Autoimmune rheumatic transitional care model development

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Abstract

Aim

To develop a transitional care model for autoimmune rheumatic disease patients based on the needs analysis.

Method

Mixed Method, Explanatory sequential design (QUAN-qual) has been conducted. Quantitative data were collected through medical record and structured interviews. Qualitative study has been done through Focused Group Discussion (FGD), based on problems met in previous quantitative study. We have done the coding processed, followed by determining categories and themes to reach the intercoder agreement with peer-debriefing. Analysis of the final results of research was assisted by the external auditor to form a model of care.

Result

The quantitative data collection from 27 patients showed that the transition age was 18–19 year-old, age of onset 4–17 year-old, 23 patients (85, 2%) with SLE, 4 patients (14.8%) with JIA. Two patients (7.4%) had different diagnosis from the pediatric clinic, 1 patient (3.7%) had no diagnosis from previous clinic. Drug switching during transition occurred in 14 patients (51.9%) and 3 patients (11.1%) has no known medication history. Data regarding disease activity at initial diagnosis were not available in 26 patients (96.3%). The combined FGD analysis found several key words related to “the need of change” in RSCM autoimmune rheumatic transitional care.

Conclusion

A development of transitional care model for autoimmune rheumatic disease consist of documents about service algorithm, transfer documents, systematic work protocols with education check list has been done.

Supplementary Information

The online version contains supplementary material available at 10.1186/s41927-024-00407-5.

Related collections

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Policy and research related to transition to adult care for adolescents and young adults (AYAs) has focused primarily on patient age, disease skills and knowledge. In an effort to broaden conceptualization of transition and move beyond isolated patient variables, a new social-ecological model of AYA readiness for transition (SMART) was developed. SMART development was informed by related theories, literature, expert opinion and pilot data collection using a questionnaire developed to assess provider report of SMART components with 100 consecutive patients in a childhood cancer survivorship clinic. The literature, expert opinion and pilot data collection support the relevance of SMART components and a social-ecological conceptualization of transition. Provider report revealed that many components, representing more than age, disease knowledge and skills, related to provider plans for transferring patients. SMART consists of inter-related constructs of patients, parents and providers with emphasis on variables amenable to intervention. Results support SMART's broadened conceptualization of transition readiness and need for assessment of multiple stakeholders' perspectives of patient transition readiness. A companion measure of SMART, which will be able to be completed by patients, parents and providers, will be developed to target areas of intervention to facilitate optimal transition readiness. Similar research programmes to establish evidence-based transition measures and interventions are needed. © 2011 Blackwell Publishing Ltd.

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Identify existing models of transitional care in rheumatic and musculoskeletal diseases (RMD), describe their strengths and weaknesses, and provide support to a consensus initiative to develop recommendations for transitional care.

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All references

Author and article information

Contributors

Cindy Oey: cindy_oey@yahoo.com

Journal

Journal ID (nlm-ta): BMC Rheumatol

Journal ID (iso-abbrev): BMC Rheumatol

Title: BMC Rheumatology

Publisher: BioMed Central (London )

ISSN (Electronic): 2520-1026

Publication date (Electronic): 29 August 2024

Publication date PMC-release: 29 August 2024

Publication date Collection: 2024

Volume: 8

Electronic Location Identifier: 38

Affiliations

[1 ]Division of Rheumatology, Department of Internal Medicine, Medical Faculty Universitas Indonesia, Cipto Mangunkusumo National General Hospital, ( https://ror.org/05am7x020) Jakarta, Indonesia

[2 ]Fellow of Rheumatology, Division of Rheumatology, Department of Internal Medicine, Medical Faculty Universitas Indonesia, Cipto Mangunkusumo National General Hospital, ( https://ror.org/05am7x020) Jakarta, Indonesia

[3 ]GRID grid.9581.5, ISNI 0000000120191471, Departement of Community Medicine, , Medical Faculty Universitas Indonesia, ; Jakarta, Indonesia

[4 ]Allergy Immunology Division, Pediatric Department, Pediatrician, Medical Faculty Universitas Indonesia, Cipto Mangunkusumo National General Hospital, ( https://ror.org/05am7x020) Jakarta, Indonesia

[5 ]Psychosomatic and Palliative Division, Department of Internal Medicine, Medical Faculty Universitas Indonesia, Cipto Mangunkusumo National General Hospital, ( https://ror.org/05am7x020) Jakarta, Indonesia

Article

Publisher ID: 407

DOI: 10.1186/s41927-024-00407-5

PMC ID: 11361127

PubMed ID: 39210482

SO-VID: 516b968e-b18f-4757-8c54-b1b29ff98658

License:

Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/.

History

Date received : 12 September 2023

Date accepted : 16 August 2024

Funding

Funded by: Innovation and Intellectual Property Installation (INOVKI) RSCM

Custom metadata

Keywords: transitional care model,mixed method,autoimmune rheumatic,systemic lupus erythematosus,juvenile idiopathic arthritis

Data availability:

Keywords: transitional care model, mixed method, autoimmune rheumatic, systemic lupus erythematosus, juvenile idiopathic arthritis