P164 New JIA-at-NRAS resource Medicines in Juvenile Idiopathic Arthritis

Abstract Background/Aims Biologics have been commissioned by the NHS for use to treat JIA since 2014. Many of the original biologics that were first developed have since lost exclusivity, allowing other manufacturers to produce highly similar versions (biosimilars). This difference between the origi...

Ausführliche Beschreibung

Gespeichert in:
Bibliographische Detailangaben
Veröffentlicht in:Rheumatology (Oxford, England) England), 2022-04, Vol.61 (Supplement_1)
1. Verfasser: Wilson, Debbie L
Format: Artikel
Sprache:eng
Online-Zugang:Volltext
Tags: Tag hinzufügen
Keine Tags, Fügen Sie den ersten Tag hinzu!
container_end_page
container_issue Supplement_1
container_start_page
container_title Rheumatology (Oxford, England)
container_volume 61
creator Wilson, Debbie L
description Abstract Background/Aims Biologics have been commissioned by the NHS for use to treat JIA since 2014. Many of the original biologics that were first developed have since lost exclusivity, allowing other manufacturers to produce highly similar versions (biosimilars). This difference between the originator and the biosimilar has caused confusion within the patient community, especially in how it has been communicated to them. Parents found the concept of biosimilars confusing and wanted more information about this, recommending that written material be provided. Previous conversations with healthcare professionals, parents and young people living with JIA had also found there was a lack of written information on all JIA medications so we looked into how this gap could be filled. Methods Knowing there was a need for this information, a focus group was convened with young people with JIA, parents of children with JIA and healthcare professionals. From this focus group and separate conversations with healthcare professionals it very quickly became apparent a resource not only covering medications for JIA but detailing the wider JIA journey was needed. This resource would need to cover each step from diagnosis to a young person taking control of their disease management. It would also cover how the complexity of the immune system means that some children/young people respond differently to medication; help them to learn about the unpredictability of the disease and to take control of managing their disease, particularly as they move onto adult rheumatology services. NRAS worked collaboratively with health writer and healthcare professionals to make sure this new resource covered all the topics that were discussed at the focus group and detailed all the medications used to treat JIA, including information on the issue of differentiating between biologics and biosimilars. Results The Medicines in JIA booklet is now freely available to all parents, young people and healthcare professionals from the jia.org.uk website. The addition of visuals makes the information easier to navigate, clearer to understand and helps to illustrate the JIA journey. Conclusion The feedback NRAS has received from both healthcare professionals and parents has been very positive: “We think that they’re absolutely fantastic, they cover everything, and I’m so pleased I’ve got these to give to parents and children.” Paediatric Rheumatology Nurse Haywood Hospital “This is brilliant and much ne
doi_str_mv 10.1093/rheumatology/keac133.163
format Article
fullrecord <record><control><sourceid>oup_cross</sourceid><recordid>TN_cdi_crossref_primary_10_1093_rheumatology_keac133_163</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><oup_id>10.1093/rheumatology/keac133.163</oup_id><sourcerecordid>10.1093/rheumatology/keac133.163</sourcerecordid><originalsourceid>FETCH-LOGICAL-c1433-e23e2ad1fbb75bbe1c63d5e59d18a90fbf8548451f156b2008661867212a20803</originalsourceid><addsrcrecordid>eNqN0M1OAjEUhuHGaCKi99AbGOjpmZaynBB_IIjGn_Wk0zkjVWBIOyNhZ-KdeiViIMalq3M277d4GOMgeiCG2A9zape2qRf1y7b_RtYBYg80HrEOpFomAlEe__4yPWVnMb4KIRSg6bDJPej06-NzRhs-GWeJbZLZQ_bIA8W6DY74LZXe-RVF7ld80r7Tyi-Ij0tfr20z945noZkH3_h4zk4qu4h0cbhd9nx1-TS6SaZ31-NRNk0cpIgJSSRpS6iKYqCKgsBpLBWpYQnGDkVVVEalJlVQgdKFFMJoDUYPJEgrhRHYZWa_60IdY6AqXwe_tGGbg8h_TPK_JvnBJN-Z7FLcp3W7_n_1De5ja7s</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype></control><display><type>article</type><title>P164 New JIA-at-NRAS resource Medicines in Juvenile Idiopathic Arthritis</title><source>Oxford University Press Journals All Titles (1996-Current)</source><source>Alma/SFX Local Collection</source><creator>Wilson, Debbie L</creator><creatorcontrib>Wilson, Debbie L</creatorcontrib><description>Abstract Background/Aims Biologics have been commissioned by the NHS for use to treat JIA since 2014. Many of the original biologics that were first developed have since lost exclusivity, allowing other manufacturers to produce highly similar versions (biosimilars). This difference between the originator and the biosimilar has caused confusion within the patient community, especially in how it has been communicated to them. Parents found the concept of biosimilars confusing and wanted more information about this, recommending that written material be provided. Previous conversations with healthcare professionals, parents and young people living with JIA had also found there was a lack of written information on all JIA medications so we looked into how this gap could be filled. Methods Knowing there was a need for this information, a focus group was convened with young people with JIA, parents of children with JIA and healthcare professionals. From this focus group and separate conversations with healthcare professionals it very quickly became apparent a resource not only covering medications for JIA but detailing the wider JIA journey was needed. This resource would need to cover each step from diagnosis to a young person taking control of their disease management. It would also cover how the complexity of the immune system means that some children/young people respond differently to medication; help them to learn about the unpredictability of the disease and to take control of managing their disease, particularly as they move onto adult rheumatology services. NRAS worked collaboratively with health writer and healthcare professionals to make sure this new resource covered all the topics that were discussed at the focus group and detailed all the medications used to treat JIA, including information on the issue of differentiating between biologics and biosimilars. Results The Medicines in JIA booklet is now freely available to all parents, young people and healthcare professionals from the jia.org.uk website. The addition of visuals makes the information easier to navigate, clearer to understand and helps to illustrate the JIA journey. Conclusion The feedback NRAS has received from both healthcare professionals and parents has been very positive: “We think that they’re absolutely fantastic, they cover everything, and I’m so pleased I’ve got these to give to parents and children.” Paediatric Rheumatology Nurse Haywood Hospital “This is brilliant and much needed. Great piece of work much appreciated by all of us”. Lead Nurse Nottingham Children and Young People’s Rheumatology Service “This has been my absolute saviour! It gives you support on administering the medicines and made me feel right at ease after reading it”. Parent of child with JIA Disclosure D.L. Wilson: None.</description><identifier>ISSN: 1462-0324</identifier><identifier>EISSN: 1462-0332</identifier><identifier>DOI: 10.1093/rheumatology/keac133.163</identifier><language>eng</language><publisher>Oxford University Press</publisher><ispartof>Rheumatology (Oxford, England), 2022-04, Vol.61 (Supplement_1)</ispartof><rights>The Author(s) 2022. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For permissions, please email: journals.permissions@oup.com. 2022</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>314,780,784,27924,27925</link.rule.ids></links><search><creatorcontrib>Wilson, Debbie L</creatorcontrib><title>P164 New JIA-at-NRAS resource Medicines in Juvenile Idiopathic Arthritis</title><title>Rheumatology (Oxford, England)</title><description>Abstract Background/Aims Biologics have been commissioned by the NHS for use to treat JIA since 2014. Many of the original biologics that were first developed have since lost exclusivity, allowing other manufacturers to produce highly similar versions (biosimilars). This difference between the originator and the biosimilar has caused confusion within the patient community, especially in how it has been communicated to them. Parents found the concept of biosimilars confusing and wanted more information about this, recommending that written material be provided. Previous conversations with healthcare professionals, parents and young people living with JIA had also found there was a lack of written information on all JIA medications so we looked into how this gap could be filled. Methods Knowing there was a need for this information, a focus group was convened with young people with JIA, parents of children with JIA and healthcare professionals. From this focus group and separate conversations with healthcare professionals it very quickly became apparent a resource not only covering medications for JIA but detailing the wider JIA journey was needed. This resource would need to cover each step from diagnosis to a young person taking control of their disease management. It would also cover how the complexity of the immune system means that some children/young people respond differently to medication; help them to learn about the unpredictability of the disease and to take control of managing their disease, particularly as they move onto adult rheumatology services. NRAS worked collaboratively with health writer and healthcare professionals to make sure this new resource covered all the topics that were discussed at the focus group and detailed all the medications used to treat JIA, including information on the issue of differentiating between biologics and biosimilars. Results The Medicines in JIA booklet is now freely available to all parents, young people and healthcare professionals from the jia.org.uk website. The addition of visuals makes the information easier to navigate, clearer to understand and helps to illustrate the JIA journey. Conclusion The feedback NRAS has received from both healthcare professionals and parents has been very positive: “We think that they’re absolutely fantastic, they cover everything, and I’m so pleased I’ve got these to give to parents and children.” Paediatric Rheumatology Nurse Haywood Hospital “This is brilliant and much needed. Great piece of work much appreciated by all of us”. Lead Nurse Nottingham Children and Young People’s Rheumatology Service “This has been my absolute saviour! It gives you support on administering the medicines and made me feel right at ease after reading it”. Parent of child with JIA Disclosure D.L. Wilson: None.</description><issn>1462-0324</issn><issn>1462-0332</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2022</creationdate><recordtype>article</recordtype><recordid>eNqN0M1OAjEUhuHGaCKi99AbGOjpmZaynBB_IIjGn_Wk0zkjVWBIOyNhZ-KdeiViIMalq3M277d4GOMgeiCG2A9zape2qRf1y7b_RtYBYg80HrEOpFomAlEe__4yPWVnMb4KIRSg6bDJPej06-NzRhs-GWeJbZLZQ_bIA8W6DY74LZXe-RVF7ld80r7Tyi-Ij0tfr20z945noZkH3_h4zk4qu4h0cbhd9nx1-TS6SaZ31-NRNk0cpIgJSSRpS6iKYqCKgsBpLBWpYQnGDkVVVEalJlVQgdKFFMJoDUYPJEgrhRHYZWa_60IdY6AqXwe_tGGbg8h_TPK_JvnBJN-Z7FLcp3W7_n_1De5ja7s</recordid><startdate>20220423</startdate><enddate>20220423</enddate><creator>Wilson, Debbie L</creator><general>Oxford University Press</general><scope>AAYXX</scope><scope>CITATION</scope></search><sort><creationdate>20220423</creationdate><title>P164 New JIA-at-NRAS resource Medicines in Juvenile Idiopathic Arthritis</title><author>Wilson, Debbie L</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c1433-e23e2ad1fbb75bbe1c63d5e59d18a90fbf8548451f156b2008661867212a20803</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2022</creationdate><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Wilson, Debbie L</creatorcontrib><collection>CrossRef</collection><jtitle>Rheumatology (Oxford, England)</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Wilson, Debbie L</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>P164 New JIA-at-NRAS resource Medicines in Juvenile Idiopathic Arthritis</atitle><jtitle>Rheumatology (Oxford, England)</jtitle><date>2022-04-23</date><risdate>2022</risdate><volume>61</volume><issue>Supplement_1</issue><issn>1462-0324</issn><eissn>1462-0332</eissn><abstract>Abstract Background/Aims Biologics have been commissioned by the NHS for use to treat JIA since 2014. Many of the original biologics that were first developed have since lost exclusivity, allowing other manufacturers to produce highly similar versions (biosimilars). This difference between the originator and the biosimilar has caused confusion within the patient community, especially in how it has been communicated to them. Parents found the concept of biosimilars confusing and wanted more information about this, recommending that written material be provided. Previous conversations with healthcare professionals, parents and young people living with JIA had also found there was a lack of written information on all JIA medications so we looked into how this gap could be filled. Methods Knowing there was a need for this information, a focus group was convened with young people with JIA, parents of children with JIA and healthcare professionals. From this focus group and separate conversations with healthcare professionals it very quickly became apparent a resource not only covering medications for JIA but detailing the wider JIA journey was needed. This resource would need to cover each step from diagnosis to a young person taking control of their disease management. It would also cover how the complexity of the immune system means that some children/young people respond differently to medication; help them to learn about the unpredictability of the disease and to take control of managing their disease, particularly as they move onto adult rheumatology services. NRAS worked collaboratively with health writer and healthcare professionals to make sure this new resource covered all the topics that were discussed at the focus group and detailed all the medications used to treat JIA, including information on the issue of differentiating between biologics and biosimilars. Results The Medicines in JIA booklet is now freely available to all parents, young people and healthcare professionals from the jia.org.uk website. The addition of visuals makes the information easier to navigate, clearer to understand and helps to illustrate the JIA journey. Conclusion The feedback NRAS has received from both healthcare professionals and parents has been very positive: “We think that they’re absolutely fantastic, they cover everything, and I’m so pleased I’ve got these to give to parents and children.” Paediatric Rheumatology Nurse Haywood Hospital “This is brilliant and much needed. Great piece of work much appreciated by all of us”. Lead Nurse Nottingham Children and Young People’s Rheumatology Service “This has been my absolute saviour! It gives you support on administering the medicines and made me feel right at ease after reading it”. Parent of child with JIA Disclosure D.L. Wilson: None.</abstract><pub>Oxford University Press</pub><doi>10.1093/rheumatology/keac133.163</doi><oa>free_for_read</oa></addata></record>
fulltext fulltext
identifier ISSN: 1462-0324
ispartof Rheumatology (Oxford, England), 2022-04, Vol.61 (Supplement_1)
issn 1462-0324
1462-0332
language eng
recordid cdi_crossref_primary_10_1093_rheumatology_keac133_163
source Oxford University Press Journals All Titles (1996-Current); Alma/SFX Local Collection
title P164 New JIA-at-NRAS resource Medicines in Juvenile Idiopathic Arthritis
url https://sfx.bib-bvb.de/sfx_tum?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2024-12-22T19%3A41%3A35IST&url_ver=Z39.88-2004&url_ctx_fmt=infofi/fmt:kev:mtx:ctx&rfr_id=info:sid/primo.exlibrisgroup.com:primo3-Article-oup_cross&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.genre=article&rft.atitle=P164%E2%80%83New%20JIA-at-NRAS%20resource%20Medicines%20in%20Juvenile%20Idiopathic%20Arthritis&rft.jtitle=Rheumatology%20(Oxford,%20England)&rft.au=Wilson,%20Debbie%20L&rft.date=2022-04-23&rft.volume=61&rft.issue=Supplement_1&rft.issn=1462-0324&rft.eissn=1462-0332&rft_id=info:doi/10.1093/rheumatology/keac133.163&rft_dat=%3Coup_cross%3E10.1093/rheumatology/keac133.163%3C/oup_cross%3E%3Curl%3E%3C/url%3E&disable_directlink=true&sfx.directlink=off&sfx.report_link=0&rft_id=info:oai/&rft_id=info:pmid/&rft_oup_id=10.1093/rheumatology/keac133.163&rfr_iscdi=true