylor","year":"2000","journal-title":"Can. J. Psychiatry"},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"99","DOI":"10.1177\/0003065112474066","article-title":"Psychoanalysis and Empirical Research: The Example of Alexithymia","volume":"61","author":"Taylor","year":"2013","journal-title":"J. Am. Psychoanal. Assoc."},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"994","DOI":"10.1097\/j.pain.0000000000001487","article-title":"Alexithymia in individuals with chronic pain and its relation to pain intensity, physical interference, depression, and anxiety: A systematic review and meta-analysi","volume":"160","author":"Aaron","year":"2019","journal-title":"Pain"},{"key":"ref_13","doi-asserted-by":"crossref","unstructured":"Renzi, A., Fedele, F., and Di Trani, M. (2023). Assisted Reproductive Treatments, Quality of Life, and Alexithymia in Couples. Healthcare, 11.","DOI":"10.3390\/healthcare11071026"},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"425","DOI":"10.1016\/S0022-3999(02)00467-1","article-title":"Alexithymia and somatisation","volume":"54","author":"Heiser","year":"2003","journal-title":"J. Psychosom. Res."},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"110101","DOI":"10.1016\/j.jpsychores.2020.110101","article-title":"The effect of alexithymia and depressive feelings on pain perception in somatoform pain disorder","volume":"133","author":"Lankes","year":"2020","journal-title":"J. Psychosom. Res."},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"87","DOI":"10.1016\/j.jad.2016.08.080","article-title":"Pain experience in Fibromyalgia Syndrome: The role of alexithymia and psychological distress","volume":"208","author":"Ghiggia","year":"2017","journal-title":"J. Affect. Disord."},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"273","DOI":"10.1016\/j.pain.2010.02.012","article-title":"Relationships among alexithymia and pain intensity, pain interference, and vitality in persons with neuromuscular disease: Considering the effect of negative affectivity","volume":"149","author":"Hosoi","year":"2010","journal-title":"Pain"},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"310","DOI":"10.1111\/joor.12748","article-title":"Alexithymia and temporomandibular joint and facial pain in the general population","volume":"46","author":"Kindler","year":"2019","journal-title":"J. Oral Rehabil."},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"399","DOI":"10.1016\/S0033-3182(98)71298-8","article-title":"Alexithymia and Somatic Amplification in Chronic Pain","volume":"39","author":"Kosturek","year":"1998","journal-title":"Psychosomatics"},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"989","DOI":"10.1002\/jclp.21876","article-title":"Cultural Adaptation of the Difficulties in Emotion Regulation Scale: Reliability and Validity of an Italian Version","volume":"68","author":"Giromini","year":"2012","journal-title":"J. Clin. Psychol."},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"41","DOI":"10.1023\/B:JOBA.0000007455.08539.94","article-title":"Multidimensional Assessment of Emotion Regulation and Dysregulation: Development, Factor Structure, and Initial Validation of the Difficulties in Emotion Regulation Scale","volume":"26","author":"Gratz","year":"2004","journal-title":"J. Psychopathol. Behav. Assess."},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"298","DOI":"10.1016\/j.drugalcdep.2006.12.026","article-title":"Difficulties in emotion regulation and impulse control during cocaine abstinence","volume":"89","author":"Fox","year":"2007","journal-title":"Drug Alcohol Depend."},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"14","DOI":"10.1080\/16506070701819524","article-title":"The Relationship Between Emotion Dysregulation and Deliberate Self-Harm Among Female Undergraduate Students at an Urban Commuter University","volume":"37","author":"Gratz","year":"2008","journal-title":"Cogn. Behav. Ther."},{"key":"ref_24","doi-asserted-by":"crossref","first-page":"1416","DOI":"10.1016\/j.addbeh.2008.05.001","article-title":"Linkages between cigarette smoking outcome expectancies and negative emotional vulnerability","volume":"33","author":"Johnson","year":"2008","journal-title":"Addict. Behav."},{"key":"ref_25","doi-asserted-by":"crossref","first-page":"23","DOI":"10.1016\/0022-3999(94)90005-1","article-title":"The twenty-item Toronto Alexithymia scale\u2014I. Item selection and cross-validation of the factor structure","volume":"38","author":"Bagby","year":"1994","journal-title":"J. Psychosom. Res."},{"key":"ref_26","doi-asserted-by":"crossref","first-page":"551","DOI":"10.1016\/S0022-3999(96)00228-0","article-title":"Cross validation of the factor structure of the 20-item Toronto Alexithymia Scale: An Italian multicenter study","volume":"41","author":"Bressi","year":"1996","journal-title":"J. Psychosom. Res."},{"key":"ref_27","unstructured":"Ware, J., Kosinski, M., and Keller, S. (1994). SF-36 Physical and Mental Health Summary Scales: A User\u2019s Manual, Health Assessment Lab."},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"1025","DOI":"10.1016\/S0895-4356(98)00094-8","article-title":"The Italian SF-36 Health Survey","volume":"51","author":"Apolone","year":"1998","journal-title":"J. Clin. Epidemiol."},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"87","DOI":"10.1016\/0304-3959(95)00156-5","article-title":"A validation study of an Italian version of the brief pain inventory (Breve questionario per la valutazione del dolore)","volume":"65","author":"Caraceni","year":"1996","journal-title":"Pain"},{"key":"ref_30","doi-asserted-by":"crossref","first-page":"87","DOI":"10.1016\/S0749-2081(85)80041-3","article-title":"Measurement and prevalence of pain in cancer","volume":"1","author":"Cleeland","year":"1985","journal-title":"Semin. Oncol. Nurs."},{"key":"ref_31","doi-asserted-by":"crossref","unstructured":"Schubart, J.R., Mills, S.E., Francomano, C.A., and Stuckey-Peyrot, H. (2024). A qualitative study of pain and related symptoms experienced by people with Ehlers-Danlos syndromes. Front. Med., 10.","DOI":"10.3389\/fmed.2023.1291189"},{"key":"ref_32","doi-asserted-by":"crossref","first-page":"1110","DOI":"10.1080\/09638288.2017.1419294","article-title":"Cognitive, Emotional, and Behavioral Considerations for Chronic Pain Management in the Ehlers-Danlos Syndrome Hypermobility-Type: A Narrative Review","volume":"41","author":"Bulbena","year":"2019","journal-title":"Disabil. Rehabil."},{"key":"ref_33","first-page":"1266","article-title":"The effect of emotion regulation on the emotional modulation of pain and nociceptive flexion reflex","volume":"165","author":"Toledo","year":"2024","journal-title":"Pain"},{"key":"ref_34","doi-asserted-by":"crossref","first-page":"145","DOI":"10.1002\/ana.21934","article-title":"Quality of life in the classic and hypermobility types of Ehlers-Danlos syndrome [corrected]","volume":"67","author":"Castori","year":"2010","journal-title":"Ann. Neurol."},{"key":"ref_35","doi-asserted-by":"crossref","unstructured":"Trudgian, R., and Flood, T. (2024). An exploration of the journey to diagnosis of Ehlers-Danlos Syndrome (EDS) for women living in Australia. PLoS ONE, 19.","DOI":"10.1371\/journal.pone.0307574"},{"key":"ref_36","doi-asserted-by":"crossref","unstructured":"Camerota, F., Mariani, R., Cordiano, G., Di Trani, M., Lodato, V., Ferraris, A., Pasquini, M., and Celletti, C. (2023). The Language of Pain in the Hypermobile Ehlers-Danlos Syndrome: Metaphors as a Key to Understanding the Experience of Pain and as a Rehabilitation Tool. Brain Sci., 13.","DOI":"10.20944\/preprints202306.0339.v1"},{"key":"ref_37","doi-asserted-by":"crossref","unstructured":"Celletti, C., Paolucci, T., Maggi, L., Volpi, G., Billi, M., Mollica, R., and Camerota, F. (2021). Pain Management through Neurocognitive Therapeutic Exercises in Hypermobile Ehlers-Danlos Syndrome Patients with Chronic Low Back Pain. Biomed. Res. Int., 2021.","DOI":"10.1155\/2021\/6664864"}],"container-title":["Brain Sciences"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2076-3425\/15\/2\/202\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,9]],"date-time":"2025-10-09T16:35:08Z","timestamp":1760027708000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2076-3425\/15\/2\/202"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,2,15]]},"references-count":37,"journal-issue":{"issue":"2","published-online":{"date-parts":[[2025,2]]}},"alternative-id":["brainsci15020202"],"URL":"https:\/\/doi.org\/10.3390\/brainsci15020202","relation":{},"ISSN":["2076-3425"],"issn-type":[{"type":"electronic","value":"2076-3425"}],"subject":[],"published":{"date-parts":[[2025,2,15]]}}}