Well-being in chronic pediatric inflammatory rheumatic diseases: the experience of a French healthcare network
Abstract Objective Current management of patients with pediatric rheumatic diseases (PRD) should aim at achieving the best possible well-being. To identify sociodemographic/clinical characteristics, needed paramedical services and school accommodations associated with well-being in patients at inclu...
| Main Authors: | , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMC
2023-03-01
|
| Series: | Orphanet Journal of Rare Diseases |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s13023-023-02655-z |
| _version_ | 1797863559095386112 |
|---|---|
| author | Rita El Haddad Khalil El Asmar Chrystelle Hascoët Linda Rossi-Semerano Perrine Dusser |
| author_facet | Rita El Haddad Khalil El Asmar Chrystelle Hascoët Linda Rossi-Semerano Perrine Dusser |
| author_sort | Rita El Haddad |
| collection | DOAJ |
| description | Abstract Objective Current management of patients with pediatric rheumatic diseases (PRD) should aim at achieving the best possible well-being. To identify sociodemographic/clinical characteristics, needed paramedical services and school accommodations associated with well-being in patients at inclusion in a French health network Réseau pour les Rhumatismes Inflammatoires Pédiatriques (RESRIP) that supports coordination of the patient’s health pathway. To evaluate the evolution of well-being over time in this patients benefiting from such support. Methods Patients > 3 years old enrolled in RESRIP (2013–2020) were included. At enrollment, data were collected on sociodemographic/clinical characteristics, ongoing medications, and paramedical and educational actions to be implemented by RESRIP. Well-being during the last 6 months was reported with a standardized questionnaire at enrollment and every 6 months. A well-being score was calculated with scores ranging from 0 to 18, 18 corresponding to absolute well-being. Patients were followed up from inclusion until June 2020. Results In total, 406 patients were included and followed up for 36 months on average: 205 juvenile idiopathic arthritis, 68 connective tissue diseases, 81 auto-inflammatory diseases and 52 other diseases. The well-being score did not differ between the groups and improved significantly, by 0.04 score units, every 6 months (95% confidence interval [0.03; 0.06]). At inclusion, use of homeopathy, need for implementation of hypnosis or psychological support, occupational therapy or for adjustment of school tests were associated with worse well-being score. Conclusion Well-being seems associated more with the impact of chronic illness than the type of PRD underlining the importance of a comprehensive patient care. |
| first_indexed | 2024-04-09T22:38:33Z |
| format | Article |
| id | doaj.art-b40a39c26a63440db03a24018177c4af |
| institution | Directory Open Access Journal |
| issn | 1750-1172 |
| language | English |
| last_indexed | 2024-04-09T22:38:33Z |
| publishDate | 2023-03-01 |
| publisher | BMC |
| record_format | Article |
| series | Orphanet Journal of Rare Diseases |
| spelling | doaj.art-b40a39c26a63440db03a24018177c4af2023-03-22T12:21:46ZengBMCOrphanet Journal of Rare Diseases1750-11722023-03-011811910.1186/s13023-023-02655-zWell-being in chronic pediatric inflammatory rheumatic diseases: the experience of a French healthcare networkRita El Haddad0Khalil El Asmar1Chrystelle Hascoët2Linda Rossi-Semerano3Perrine Dusser4Réseau Rhumatismes Inflammatoires Pédiatriques (RESRIP)Faculty of Medicine, Université Paris-Saclay, Université Paris SudRéseau Rhumatismes Inflammatoires Pédiatriques (RESRIP)Réseau Rhumatismes Inflammatoires Pédiatriques (RESRIP)Réseau Rhumatismes Inflammatoires Pédiatriques (RESRIP)Abstract Objective Current management of patients with pediatric rheumatic diseases (PRD) should aim at achieving the best possible well-being. To identify sociodemographic/clinical characteristics, needed paramedical services and school accommodations associated with well-being in patients at inclusion in a French health network Réseau pour les Rhumatismes Inflammatoires Pédiatriques (RESRIP) that supports coordination of the patient’s health pathway. To evaluate the evolution of well-being over time in this patients benefiting from such support. Methods Patients > 3 years old enrolled in RESRIP (2013–2020) were included. At enrollment, data were collected on sociodemographic/clinical characteristics, ongoing medications, and paramedical and educational actions to be implemented by RESRIP. Well-being during the last 6 months was reported with a standardized questionnaire at enrollment and every 6 months. A well-being score was calculated with scores ranging from 0 to 18, 18 corresponding to absolute well-being. Patients were followed up from inclusion until June 2020. Results In total, 406 patients were included and followed up for 36 months on average: 205 juvenile idiopathic arthritis, 68 connective tissue diseases, 81 auto-inflammatory diseases and 52 other diseases. The well-being score did not differ between the groups and improved significantly, by 0.04 score units, every 6 months (95% confidence interval [0.03; 0.06]). At inclusion, use of homeopathy, need for implementation of hypnosis or psychological support, occupational therapy or for adjustment of school tests were associated with worse well-being score. Conclusion Well-being seems associated more with the impact of chronic illness than the type of PRD underlining the importance of a comprehensive patient care.https://doi.org/10.1186/s13023-023-02655-zQuality of lifeChronic inflammatory rheumatic diseasesChildrenAdolescentsHealthcare network |
| spellingShingle | Rita El Haddad Khalil El Asmar Chrystelle Hascoët Linda Rossi-Semerano Perrine Dusser Well-being in chronic pediatric inflammatory rheumatic diseases: the experience of a French healthcare network Orphanet Journal of Rare Diseases Quality of life Chronic inflammatory rheumatic diseases Children Adolescents Healthcare network |
| title | Well-being in chronic pediatric inflammatory rheumatic diseases: the experience of a French healthcare network |
| title_full | Well-being in chronic pediatric inflammatory rheumatic diseases: the experience of a French healthcare network |
| title_fullStr | Well-being in chronic pediatric inflammatory rheumatic diseases: the experience of a French healthcare network |
| title_full_unstemmed | Well-being in chronic pediatric inflammatory rheumatic diseases: the experience of a French healthcare network |
| title_short | Well-being in chronic pediatric inflammatory rheumatic diseases: the experience of a French healthcare network |
| title_sort | well being in chronic pediatric inflammatory rheumatic diseases the experience of a french healthcare network |
| topic | Quality of life Chronic inflammatory rheumatic diseases Children Adolescents Healthcare network |
| url | https://doi.org/10.1186/s13023-023-02655-z |
| work_keys_str_mv | AT ritaelhaddad wellbeinginchronicpediatricinflammatoryrheumaticdiseasestheexperienceofafrenchhealthcarenetwork AT khalilelasmar wellbeinginchronicpediatricinflammatoryrheumaticdiseasestheexperienceofafrenchhealthcarenetwork AT chrystellehascoet wellbeinginchronicpediatricinflammatoryrheumaticdiseasestheexperienceofafrenchhealthcarenetwork AT lindarossisemerano wellbeinginchronicpediatricinflammatoryrheumaticdiseasestheexperienceofafrenchhealthcarenetwork AT perrinedusser wellbeinginchronicpediatricinflammatoryrheumaticdiseasestheexperienceofafrenchhealthcarenetwork |