Autoimmune rheumatic transitional care model development

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.

Introduction

Child onset autoimmune rheumatic disease is a chronic-progressive inflammatory disease that demands long term management; therefore, this requires transition care to ensure continuation of treatment for satisfactory outcome. The 2017 World Bank Data show that majority of Juvenile Idiopathic Arthritis (JIA) and Systemic Lupus Erythematosus (SLE) patients with onset before the age 16 are found in Southeast Asia [1]. There are differences between pediatric and adult health services. Child-oriented health services mostly involve the family, allocate more time to intensive communication with patients and their families, and are able to follow medication adherence while accommodating the patient’s immaturity. In adult health services, the higher patient volume often prevents health service providers from having intensive communication with all patients [2]. Adult healthcare services face difficulties in understanding the needs of adolescents and obtaining complete medical records about their diseases [3, 4]. Health service providers and institutions often struggle to coordinate transitional health services due to incompetence and lack of time for training, as there are no written transition care protocols [4]. Sabbagh et al. (2018) claim that more than one meeting is needed to build a strong relationship between health care providers and transitional patients [5]. Lack of coordination among specialists and other health care providers and incomplete documentation of medical record could be barriers to effective treatment. Some countries have policies that separate child and adult health insurance, which complicates the transition process [6]. Individuals undergo mental development between ages of 16 and 19 [6]. Adolescences are not fully capable to make decisions like adults, and those with chronic diseases are at a higher risk of developing mental disorders, including depressions and anxiety disorder [3]. A systematic review by Sabbagh et al. (2018) concludes that some patients feel they are not treated as individuals, feel deserted, feel the lack of preparation, and are unable to control their transition process [5].

Transition-aged patients are at risk of poor outcomes. A retrospective single-centre study in Singapore shows that among 31 patients with chronic rheumatic autoimmune diseases (52% SLE patients, 16% MCTD patients, 16% JIA patients, 13% Anti-Phospholipid Antibody Syndrome/APS patients, and 3% vasculitis patients), one-third were hospitalised due to flare before transition, and another one-third experienced an increased disease activity after transition [7]. EULAR emphasises the importance of a transitional care model in adolescence and young adulthood to be initiated as soon as possible, while maintaining communication between pediatricians, internists, patients, and their families, supported by comprehensive medical records [7]. Got Transition attempted to summarise some recommendations in England about transition into 6 steps, which should be carried out jointly between pediatricians and internists [8]. ACR 2021 provided an example of medical resume for transition car of SLE and JIA patients [9, 10]. Nonetheless, the research in the Netherland on autoimmune rheumatic patients (JIA, SLE, Polyangiitis granulomatosis, fasciitis eosinophilic, and Henoch Schonlein Purpura) in transition age found that implementation of transition care is not routinely conducted and is not widespread [11]. Asian countries are experiencing struggles in transition care and cannot immediately adopt guidelines from Western countries due to differences in economic, social, and cultural aspects. Parents’ interference were too dominating in the process, causing barrier to independent medication in adolescents [12].

To date, there is no single indicator to predict a successful transitional health care model. Therefore, a transitional care model in Indonesia is essential for all chronic diseases with onset before 18 years old, including autoimmune rheumatic patients and should be customised to address the problems and requirements of each healthcare service provider. A transitional care model is urgently needed due to the high number of patients requiring transition [13, 14]. Transition care can be implemented in several forms, such as a transition clinic consisting of pediatricians and rheumatologists, rheumatology clinics providing special services for young adults (aged 16–25 years old), and transition clinics with a special transition coordinator to manage patients' schedules for pediatrician and rheumatologist visits [2]. The transitional care model, referring to the Society for Adolescent Medicine, is a planned and intended transition or handover from pediatric care to adult care to treat adolescents and young adults with chronic diseases [15]. The WHO states that transitions of care are more than just clinical transitions, as they include patients’ perspectives, experiences, and needs. Several transitional care models for autoimmune rheumatic patients implemented in Europe, America, and Canada, along with their effectiveness evaluations, are explained in Table 1. This research aims to develop a transitional care model for autoimmune rheumatic patients based on needs analysis.

Table 1 Transitional care models for Autoimmune Rheumatic Patients in Western Countries [16, 17]

Method

It is better to explain what the data are and what the data sources are before discussing the approach!

This research was conducted using a Mixed Method, Explanatory sequential (QUAN-qual) design. The first phase of the research includes quantitative data collection, which was conducted from April to May 2022 through medical records and structured interviews with autoimmune rheumatic patients. Samples included all patients aged 18–20 years old with disease onset less than 18 years old, and they were treated in the Rheumatology clinic from March 2019 to February 2022 for at least 3 months, had been treated in the pediatric policlinic for at least 3 months, and were using national health insurance (JKN).

The second phase of the research was conducted through the Focused Group Discussion (FGD) to collect qualitative data. Questions were created by the authors based on hands-on experience in handling transitional patients. The FGDs were held a total three times from June to July 2022, involving patients and their families, the medical team (including doctors, nurses, and psychiatrist), and administrative staffs. In the first FGD, patients from each year (2019, 2020, 2021, 2022) and their caregivers were chosen using purposive sampling. The topics revolved around their experiences in transitioning between pediatric and adult rheumatic clinics, difficulties encountered, and suggestions for improvement. The second FGD discussed the ideal patient transition process from pediatric to adult clinics, while the third FGD with administrative staff was about the current transition process and the required documents. Some aspects regarding patients’ condition that could not be assessed during quantitative research were evaluated during FGDs, consisting of self-management skills, adherence to medication, and knowledge about the disease, medication, and outcome. Self-management skills were reviewed by asking about the patients' ability to go to the clinic alone without accompaniment.

Univariate quantitative data that were processed using SPSS 26. FGD qualitative data were recorded (audio, photos, and videos) and later transcribed verbatim in the form of notes. Coding was conducted until an intercoder agreement was achieved through peer-debriefing. Final analysis was conducted with an external auditor to develop the transitional care model.

Results

Quantitative results from structured interview and medical records are shown in Table 2.

Table 2 Characteristics of Research Subjects

All the participants in the FGD admitted that they were able to go to the clinic by themselves, but one caregiver insisted on accompanying the patient. Patient knowledge and understanding were assessed during the FGD, and it was discovered that patients had no idea about their disease before being sent to the pediatric clinic in RSCM, but afterward, they had a better understanding of their diseases. Patients’ knowledge about medications was evaluated during the FGD, in which all the participants were able to remember the names of the drugs they were taking regularly, when they started taking the medications, and the dosage of their medications. All the participants in the FGD had a good understanding of JKN and how to use it.

The major theme of three FGDs conducted revolves around healthcare service before being referred to the pediatric healthcare service, during treatment at the pediatric clinic at RSCM, during the transition to the rheumatology clinic at RSCM, and during regular treatment at the rheumatology clinic. Combined FGD analysis discovered several keywords surrounding change in transitional health care providing for autoimmune rheumatic patients in RSCM, such as environment differences between the pediatric and adult rheumatology clinic, the dependence behaviour of transition patients, uncertainty of transition algorhythm, and technical difficulties of the registration process. Transition care aimed in this development of transitional health care model is a rheumatology clinic that provides a special service for patients aged ≥ 18 years old with the autoimmune rheumatic disease with onset of less than 18 years old. FGD analysis was then continued to make a needs analysis to improve the transition care model for autoimmune rheumatic patients shown in Table 3.

Table 3 Requirements of Ideal Transition Care for Autoimmune Rheumatic Patients in RSCM

Based on needs analysis and discussion, a transitional care model (Fig. 1) was made including transition care workflow, transfer document, and transition care guidelines, supplemented with education check list.

Fig. 1

Autoimmune Rheumatic RSCM patients’ Transition Care Workflow

Discussion

The transitional care model is basically designed to increase the effectiveness of transferring patients from pediatric settings to adult healthcare settings by enhancing adolescents’ and young adults’ skills to manage their own health problems according to instructions from healthcare service providers, while also establishing organized, integrated healthcare clinics between pediatricians and internists [4, 5]. Healthcare models provide an illustration of how healthcare is provided to patients. It aims to ensure services are delivered at the right time, right point, and by the right team in the right place [18]. The ideal transition process from pediatric to adult polyclinic includes several key aspects. The first is a complete record of the history of medications given, any changes made and the reasons for them, and future treatment plans. The second is the need for standards/guidelines for patient treatment. The third is preparation of the patient’s readiness. Medical staff and administration also agreed on the need for a checklist for transitioning patients from pediatric to adult polyclinic. Implementation of the transition care model for autoimmune rheumatic disease patients has to be attentive into patient’s experience, from the admission process to the time when they are dismissed and given medications from the clinic. Similar ideas surrounding success in implementing transitional care were also pointed out in McDonagh et al., and those include the establishment of written policies related to transitional care, individual and flexible transition planning, the presence of a coordinator in the transition process, efforts to improve the knowledge and skills of adolescents, young adults, and families, fostering effective communication and shared care between pediatric and adult healthcare providers, and ensuring the completeness of transfer documents with valid information [19].

Tattersal et al. and Hazes et al. created a transition clinic for adolescences with an autoimmune rheumatic disease managed by both pediatric and adult rheumatologists for patients aged 16–25 years old [2, 11], and this suggestion has been proposed by the facilitator of the Medical Team and Administration Team’s FGD (Fig. 2).

Fig. 2

Suggestions of Transition Clinic Managed Together [11]

While the idea of a Transition Clinic jointly managed by pediatricians and internists may appear ideal, implementing it in RSCM, particularly regarding JKN funding, could pose several challenges. The administrative team highlighted difficulties in financial claims, particularly in differentiating between pediatric and internal medicine patients. Patients aged 18 years old are not permitted to receive treatment from both pediatricians and internists, and vice versa. There are also challenges in the referral system concerning JKN. The medical team also mentioned limitations in the number of rheumatologists and differences in nursing assessments between pediatric and internal medicine nurses.

The development of a transitional care model for autoimmune rheumatic patients involved interpreting the results of quantitative and qualitative research, guided by theories and similar research. Researchers aimed to create a transition care model that allows both pediatric and adult rheumatologists to manage transitioned patients without having to work together in the same clinic or room, as suggested by Hazes et al. Transition forums held every three months could serve as a platform for transition care planning and evaluation for pediatric and adult rheumatologists, ensuring treatment continuity while also utilising the JKN funding system. These forums may also involve patients and their caregivers if needed. To address the environmental differences between the pediatric and adult rheumatology clinics, the researcher proposes choosing a particular day and room within the rheumatology clinic for transitioned patients. This room would consist of a doctor and nurse who can guide the patients about the transition care workflow to ensure patient convenience. The attending doctor will assess the patient together with the doctor on duty in the rheumatology clinic for the first 6 months of the transition to establish engagement between patients and attending doctor. By creating this workflow, transition care can be implemented without additional resources.

This study is the first study in Indonesia regarding a transitional care model for autoimmune rheumatic disease patients. This study also uses a mixed method in order to achieve reliable results. One limitation of this study is that research was only conducted in one healthcare centre, not including a multicentre study yet.

Conclusion

A mixed method study with an explanatory sequential design was conducted to develop a transitional care model of autoimmune rheumatic disease patients. According to the analysis from quantitative data and FGD, further development of transition care was needed including workflow, transfer document, and guidelines supplemented with an education checklist. All together these can be set as the standard operating procedure.