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Turk Arch Pediatr
Turk Arch Pediatr
Turkish Archives of Pediatrics
2757-6256
Turkish Pediatrics Association

10.5152/TurkArchPediatr.2024.24085
tap-59-5-501
Original Article
Measuring Transition Readiness of Patients After Transfer from Pediatric to Adult Care in Rheumatology
Yağiz Ayla Ali 1http://orcid.org/0000-0003-2581-7992

İdil Beşiroğlu Helin 1http://orcid.org/0009-0007-1485-0072

Nur Azman Feyza 1http://orcid.org/0000-0002-4907-1884

Han Egeli Buğra 2http://orcid.org/0000-0001-6129-9913

Eren Hatice 1http://orcid.org/0000-0002-0489-4967

Öztürk Sıla 1http://orcid.org/0009-0005-5865-6293

Ergün Sercan 1http://orcid.org/0000-0002-6811-4325

Adrovic Amra 3http://orcid.org/0000-0002-2400-6955

Barut Kenan 3http://orcid.org/0000-0001-8549-2872

Haslak Fatih 3http://orcid.org/0000-0002-6963-9668

Şahin Sezgin 3http://orcid.org/0000-0003-5365-3457

Yıldız Mehmet 3http://orcid.org/0000-0002-7834-4909

Özdoğan Huri 1http://orcid.org/0000-0003-4632-8258

Kasapçopur Özgür 3http://orcid.org/0000-0002-9561-2282

Ugurlu Serdal 1http://orcid.org/0000-0002-1125-7720

1 Division of Rheumatology, Department of Internal Medicine, İstanbul University-Cerrahpaşa Cerrahpaşa Medical Faculty, Istanbul, Türkiye
2 Department of Pediatrics, Children’s Hospital of Los Angeles, University of Southern California, Los Angeles, CA, USA
3 Division of Pediatric Rheumatology, Department of Internal Medicine, İstanbul University-Cerrahpaşa Cerrahpaşa Medical Faculty, İstanbul, Türkiye
Corresponding author:Serdal Ugurluserdalugurlu@gmail.com
Cite this article as: Yagiz Ayla A, Idil Besiroglu H, Nur Azman F, et al. Measuring transition readiness of patients after transfer from pediatric to adult care in rheumatology. Turk Arch Pediatr. 2024;59(5):501-505 .

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https://creativecommons.org/licenses/by-nc/4.0/ Content of this journal is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

Objective:

Transitional care is essential to maintain the continuity of care in younger patients with rheumatic diseases. In this study, we aimed to assess the transition readiness of rheumatology patients who had already transferred from pediatric to adult care using a questionnaire.

Materials and Methods:

We included young adult rheumatology patients who had already transferred to adult rheumatology care. The Transition Readiness Assessment Questionnaire (TRAQ) was used in the adult rheumatology clinic to assess the patients’ readiness; a retrospective chart review was conducted to include diagnosis, age at diagnosis, age at transfer, and current age.

Results:

Three hundred and ten patients (184 female and 126 male) participated in this study. The mean age at diagnosis, the mean age at transfer, and the mean age at the time of the study were 10.7 ± 4.29, 21.1 ± 1.69, and 24.0 ± 2.26 years, respectively. Most of the patients had familial Mediterranean fever, followed by arthritis, connective tissue disorders, and other diseases. Tracking health issues was the lowest-scored domain. Females scored significantly higher than males in the tracking health issue domain (P = .006) and managing health issue domain (P = .028) but not in the overall TRAQ score (P = .053). Patients in different diagnosis and transfer age groups scored similarly across the domains.

Conclusion:

In this study, females performed better than males in 2 domains of the TRAQ questionnaire. Diagnoses or transfer age groups were not associated with TRAQ outcomes.

Keywords

Transitional care
rheumatology
rheumatic diseases
This study received no funding.
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pmcWhat is already known on this topic?

The transition from pediatric to adult care is an important milestone for patients with chronic diseases, which can significantly affect disease outcomes.

Evaluation of transition readiness can serve as a guide for healthcare professionals to address the areas requiring more attention.

What this study adds on this topic?

This is the first study conducted in patients with rheumatic diseases to measure transition readiness after the transfer of care to identify the needs of this specific population.

Introduction

Transitional care is the purposeful and planned transfer of adolescents and young adults with chronic conditions from child-centered to adult-oriented healthcare systems.1 The importance of transition has been increasing for the past years since the advances in the care of young patients have resulted in improved survival.2 The prevalence of young adults living with chronic conditions is 25%.3 The prevalence of children living with rheumatic diseases, which constitutes an essential fraction of children living with chronic conditions, is as high as 150 children per 100 000 population.4 Thus, a smooth transition is essential for the prognosis of rheumatic diseases.

It is crucial to ensure that patients have responsibility and knowledge about their health and coordinate their care without parental supervision. Ongoing efforts have provided resources to support patients throughout the transition. The Transition Readiness Assessment Questionnaire (TRAQ)6 is a widely used tool developed in 2011 by Wood and his colleagues to assess patients’ readiness for the transition.

Several studies7-9 have used different tools to assess the transition readiness of pediatric patients with rheumatic conditions and have identified factors including socioeconomic status, insurance coverage, and disease activity as potentially affecting transition readiness. On the other hand, there is a gap in the literature regarding evaluating the same skills in adult rheumatology patients who have already transferred to an adult care provider. In this study, we aimed to measure, for the first time, the readiness of the patients who have already transferred to adult rheumatology from pediatric rheumatology by using the TRAQ.

Materials and Methods

This single-center cross-sectional study included patients who were followed in an adult rheumatology clinic between June 2020 and June 2021 and had already transferred from pediatric rheumatology to adult rheumatology. We defined the transferred patient as a patient who had been seen at least once in the adult rheumatology clinic and was no longer followed by pediatricians. Transition, which should be differentiated from “transfer,” is the term for the whole process in which the patients are prepared for adult healthcare; it starts while the patients are followed up by a pediatrician and ends after several visits to an adult healthcare provider. All patients who were older than 18 and consented to participate in this study during the study period were included. The sis a cross-sectional study but includes a retrospective chart review of the patients. The TRAQ was used to assess transition readiness. All patients were Turkish, and the Turkish version of the questionnaire was used in this study. The Turkish version of the TRAQ was previously validated.10

The TRAQ consists of 20 questions about specific skills allocated to 5 main domains: managing medications, appointment keeping, tracking health issues, talking with providers, and managing daily activities. The patients answered each question using a 5-point Likert scale in which a higher point corresponds to a higher competence (1 = No, I do not know how; 2 = No, but I want to learn; 3 = No, but I am learning to do this; 4 = Yes, I have started doing this; 5 = Yes, I always do this when I need to).

The questionnaires were administered to the patients who came to follow-up visits in the adult clinic between June 2020 and June 2021. The charts were used to record sex, diagnosis, age at diagnosis, age at transfer, and current age. The disease categories were familial Mediterranean fever (FMF), arthritis, connective tissue disorders, and others. If a patient had 2 separate rheumatologic diagnoses, they were included in both respective categories. All patients included in this study gave written informed consent. The study was planned according to the Declaration of Helsinki, and the Ethics Committee of Cerrahpasa Medical Faculty (24/12/2020-167606) permitted the study to be conducted.

Descriptive statistics were presented as numbers and percentages for categorical variables, median and interquartile range (IQR) for non-normally distributed numerical variables, and mean ± SD for normally distributed numerical variables. Shapiro-Wilk and Kolmogorov-Smirnov tests, along with histogram plots, were used to check the normality of data distribution. One-way analysis of variance (ANOVA) or the Student’s t-test was used to analyze questionnaire results with a normal distribution, and the Kruskal–Wallis test or Mann–Whitney U-test was used to compare questionnaire results that were not normally distributed, as appropriate. A P-value of <.05 was regarded as statistically significant. All analyses were performed using the open-source R software v.4.1.2 (IDE RStudio: Integrated Development Environment for R. v.2022.07.1, PBC, Boston).

Results

Three hundred ten patients were included in this study; 184 patients (59%) were female and 126 (41%) were male. The mean age at diagnosis, the mean age at transfer, and the mean age at the time of the study (current age) were 10.7 ± 4.29, 21.1 ± 1.69, and 24.0 ± 2.24 years, respectively. The minimum and maximum ages at transfer were 16 and 26, respectively (IQR: 20-22). Twenty-two patients were in the 16-18 age group, 170 patients were in the 19-21 age group, and 118 patients were in the 22+ age group when grouped with respect to the transfer age. There was no significant difference between the mean ages at diagnosis (11.0 ± 4.17 vs. 10.3 ± 4.4, P = .133), mean age at transfer (21.1 ± 1.64 vs. 21.1 ± 1.76, P = .694), and mean age when the questionnaires were administered between females and males (24.0 ± 2.22 vs. 24.1 ± 2.34, P = .941). Two hundred three patients (65%) had familial Mediterranean fever, 88 patients (28%) had arthritis (juvenile idiopathic arthritis and juvenile spondyloarthritis), 29 patients (9%) had connective tissue disorders (systemic lupus erythematosus, systemic sclerosis, polymyositis, dermatomyositis, and Sjögren’s syndrome), and 23 patients (7%) had other disorders (Behçet syndrome, Henoch–Schönlein purpura, polyarteritis nodosa, acute rheumatic fever, and cryoglobulinemic vasculitis).

Our patient population, when taken as a whole, scored higher than 4 in managing medications (5 (2.00-5.00)), talking with providers (5 (3.00-5.00)), appointment keeping (4.43 (2.71-5.00)), managing daily activities (5 (1.00-5.00)), and overall TRAQ score (4.27 ± 0.343) (Table 1). They scored low in the tracking health issue domain (3 (1.00-5.00)).

Female and male patients had similar scores in 3 domains of the TRAQ questionnaire: talking with providers (5 (3.00-5.00) vs. 5 (3.00-5.00), P = .865), appointment keeping (4.43 (2.71-5.00) vs. 4.50 (2.71-5.00), P = .257), and managing daily activities (5 (2.33-5.00) vs. 5 (1.00-5.00), P = .111). The overall TRAQ score was 4.31 ± 0.326 for females and 4.22 ± 0.360 for males (P = .053). However, females scored higher than males in 2 domains: tracking health issues (3 (1.00-5.00) vs. 2 (1.00-5.00), P = .006) and managing medications (5 (2.00-5.00) vs. 4.25 (3.00-5.00), P = .028).

Patients of different transfer ages had similar scores in all domains and overall TRAQ scores. Patients in different current age groups also had similar TRAQ scores except for the domain of appointment keeping, in which the 24-29 age group performed better (Table 1). There was also no significant difference in the scores between the patients diagnosed with different conditions (Table 2).

Discussion

The transition process after transfer to an adult rheumatologist is under-studied, and the lack of data makes it harder to adopt universal policies.11 In the present study, we used TRAQ, the “most extensively validated disease-neutral transition readiness assessment tool.”12 Our study is the first to evaluate the healthcare readiness of transition rheumatology patients who have started regularly visiting adult clinics. Usually, such tools are administered in pediatric clinics to patients but occasionally to their parents,9 but these validated tools should be more commonly used in adult patients. Recent studies identified physicians’ lack of knowledge about transition as one of the most important barriers to transition.13,14 The results of post-transfer adult patient evaluations can be used to make healthcare providers more aware of the strengths and weaknesses of their patients regarding the transition process.

The transition of care should start with discussing the transition policy at the age of 12-14 and may end at the age of 18-26 after the successful transition.15 The ages may vary according to institutions. At our institution, the mean age at transfer for rheumatology patients was 21 years, closer to the upper limit set by guidelines.16 Currently, we do not have a formal transition policy, but we try to tailor the process according to the needs of each patient.

Our TRAQ results showed that the domain of tracking health issues was the weakest. This domain was also the weakest in younger rheumatology patients8 but also in diabetes patients,17 which shows that this issue may be a general issue that physicians should deal with. Our study population was mostly adults compared to the younger populations of the other studies, and the issue persists. This domain mostly consists of questions regarding keeping written records and lists. One way to overcome this issue is to encourage patients to keep lists of problems and questions they have and ask them to bring their lists to the appointments. Many patients feel ill-prepared for transition,18 and asking the patients to write down their issues and questions can motivate them to take care of their health.

The females scored higher than males in tracking health issues and managing medications. The results regarding the influence of sex on TRAQ results have been conflicting: Chan et al17 found female diabetic patients scored higher than males in managing daily activities domain and overall TRAQ score; Sonmez et al9 found female rheumatology patients scored higher in self-management domains but not in total TRAQ score; Lazaroff et al12 found female sex predicted higher TRAQ scores, whereas Jensen et al19 found sex did not affect TRAQ results. Females reach puberty earlier than males and may become more capable of caring for themselves earlier, which could partially explain the results. However, the patients in this study were 24 years old on average, and males and females were of similar ages. Therefore, the difference caused by earlier maturity can be expected to disappear by this age, but females still scored higher in 2 domains.

More than half of the patients in our study population were diagnosed with FMF, an autoinflammatory condition endemic to the Mediterranean basin.20 Another study from Turkey9 also reported FMF as the predominant disease in pediatric rheumatology patients, whereas the studies6,19 from other regions reported juvenile idiopathic arthritis (JIA) as the predominant disease. We observed that different diagnoses did not lead to different outcomes in TRAQ results. However, the negative impact of active disease was previously confirmed9 and should be considered.

Although patients in the older current age group performed better in only one domain, younger and older patients performed similarly when grouped according to age at transfer. Thus, the patients who transferred at later ages did not perform better in terms of readiness. Many studies8,21-24 reported higher TRAQ results in older patients, while some studies suggested no9 or limited25 influence of age on results. Many previous studies took 18 years of age as a cut-off and suggested patients older than 18 performed better. However, all of our patients were older than 18 when this study was conducted. Thus, we hypothesize that after reaching 18 years, age may not affect the results. If our results are reproduced in future transition of care studies using disease outcome measures in addition to healthcare knowledge and skills assessment, the patients and their families can be consoled that the patient will be ready for transfer after reaching 18 years of age. However, sex-based differences in the results should be taken into account, and both the providers and the patients should be supplied with resources to make the process as smooth as possible.

We had some limitations. We were not able to include when the transition process started since we did not have a formal protocol to initiate the transition. Additionally, we did not evaluate the patients according to disease severity, socioeconomic status or the drugs they have been using. It would be useful to have the initial TRAQ results administered in the pediatrics clinic, which would allow us to see whether there were any improvements after the transfer.

Conclusion

Transitional care is crucial to prevent lapses in care, which could even cause mortality in young patients. Most of the evaluations regarding transitional care are done pre-transfer, and we need more post-transfer data, which can be accomplished by increasing the use of validated questionnaires, as recently emphasized in a national survey.26 The present study concluded that transfer age or disease category groups were not associated with TRAQ results after transferring to an adult healthcare provider. We also found females performed better in 2 domains, which could highlight differing needs in male and female patients. We encourage future studies that record transition readiness both before and after transfer to adult physicians and identify any persisting problems.

Table 1. TRAQ Scores According to Age. The Differences in Scores Were Compared Between the Age Categories Using the Student’s t-test or ANOVA for Normally Distributed Variables and the Mann–Whitney U-test or Kruskal–Wallis test for Non-normally Distributed Variables, as Appropriate

	Managing Medications, Median (IQR)	Talking With Providers, Median (IQR)	Appointment Keeping,
Median (IQR)	Tracking Health Issues,
Median (IQR)	Managing Daily Activities,
Median (IQR)	Overall TRAQ Score
Mean ± SD	
Age at transition	
 16-18 (n = 22)	5 (2.25-5.00)	5 (5.00)	4.79 (3.29-5.00)	3 (1.00-5.00)	5 (3.67-5.00)	4.36±0.364	
 19-21 (n = 170)	5 (2.00-5.00)	5 (3.00-5.00)	4.43 (2.71-5.00)	3 (1.00-5.00)	5 (1.00-5.00)	4.26±0.361	
 22+ (n = 118)	4.88 (2.25-5.00)	5 (3.00-5.00)	4.57 (3.00-5.00)	3 (1.00-5.00)	5 (2.33-5.00)	4.28±0.311	
 P-value	0.545****	0.456****	0.201****	0.724****	0.582****	0.267**	
Age at TRAQ administration	
 18-23 (n = 142)	5 (2.25-5.00)	5 (3.00-5.00)	4.43 (2.71-5.00)	3 (1.00-5.00)	5 (1.00-.5.00)	4.28±0.357	
 24-29 (n = 168)	4.25 (2.00-5.00)	5 (3.00-5.00)	4.57 (3.00-5.00)	3 (1.00-5.00)	5 (2.33-5.00)	4.27±0.331	
 P-value	0.093***	0.157***	0.006***	0.350***	0.245***	0.850*	
 Overall	5 (2.00-5.00)	5 (3.00-5.00)	4.43 (2.71-5.00)	3 (1.00-5.00)	5 (1.00-5.00)	4.27±0.343	
*Student’s t-test; **ANOVA; ***Mann–Whitney U-test; ****Kruskal–Wallis test.

Table 2. TRAQ Scores According to Diagnosis. The Differences in Scores Were Compared Between the Disease Categories Using the Kruskal–Wallis Test or ANOVA, As Appropriate

	Managing Medications,
Median (IQR)	Talking With Providers, Median (IQR)	Appointment Keeping,
Median (IQR)	Tracking Health Issues,
Median (IQR)	Managing Daily
Activities
Median (IQR)	Overall TRAQ Score
Mean ± SD	
Familial Mediterranean fever (n = 204)	5 (2.00-5.00)	5 (3.00-5.00)	4.43 (2.71-5.00)	3 (1.00-5.00)	5 (1.00-5.00)	4.29 ± 0.333	
Arthritis (n = 82)	4.75 (3.00-5.00)	5 (3.00-5.00)	4.43 (2.71-5.00)	2.25 (1.00-5.00)	5 (2.33-5.00)	4.23 ± 0.323	
Connective tissue sisorders (n = 29)	4.35 (2.25-5.00)	5 (5)	4.43 (3.29-5.00)	2 (1.00-5.00)	5 (3.67-5.00)	4.24 ± 0.381	
Others (n = 23)	5 (3.00.5.00)	5 (5)	4.43 (2.71-5.00)	3 (1.00-5.00)	5 (3.67-5.00)	4.26 ± 0.371	
P-value	0.313*	0.599*	0.217*	0.794*	0.484*	0.621**	
*Kruskal–Wallis test; **ANOVA.

Ethics Committee Approval: This study was approved by the Ethics Committee of İstanbul University - Cerrahpaşa (approval no: 167606, date: December 24, 2020).

Informed Consent: Verbal informed consent was obtained from the patients who agreed to take part in the study.

Peer-review: Externally peer-reviewed.

Author Contributions: Concept – B.H.E., S.O.; Design – A.Y.A., B.H.E., S.O.; Supervision – H.O., O.K., S.O.; Resources – H.O., O.K., S.O.; Materials – H.O., O.K., S.O.; Data Collection and/or Processing – A.Y.A., H.I.B., H.E., S.O., S.E., A.A., K.B., F.H., S.S., M.Y., H.O., O.K., S.O.; Analysis and/or Interpretation – A.Y.A., F.N.A., B.H.E., S.O.; Literature Search – A.Y.A., H.I.B., F.N.A.; Writing – All authors.; Critical Review – All authors.

Declaration of Interests: Amra Advice and Sezgin Şahin are editorial assistants; Kenan Barut is an associate editor; Mehmet Yıldız is a social media editor; Özgür Kasapçopur is the editor-in-chief at the Turkish Archives of Pediatrics, however, their involvement in the peer review process were solely as authors and not as reviewers.
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