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A Decade of Waiting: Experiences of Women Living With Vulvar Crohn’s Disease and Interactions With Healthcare Professionals Related to Their Sexual Well-Being: A Qualitative Study

BACKGROUND: Vulvar Crohn’s disease is a rare cutaneous manifestation of inflammatory bowel disease and to date, studies have reported on under 300 cases worldwide. The condition has an increased risk of malignancy, and diagnosis is often difficult. Treatment protocols are yet to be developed. This p...

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Autores principales: Fourie, Simona, Jackson, Debra, Czuber-Dochan, Wladyslawa, Norton, Christine
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10212277/
https://www.ncbi.nlm.nih.gov/pubmed/37250190
http://dx.doi.org/10.1093/crocol/otad025
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author Fourie, Simona
Jackson, Debra
Czuber-Dochan, Wladyslawa
Norton, Christine
author_facet Fourie, Simona
Jackson, Debra
Czuber-Dochan, Wladyslawa
Norton, Christine
author_sort Fourie, Simona
collection PubMed
description BACKGROUND: Vulvar Crohn’s disease is a rare cutaneous manifestation of inflammatory bowel disease and to date, studies have reported on under 300 cases worldwide. The condition has an increased risk of malignancy, and diagnosis is often difficult. Treatment protocols are yet to be developed. This paper aimed to provide the first account of patients’ experience of living with vulvar Crohn’s. METHODS: A previous qualitative study exploring experiences of sexual well-being in inflammatory bowel disease and experiences of discussing sexual well-being with healthcare professionals found 3 participants who self-reported vulvar Crohn’s disease. Data from the whole cohort (n = 43) were previously reported. Telephone semi-structured interviews were used for data collection. van Manen’s phenomenology of practice framework informed analysis. RESULTS: Due to significant differences in experiences, this subgroup of 3 women with vulvar Crohn’s warranted separate attention. The common theme of the group was A decade of waiting, describing the major delays experienced in being diagnosed. The symptoms reported appeared to be very severe, and sexual well-being was very negatively affected. CONCLUSIONS: Women with vulvar Crohn’s trust in healthcare professionals was eroded as a result of a decade delay in diagnosis, while the quality of life and relationships suffered.
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spelling pubmed-102122772023-05-26 A Decade of Waiting: Experiences of Women Living With Vulvar Crohn’s Disease and Interactions With Healthcare Professionals Related to Their Sexual Well-Being: A Qualitative Study Fourie, Simona Jackson, Debra Czuber-Dochan, Wladyslawa Norton, Christine Crohns Colitis 360 Observations and Research BACKGROUND: Vulvar Crohn’s disease is a rare cutaneous manifestation of inflammatory bowel disease and to date, studies have reported on under 300 cases worldwide. The condition has an increased risk of malignancy, and diagnosis is often difficult. Treatment protocols are yet to be developed. This paper aimed to provide the first account of patients’ experience of living with vulvar Crohn’s. METHODS: A previous qualitative study exploring experiences of sexual well-being in inflammatory bowel disease and experiences of discussing sexual well-being with healthcare professionals found 3 participants who self-reported vulvar Crohn’s disease. Data from the whole cohort (n = 43) were previously reported. Telephone semi-structured interviews were used for data collection. van Manen’s phenomenology of practice framework informed analysis. RESULTS: Due to significant differences in experiences, this subgroup of 3 women with vulvar Crohn’s warranted separate attention. The common theme of the group was A decade of waiting, describing the major delays experienced in being diagnosed. The symptoms reported appeared to be very severe, and sexual well-being was very negatively affected. CONCLUSIONS: Women with vulvar Crohn’s trust in healthcare professionals was eroded as a result of a decade delay in diagnosis, while the quality of life and relationships suffered. Oxford University Press 2023-05-12 /pmc/articles/PMC10212277/ /pubmed/37250190 http://dx.doi.org/10.1093/crocol/otad025 Text en © The Author(s) 2023. Published by Oxford University Press on behalf of Crohn's & Colitis Foundation. https://creativecommons.org/licenses/by/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Observations and Research
Fourie, Simona
Jackson, Debra
Czuber-Dochan, Wladyslawa
Norton, Christine
A Decade of Waiting: Experiences of Women Living With Vulvar Crohn’s Disease and Interactions With Healthcare Professionals Related to Their Sexual Well-Being: A Qualitative Study
title A Decade of Waiting: Experiences of Women Living With Vulvar Crohn’s Disease and Interactions With Healthcare Professionals Related to Their Sexual Well-Being: A Qualitative Study
title_full A Decade of Waiting: Experiences of Women Living With Vulvar Crohn’s Disease and Interactions With Healthcare Professionals Related to Their Sexual Well-Being: A Qualitative Study
title_fullStr A Decade of Waiting: Experiences of Women Living With Vulvar Crohn’s Disease and Interactions With Healthcare Professionals Related to Their Sexual Well-Being: A Qualitative Study
title_full_unstemmed A Decade of Waiting: Experiences of Women Living With Vulvar Crohn’s Disease and Interactions With Healthcare Professionals Related to Their Sexual Well-Being: A Qualitative Study
title_short A Decade of Waiting: Experiences of Women Living With Vulvar Crohn’s Disease and Interactions With Healthcare Professionals Related to Their Sexual Well-Being: A Qualitative Study
title_sort decade of waiting: experiences of women living with vulvar crohn’s disease and interactions with healthcare professionals related to their sexual well-being: a qualitative study
topic Observations and Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10212277/
https://www.ncbi.nlm.nih.gov/pubmed/37250190
http://dx.doi.org/10.1093/crocol/otad025
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