Survey of adolescents’ needs and parents’ views on sexual health in juvenile idiopathic arthritis
Abstract Background Although the advent of new therapeutics for juvenile idiopathic arthritis (JIA) patients has considerably lessened the impact of the disease and reduced its sequelae, the outcomes of JIA remain important in their lives. Disease repercussions and side effects of treatments may aff...
| Main Authors: | , , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
BMC
2023-09-01
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| Series: | Pediatric Rheumatology Online Journal |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12969-023-00884-x |
| _version_ | 1797453586998755328 |
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| author | Carine Savel Aurélie Chausset Pauline Berland Candy Guiguet-Auclair Laura Cabane Bruno Fautrel Philippe Gaudin Pascale Guillot Gilles Hayem Delphine Lafarge Etienne Merlin Nadine Pezière Christelle Sordet Sonia Trope Anne Tournadre Sandrine Malochet Jean-David Cohen |
| author_facet | Carine Savel Aurélie Chausset Pauline Berland Candy Guiguet-Auclair Laura Cabane Bruno Fautrel Philippe Gaudin Pascale Guillot Gilles Hayem Delphine Lafarge Etienne Merlin Nadine Pezière Christelle Sordet Sonia Trope Anne Tournadre Sandrine Malochet Jean-David Cohen |
| author_sort | Carine Savel |
| collection | DOAJ |
| description | Abstract Background Although the advent of new therapeutics for juvenile idiopathic arthritis (JIA) patients has considerably lessened the impact of the disease and reduced its sequelae, the outcomes of JIA remain important in their lives. Disease repercussions and side effects of treatments may affect sexual health and cause psychological distress. This aim of the study was to determine the expectations of adolescent JIA patients and the perceptions of their parents regarding knowledge and communication with healthcare providers (HCPs) in the field of sexual health (SH). Methods In France, from September 2021 to April 2022, a survey was conducted, using anonymous self-administered questionnaires, among JIA patients (adults (aged 18–45 years) to provide insights from their recollection of their adolescence) and their parents in nine rheumatology centers and three patient associations. Results The responses to the 76 patient questionnaires and 43 parent questionnaires that were collected were analyzed. Half of the patients thought JIA impacted their romantic relationships, but the results were less clear-cut for their sexual activity; and 58.7% of the patients said they would be comfortable discussing the subject with HCPs, but only 26.3% had done so, mainly regarding biomedical issues. The patients and their parents thought that ideally, the topic should be addressed in an individual patient education session at the hospital (51.3% and 34.9%, respectively), in a regular consultation (47.4% and 53.5%), or in a dedicated consultation requested by the adolescent without the adolescent’s parents being informed (38.2% and 20.9%). Most of the respondents thought HCPs should be proactive in SH (77.6% of the patients and 69.8% of their parents). More patients than parents said the following digital information tools must be used: videos (29.0% vs. 9.3%, p = 0.0127) and smartphone applications (25.0% vs. 9.3%, p = 0.0372). Conclusion HCPs should consider addressing the unmet need for SH discussions during their patient encounters. To meet this need, we propose concrete actions in line with the wishes of patients and parents. Clinical trial registration number NCT04791189. |
| first_indexed | 2024-03-09T15:23:59Z |
| format | Article |
| id | doaj.art-05aef4722e5e4a7e967fa3a29dc950c9 |
| institution | Directory Open Access Journal |
| issn | 1546-0096 |
| language | English |
| last_indexed | 2024-03-09T15:23:59Z |
| publishDate | 2023-09-01 |
| publisher | BMC |
| record_format | Article |
| series | Pediatric Rheumatology Online Journal |
| spelling | doaj.art-05aef4722e5e4a7e967fa3a29dc950c92023-11-26T12:35:45ZengBMCPediatric Rheumatology Online Journal1546-00962023-09-0121111110.1186/s12969-023-00884-xSurvey of adolescents’ needs and parents’ views on sexual health in juvenile idiopathic arthritisCarine Savel0Aurélie Chausset1Pauline Berland2Candy Guiguet-Auclair3Laura Cabane4Bruno Fautrel5Philippe Gaudin6Pascale Guillot7Gilles Hayem8Delphine Lafarge9Etienne Merlin10Nadine Pezière11Christelle Sordet12Sonia Trope13Anne Tournadre14Sandrine Malochet15Jean-David Cohen16CRECHE Unit, Department of Pediatrics, INSERM CIC 1405, CHU Clermont-FerrandCRECHE Unit, Department of Pediatrics, INSERM CIC 1405, CHU Clermont-FerrandTransversal Patient Education Unit, Department of Public Health, CHU Clermont-FerrandDepartment of Public Health, CHU Clermont-FerrandRheumatology Department, CHU NiceService de Rhumatologie, Sorbonne Université, AP-HP. Sorbonne Université, Hôpital Pitié-SalpêtrièreUniversity Grenoble Alpes, T-RAIG, TIMC-IMAG, CNRS UMR 5525Rheumatology Department, Nantes University HospitalRheumatology Department, Paris Saint-Joseph HospitalAssociation France Spondyloarthrites (AFS)CRECHE Unit, Department of Pediatrics, INSERM CIC 1405, CHU Clermont-FerrandAssociation KourirDepartment of Rheumatology, National Reference Center for Systemic Autoimmune Diseases (RESO), Hôpitaux Universitaires de StrasbourgAssociation Nationale de Défense Contre l’Arthrite Rhumatoïde (ANDAR)Rheumatology, CHU Clermont-FerrandRheumatology, CHU Clermont-FerrandRheumatology Department, Centre Hospitalier Universitaire de MontpellierAbstract Background Although the advent of new therapeutics for juvenile idiopathic arthritis (JIA) patients has considerably lessened the impact of the disease and reduced its sequelae, the outcomes of JIA remain important in their lives. Disease repercussions and side effects of treatments may affect sexual health and cause psychological distress. This aim of the study was to determine the expectations of adolescent JIA patients and the perceptions of their parents regarding knowledge and communication with healthcare providers (HCPs) in the field of sexual health (SH). Methods In France, from September 2021 to April 2022, a survey was conducted, using anonymous self-administered questionnaires, among JIA patients (adults (aged 18–45 years) to provide insights from their recollection of their adolescence) and their parents in nine rheumatology centers and three patient associations. Results The responses to the 76 patient questionnaires and 43 parent questionnaires that were collected were analyzed. Half of the patients thought JIA impacted their romantic relationships, but the results were less clear-cut for their sexual activity; and 58.7% of the patients said they would be comfortable discussing the subject with HCPs, but only 26.3% had done so, mainly regarding biomedical issues. The patients and their parents thought that ideally, the topic should be addressed in an individual patient education session at the hospital (51.3% and 34.9%, respectively), in a regular consultation (47.4% and 53.5%), or in a dedicated consultation requested by the adolescent without the adolescent’s parents being informed (38.2% and 20.9%). Most of the respondents thought HCPs should be proactive in SH (77.6% of the patients and 69.8% of their parents). More patients than parents said the following digital information tools must be used: videos (29.0% vs. 9.3%, p = 0.0127) and smartphone applications (25.0% vs. 9.3%, p = 0.0372). Conclusion HCPs should consider addressing the unmet need for SH discussions during their patient encounters. To meet this need, we propose concrete actions in line with the wishes of patients and parents. Clinical trial registration number NCT04791189.https://doi.org/10.1186/s12969-023-00884-xJuvenile idiopathic arthritisSexual healthHealthcare providersPatient educationAdolescentsParents |
| spellingShingle | Carine Savel Aurélie Chausset Pauline Berland Candy Guiguet-Auclair Laura Cabane Bruno Fautrel Philippe Gaudin Pascale Guillot Gilles Hayem Delphine Lafarge Etienne Merlin Nadine Pezière Christelle Sordet Sonia Trope Anne Tournadre Sandrine Malochet Jean-David Cohen Survey of adolescents’ needs and parents’ views on sexual health in juvenile idiopathic arthritis Pediatric Rheumatology Online Journal Juvenile idiopathic arthritis Sexual health Healthcare providers Patient education Adolescents Parents |
| title | Survey of adolescents’ needs and parents’ views on sexual health in juvenile idiopathic arthritis |
| title_full | Survey of adolescents’ needs and parents’ views on sexual health in juvenile idiopathic arthritis |
| title_fullStr | Survey of adolescents’ needs and parents’ views on sexual health in juvenile idiopathic arthritis |
| title_full_unstemmed | Survey of adolescents’ needs and parents’ views on sexual health in juvenile idiopathic arthritis |
| title_short | Survey of adolescents’ needs and parents’ views on sexual health in juvenile idiopathic arthritis |
| title_sort | survey of adolescents needs and parents views on sexual health in juvenile idiopathic arthritis |
| topic | Juvenile idiopathic arthritis Sexual health Healthcare providers Patient education Adolescents Parents |
| url | https://doi.org/10.1186/s12969-023-00884-x |
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