Skip to main content
Top
Published in: Rheumatology International 10/2015

01-10-2015 | Original Article - Recommendations and Guidelines

Consensus of the Spanish society of pediatric rheumatology for transition management from pediatric to adult care in rheumatic patients with childhood onset

Authors: Inmaculada Calvo, Jordi Antón, Sagrario Bustabad, Marisol Camacho, Jaime de Inocencio, Mª Luz Gamir, Jenaro Graña, Lucía La Cruz, Juan Carlos López Robledillo, Marta Medrano, Rosa Merino, Consuelo Modesto, Esmeralda Nuñez, Mª Jesús Rua, Vicenç Torrente-Segarra, Carmen Vargas, Loreto Carmona, Estíbaliz Loza

Published in: Rheumatology International | Issue 10/2015

Login to get access

Abstract

To develop recommendations on the transition from pediatric care to adult care in patients with chronic inflammatory rheumatic diseases with childhood onset based. Recommendations were generated following nominal group methodology and Delphi technique. A panel of 16 experts was established. A systematic literature review (on transitional care) and a narrative review were performed and presented to the panel in the first panel meeting to be discussed. A first draft of recommendations was generated and circulated. Focal groups with adolescents, young adults and parents were organized. In a second meeting, the focus group results along with the input from invited psychologist were used to establish definitive recommendations. Then, a Delphi process (two rounds) was carried out. A group of 72 pediatric and adult rheumatologists took part. Recommendations were voted from 1 (total disagreement) to 10 (total agreement). We defined agreement if at least 70 % voted ≥7. The level of evidence and grade or recommendation was assessed using the Oxford center for evidence-based medicine levels of evidence. Transition care was defined as a purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic inflammatory rheumatic diseases with childhood onset as they move from child-centered to adult-oriented healthcare systems. The consensus covers: transition needs, barriers and facilitators, transitional issues (objectives, participants, content, phases, timing, plans, documentation and responsibilities), physicians’ and other health professionals’ knowledge and skill requirements, models/programs, and strategies and guideline for implementation. Preliminary recommendations and agreement grade are shown in the Table (first Delphi round). These recommendations are intended to provide health professionals, patients, families and other stakeholders with a consensus on the transition process from pediatric to adult care.
Appendix
Available only for authorised users
Literature
1.
go back to reference Gurion R, Lehman TJ, Moorthy LN (2012) Systemic arthritis in children: a review of clinical presentation and treatment. Int J Inflam 2012:271569 Epub 2012/01/12 PubMedCentralCrossRefPubMed Gurion R, Lehman TJ, Moorthy LN (2012) Systemic arthritis in children: a review of clinical presentation and treatment. Int J Inflam 2012:271569 Epub 2012/01/12 PubMedCentralCrossRefPubMed
2.
go back to reference Kessler EA, Becker ML (2014) Therapeutic advancements in juvenile idiopathic arthritis. Best Pract Res Clin Rheumatol 28(2):293–313 Epub 2014/06/30 CrossRefPubMed Kessler EA, Becker ML (2014) Therapeutic advancements in juvenile idiopathic arthritis. Best Pract Res Clin Rheumatol 28(2):293–313 Epub 2014/06/30 CrossRefPubMed
3.
go back to reference McDonagh JE, Shaw KL, Southwood TR (2006) Growing up and moving on in rheumatology: development and preliminary evaluation of a transitional care programme for a multicentre cohort of adolescents with juvenile idiopathic arthritis. J Child Health Care 10(1):22–42 Epub 2006/02/09 CrossRefPubMed McDonagh JE, Shaw KL, Southwood TR (2006) Growing up and moving on in rheumatology: development and preliminary evaluation of a transitional care programme for a multicentre cohort of adolescents with juvenile idiopathic arthritis. J Child Health Care 10(1):22–42 Epub 2006/02/09 CrossRefPubMed
4.
go back to reference Rettig P, Athreya BH (1991) Adolescents with chronic disease. Transition to adult health care. Arthritis care and research. Off J Arthritis Health Prof Assoc 4(4):174–180 Epub 1991/12/01 Rettig P, Athreya BH (1991) Adolescents with chronic disease. Transition to adult health care. Arthritis care and research. Off J Arthritis Health Prof Assoc 4(4):174–180 Epub 1991/12/01
5.
go back to reference Zack J, Jacobs CP, Keenan PM, Harney K, Woods ER, Colin AA et al (2003) Perspectives of patients with cystic fibrosis on preventive counseling and transition to adult care. Pediatr Pulmonol 36(5):376–383 Epub 2003/10/02 CrossRefPubMed Zack J, Jacobs CP, Keenan PM, Harney K, Woods ER, Colin AA et al (2003) Perspectives of patients with cystic fibrosis on preventive counseling and transition to adult care. Pediatr Pulmonol 36(5):376–383 Epub 2003/10/02 CrossRefPubMed
6.
go back to reference Steinkamp G, Ullrich G, Muller C, Fabel H, von der Hardt H (2001) Transition of adult patients with cystic fibrosis from paediatric to adult care–the patients’ perspective before and after start-up of an adult clinic. Eur J Med Res 6(2):85–92 Epub 2001/04/21 PubMed Steinkamp G, Ullrich G, Muller C, Fabel H, von der Hardt H (2001) Transition of adult patients with cystic fibrosis from paediatric to adult care–the patients’ perspective before and after start-up of an adult clinic. Eur J Med Res 6(2):85–92 Epub 2001/04/21 PubMed
7.
go back to reference McDonagh JE, Southwood TR, Shaw KL (2007) The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford, England) 46(1):161–168 Epub 2006/06/23 CrossRef McDonagh JE, Southwood TR, Shaw KL (2007) The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford, England) 46(1):161–168 Epub 2006/06/23 CrossRef
8.
go back to reference Tucker LB, Cabral DA (2005) Transition of the adolescent patient with rheumatic disease: issues to consider. Pediatr Clin North Am 52(2):641–652 Epub 2005/04/12 CrossRefPubMed Tucker LB, Cabral DA (2005) Transition of the adolescent patient with rheumatic disease: issues to consider. Pediatr Clin North Am 52(2):641–652 Epub 2005/04/12 CrossRefPubMed
9.
go back to reference Niewerth M, Minden K, Klotsche J, Horneff G (2014) [Therapy of juvenile idiopathic arthritis in early adulthood with biologics: transition from pediatric to adult care]. Zeitschrift fur Rheumatologie 73(6):532–40. Epub 2014/08/07. Biologikatherapie der juvenilen idiopathische Arthritis im jungen Erwachsenenalter: Ubergang von der padiatrischen in die Erwachsenenversorgung Niewerth M, Minden K, Klotsche J, Horneff G (2014) [Therapy of juvenile idiopathic arthritis in early adulthood with biologics: transition from pediatric to adult care]. Zeitschrift fur Rheumatologie 73(6):532–40. Epub 2014/08/07. Biologikatherapie der juvenilen idiopathische Arthritis im jungen Erwachsenenalter: Ubergang von der padiatrischen in die Erwachsenenversorgung
10.
go back to reference Hartnett T (2007) Who will treat arthritis in 2025? Rheumatologist 1:12–13 Hartnett T (2007) Who will treat arthritis in 2025? Rheumatologist 1:12–13
11.
go back to reference Castrejon I (2012) [Transitional care programs for patients with rheumatic diseases: review of the literature]. Reumatologia clinica 8(1):20–6. Epub 2011/11/18. Unidades de transicion para pacientes con patologia reumatica: revision de la literatura Castrejon I (2012) [Transitional care programs for patients with rheumatic diseases: review of the literature]. Reumatologia clinica 8(1):20–6. Epub 2011/11/18. Unidades de transicion para pacientes con patologia reumatica: revision de la literatura
12.
go back to reference McDonagh JE, Southwood TR, Shaw KL (2004) Unmet education and training needs of rheumatology health professionals in adolescent health and transitional care. Rheumatology (Oxford, England) 43(6):737–743 Epub 2004/03/05 CrossRef McDonagh JE, Southwood TR, Shaw KL (2004) Unmet education and training needs of rheumatology health professionals in adolescent health and transitional care. Rheumatology (Oxford, England) 43(6):737–743 Epub 2004/03/05 CrossRef
13.
go back to reference Shaw KL, Southwood TR, McDonagh JE (2004) Developing a programme of transitional care for adolescents with juvenile idiopathic arthritis: results of a postal survey. Rheumatology (Oxford, England) 43(2):211–219 Epub 2003/10/03 CrossRef Shaw KL, Southwood TR, McDonagh JE (2004) Developing a programme of transitional care for adolescents with juvenile idiopathic arthritis: results of a postal survey. Rheumatology (Oxford, England) 43(2):211–219 Epub 2003/10/03 CrossRef
14.
go back to reference Chira P, Ronis T, Ardoin S, White P (2014) Transitioning youth with rheumatic conditions: perspectives of pediatric rheumatology providers in the United States and Canada. J Rheumatol 41(4):768–779 Epub 2014/03/04 CrossRefPubMed Chira P, Ronis T, Ardoin S, White P (2014) Transitioning youth with rheumatic conditions: perspectives of pediatric rheumatology providers in the United States and Canada. J Rheumatol 41(4):768–779 Epub 2014/03/04 CrossRefPubMed
15.
go back to reference Richards M, Vostanis P (2004) Interprofessional perspectives on transitional mental health services for young people aged 16–19 years. J Interprof Care 18(2):115–128 Epub 2004/06/19 CrossRefPubMed Richards M, Vostanis P (2004) Interprofessional perspectives on transitional mental health services for young people aged 16–19 years. J Interprof Care 18(2):115–128 Epub 2004/06/19 CrossRefPubMed
16.
go back to reference Packham JC, Hall MA (2002) Long-term follow-up of 246 adults with juvenile idiopathic arthritis: social function, relationships and sexual activity. Rheumatology (Oxford, England) 41(12):1440–1443 Epub 2002/12/07 CrossRef Packham JC, Hall MA (2002) Long-term follow-up of 246 adults with juvenile idiopathic arthritis: social function, relationships and sexual activity. Rheumatology (Oxford, England) 41(12):1440–1443 Epub 2002/12/07 CrossRef
17.
go back to reference A consensus statement on health care transitions for young adults with special health care needs. Pediatrics (2002) 110(6 Pt 2):1304–1306. Epub 2002/11/29 A consensus statement on health care transitions for young adults with special health care needs. Pediatrics (2002) 110(6 Pt 2):1304–1306. Epub 2002/11/29
18.
go back to reference Leak AM (2000) Improving adolescent rheumatology services in the UK. Rheumatology (Oxford, England) 39(6):575–579 Epub 2000/07/11 CrossRef Leak AM (2000) Improving adolescent rheumatology services in the UK. Rheumatology (Oxford, England) 39(6):575–579 Epub 2000/07/11 CrossRef
19.
go back to reference McDonagh JE, Foster HE, Hall MA, Chamberlain MA (2000) Audit of rheumatology services for adolescents and young adults in the UK. British paediatric rheumatology group. Rheumatology (Oxford, England) 39(6):596–602 Epub 2000/07/11 CrossRef McDonagh JE, Foster HE, Hall MA, Chamberlain MA (2000) Audit of rheumatology services for adolescents and young adults in the UK. British paediatric rheumatology group. Rheumatology (Oxford, England) 39(6):596–602 Epub 2000/07/11 CrossRef
20.
go back to reference Robertson LP, McDonagh JE, Southwood TR, Shaw KL (2006) Growing up and moving on. A multicentre UK audit of the transfer of adolescents with juvenile idiopathic arthritis from paediatric to adult centred care. Ann Rheum Dis 65(1):74–80 Epub 2005/07/05 PubMedCentralCrossRefPubMed Robertson LP, McDonagh JE, Southwood TR, Shaw KL (2006) Growing up and moving on. A multicentre UK audit of the transfer of adolescents with juvenile idiopathic arthritis from paediatric to adult centred care. Ann Rheum Dis 65(1):74–80 Epub 2005/07/05 PubMedCentralCrossRefPubMed
21.
go back to reference Scal P, Ireland M (2005) Addressing transition to adult health care for adolescents with special health care needs. Pediatrics 115(6):1607–1612 Epub 2005/06/03 CrossRefPubMed Scal P, Ireland M (2005) Addressing transition to adult health care for adolescents with special health care needs. Pediatrics 115(6):1607–1612 Epub 2005/06/03 CrossRefPubMed
22.
go back to reference Lotstein DS, McPherson M, Strickland B, Newacheck PW (2005) Transition planning for youth with special health care needs: results from the National survey of children with special health care needs. Pediatrics 115(6):1562–1568 Epub 2005/06/03 CrossRefPubMed Lotstein DS, McPherson M, Strickland B, Newacheck PW (2005) Transition planning for youth with special health care needs: results from the National survey of children with special health care needs. Pediatrics 115(6):1562–1568 Epub 2005/06/03 CrossRefPubMed
23.
go back to reference McPherson M, Weissman G, Strickland BB, van Dyck PC, Blumberg SJ, Newacheck PW (2004) Implementing community-based systems of services for children and youths with special health care needs: how well are we doing? Pediatrics 113(5 Suppl):1538–1544 Epub 2004/05/04 PubMed McPherson M, Weissman G, Strickland BB, van Dyck PC, Blumberg SJ, Newacheck PW (2004) Implementing community-based systems of services for children and youths with special health care needs: how well are we doing? Pediatrics 113(5 Suppl):1538–1544 Epub 2004/05/04 PubMed
25.
go back to reference Churchill R, Allen J, Denman S, Williams D, Fielding K, von Fragstein M (2000) Do the attitudes and beliefs of young teenagers towards general practice influence actual consultation behaviour? Br J Gen Pract 50(461):953–957 Epub 2001/02/28 PubMedCentralPubMed Churchill R, Allen J, Denman S, Williams D, Fielding K, von Fragstein M (2000) Do the attitudes and beliefs of young teenagers towards general practice influence actual consultation behaviour? Br J Gen Pract 50(461):953–957 Epub 2001/02/28 PubMedCentralPubMed
26.
go back to reference Lotstein DS, Ghandour R, Cash A, McGuire E, Strickland B, Newacheck P (2009) Planning for health care transitions: results from the 2005–2006 national survey of children with special health care needs. Pediatrics 123(1):e145–e152 Epub 2009/01/02 CrossRefPubMed Lotstein DS, Ghandour R, Cash A, McGuire E, Strickland B, Newacheck P (2009) Planning for health care transitions: results from the 2005–2006 national survey of children with special health care needs. Pediatrics 123(1):e145–e152 Epub 2009/01/02 CrossRefPubMed
27.
go back to reference McDonagh JE (2005) Growing up and moving on: transition from pediatric to adult care. Pediatr Transpl 9(3):364–372 Epub 2005/05/25 CrossRef McDonagh JE (2005) Growing up and moving on: transition from pediatric to adult care. Pediatr Transpl 9(3):364–372 Epub 2005/05/25 CrossRef
30.
go back to reference McDonagh JE (2008) Young people first, juvenile idiopathic arthritis second: transitional care in rheumatology. Arthritis Rheum 59(8):1162–1170 Epub 2008/08/01 CrossRefPubMed McDonagh JE (2008) Young people first, juvenile idiopathic arthritis second: transitional care in rheumatology. Arthritis Rheum 59(8):1162–1170 Epub 2008/08/01 CrossRefPubMed
31.
go back to reference While A, Forbes A, Ullman R, Lewis S, Mathes L, Griffiths P (2004) Good practices that address continuity during transition from child to adult care: synthesis of the evidence. Child Care Health Dev 30(5):439–452 Epub 2004/08/24 CrossRefPubMed While A, Forbes A, Ullman R, Lewis S, Mathes L, Griffiths P (2004) Good practices that address continuity during transition from child to adult care: synthesis of the evidence. Child Care Health Dev 30(5):439–452 Epub 2004/08/24 CrossRefPubMed
32.
go back to reference Robertson L (2006) When should young people with chronic rheumatic disease move from paediatric to adult-centred care? Best Pract Res Clin Rheumatol 20(2):387–397 Epub 2006/03/21 CrossRefPubMed Robertson L (2006) When should young people with chronic rheumatic disease move from paediatric to adult-centred care? Best Pract Res Clin Rheumatol 20(2):387–397 Epub 2006/03/21 CrossRefPubMed
Metadata
Title
Consensus of the Spanish society of pediatric rheumatology for transition management from pediatric to adult care in rheumatic patients with childhood onset
Authors
Inmaculada Calvo
Jordi Antón
Sagrario Bustabad
Marisol Camacho
Jaime de Inocencio
Mª Luz Gamir
Jenaro Graña
Lucía La Cruz
Juan Carlos López Robledillo
Marta Medrano
Rosa Merino
Consuelo Modesto
Esmeralda Nuñez
Mª Jesús Rua
Vicenç Torrente-Segarra
Carmen Vargas
Loreto Carmona
Estíbaliz Loza
Publication date
01-10-2015
Publisher
Springer Berlin Heidelberg
Published in
Rheumatology International / Issue 10/2015
Print ISSN: 0172-8172
Electronic ISSN: 1437-160X
DOI
https://doi.org/10.1007/s00296-015-3273-6

Other articles of this Issue 10/2015

Rheumatology International 10/2015 Go to the issue

Short Communication - Pathology Reviews

Semaphorin 3A: an immunoregulator in systemic sclerosis

Live Webinar | 27-06-2024 | 18:00 (CEST)

Keynote webinar | Spotlight on medication adherence

Live: Thursday 27th June 2024, 18:00-19:30 (CEST)

WHO estimates that half of all patients worldwide are non-adherent to their prescribed medication. The consequences of poor adherence can be catastrophic, on both the individual and population level.

Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.

Prof. Kevin Dolgin
Prof. Florian Limbourg
Prof. Anoop Chauhan
Developed by: Springer Medicine
Obesity Clinical Trial Summary

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.

Developed by: Springer Medicine