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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

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@article{28b783d2ae38495484554d8fad67e6aa,
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",
abstract = "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.",
keywords = "Chronic inflammatory disease, Family planning, Online survey, Pregnancy",
author = "Johansen, {C{\ae}cilie B.} and Laurberg, {Trine B.} and Alexander Egeberg and Jensen, {Ulla Fie A.} and Hansen, {Asbj{\o}rn L.} and Lone Skov and Kristensen, {Lars E.} and Thomsen, {Simon F.} and Karen Schreiber",
note = "Funding Information: The authors also acknowledge Vanessa Omnou, MSc, and Beverley Wilson, PhD, Costello Medical, UK, for medical writing and editorial assistance based on the authors{\textquoteright} input and direction. This study was funded by UCB Pharma in accordance with Good Publication Practice (GPP3) guidelines ( http://www.ismpp.org/gpp3 ). Funding Information: The authors thank the participants, the patient advocacy groups (The Arthritis Association [Gigtforeningen], The Association for Spinal Arthritis and Bechterew's Disease [Foreningen for Rygs?jlegigt og Morbus Bechterew] and The Psoriasis Association [Psoriasisforeningen]), the investigators and their teams who took part in this study. Survey implementation and data collection was managed by Incentive Denmark. This study and Rapid Service Fee was funded by UCB Pharma. The authors also acknowledge Vanessa Omnou, MSc, and Beverley Wilson, PhD, Costello Medical, UK, for medical writing and editorial assistance based on the authors? input and direction. This study was funded by UCB Pharma in accordance with Good Publication Practice (GPP3) guidelines (http://www.ismpp.org/gpp3). All named authors meet the International Committee of Medical Journal Editors (ICMJE) criteria for authorship for this article, take responsibility for the integrity of the work as a whole, and have given their approval for this version to be published. Substantial contributions to study conception and design: C?cilie B Johansen, Trine B Laurberg, Alexander Egeberg, Ulla-Fie A Jensen, Asbj?rn L Hansen, Lone Skov, Lars E Kristensen, Simon F Thomsen and Karen Schreiberf. Substantial contributions to analysis and interpretation of the data: C?cilie B Johansen, Trine B Laurberg, Alexander Egeberg, Ulla-Fie A Jensen, Asbj?rn L Hansen, Lone Skov, Lars E Kristensen, Simon F Thomsen and Karen Schreiberf. Drafting the article or revising it critically for important intellectual content: C?cilie B Johansen, Trine B Laurberg, Alexander Egeberg, Ulla-Fie A Jensen, Asbj?rn L Hansen, Lone Skov, Lars E Kristensen, Simon F Thomsen and Karen Schreiberf. Final approval of the version of the article to be published: C?cilie B Johansen, Trine B Laurberg, Alexander Egeberg, Ulla-Fie A Jensen, Asbj?rn L Hansen, Lone Skov, Lars E Kristensen, Simon F Thomsen and Karen Schreiberf. An abstract summarising data from this manuscript was submitted to, and accepted for poster presentation at the European Alliance of Associations for Rheumatology (EULAR) 2020 Virtual Congress (from 3 June 2020; online): Schreiber K, Johansen C, Jensen UF, et al. PARE0024 Awareness about family planning and pregnancy expectation among patients with chronic inflammatory disease of the skin or joints (Annals of the Rheumatic Diseases 2020;79:1297?1298). C?cilie B Johansen: Advisory Boards for UCB Pharma; honoraria as consultant and/or speaker for Galderma, Estee Lauder Companies L'Or?al. Trine B Laurberg: Consultant and/or Advisory Boards for AbbVie and UCB Pharma. Karen Schreiberf: Consultant and/or Advisory Boards for UCB Pharma. Alexander Egeberg: Research funding from AbbVie, Bristol-Myers Squibb, the Danish National Psoriasis Foundation, Eli Lilly, Janssen Pharmaceuticals, the Royal Hofbundtmager Aage Bang Foundation, the Simon Spies Foundation, Novartis and Pfizer; honoraria as consultant and/or speaker from AbbVie, Almirall, Bristol-Myers Squibb, Dermavant, Eli Lilly, Janssen Pharmaceuticals, Galapagos NV, Galderma, LEO Pharma, Mylan, Novartis, Pfizer, Samsung Bioepis Co. Ltd., Sun Pharmaceuticals and UCB Pharma. Ulla-Fie A Jensen: Employee of UCB Pharma. Asbj?rn L Hansen: Former employee of UCB Pharma. Lone Skov: Speaker for AbbVie, Sanofi, Eli Lilly, LEO Pharma and Novartis; consultant and/or Advisory Boards for AbbVie, Almirall, Eli Lilly, Janssen Pharmaceuticals, LEO Pharma, Novartis, UCB Pharma, BMS and Sanofi; research and educational grants from AbbVie, Janssen Pharmaceuticals, LEO Pharma, Novartis, BMS and Sanofi. Lars E Kristensen: Consultant and/or Advisory Boards and/or speaker for AbbVie, Amgen, Biogen, Bristol-Myers Squibb, Eli Lilly, Gilead, Janssen Pharmaceuticals, MSD, Novartis, Pfizer, Sanofi and UCB Pharma. Simon F Thomsen: Consultant and/or Advisory Boards for AbbVie, Almirall, Celgene, Eli Lilly, Janssen Pharmaceuticals, LEO Pharma, Novartis, Pfizer, Roche and Sanofi; speaker for AbbVie, Eli Lilly, LEO Pharma, Novartis, Sanofi and UCB Pharma; research support from Abbvie, LEO Pharma, Janssen Pharmaceuticals, Novartis, Sanofi and UCB Pharma. Ethics approval was not required for this study. Under Danish legislation, questionnaire survey projects not involving human biological material are exempt from the obligation to notify the scientific ethics committee (Section 14 (2) of the Committee Act). Respondents were provided information on the conduct of the survey and had to provide consent before participating. Respondents were informed that the knowledge collected in the survey would be published and had to provide consent before participating. Data from non-clinical studies is outside of UCB?s data-sharing policy. Publisher Copyright: {\textcopyright} 2021, The Author(s). Copyright: Copyright 2021 Elsevier B.V., All rights reserved.",
year = "2021",
month = aug,
day = "14",
doi = "10.1007/s40744-021-00348-2",
language = "English",
volume = "8",
pages = "1419--1433",
journal = "Rheumatology and Therapy",
issn = "2198-6576",
number = "3",

}

RIS

TY - JOUR

T1 - Awareness and Expectations Surrounding Family Planning and Pregnancy Among Danish Patients with Chronic Inflammatory Disease of the Skin or Joints

T2 - Results from an Online Survey

AU - Johansen, Cæcilie B.

AU - Laurberg, Trine B.

AU - Egeberg, Alexander

AU - Jensen, Ulla Fie A.

AU - Hansen, Asbjørn L.

AU - Skov, Lone

AU - Kristensen, Lars E.

AU - Thomsen, Simon F.

AU - Schreiber, Karen

N1 - Funding Information: The authors also acknowledge Vanessa Omnou, MSc, and Beverley Wilson, PhD, Costello Medical, UK, for medical writing and editorial assistance based on the authors’ input and direction. This study was funded by UCB Pharma in accordance with Good Publication Practice (GPP3) guidelines ( http://www.ismpp.org/gpp3 ). Funding Information: The authors thank the participants, the patient advocacy groups (The Arthritis Association [Gigtforeningen], The Association for Spinal Arthritis and Bechterew's Disease [Foreningen for Rygs?jlegigt og Morbus Bechterew] and The Psoriasis Association [Psoriasisforeningen]), the investigators and their teams who took part in this study. Survey implementation and data collection was managed by Incentive Denmark. This study and Rapid Service Fee was funded by UCB Pharma. The authors also acknowledge Vanessa Omnou, MSc, and Beverley Wilson, PhD, Costello Medical, UK, for medical writing and editorial assistance based on the authors? input and direction. This study was funded by UCB Pharma in accordance with Good Publication Practice (GPP3) guidelines (http://www.ismpp.org/gpp3). All named authors meet the International Committee of Medical Journal Editors (ICMJE) criteria for authorship for this article, take responsibility for the integrity of the work as a whole, and have given their approval for this version to be published. Substantial contributions to study conception and design: C?cilie B Johansen, Trine B Laurberg, Alexander Egeberg, Ulla-Fie A Jensen, Asbj?rn L Hansen, Lone Skov, Lars E Kristensen, Simon F Thomsen and Karen Schreiberf. Substantial contributions to analysis and interpretation of the data: C?cilie B Johansen, Trine B Laurberg, Alexander Egeberg, Ulla-Fie A Jensen, Asbj?rn L Hansen, Lone Skov, Lars E Kristensen, Simon F Thomsen and Karen Schreiberf. Drafting the article or revising it critically for important intellectual content: C?cilie B Johansen, Trine B Laurberg, Alexander Egeberg, Ulla-Fie A Jensen, Asbj?rn L Hansen, Lone Skov, Lars E Kristensen, Simon F Thomsen and Karen Schreiberf. Final approval of the version of the article to be published: C?cilie B Johansen, Trine B Laurberg, Alexander Egeberg, Ulla-Fie A Jensen, Asbj?rn L Hansen, Lone Skov, Lars E Kristensen, Simon F Thomsen and Karen Schreiberf. An abstract summarising data from this manuscript was submitted to, and accepted for poster presentation at the European Alliance of Associations for Rheumatology (EULAR) 2020 Virtual Congress (from 3 June 2020; online): Schreiber K, Johansen C, Jensen UF, et al. PARE0024 Awareness about family planning and pregnancy expectation among patients with chronic inflammatory disease of the skin or joints (Annals of the Rheumatic Diseases 2020;79:1297?1298). C?cilie B Johansen: Advisory Boards for UCB Pharma; honoraria as consultant and/or speaker for Galderma, Estee Lauder Companies L'Or?al. Trine B Laurberg: Consultant and/or Advisory Boards for AbbVie and UCB Pharma. Karen Schreiberf: Consultant and/or Advisory Boards for UCB Pharma. Alexander Egeberg: Research funding from AbbVie, Bristol-Myers Squibb, the Danish National Psoriasis Foundation, Eli Lilly, Janssen Pharmaceuticals, the Royal Hofbundtmager Aage Bang Foundation, the Simon Spies Foundation, Novartis and Pfizer; honoraria as consultant and/or speaker from AbbVie, Almirall, Bristol-Myers Squibb, Dermavant, Eli Lilly, Janssen Pharmaceuticals, Galapagos NV, Galderma, LEO Pharma, Mylan, Novartis, Pfizer, Samsung Bioepis Co. Ltd., Sun Pharmaceuticals and UCB Pharma. Ulla-Fie A Jensen: Employee of UCB Pharma. Asbj?rn L Hansen: Former employee of UCB Pharma. Lone Skov: Speaker for AbbVie, Sanofi, Eli Lilly, LEO Pharma and Novartis; consultant and/or Advisory Boards for AbbVie, Almirall, Eli Lilly, Janssen Pharmaceuticals, LEO Pharma, Novartis, UCB Pharma, BMS and Sanofi; research and educational grants from AbbVie, Janssen Pharmaceuticals, LEO Pharma, Novartis, BMS and Sanofi. Lars E Kristensen: Consultant and/or Advisory Boards and/or speaker for AbbVie, Amgen, Biogen, Bristol-Myers Squibb, Eli Lilly, Gilead, Janssen Pharmaceuticals, MSD, Novartis, Pfizer, Sanofi and UCB Pharma. Simon F Thomsen: Consultant and/or Advisory Boards for AbbVie, Almirall, Celgene, Eli Lilly, Janssen Pharmaceuticals, LEO Pharma, Novartis, Pfizer, Roche and Sanofi; speaker for AbbVie, Eli Lilly, LEO Pharma, Novartis, Sanofi and UCB Pharma; research support from Abbvie, LEO Pharma, Janssen Pharmaceuticals, Novartis, Sanofi and UCB Pharma. Ethics approval was not required for this study. Under Danish legislation, questionnaire survey projects not involving human biological material are exempt from the obligation to notify the scientific ethics committee (Section 14 (2) of the Committee Act). Respondents were provided information on the conduct of the survey and had to provide consent before participating. Respondents were informed that the knowledge collected in the survey would be published and had to provide consent before participating. Data from non-clinical studies is outside of UCB?s data-sharing policy. Publisher Copyright: © 2021, The Author(s). Copyright: Copyright 2021 Elsevier B.V., All rights reserved.

PY - 2021/8/14

Y1 - 2021/8/14

N2 - 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.

AB - 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.

KW - Chronic inflammatory disease

KW - Family planning

KW - Online survey

KW - Pregnancy

UR - http://www.scopus.com/inward/record.url?scp=85112410572&partnerID=8YFLogxK

U2 - 10.1007/s40744-021-00348-2

DO - 10.1007/s40744-021-00348-2

M3 - Journal article

C2 - 34392489

AN - SCOPUS:85112410572

VL - 8

SP - 1419

EP - 1433

JO - Rheumatology and Therapy

JF - Rheumatology and Therapy

SN - 2198-6576

IS - 3

ER -

ID: 67623734