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Awareness and Expectations Surrounding Family Planning and Pregnancy Among Danish Patients with Chronic Inflammatory Disease of the Skin or Joints: Results from an Online Survey

BACKGROUND: Patients with chronic inflammatory diseases (CIDs) may encounter challenges in their family planning journey. Here, we report on the access to family planning and pregnancy (FPP) information and the concerns among patients in Denmark with CIDs. METHODS: Patients aged 18–50 years with CID...

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Autores principales: Johansen, Cæcilie B., Laurberg, Trine B., Egeberg, Alexander, Jensen, Ulla-Fie A., Hansen, Asbjørn L., Skov, Lone, Kristensen, Lars E., Thomsen, Simon F., Schreiber, Karen
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Healthcare 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8380620/
https://www.ncbi.nlm.nih.gov/pubmed/34392489
http://dx.doi.org/10.1007/s40744-021-00348-2
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author Johansen, Cæcilie B.
Laurberg, Trine B.
Egeberg, Alexander
Jensen, Ulla-Fie A.
Hansen, Asbjørn L.
Skov, Lone
Kristensen, Lars E.
Thomsen, Simon F.
Schreiber, Karen
author_facet Johansen, Cæcilie B.
Laurberg, Trine B.
Egeberg, Alexander
Jensen, Ulla-Fie A.
Hansen, Asbjørn L.
Skov, Lone
Kristensen, Lars E.
Thomsen, Simon F.
Schreiber, Karen
author_sort Johansen, Cæcilie B.
collection PubMed
description BACKGROUND: Patients with chronic inflammatory diseases (CIDs) may encounter challenges in their family planning journey. Here, we report on the access to family planning and pregnancy (FPP) information and the concerns among patients in Denmark with CIDs. METHODS: Patients aged 18–50 years with CIDs participated in an online survey. Patients were recruited through patient advocacy groups and were asked to report information on their diagnosis, concerns related to FPP and perceptions of access to FPP information. Descriptive statistics were applied. RESULTS: Of the eligible respondents, 368 had rheumatological diagnoses (rheumatoid arthritis, psoriatic arthritis, juvenile idiopathic arthritis or axial spondyloarthritis; mean age 40 years; 83% women, 17% men) and 95 had dermatological diagnoses (psoriasis or psoriatic arthritis; mean age 38 years; 67% women, 33% men). Approximately 70% of all patients reported seeking FPP information from patient advocacy groups; 57% of both cohorts used the internet as information sources; and 73% and 42% of rheumatological and dermatological cohorts used their hospital and specialist doctor, respectively. Despite this, 58% and 67% of patients with rheumatological and dermatological diagnoses reported limited or no access to FPP information, with > 70% of dermatological patients of early/mid-reproductive age reporting a lack of access to this information. Overall, 68% of patients with rheumatological and 73% with dermatological diagnoses had biological children, amongst whom 24% and 18%, respectively, indicated their disease affected the number of children they ultimately decided to have. The most frequent FPP concerns among patients who did not want any/more biological children were disease worsening, heredity and taking care of the child. CONCLUSIONS: Despite awareness of available sources of FPP information, patients expressed experiencing a feeling of limited access to information and having concerns that affect key decisions regarding FPP. The results of this survey highlight a need for improved and more standardised FPP information for patients with CIDs in Denmark. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s40744-021-00348-2.
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spelling pubmed-83806202021-09-08 Awareness and Expectations Surrounding Family Planning and Pregnancy Among Danish Patients with Chronic Inflammatory Disease of the Skin or Joints: Results from an Online Survey Johansen, Cæcilie B. Laurberg, Trine B. Egeberg, Alexander Jensen, Ulla-Fie A. Hansen, Asbjørn L. Skov, Lone Kristensen, Lars E. Thomsen, Simon F. Schreiber, Karen Rheumatol Ther Original Research BACKGROUND: Patients with chronic inflammatory diseases (CIDs) may encounter challenges in their family planning journey. Here, we report on the access to family planning and pregnancy (FPP) information and the concerns among patients in Denmark with CIDs. METHODS: Patients aged 18–50 years with CIDs participated in an online survey. Patients were recruited through patient advocacy groups and were asked to report information on their diagnosis, concerns related to FPP and perceptions of access to FPP information. Descriptive statistics were applied. RESULTS: Of the eligible respondents, 368 had rheumatological diagnoses (rheumatoid arthritis, psoriatic arthritis, juvenile idiopathic arthritis or axial spondyloarthritis; mean age 40 years; 83% women, 17% men) and 95 had dermatological diagnoses (psoriasis or psoriatic arthritis; mean age 38 years; 67% women, 33% men). Approximately 70% of all patients reported seeking FPP information from patient advocacy groups; 57% of both cohorts used the internet as information sources; and 73% and 42% of rheumatological and dermatological cohorts used their hospital and specialist doctor, respectively. Despite this, 58% and 67% of patients with rheumatological and dermatological diagnoses reported limited or no access to FPP information, with > 70% of dermatological patients of early/mid-reproductive age reporting a lack of access to this information. Overall, 68% of patients with rheumatological and 73% with dermatological diagnoses had biological children, amongst whom 24% and 18%, respectively, indicated their disease affected the number of children they ultimately decided to have. The most frequent FPP concerns among patients who did not want any/more biological children were disease worsening, heredity and taking care of the child. CONCLUSIONS: Despite awareness of available sources of FPP information, patients expressed experiencing a feeling of limited access to information and having concerns that affect key decisions regarding FPP. The results of this survey highlight a need for improved and more standardised FPP information for patients with CIDs in Denmark. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s40744-021-00348-2. Springer Healthcare 2021-08-14 /pmc/articles/PMC8380620/ /pubmed/34392489 http://dx.doi.org/10.1007/s40744-021-00348-2 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by-nc/4.0/Open Access This article is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, which permits any non-commercial use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Original Research
Johansen, Cæcilie B.
Laurberg, Trine B.
Egeberg, Alexander
Jensen, Ulla-Fie A.
Hansen, Asbjørn L.
Skov, Lone
Kristensen, Lars E.
Thomsen, Simon F.
Schreiber, Karen
Awareness and Expectations Surrounding Family Planning and Pregnancy Among Danish Patients with Chronic Inflammatory Disease of the Skin or Joints: Results from an Online Survey
title Awareness and Expectations Surrounding Family Planning and Pregnancy Among Danish Patients with Chronic Inflammatory Disease of the Skin or Joints: Results from an Online Survey
title_full Awareness and Expectations Surrounding Family Planning and Pregnancy Among Danish Patients with Chronic Inflammatory Disease of the Skin or Joints: Results from an Online Survey
title_fullStr Awareness and Expectations Surrounding Family Planning and Pregnancy Among Danish Patients with Chronic Inflammatory Disease of the Skin or Joints: Results from an Online Survey
title_full_unstemmed Awareness and Expectations Surrounding Family Planning and Pregnancy Among Danish Patients with Chronic Inflammatory Disease of the Skin or Joints: Results from an Online Survey
title_short Awareness and Expectations Surrounding Family Planning and Pregnancy Among Danish Patients with Chronic Inflammatory Disease of the Skin or Joints: Results from an Online Survey
title_sort awareness and expectations surrounding family planning and pregnancy among danish patients with chronic inflammatory disease of the skin or joints: results from an online survey
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8380620/
https://www.ncbi.nlm.nih.gov/pubmed/34392489
http://dx.doi.org/10.1007/s40744-021-00348-2
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