SpringerLink
Log in

Design of a Rheumatology Transition Clinic for a Resource-Constrained Setting

  • Original Article
  • Published:
Indian Journal of Pediatrics Aims and scope Submit manuscript

Abstract

Objectives

To describe the design process of a medical care program for adolescents with pediatric onset rheumatic diseases (PRD) during the transition from pediatric to adult care in a resource-constrained hospital.

Methods

The model of attention was developed in three steps: 1) the selection of a multidisciplinary team, 2) the evaluation of the state of readiness of patients and caregivers for the transition, and 3) the design of a strategy of attention according to local needs. The results of the first two steps were used in order to develop the strategy of attention.

Results

The transition process was structured in three stages: pretransition (at pediatric rheumatology clinic), Transition Clinic for Adolescents with Rheumatic Diseases (TCARD, the main intervention), and post-transition (at adult rheumatology clinic). Each stage was divided, in turn, into a variable number of phases (8 in total), which included activities and goals that patients and caregivers were to accomplish during the process. A multidisciplinary approach was planned by pediatric and adult rheumatologists, nutritionists, physiatrists, psychiatrist, psychologist, nurse, and social worker. During TCARD, counseling, education, nutritional, physical, and mental health interventions were considered.

Conclusions

The proposed transition model for patients with rheumatic diseases can be a useful tool in develo** countries.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

Data Availability

On reasonable request.

References

  1. Cohen EM, Morley-Fletcher A, Mehta DH, Lee YC. A systematic review of psychosocial therapies for children with rheumatic diseases. Pediatr Rheumatol Online J. 2017;15:6.

    Article  Google Scholar 

  2. Wells DK, James K, Stewart JL, et al. The care of my child with cancer: a new instrument to measure caregiving demand in parents of children with cancer. J Pediatr Nurs. 2002;17:201–10.

    Article  Google Scholar 

  3. Klassen A, Klaassen RJ, Dix D, Pritchard S, Yanofsky R, Sung L. Caregiving demands in parents of children with cancer: psychometric validation of the Care of My Child with Cancer questionnaire. J Pediatr Nurs. 2010;25:258–63.

    Article  Google Scholar 

  4. Blum RW, Garell D, Hodgman CH, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993;14:570–6.

  5. McDonagh JE, Farre A. Are we there yet? An update on transitional care in rheumatology. Arthritis Res Ther. 2018;20:5.

  6. Sabbagh S, Ronis T, White PH. Pediatric rheumatology: addressing the transition to adult–orientated health care. Open Access Rheumatol. 2018;10:83–95.

    Article  Google Scholar 

  7. Sadun RE, Schanberg LE. Transition and transfer of the patient with paediatric-onset lupus: a practical approach for paediatric and adult rheumatology practices. Lupus Sci Med. 2018;5:e000282.

  8. Anelli CG, Amorim ALM, Osaku FM, Terreri MT, Len CA, Reiff A. Challenges in transitioning adolescents and young adults with rheumatologic diseases to adult care in a develo** country – the Brazilian experience. Pediatr Rheumatol Online J. 2017;15:47.

    Article  Google Scholar 

  9. González F, Rodríguez Celin MLM, et al. Status of the transition/transfer process for adolescents with chronic diseases at a national pediatric referral hospital in Argentina. Arch Argent Pediatr. 2017;115:562–9.

    Google Scholar 

  10. Pelaez-Ballestas I, Romero-Mendoza M, Ramos-Lira L, Caballero R, Hernández-Garduño A, Burgos-Vargas R. Illness trajectories in Mexican children with juvenile idiopathic arthritis and their parents. Rheumatol (Oxford). 2006;45:1399–403.

  11. Ammerlaan JW, van Os-Medendorp H, de Boer-Nijhof NC, Prakken B, Bijlsma JWJ, Kruize AA. The most important needs and preferences of patients for support from health care professionals: A reflective practice on (transitional) care for young adults with Juvenile Idiopathic Arthritis. Patient Educ Couns. 2017;100:1961–4.

    Article  Google Scholar 

  12. Howland S, Fisher K. Looking through the patient lens – Improving best practice for young people with juvenile idiopathic arthritis transitioning into adult care. Springerplus. 2015;4:111.

    Article  Google Scholar 

  13. Tunnicliffe DJ, Singh-Grewal D, Chaitow J, et al. Lupus means sacrifices: perspectives of adolescents and young adults with systemic lupus erythematosus. Arthritis Care Res (Hoboken). 2016;68:828–37.

    Article  Google Scholar 

  14. Relas H, Kosola S. Acceptable quality of life and low disease activity achievable among transition phase patients with rheumatic disease. Clin Rheumatol. 2019;38:785–91.

    Article  Google Scholar 

  15. Clemente D, Leon L, Foster H, Minden K, Carmona L. Systematic review and critical appraisal of transitional care programmes in rheumatology. Semin Arthritis Rheum. 2016;46:372–9.

    Article  Google Scholar 

  16. Got Transition. Transitioning Youth to an Adult Health Care Clinician. Available at: https://www.gottransition.org/six-core-elements/transitioning-youth-to-adult/transition-readiness.cfm. Accessed on 20 March 2021.

  17. Sheehan DV, Sheehan KH, Shytle RD, et al. Reliability and validity of the mini international neuropsychiatric interview for children and adolescents (MINI-KID). J Clin Psychiatry. 2010;71:313–26.

    Article  Google Scholar 

  18. Smith GL, McGuinness TM. Adolescent psychosocial assessment: The HEEADSSS. J Psychosoc Nurs Ment Health Serv. 2017;55:24–7.

    Article  Google Scholar 

  19. McDonagh JE, Southwood TR, Shaw KL; British Society of Paediatric and Adolescent Rheumatology. The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis. Rheumatol (Oxford). 2007;46:161–8.

  20. Raunsbæk Knudsen L, de Thurah A, Bjerrum M. Transition from child to adult care in an outpatient clinic for adolescents with juvenile idiopathic arthritis: An inductive qualitative study. Nurs Open. 2018;5:546–54.

    Article  Google Scholar 

  21. Walter M, Hazes JM, Dolhain RJ, van Pelt P, van Dijk A, Kamphuis S. Development of a clinical transition pathway for adolescents in the Netherlands. Nurs Child Young People. 2017;29:37–43.

    Article  Google Scholar 

  22. Chira P, Ronis T, Ardoin S, White P. Transitioning youth with rheumatic conditions: perspectives of pediatric rheumatology providers in the United States and Canada. J Rheumatol. 2014;41:768–79.

    Article  Google Scholar 

  23. Clemente D, Leon L, Foster H, Carmona L, Minden K. Transitional care for rheumatic conditions in Europe: current clinical practice and available resources. Pediatr Rheumatol Online J. 2017;15:49.

    Article  Google Scholar 

  24. Chaney JM, Gamwell KL, Baraldi AN, et al. Parent perceptions of illness uncertainty and child depressive symptoms in juvenile rheumatic diseases: examining caregiver demand and parent distress as mediators. J Pediatr Psychol. 2016;41:941–51.

    Article  Google Scholar 

  25. Foster HE, Minden K, Clemente D, et al. EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases. Ann Rheum Dis. 2017;76:639–46.

    Article  Google Scholar 

  26. Luque Ramos A, Hoffmann F, Albrecht K, Klotsche J, Zink A, Minden K. Transition to adult rheumatology care is necessary to maintain DMARD therapy in young people with juvenile idiopathic arthritis. Semin Arthritis Rheum. 2017;47:269–75.

    Article  Google Scholar 

  27. Relas H, Luosujärvi R, Kosola S. Outcome of transition phase patients with juvenile idiopathic arthritis. Mod Rheumatol. 2018;28:832–7.

    Article  Google Scholar 

Download references

Acknowledgements

The authors would like to thank Dr Daniela Torres and Ms Jazmín Pérez for their assistance in this study.

Author information

Author notes

  1. Fernando García-Rodríguez and Ana C. Arana-Guajardo contributed equally to this paper.

Authors and Affiliations

  1. Department of Pediatrics, Universidad Autónoma de Nuevo León. Madero Y Gonzalitos S/N, Col. Mitras Centro 64460, Monterrey, Nuevo León, Mexico

    Fernando García-Rodríguez, Ana V. Villarreal-Treviño, Brenda J. Fortuna-Reyna, Sol Jiménez-Hernández, Manuel E. de la O-Cavazos & Nadina Rubio-Pérez

  2. Servicio de Reumatología, Instituto de Medicina Interna. Escuela Nacional de Medicina Sistema Tec Salud, Monterrey, Mexico

    Ana C. Arana-Guajardo

  3. Rheumatology Service, Universidad Autónoma de Nuevo León. Madero Y Gonzalitos S/N, Col. Mitras Centro, Monterrey, Nuevo León, Mexico

    Roberto Negrete-López, María E. Corral-Trujillo & Dionicio Á. Galarza-Delgado

  4. Department of Psychiatry, Universidad Autónoma de Nuevo León. Madero Y Gonzalitos S/N, Col. Mitras Centro, Monterrey, Nuevo León, Mexico

    José A. López-Rangel

  5. Department of Nutrition at Hospital Universitario “Dr. José E. González”, Universidad Autónoma de Nuevo León.Madero Y Gonzalitos S/N, Col. Mitras Centro, Monterrey, Nuevo León, Mexico

    Patricia R. Áncer-Rodríguez & Mayra G. Herrera-López

  6. Department of Rehabilitation and Sports Medicine, Universidad Autónoma de Nuevo León.Madero Y Gonzalitos S/N, Col. Mitras Centro, Monterrey, Nuevo León, Mexico

    Óscar Salas-Fraire & Karina Salas-Longoria

Authors
  1. Fernando García-Rodríguez
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Ana C. Arana-Guajardo
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Ana V. Villarreal-Treviño
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Roberto Negrete-López
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. José A. López-Rangel
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Brenda J. Fortuna-Reyna
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. María E. Corral-Trujillo
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Sol Jiménez-Hernández
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Patricia R. Áncer-Rodríguez
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Mayra G. Herrera-López
    View author publications

    You can also search for this author in PubMed Google Scholar

  11. Óscar Salas-Fraire
    View author publications

    You can also search for this author in PubMed Google Scholar

  12. Karina Salas-Longoria
    View author publications

    You can also search for this author in PubMed Google Scholar

  13. Manuel E. de la O-Cavazos
    View author publications

    You can also search for this author in PubMed Google Scholar

  14. Dionicio Á. Galarza-Delgado
    View author publications

    You can also search for this author in PubMed Google Scholar

  15. Nadina Rubio-Pérez
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

All authors were involved in the conception of research idea and elaboration of the research protocol. NR, DAG, and MEDLO supervised the project; FG, ACA, AVV, RN, BJF, SJ, and NR designed and worked on the rheumatology policies; JAL and MEC designed and worked on the mental health policies; PRA, MGH, ÓS, KS designed and worked on the nutritional, sports, and lifestyle policies. FG performed the statistical analysis. DÁG, MEDLO, and NR critically revised the manuscript for important intellectual content. FG, ACA, and AVV took the lead in writing the manuscript. All authors were involved in the elaboration and approval of the final version of the manuscript. The corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted. NR will act as the guarantor for this paper.

Corresponding author

Correspondence to Nadina Rubio-Pérez.

Ethics declarations

Ethics Approval

The study complies with the Declaration of Helsinki and is approved by the Institutional Ethics Committee with the registration number PE18-00015.

Conflict of Interest

None.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary file1 (DOCX 691 KB)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

García-Rodríguez, F., Arana-Guajardo, A.C., Villarreal-Treviño, A.V. et al. Design of a Rheumatology Transition Clinic for a Resource-Constrained Setting. Indian J Pediatr 90, 29–37 (2023). https://doi.org/10.1007/s12098-022-04102-6

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12098-022-04102-6

Keywords

Search

Navigation