Transition Readiness in Adolescents and Young Adults With Chronic Rheumatic Disease in Oman: Today’s Needs and Future Challenges

Introduction:In Oman, the “transfer” healthcare rather than the “transition” of health care of adolescents to adult care occurs at a young age, like many other GCC countries for cultural reasons. In order to address this concern, this study was conducted to determine the transition readiness skills of adolescents and young adults with childhood onset rheumatic diseases using a cross-cultural adaptation of the UNC TRxANSITION scale.Methods: We used a professionally translated/back translated, provider-administered UNC TRxANSITION Scale. This 32-question scale measures HCT in ten domains including knowledge about diagnosis or treatment, diet, reproductive health, school/work, insurance, ability to self-manage and looking for new health providers. The maximum transitional score of 10, was categorized as low (1-4), moderate (4 - 7) and high (7 -10) transitional readiness scores.Results:We enrolled 81 Omani adolescents and young adults (AYA) with chronic childhood onset rheumatic diseases. The cohort consisted of 79% females, with mean age of 15.8 years (± 3.53) and mean disease duration of 6.95 years (± 4.83). Our cohort's overall mean score is low 5.22 (±1.68). Only 14.8% of the cohort achieved a high transition score ≥7). Significant direct relationship was observed between age and the mean transition readiness score (r = .533, P < .001). The mean transition readiness score in the younger age group (10-13 years) was 4.07 (±1.29), the middle age group (14-18 years) was 5.43 ( ±1.27), while the older age group (19-21 year), was 6.12 ( ±1.81), Mean transition score of youngest age group was found to be significantly lower than the other two age groups (p =.003).Conclusion:Overall, the transition readiness of AYA in Oman is low compared to other western countries indicating the need to initiate a health care transition preparation program for patients with chronic diseases across the country. In addition, we need to establish regional guidelines to address the transitional age policy to be in line to international recommendations.

Transition readiness in adolescents with juvenile idiopathic arthritis and their parents: Our single-center experience

Objectives: We aimed to identify characteristics of juvenile idiopathic arthritis (JIA) patients associated with good self-management skills in the transition readiness process and to investigate the readiness of JIA patients and their families for the transition into the adult healthcare system. Patients and methods: Between March 2021 and June 2021, a total of 44 JIA patients (9 males, 35 females; median age: 15.1 years; range, 12.3 to 19.3 years) admitted to the pediatric rheumatology outpatient and inpatient clinics and their parents were included. Transition Readiness Assessment Questionnaire (TRAQ) was cross-culturally adapted. The TRAQ was administered to all JIA patients and their parents at one point. Demographic and clinical data were collected. Results: Fourteen (31.8%) of 44 JIA patients had a concomitant disease, while 10 (22.7%) of them had uveitis. Eleven (25%) of them had a family history of autoimmune diseases. In total, 21 (47.7%) of JIA patients were receiving biologics. There was a strong correlation between older age and total TRAQ scores among patients (ρ=0.799, p<0.001) and a moderate correlation between older patient age and total TRAQ scores among parents (ρ=0.522, p<0.001). Patient and parent total TRAQ scores were strongly correlated (ρ=0.653, p<0.001). There was no significant association of JIA patient characteristics (JIA disease subtypes, disease duration, gender, concomitant diseases, uveitis, family history of autoimmune diseases, number of hospitalizations, and treatment with biologics) with TRAQ scores and JIA patients' and parents' readiness for transition. Conclusion: Transition readiness of JIA patients increases with advancing age. There is no significant difference between transition readiness for JIA patients and their parents.

A novel transition clinic structure for adolescent and young adult patients with childhood onset rheumatic disease improves transition outcomes

Background The transition of health care from Pediatric to Adult providers for adolescents and young adults with chronic disease is associated with poor outcomes. Despite the importance of this transition, over 80% of these patients do not receive the services necessary to transition to Adult health care. In 2018, we initiated a transition clinic structure, integrating an Internal Medicine - Pediatrics trained Adult Rheumatologist in a Pediatric Rheumatology clinic to guide this transition. Our goal was to improve transition outcomes. We report the methods of this clinic and its preliminary outcomes. Methods For patients referred to the transition clinic, the Adult Rheumatologist assumed medical management and implemented a six-part modular transition curriculum. This curriculum included a Transition Policy, Transition Readiness Assessment, medication review and education, diagnosis review and education, and counseling on differences between Pediatric and Adult-oriented care. Eligible patients and their families were enrolled in a prospective observational outcomes research registry. Initial data from this transition clinic is reported including adherence with certain aspects of the transition curriculum and clinic utilization. Results The transition clinic Adult Rheumatologist saw 177 patients in 2 years, and 57 patients were eligible for, approached, and successfully enrolled in the registry. From this registry, all patients reviewed the Transition Policy with the Adult Rheumatologist and 45 (78.9%) completed at least one Transition Readiness Assessment. Of the 22 patients for whom transition was indicated, all were successfully transitioned to an Adult Rheumatologist. 17 (77.3%) continued care post-transition with the transition clinic Adult Rheumatologist, and 5 (22.7%) continued care post-transition with a different Adult Rheumatologist. The median time between the last transition clinic visit and first Adult clinic visit was 5.1 months. Conclusions Our experience demonstrated the success of our clinic model regarding participation in the transition curriculum and improved clinic utilization data. Our results are an improvement over transition rates reported elsewhere that did not implement our model. We believe that this structure could be applied to other primary care and subspecialty clinics. Trial registration This research was approved by the University of Utah Institutional Review Board (IRB) in January 2019 (IRB_00115964). Patients were retrospectively registered if involved prior to this date.

Comparison of the Impact of a mHealth Self-Management Intervention on Adolescents Versus Young Adults with Sickle Cell Disease

Introduction: Pain and other symptoms of sickle cell disease (SCD) begin in childhood and contribute to poorer quality of life. Complications, risk of death, and symptom burden increase during transition from adolescence to adulthood; self-management is critical for transition readiness and symptom improvement. A mHealth self-management intervention for children/adolescents with SCD and their caregivers (Voice Crisis Alert V2) was adapted to facilitate transition from parent-led management to adolescent self-management. This abstract presents the preliminary impacts of the intervention on symptoms and QOL outcomes and compares findings between adolescents and young adults. Methods: The names and features of the Voice Crisis Alert V2 application (app) components are in Table 1. Targeted sample sizes were 30 dyads of adolescents with SCD ages 11 - 17 and the parent/caregiver and 15 young adults with SCD ages 18 - 25 who had not transitioned to adult care. Data sources included app use, and surveys at baseline, mid-intervention, end-of-intervention, and post-intervention. Adolescent surveys included: the PROMIS SF for anxiety, depressive symptoms, fatigue, pain interference, and pain intensity; the PedsQL with Sickle Cell Disease Module (SCDM) for health-related quality of life (HRQOL); the Sickle Cell Self-Efficacy Scale; and the STARx for transition readiness. Young adult surveys included: the PROMIS SF for anxiety, depression, fatigue, pain interference, pain intensity, and sleep disturbance; the ASCQ-Me for HRQOL; the Sickle Cell Self-Efficacy Scale; and the STARx for transition readiness. Analysis was conducted using descriptive statistics and Spearman's rho. Independent variables were length of time using the app and frequency of app use total and by component. Dependent variables were pre-post intervention differences in scores for outcomes that were key targets of the intervention. Results are reported with 95% CI. Results: Among both groups (adolescents and young adults), pre-post intervention differences in scores indicated improvement in nearly all symptom outcomes; greatest improvement was in pain interference for both groups and fatigue in young adults. Improvements in HRQOL were also noted in nearly all domains for both groups. Adolescents had greatest improvement in school functioning, total SCDM score and subscales for pain and hurt, pain impact, worry I, emotions, and communication II, and young adults in emotional impact, social impact, and pain impact. No to slight improvements in self-efficacy and transition readiness were observed in both groups. Most correlations across groups had CIs that crossed zero, which suggests associations observed in the population may be positive or negative. Twelve correlations did not cross zero in the adolescent sample compared with 1 in the young adult sample, though 5 additional strong correlations were noted. Of the strongest correlations in young adults, all but 1 indicated more time spent using the app was associated with greater improvement in scores. Of the strongest correlations in adolescents, 5 indicated more frequent app use was associated with greater improvement in scores, 3 indicated more frequent app use was associated with less substantial improvement in scores, 3 indicated more time spent using the app was associated with greater improvement in scores, and 1 indicated more time spent using the app was associated with less substantial improvement in scores. Conclusions: Similarities in pre-post intervention differences in scores suggest consistency in intervention impact on outcomes between adolescents and young adults who have not transitioned to adult care. The intervention may be particularly useful for improving pain interference, emotional impact/functioning, school or social impact/functioning, and pain impact/functioning. Little improvement was noted in transition readiness scores in either group, suggesting the intervention may need to include more robust strategies for transition preparation. There were few consistencies between groups in correlation findings; greater improvement in scores may be attributed to more time spent on app activities in young adults compared with greater frequency of use in adolescents. Future efficacy testing with a larger sample is warranted, to include exploration of associations between app use and outcomes across subgroups with varying characteristics. Figure 1 Figure 1. Disclosures Kanter: Fulcrum Therapeutics, Inc.: Consultancy; Novartis: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; Forma: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; Agios: Honoraria, Membership on an entity's Board of Directors or advisory committees; Beam: Honoraria, Membership on an entity's Board of Directors or advisory committees; Sanofi: Honoraria, Membership on an entity's Board of Directors or advisory committees; Graphite Bio: Consultancy; GuidePoint Global: Honoraria; Fulcrum Tx: Consultancy.