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Cited by 36Connective tissue disorders researchMusculoskeletal pain and rehabilitationFibromyalgia and Chronic Fatigue Syndrome Research

Psychosocial Influence of Ehlers–Danlos Syndrome in Daily Life of Patients: A Qualitative Study

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Palomo-Toucedo, Inmaculada, Leon-Larios, Fatima, Reina-Bueno, María, Vázquez-Bautista, María, Munuera-Martínez, Pedro, Domínguez-Maldonado, Gabriel·2020·International Journal of Environmental Research and Public Health
DOI 10.3390/ijerph17176425PMC PMC7503231
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Abstract

(1) Background: Ehlers–Danlos syndrome is a heterogeneous group of connective tissue disorders causing pain, fatigue, and disabilities; it has several implications for patients who suffer from this disease. The major clinical manifestations of EDS include joint hypermobility, skin hyperextensibility, and generalized connective tissue fragility. This research aims to explore their perceptions and experiences about the phycological and social spheres. (2) Methods: Semistructured interviews were carried out. Participants were encouraged to talk about issues related to their disease by asking open-ended questions in one to one interview. The interview guide included questions to identify the syndrome’s influence on the social and psychological life of patients All interviews were audio recorded, fully transcribed, and analyzed using the phenomenological theoretical framework. The method of analysis was the thematic interpreting of perspectives and approaches. (3) Results: 31 individuals were proposed to participate in this study. Five patients refused to participate, so a total of 26 interviews were performed. Six themes ((1) Pain and its consequences on a daily basis; (2) The need to name the problem: the diagnosis; (3) Restructuring leisure and social relationships; (4) Limitations due to economic conditions; (5) Psychological impact of the disease situation; (6) Professional limitations) and four subthemes ((1) The value of partner support; (2) The weather influence on social plans; (3) Physical exercise and illness; (4) Support groups) emerged from the data. (4) Conclusions: This study revealed the impact of the syndrome on the social and daily life of patients, and not only in a physical level, but also in a psychological and social approach. These findings allow healthcare providers to know more about this disease in order to support and give advice to patients about the changes they will have to make.

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  • Fear of pain is particularly pronounced in those with chronic musculoskeletal issues.

    “Many attribute their decreased activity levels to pain, and fear of pain is particularly pronounced in those with chronic musculoskeletal issues.13, 14, 15”

    From Role of Anxiety in Individuals with Generalized Joint Hypermobility: A Systematic Review (2025) · cites this paper as [15]

    The Discussion (page not provided) says that people with Ehlers–Danlos syndrome may restrict activities because they fear pain or joint dislocations. It does not establish that fear of pain is particularly pronounced compared with other groups, or extend the finding to chronic musculoskeletal issues generally. (LLM, conf=0.85)

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References 44 · Cited by 36

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Authors
Palomo-Toucedo, I., Leon-Larios, F., Reina-Bueno, M., Vázquez-Bautista, M., Munuera-Martínez, P., & Domínguez-Maldonado, G.
Affiliations
  • Universidad de Sevilla (ES)
  • Department of Nursing, University of Seville, 41009 Seville, Spain
  • Department of Podiatry, University of Seville, 41009 Seville, Spain
ORCID
Venue
International Journal of Environmental Research and Public Health
Publisher
MDPI AG
Published
2020-09-03
Volume
17
Issue
17
Pages
6425
ISSN
1660-4601 (ISSN-L)
DOI
10.3390/ijerph17176425
PMC
PMC7503231
OpenAlex
W3082408687
Cited by
36
References
44
Citations by year
2026: 2 · 2025: 9 · 2024: 12 · 2023: 5 · 2022: 5 · 2021: 3
FWCI
1.91
Type
journal article
Language
en
Open access
Licence
Locations
  • International Journal of Environmental Research and Public Health (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • LA Referencia (Red Federada de Repositorios Institucionales de Publicaciones Científicas) (publishedVersion, cc-by-nc-nd)
  • RePEc: Research Papers in Economics (submittedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
  • Deposito de Investigacion Universidad de Sevilla (University of Seville) (submittedVersion, cc-by-nc-nd)
Funders
Universidad de Sevilla (“VI PLAN PROPIO DE INVESTIGACIÓN Y TRANSFERENCIA - US 2018” of the University of Seville.)
Topics
  • Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Connective tissue disorders research
  • Health Sciences › Medicine › Pharmacology › Musculoskeletal pain and rehabilitation
  • Health Sciences › Medicine › Psychiatry and Mental health › Fibromyalgia and Chronic Fatigue Syndrome Research
Keywords
Ehlers-Danlos syndrome, psychosocial impact, chronic pain, joint hypermobility, connective tissue diseases, interpersonal relationships, partner support, support groups, weather sensitivity, physical activity, diagnosis, everyday life, patient experience
MeSH terms
Activities of Daily Living, Adult, Ehlers-Danlos Syndrome, Employment, Fatigue, Female, Humans, Interpersonal Relations, Joint Instability, Male, Middle Aged, Social Support, Exercise, Qualitative Research, Young Adult

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