Transition of patients with systemic lupus erythematosus from pediatric to adult-oriented rheumatology care
The transition from pediatric to adult-oriented care for individuals with juvenile-onset systemic lupus erythematosus (SLE) poses significant challenges. This study aimed to assess the outcomes of transitioning patients with juvenile-onset SLE from pediatric to adult-oriented care. Patients with juv...
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Veröffentlicht in: | Turkish journal of medical sciences 2024, Vol.54 (6), p.1198-1204 |
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creator | Şener, Seher Yardimci, Gözde Kübra Batu, Ezgi Deniz Kiliç, Levent Akça, Ümmüşen Kaya Cüceoğlu, Müşerref Kasap Balik, Zeynep Başaran, Özge Bilginer, Yelda Apraş Bilgen, Şule Özen, Seza |
description | The transition from pediatric to adult-oriented care for individuals with juvenile-onset systemic lupus erythematosus (SLE) poses significant challenges. This study aimed to assess the outcomes of transitioning patients with juvenile-onset SLE from pediatric to adult-oriented care.
Patients with juvenile-onset SLE were included in the study. They were transferred in face-to-face meetings where at least one pediatric rheumatologist and one adult rheumatologist were present (transition time: October-December 2020).
The median (25th-75th percentile) age at diagnosis and the time of the first examination in an adult-oriented rheumatology department of the included 65 SLE patients were 14.3 (10.9-15.1) years and 19.2 (18.5-20.4) years, respectively (female/male ratio: 7.1). There was no difference in clinical findings related to SLE between the last pediatric care visit and the last adult-oriented care visit other than constitutional symptoms being more prevalent in adult-oriented care (p = 0.039). There was a higher rate of low medication adherence in the post- than pretransition period (p = 0.003). The number of patients admitted to the emergency department during follow-up in adult-oriented care was higher (p = 0.009). Additionally, patients were more likely to miss at least one scheduled appointment in the post- than pretransition period (p = 0.002).
We observed that patients with juvenile-onset SLE had more constitutional symptoms, lower medication compliance, higher rates of emergency department visits, and more missed appointments in the posttransition period despite a face-to-face structured transition process. We hope that future studies will offer solutions to the problems in transitional care. |
doi_str_mv | 10.55730/1300-0144.5900 |
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Patients with juvenile-onset SLE were included in the study. They were transferred in face-to-face meetings where at least one pediatric rheumatologist and one adult rheumatologist were present (transition time: October-December 2020).
The median (25th-75th percentile) age at diagnosis and the time of the first examination in an adult-oriented rheumatology department of the included 65 SLE patients were 14.3 (10.9-15.1) years and 19.2 (18.5-20.4) years, respectively (female/male ratio: 7.1). There was no difference in clinical findings related to SLE between the last pediatric care visit and the last adult-oriented care visit other than constitutional symptoms being more prevalent in adult-oriented care (p = 0.039). There was a higher rate of low medication adherence in the post- than pretransition period (p = 0.003). The number of patients admitted to the emergency department during follow-up in adult-oriented care was higher (p = 0.009). Additionally, patients were more likely to miss at least one scheduled appointment in the post- than pretransition period (p = 0.002).
We observed that patients with juvenile-onset SLE had more constitutional symptoms, lower medication compliance, higher rates of emergency department visits, and more missed appointments in the posttransition period despite a face-to-face structured transition process. We hope that future studies will offer solutions to the problems in transitional care.</description><identifier>ISSN: 1300-0144</identifier><identifier>EISSN: 1303-6165</identifier><identifier>EISSN: 1300-0144</identifier><identifier>DOI: 10.55730/1300-0144.5900</identifier><identifier>PMID: 39734331</identifier><language>eng</language><publisher>Turkey: Scientific and Technological Research Council of Turkey (TUBITAK)</publisher><subject>Adolescent ; Adult ; Child ; Female ; Humans ; Lupus Erythematosus, Systemic - epidemiology ; Lupus Erythematosus, Systemic - therapy ; Male ; Medication Adherence - statistics & numerical data ; Rheumatology ; Transition to Adult Care - statistics & numerical data ; Young Adult</subject><ispartof>Turkish journal of medical sciences, 2024, Vol.54 (6), p.1198-1204</ispartof><rights>TÜBİTAK.</rights><rights>TÜBİTAK 2024</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><orcidid>0000-0003-3115-4187 ; 0000-0002-6232-0072 ; 0000-0003-1064-9690 ; 0000-0002-8534-0930 ; 0000-0001-8208-1585 ; 0000-0002-9957-8894 ; 0000-0002-0426-9432 ; 0000-0003-1564-8996 ; 0000-0001-9543-4685 ; 0000-0003-1065-2363 ; 0000-0003-2883-7868</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC11673664/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC11673664/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,723,776,780,881,4010,27902,27903,27904,53769,53771</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/39734331$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Şener, Seher</creatorcontrib><creatorcontrib>Yardimci, Gözde Kübra</creatorcontrib><creatorcontrib>Batu, Ezgi Deniz</creatorcontrib><creatorcontrib>Kiliç, Levent</creatorcontrib><creatorcontrib>Akça, Ümmüşen Kaya</creatorcontrib><creatorcontrib>Cüceoğlu, Müşerref Kasap</creatorcontrib><creatorcontrib>Balik, Zeynep</creatorcontrib><creatorcontrib>Başaran, Özge</creatorcontrib><creatorcontrib>Bilginer, Yelda</creatorcontrib><creatorcontrib>Apraş Bilgen, Şule</creatorcontrib><creatorcontrib>Özen, Seza</creatorcontrib><title>Transition of patients with systemic lupus erythematosus from pediatric to adult-oriented rheumatology care</title><title>Turkish journal of medical sciences</title><addtitle>Turk J Med Sci</addtitle><description>The transition from pediatric to adult-oriented care for individuals with juvenile-onset systemic lupus erythematosus (SLE) poses significant challenges. This study aimed to assess the outcomes of transitioning patients with juvenile-onset SLE from pediatric to adult-oriented care.
Patients with juvenile-onset SLE were included in the study. They were transferred in face-to-face meetings where at least one pediatric rheumatologist and one adult rheumatologist were present (transition time: October-December 2020).
The median (25th-75th percentile) age at diagnosis and the time of the first examination in an adult-oriented rheumatology department of the included 65 SLE patients were 14.3 (10.9-15.1) years and 19.2 (18.5-20.4) years, respectively (female/male ratio: 7.1). There was no difference in clinical findings related to SLE between the last pediatric care visit and the last adult-oriented care visit other than constitutional symptoms being more prevalent in adult-oriented care (p = 0.039). There was a higher rate of low medication adherence in the post- than pretransition period (p = 0.003). The number of patients admitted to the emergency department during follow-up in adult-oriented care was higher (p = 0.009). Additionally, patients were more likely to miss at least one scheduled appointment in the post- than pretransition period (p = 0.002).
We observed that patients with juvenile-onset SLE had more constitutional symptoms, lower medication compliance, higher rates of emergency department visits, and more missed appointments in the posttransition period despite a face-to-face structured transition process. We hope that future studies will offer solutions to the problems in transitional care.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Child</subject><subject>Female</subject><subject>Humans</subject><subject>Lupus Erythematosus, Systemic - epidemiology</subject><subject>Lupus Erythematosus, Systemic - therapy</subject><subject>Male</subject><subject>Medication Adherence - statistics & numerical data</subject><subject>Rheumatology</subject><subject>Transition to Adult Care - statistics & numerical data</subject><subject>Young Adult</subject><issn>1300-0144</issn><issn>1303-6165</issn><issn>1300-0144</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2024</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNpVkMtOxSAQhonReF-7M7xAj0MHqF0ZY7wlJm50TWgBD9oeGqCa8_a2HjW6mts__0w-Qk4YLISoEM4YAhTAOF-IGmCL7E8NLCSTYvsr3wz3yEFKrwAlclHvkj2sK-SIbJ-8PUW9Sj77sKLB0UFnb1c50Q-flzStU7a9b2k3DmOiNq7z0vY6hzRVLoaeDtZ4neMkyYFqM3a5CHF2sIbGpR1ncRde1rTV0R6RHae7ZI-_4yF5vrl-urorHh5v768uH4qW1QiFE6XmtuFQ1u7cmaqpQErpUAtstGwqW3KNYCRUxmkhOAcQjauNQFNyiwYPycXGdxib3pp2eifqTg3R9zquVdBe_Z-s_FK9hHfFmKxQSj45nG0c2hhSitb9LjNQX-DVzFbNbNUMfto4_XvzV_9DGj8Bh-KB-w</recordid><startdate>2024</startdate><enddate>2024</enddate><creator>Şener, Seher</creator><creator>Yardimci, Gözde Kübra</creator><creator>Batu, Ezgi Deniz</creator><creator>Kiliç, Levent</creator><creator>Akça, Ümmüşen Kaya</creator><creator>Cüceoğlu, Müşerref Kasap</creator><creator>Balik, Zeynep</creator><creator>Başaran, Özge</creator><creator>Bilginer, Yelda</creator><creator>Apraş Bilgen, Şule</creator><creator>Özen, Seza</creator><general>Scientific and Technological Research Council of Turkey (TUBITAK)</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0003-3115-4187</orcidid><orcidid>https://orcid.org/0000-0002-6232-0072</orcidid><orcidid>https://orcid.org/0000-0003-1064-9690</orcidid><orcidid>https://orcid.org/0000-0002-8534-0930</orcidid><orcidid>https://orcid.org/0000-0001-8208-1585</orcidid><orcidid>https://orcid.org/0000-0002-9957-8894</orcidid><orcidid>https://orcid.org/0000-0002-0426-9432</orcidid><orcidid>https://orcid.org/0000-0003-1564-8996</orcidid><orcidid>https://orcid.org/0000-0001-9543-4685</orcidid><orcidid>https://orcid.org/0000-0003-1065-2363</orcidid><orcidid>https://orcid.org/0000-0003-2883-7868</orcidid></search><sort><creationdate>2024</creationdate><title>Transition of patients with systemic lupus erythematosus from pediatric to adult-oriented rheumatology care</title><author>Şener, Seher ; Yardimci, Gözde Kübra ; Batu, Ezgi Deniz ; Kiliç, Levent ; Akça, Ümmüşen Kaya ; Cüceoğlu, Müşerref Kasap ; Balik, Zeynep ; Başaran, Özge ; Bilginer, Yelda ; Apraş Bilgen, Şule ; Özen, Seza</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c1930-f52a4eb4029f8fd7b70666f3a53ba6b7e24a30d607dfa5544005bf9d53d24e3d3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2024</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>Child</topic><topic>Female</topic><topic>Humans</topic><topic>Lupus Erythematosus, Systemic - epidemiology</topic><topic>Lupus Erythematosus, Systemic - therapy</topic><topic>Male</topic><topic>Medication Adherence - statistics & numerical data</topic><topic>Rheumatology</topic><topic>Transition to Adult Care - statistics & numerical data</topic><topic>Young Adult</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Şener, Seher</creatorcontrib><creatorcontrib>Yardimci, Gözde Kübra</creatorcontrib><creatorcontrib>Batu, Ezgi Deniz</creatorcontrib><creatorcontrib>Kiliç, Levent</creatorcontrib><creatorcontrib>Akça, Ümmüşen Kaya</creatorcontrib><creatorcontrib>Cüceoğlu, Müşerref Kasap</creatorcontrib><creatorcontrib>Balik, Zeynep</creatorcontrib><creatorcontrib>Başaran, Özge</creatorcontrib><creatorcontrib>Bilginer, Yelda</creatorcontrib><creatorcontrib>Apraş Bilgen, Şule</creatorcontrib><creatorcontrib>Özen, Seza</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Turkish journal of medical sciences</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Şener, Seher</au><au>Yardimci, Gözde Kübra</au><au>Batu, Ezgi Deniz</au><au>Kiliç, Levent</au><au>Akça, Ümmüşen Kaya</au><au>Cüceoğlu, Müşerref Kasap</au><au>Balik, Zeynep</au><au>Başaran, Özge</au><au>Bilginer, Yelda</au><au>Apraş Bilgen, Şule</au><au>Özen, Seza</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Transition of patients with systemic lupus erythematosus from pediatric to adult-oriented rheumatology care</atitle><jtitle>Turkish journal of medical sciences</jtitle><addtitle>Turk J Med Sci</addtitle><date>2024</date><risdate>2024</risdate><volume>54</volume><issue>6</issue><spage>1198</spage><epage>1204</epage><pages>1198-1204</pages><issn>1300-0144</issn><eissn>1303-6165</eissn><eissn>1300-0144</eissn><abstract>The transition from pediatric to adult-oriented care for individuals with juvenile-onset systemic lupus erythematosus (SLE) poses significant challenges. This study aimed to assess the outcomes of transitioning patients with juvenile-onset SLE from pediatric to adult-oriented care.
Patients with juvenile-onset SLE were included in the study. They were transferred in face-to-face meetings where at least one pediatric rheumatologist and one adult rheumatologist were present (transition time: October-December 2020).
The median (25th-75th percentile) age at diagnosis and the time of the first examination in an adult-oriented rheumatology department of the included 65 SLE patients were 14.3 (10.9-15.1) years and 19.2 (18.5-20.4) years, respectively (female/male ratio: 7.1). There was no difference in clinical findings related to SLE between the last pediatric care visit and the last adult-oriented care visit other than constitutional symptoms being more prevalent in adult-oriented care (p = 0.039). There was a higher rate of low medication adherence in the post- than pretransition period (p = 0.003). The number of patients admitted to the emergency department during follow-up in adult-oriented care was higher (p = 0.009). Additionally, patients were more likely to miss at least one scheduled appointment in the post- than pretransition period (p = 0.002).
We observed that patients with juvenile-onset SLE had more constitutional symptoms, lower medication compliance, higher rates of emergency department visits, and more missed appointments in the posttransition period despite a face-to-face structured transition process. We hope that future studies will offer solutions to the problems in transitional care.</abstract><cop>Turkey</cop><pub>Scientific and Technological Research Council of Turkey (TUBITAK)</pub><pmid>39734331</pmid><doi>10.55730/1300-0144.5900</doi><tpages>7</tpages><orcidid>https://orcid.org/0000-0003-3115-4187</orcidid><orcidid>https://orcid.org/0000-0002-6232-0072</orcidid><orcidid>https://orcid.org/0000-0003-1064-9690</orcidid><orcidid>https://orcid.org/0000-0002-8534-0930</orcidid><orcidid>https://orcid.org/0000-0001-8208-1585</orcidid><orcidid>https://orcid.org/0000-0002-9957-8894</orcidid><orcidid>https://orcid.org/0000-0002-0426-9432</orcidid><orcidid>https://orcid.org/0000-0003-1564-8996</orcidid><orcidid>https://orcid.org/0000-0001-9543-4685</orcidid><orcidid>https://orcid.org/0000-0003-1065-2363</orcidid><orcidid>https://orcid.org/0000-0003-2883-7868</orcidid><oa>free_for_read</oa></addata></record> |
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subjects | Adolescent Adult Child Female Humans Lupus Erythematosus, Systemic - epidemiology Lupus Erythematosus, Systemic - therapy Male Medication Adherence - statistics & numerical data Rheumatology Transition to Adult Care - statistics & numerical data Young Adult |
title | Transition of patients with systemic lupus erythematosus from pediatric to adult-oriented rheumatology care |
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