Informational Continuity Is Integral for Successful Transition of Adolescents to Adult Care

Chanchlani, Neil; McGee, Marie; McDonagh, Janet E.

doi:10.3899/jrheum.141364

Cited by 10 publications

(6 citation statements)

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“…Conversely, the presence or absence of resources should not define the timing of transfer.Funding of (biological and other) therapies should continue if clinically indicated irrespective of patient age and transfer to adult care.Funding of the paediatric and adult MDTs involved in the transitional care is needed.The transition co-ordinator role and administration support for clinical networks must be funded.The training for the MDT along with continuous professional development support must be funded.The importance of adequate administrative support is likely to be a determinant of successful transfer 45 48 81…”

Section: Resultsmentioning

confidence: 99%

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EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases

et al. 2016

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To develop standards and recommendations for transitional care for young people (YP) with juvenileonset rheumatic and musculoskeletal diseases ( jRMD). The consensus process involved the following: (1) establishing an international expert panel to include patients and representatives from multidisciplinary teams in adult and paediatric rheumatology; (2) a systematic review of published models of transitional care in jRMDs, potential standards and recommendations, strategies for implementation and tools to evaluate services and outcomes; (3) setting the framework, developing the process map and generating a first draft of standards and recommendations; (4) further iteration of recommendations; (5) establishing consensus recommendations with Delphi methodology and (6) establishing standards and quality indicators. The final consensus derived 12 specific recommendations for YP with jRMD focused on transitional care. These included: high-quality, multidisciplinary care starting in early adolescence; the integral role of a transition coordinator; transition policies and protocols; efficient communications; transfer documentation; an open electronic-based platform to access resources; appropriate training for paediatric and adult healthcare teams; secure funding to continue treatments and services into adult rheumatology and the need for increased evidence to inform best practice. These consensus-based recommendations inform strategies to reach optimal outcomes in transitional care for YP with jRMD based on available evidence and expert opinion. They need to be implemented in the context of individual countries, healthcare systems and regulatory frameworks.

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Section: Resultsmentioning

confidence: 99%

“…The importance of adequate administrative support is likely to be a determinant of successful transfer 45 48 81…”

Section: Resultsmentioning

confidence: 99%

EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases

et al. 2016

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“…A clinic-based study from Canada reported that half of the individuals with JIA did not follow up with an adult rheumatologist within 2 years of their last pediatric visit [18]. A clinic based chart review of all transferred patients over 5 years from a clinic in the United Kingdom with an established transition program reported a mean age at transition of 17 years old with a median of 115 days between pediatric and adult visits [19]. The patients that we have identified are likely to have more severe disease given the high proportion of patients receiving and continuing a rheumatologic medication and may have motivated these patients to pursue rheumatology care in adulthood.…”

Section: Discussionmentioning

confidence: 99%

Analysis of health care claims during the peri-transfer stage of transition from pediatric to adult care among juvenile idiopathic arthritis patients

et al. 2016

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BackgroundTo investigate the utilization of health care services before and after transfer from pediatric to adult rheumatology care in clinical practice.MethodsUsing US commercial claims data from January 2005 through August 2012, we identified individuals with a JIA diagnosis code from a pediatric rheumatologist followed by any diagnosis code from an adult rheumatologist. Individuals had 6 months observable time before the last pediatric visit and 6 months after the first adult visit. Medication, emergency room, physical therapy use, and diagnosis codes were compared between the pediatric and adult interval using McNemar’s test. The proportion of days covered (PDC) of TNFi for the time between last pediatric and first adult visit was calculated.ResultsWe identified 58 individuals with JIA who transferred from pediatric to adult rheumatology care after the age of 14. The median age at the last pediatric rheumatology visit was 18.1 years old and the median transfer interval was 195 days. 29 % of patients received NSAIDs in the adult interval compared to 43 % in the pediatric interval (p = 0.06). In the pediatric interval, 71 % received a JRA and 0 % received an RA physician diagnosis code compared to 28 and 45 %, respectively, in the adult interval. The median PDC for patients receiving a TNFi was 0.75 during the transfer interval.ConclusionIndividuals with JIA who transferred to adult care were more likely receive a diagnosis of RA instead of JRA and were less likely to receive NSAIDs, but had no significant immediate changes to other medication use.

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“…We appreciate the contribution of Dr. Chanchlani, et al regarding their retrospective assessment of transfer of adolescent rheumatology patients in the United Kingdom because it demonstrated the real-world challenges of implementing a successful transition program 1 . The UK has always been a leader in rheumatology adolescent transitional care as noted by this group's previous work 2 .…”

Section: To the Editormentioning

confidence: 99%

“…Unfortunately, a medical summary is not routinely done in conjunction with the patient and family, as noted by the Childhood Arthritis and Rheumatology Research Alliance (CARRA) survey of North American pediatric rheumatologists that showed 16% of respondents providing this service 4 . Even when a summary is created by healthcare providers for one another, it is not always shared with the patients (only about 41% for this UK patient cohort received a copy) 1 , limiting its utility in patient education and engagement. Electronic medical records (which may include patient portals) are an opportunity to improve informational continuity, but we must not discount the importance of interpersonal interactions and the team approach to make these transfers successful.…”

Section: To the Editormentioning

confidence: 99%

Dr. Chira replies

Chira

2015

J Rheumatol

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Informational Continuity Is Integral for Successful Transition of Adolescents to Adult Care

Cited by 10 publications

References 10 publications

EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases

EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases

Analysis of health care claims during the peri-transfer stage of transition from pediatric to adult care among juvenile idiopathic arthritis patients

Dr. Chira replies

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