Transition Readiness Assessment Research Articles

Patient-caregiver dyad concordance of transition readiness assessment for adolescent with cancer: A network analysis.

The concordance of adolescents with cancer and caregivers was examined, and the core elements of transition readiness were identified. In this cross-sectional study, 196 adolescent-caregiver dyads completed the Chinese version of Self-Management and Transition to Adulthood with Rx = Treatment Questionnaire and its parent version between March 2023 and August 2023. Intraclass correlation coefficients, paired t-tests and network analysis were used for data analysis. Caregivers reported slightly lower scores for transition readiness than adolescents (3.28 vs. 3.32). Healthcare engagement and provider communication were core elements in transition readiness networks. At the dyad level, agreement between adolescents' and caregivers' transition readiness ranged from poor to fair (intraclass correlation coefficients 0.103-0.486), and a significant difference in structure was found between the two networks. Caregivers tended to underestimate adolescents' transition readiness. Attaining better concordance between adolescents and family caregivers is critical to aligning roles and responsibilities in the transition process. This study extends the evidence on the variation in adolescents' transition readiness, clarifying the complex associative relationships among the elements of transition readiness, which can be potential pathways for improving transition readiness. Second, this study is the first to assess transition readiness from a dyad's perspective. The findings highlighted the patient-caregiver incongruence in rating patients' transition readiness, suggesting that targeted dyadic interventions should be developed and implemented to improve patient-caregiver transition readiness concordance, facilitate effective communication and mutuality between patients and caregivers, and contribute to their collaboration during the transition of adolescents and optimization of outcomes. WHAT PROBLEM DID THE STUDY ADDRESS?: Increased long-term survival rates of survivors of paediatric cancer highlighted the significant need for care continuity. Transitional readiness is an important predictor of adolescent survivor's ability to adapt to a long-term survival period. Assessments of adolescents' transition readiness are limited and overlook the synergies between family caregivers and adolescents in the transition period. WHAT WERE THE MAIN FINDINGS?: The levels of agreement on rating transition readiness varied from poor to fair among adolescent-caregiver dyads, and caregivers tended to underestimate adolescents' transition readiness. The findings highlighted the patient-caregiver incongruence in rating patients' transition readiness. Targeted dyadic interventions should be developed and implemented to improve patient-caregiver's transition readiness concordance, and facilitate effective communication and mutuality between patients and caregivers. Study methods and results reported in adherence to the STROBE checklist. No patients or members of the public were involved in the study. The main findings introduce pathways for improving transition readiness, which can enhance healthcare transition among other medical populations.

A Smooth Transition: Assessing Transition Readiness in Adolescents with Inflammatory Bowel Disease.

Inflammatory Bowel Disease (IBD) is an early onset condition that affects individuals of all ages. Approximately 15%-25% of patients present before the age of 20years, with peak onset occurring during adolescence. To evaluate transition readiness among adolescents diagnosed with IBD and identify barriers to transition. We conducted a cross-sectional study of patients with IBD aged 12-21years. Patients were stratified by age into three groups: A (12-14years), B (14-17years), and C (17 + years). Patients were asked to complete a questionnaire which assessed patient knowledge in three areas of transition: 'Taking Charge,' 'My Health,' and 'Using Health Care.' Fisher's Exact and Chi-Square tests were used to evaluate the associations between age and transition readiness. A total of 127 participants (68 males and 59 females) with a mean age of 16.14years were included. Transition readiness increased with age from 60.7% in Group A to 63.2% and 77.9% in Groups B and C, respectively (p < 0.001). Patient confidence and the importance of transition increased with age, with means of 5.51, 6.17, and 6.94 in Groups A, B, and C (p = 0.02). Patient-reported knowledge of their health condition was > 70%, with no statistical differences between the groups (p = 0.65). Patient knowledge regarding 'Using Health Care' increased from 52% in Group A to 79% in Group C (p < 0.001). The greatest barriers to transitioning were carrying health information for Group A (100%) and obtaining provider referrals for Groups B (75%) and C (51%). This study demonstrated that transition readiness increases with age in adolescents with IBD.

Transitioning from pediatric to adult-oriented healthcare in rheumatology: the pediatric side of the coin.

The transition of adolescents and young adults (AYAs) from pediatric to adult-oriented healthcare may be affected by many factors, including the personal and cultural settings. We aimed to analyze the transition readiness and the factors affecting the transition success in rheumatology. Patients older than 12 years were included in this prospective study. All filled out the Transition Readiness Assessment Questionnaire (TRAQ) 5.0. AYAs were phone-interviewed after their transfer to adult-oriented healthcare. Drug adherence was evaluated with 4-item Morisky Medication Adherence Scale (MMAS-4). AYAs rated their transitional care experience with visual analogue scale (VAS 0-10; 0, the worst; 10, the best). A total of 504 TRAQs were filled out by 406 patients (F/M = 1.5). The total TRAQ score was positively correlated with age and higher in the forms filled out by girls than boys (4.2 vs 4.0, respectively; p= 0.005). The transition was successful for 78 (83.9%) out of 93 patients transferred to adult-oriented healthcare. The VAS for the transition process was lower and the post-transfer MMAS-4 score was worse (8 vs 9, p= 0.030 and 3 vs 4, p= 0.020; respectively) in patients whose transition was not successful when compared with the successfully-transitioned ones. The best-performing TRAQ cut-off value was >4.0 for predicting transfer readiness in rheumatology. A TRAQ score of > 4 could be used while deciding about the transfer readiness of AYAs in rheumatology. Improving the AYAs' experience of the transition process and closely monitoring medication adherence during transition are essential for a successful transition.

Development of transition readiness assessment questionnaire for patients with rare endocrine diseases

Development of transition readiness assessment questionnaire for patients with rare endocrine diseases

Pediatric to Adult Transition in Inflammatory Bowel Disease: Consensus Guidelines for Australia and New Zealand.

The incidence of pediatric inflammatory bowel disease (IBD) is rising, and there is an increasing need to support adolescents when they transition to adult care. Evidence supports the use of a structured transition process but there is great variation across Australasia. The study aim was to develop evidence and expert opinion-based consensus statements to guide transitional care services in IBD. A modified UCLA-RAND methodology was employed to develop consensus statements. An IBD expert steering committee was formed and a systematic literature review was conducted to guide the drafting of consensus statements. A multidisciplinary group was formed comprising 16 participants (clinicians, nurses, surgeons, psychologists), who anonymously voted on the appropriateness and necessity of the consensus statements using Likert scales (1 = lowest, 9 = highest) with a median ≥7 required for inclusion. Patient support groups, including direct input from young people with IBD, informed the final recommendations. Fourteen consensus statements were devised with key recommendations including use of a structured transition program and transition coordinator, mental health and transition readiness assessment, key adolescent discussion topics, allied health involvement, age for transition, and recommendations for clinical communication and handover, with individualized patient considerations. Each statement reached median ≥8 for appropriateness, and ≥7 for necessity, in the first voting round, and the results were discussed in an online meeting to refine statements. A multidisciplinary group devised consensus statements to optimize pediatric to adult transitional care for adolescents with IBD. These guidelines should support improved and standardized delivery of IBD transitional care within Australasia.

Addressing the Transition to Adult Health Care for Adolescents and Young Adults with Pancreatic Disorders.

The transition from pediatric to adult health care is a vulnerable time period for adolescents and young adults (AYA).Guidance on how to effectively implement transition support for AYA with recurrent acute pancreatitis (RAP) and chronic pancreatitis (CP) is lacking. To address this gap, we formed a consortium of pancreatic centers that would work in coordination to test interventions to improve the transition for AYA with RAP and CP.We then performed a baseline assessment of consortium resources and patient transition readiness and developed an educational toolkit for AYA with RAP and CP. Results:Our consortium consists of three National Pancreatic Centers of Excellence, each with a multidisciplinary team to work with AYA with RAP and CP.While our patients ages 18 to 23 were generally seen at the pediatric centers, the baseline assessment of transition readiness suggests that our patients may have higher transition readiness scores than other populations.The educational toolkit contains both pancreas-specific and general guidance to support AYA with RAP and CP during their transition, including guidance on nutrition, pain management, and finding an adult gastroenterologist. Conclusions:We have formed a consortium to test interventions to improve the transition to adult health care for AYA with RAP and CP.We have completed a baseline assessment and developed our first intervention: an educational tool kit.Future work planned includes tests of the tool kit and efforts to improve rates of transfer to an adult provider for YA with RAP and CP.

Emerging Adults With Type 2 Diabetes: Understanding Illness Experience and Transition to Adult Care

PurposeYouth-onset type 2 diabetes (T2D) is increasingly common and is often diagnosed shortly before transition from pediatric to adult care. Little is known about the experience of emerging adults (EAs) with T2D and the readiness, barriers, and facilitators to transition. This study sought to describe the illness experience of EAs with T2D and perceptions about transition, and explore themes by “transition readiness,” measured by the Transition Readiness Assessment Questionnaire (TRAQ). MethodsIn this mixed-methods study, we conducted semi-structured interviews with EAs with T2D using a guide grounded in the health belief model, administered the TRAQ, and collected disease metrics from the electronic medical record. We developed a coding scheme using a directed content-analysis approach and triangulated qualitative and quantitative data to compare themes stratified by mean TRAQ score. ResultsParticipants described modifying factors like adjusting to life with a chronic illness and coping with mental health issues as critical elements of the illness experience that influence transition. Individual beliefs emerged including the perceived risk of disease complications being informed by experience of family members, self-efficacy in diabetes care hinging on the ability to be highly organized, and transition as a daunting obstacle with numerous emotional and logistical barriers. Participants emphasized the need for support from caregivers and providers throughout transition. Themes did not vary significantly by TRAQ score. DiscussionExperiences of EAs with T2D suggest more assistance is needed in the transition period to address factors such as mental health, organizational skills, and identifying support people to facilitate care.

Perceived transition readiness among adolescents and young adults with neurofibromatosis type 1 and plexiform neurofibromas: a cross-sectional descriptive study.

Neurofibromatosis type 1 (NF1) is a genetic cancer predisposition syndrome that can impact multiple organ systems and is associated with plexiform neurofibroma tumors, requiring care from birth through adulthood. Adolescents and young adults (AYAs) with NF1 face several barriers to transition from pediatric to adult care. This cross-sectional study aimed to assess transition readiness in this population and to evaluate relationships between specific NF1 symptoms and transition readiness. AYAs (aged 16-24) enrolled in existing studies related to NF1 were eligible. AYAs and their parents completed measures of transition readiness (Transition Readiness Assessment Questionnaire version 4 [TRAQ-4]), and AYAs also completed a transition readiness interview (UNC TRxANSITION). Thirty-eight AYAs (mean age = 19.95 ± 2.68 years) participated in the study. Average TRAQ scores indicated that AYAs were still learning Self-Management skills (M = 3.37, SD = 1.08) and Self-Advocacy skills (M = 3.98, SD = 0.67). Older AYAs had higher TRAQ scores for Self-Management (r = 0.70, p < .001) and Self-Advocacy (r = 0.41, p = .011) than younger AYAs. Parents and AYAs had similar TRAQ scores. About one third of AYAs (37.8%, n = 14) expressed uncertainty about how NF1 might affect them in the future. The remaining AYAs mostly expressed concerns regarding tumor growth, pain, or cancer. In this small study, preliminary findings suggest that AYAs with NF1 express confidence in many areas of transition readiness but continue to require support, particularly with Self-Management skills. Given the gaps in understanding of future health risks, AYAs with NF1 would benefit from early assessment, psychoeducation, and support for transition readiness to adult care.

Quality Improvement Identifies Healthcare Transition Disparities in Adolescents with Congenital Heart Disease and Disabilities.

We aim to implement healthcare transition (HCT) education for youth with congenital heart disease (CHD) and assess HCT preparedness for cardiac self-care. An HCT clinic was implemented at an academic pediatric cardiology clinic for CHD youth 17 years of age and older. An educator used transition readiness assessment questionnaires and discussed HCT material. The percentage of eligible youth who received HCT education and the cause for missed occurrences were tracked. Plan-do-study-act cycles began in August 2020 to improve the number of youths reached. Secondary analyses assessed improvement differences among those without cardiac procedures or disabilities. HCT education provision improved from a mean of 38% to 73% in the 17-year and older age group by December 2022. Communication failure was the leading cause of missed visits in 2021 (30%), reduced to 0 by 2022 following plan-do-study-act cycles. Other missed HCT visits included clinic add-ons after screening, limited staff availability, and unidentified eligibility. Readiness assessments were similar for youth with and without prior cardiac procedures, for example, confidence in taking charge of their health care (P = 0.47) and moving to adult care (P = 0.22). Adolescents with disabilities were significantly less confident than those without disabilities in taking charge of their heart health care (6.3 versus 7.5, P = 0.04) and moving to adult care (4.9 versus 7.4, P < 0.001). Implementation of a CHD HCT clinic improved successful education delivery. Provider engagement and clinic staffing are important for sustainability. HCT knowledge gaps exist for all adolescents, yet those with disabilities had the greatest deficits.

P350 Development of consensus statements for transitional care for adolescents with Inflammatory bowel disease throughout Australia and New Zealand

Abstract Background The incidence of paediatric inflammatory bowel disease (IBD) is rising, and as such there is an increasing need to support adolescents with IBD as they from transition from paediatric to adult care. The use of a structured process for transition is well supported in the literature, however, variation in the delivery of transitional care for adolescents with IBD has been identified across Australis and New Zealand. The aim of this study was to develop consensus statements, based on evidence and expert opinion, to guide transitional care services in IBD. Methods The consensus statements were developed using a modified UCLA-RAND methodology. An IBD expert steering committee was formed, and then a systematic literature review conducted to grade the available evidence and inform initial development of consensus statements. A multi-disciplinary group was formed comprising 16 participants [clinicians, nurses, surgeons, psychologists], that voted anonymously on the level of appropriateness and necessity for each consensus statement, as well as provided general feedback for each. Scoring was facilitated using Likert scales [1=lowest, 9=highest] with a median ≥7 required for inclusion. Results Fourteen consensus statements were devised by the Steering committee (Table 1). Key recommendations including the use of a structured transition programme and transition coordinator. Statements recommended assessment of mental health and transition readiness, and outlined discussion points regarding lifestyle, environment and psychosocial factors to be held with adolescents. The importance of allied health input, the age for transition, recommendations for clinical communication and handover were highlighted, as well as considerations for individual patients. In the first voting round by the multi-disciplinary group each statement reached a median score of ≥ 8 for appropriateness, and ≥7 for necessity. An online meeting with both groups was held to discuss voting results and refine statements. Table 1. Final consensus statements to guide transition of children with inflammatory bowel disease in Australasia. Conclusion There is an identified need for guidance in paediatric to adult transitional care for adolescents with IBD. Consensus statements were developed by a multi-disciplinary group, supported by published evidence, to provide this guidance. The planned publication of the consensus process and statements will facilitate standardize delivery of IBD transitional care within Australasia.

P198 Systematic review to highlight practices and programmes for transition for adolescents with Inflammatory bowel disease

Abstract Background Adolescents with inflammatory bowel disease (IBD) will eventually transition from the family-centric paediatric healthcare team to the adult service. This process happens at an appropriate age or level of development and depends on a number of factors such as transition readiness, disease specific factors, and local policies and practice. This transition period is challenging for patients, families and healthcare providers. The use of structured transition programmes is increasingly incorporated into standards of care, yet the optimal format is not yet fully delineated, and practices vary considerably. The aim of this study was to carry out a systematic review of structured transition programmes and their components to assess impact on disease-specific and transition-related outcomes. Methods A literature review was carried out in four main databases (PubMed, CINAHL, CENTRAL, EMBASE) and relevant publications from the year range 1970-2023 reviewed. Inclusion criteria: reporting on adolescent IBD patients and investigating structured transition programmes/interventions. Exclusion criteria: not reporting outcomes relating to transition readiness/skills or disease related outcomes. Two investigators reviewed the articles, extracted data, and two assessed bias. Results There were 3432 articles identified from initial searches, and 38 included in the final review. Twenty-six studies reported the use of structured transition programmes, and 12 investigated discrete interventions. The key outcomes studies included knowledge, self-efficacy, adherence, clinic attendance and transition readiness. These outcomes consistently improved with the use of structured transition programmes. Those adolescents with IBD transitioning with no structured programme experienced a 3.5-fold increase in IBD related surgical rates, and 2-fold increase in hospital admission rates. Structured transition programmes were shown to significantly improve transition readiness assessment scores. Transitional care programmes consistently improved the following outcomes; relapse/admission rates, corticosteroid use, quality of life, and surgery. The bias assessment showed between-study heterogeneity, low quality of evidence, and high risk of bias. Conclusion Transition outcomes for adolescents with IBD were consistently improved with the use of structured transition programmes. This literature review highlights the considerable variation in delivery of transition care, and the need for optimization of strategies. There is no current standardized model for adolescent IBD patients in Australasia, and this review will guide development of regional IBD transitional care consensus statements.

Protocol for evaluation of the feasibility and preliminary efficacy of a targeted transition readiness workshop intervention for pediatric brain tumor survivors

BackgroundPediatric brain tumor survivors (PBTS) are at risk of physical, cognitive, and psychosocial challenges related to their diagnosis and treatment. Routine follow-up care as adults is therefore essential to their long-term health and quality of life. In order to successfully navigate to adult healthcare, it is recommended that youth develop transition readiness skills. Existing transition readiness interventions often focus on disease management. However, PBTS are also at risk of social competence and cognitive functioning challenges. In this paper, we describe the protocol of this pilot study and the methodology that will be used for the evaluation of the feasibility, acceptability, and preliminary efficacy testing of the first targeted transition intervention workshops specifically designed to meet the needs of PBTS and their caregivers.MethodsThis study will use a mixed method to evaluate three 1 ½-h workshops targeted for dyads (N = 40) of PBTS (14 years or older) and their parents. Dyads will be recruited via a community pediatric cancer organization and the long-term follow-up clinic of a large pediatric hospital. Participants will complete an online survey which includes the Transition Readiness Assessment Questionnaire (TRAQ) before and after the workshops.Each workshop will cover a specific topic related to PBTS transition readiness: disease management, social competence, and cognitive functioning. Workshops will follow the same structure: topic presentation, discussion by a post-transfer survivor or parent, teaching two strategies, and workshop evaluation. Workshops will be co-led by healthcare specialists and patient partners.Feasibility and acceptability will be assessed via recruitment, attendance, retention, and Likert scales, and they will be analyzed by describing and comparing rates. Satisfaction will be measured using satisfaction surveys and audio-recorded focus groups. Qualitative data will be described through thematic content analysis. In order to test the preliminary efficacy of this study, we will compare transition readiness skills pre- and post-workshops using paired samples T test and ANCOVA to examine the impact of workshop on TRAQ skills.DiscussionResults of the study will inform refinement and future broader implementation of targeted transition readiness workshops for the specific needs of pediatric brain tumor survivors.

Online Educational Resources for Youth Living With Type 1 Diabetes Transitioning to Adult Care: An Environmental Scan of Canadian Content

ObjectivesThere are many educational resources for adolescents and young adults living with type 1 diabetes; however, it is unknown whether they address the breadth of topics related to transition to adult care. Our aim in this study was to collect educational resources relevant to Canadian youth and assess their quality and comprehensiveness in addressing the knowledge necessary for youth to prepare for interdependent management of their diabetes. MethodsWe conducted an environmental scan, a systematic assessment and analysis, of online education resources in English and French relevant to Canadian youth living with type 1 diabetes. Resources were screened using an open education resource evaluation grid and relevant resources were mapped to the Readiness for Emerging Adults with Diabetes Diagnosed in Youth, a validated diabetes transition readiness assessment tool. ResultsFrom 44 different sources, 1,245 resources were identified and, of these, 760 were retained for analysis. The majority were webpages (50.1%) and downloadable PDFs (42.4%), and 12.1% were interactive. Most resources covered Diabetes Knowledge (46.0%), Health Behaviour (23.8%), Insulin and Insulin Pump Management (11.8% and 8.6%, respectively), and Health-care System Navigation (9.7%). Topic areas with the fewest resources were disability accommodations (n=5), sexual health/function (n=4), and locating trustworthy diabetes resources (n=3). ConclusionsThere are many resources available for those living with type 1 diabetes preparing to transition to adult care, with the majority pertaining to diabetes knowledge and the least for navigation of the health system. Few resources were available on the topics of substance use, sexual health, and reproductive health. An interactive presentation of these resources, as well as a central repository to house these resources, would improve access for youth and diabetes care providers during transition preparation.

Implementing a Structured Health Care Transition (HCT) Process for Sickle Cell Disease Using Quality Improvement: Results from the Sickle Cell Trevor Thompson Transition Project HCT Learning Collaborative

Ensuring consistent healthcare during transition is challenging for sickle cell disease (SCD). Emerging adults with SCD (EASCD) experience triple the mortality rates and double the acute care utilization rates compared to younger and older ages. The transition period is also plagued by reduced quality of life (QOL) with increased missed school days per year and worse standardized test scores. The Sickle Cell Trevor Thompson Transition (ST3P-UP) study aimed to improve acute care utilization and QOL for EASCD by standardizing the transition process while engaging the community as an equal partner. A prior regional stakeholder needs assessment identified care standardization, establishing individual emergency care plans (ECPs), and community engagement as critical success factors for improved access to and engagement in care during transition. The ST3P-UP SCD health hare transition (HCT) learning collaborative engaged 14 pediatric and adult paired sites that included a partner community-based organization (CBO) using the concept of a site “Triad” as the critical framework of each sites transition team. The collaborative aim statement established at a kickoff meeting was “ to improve the health of EASCD by implementing an education-based transition program in pediatric and adult SCD clinics to be accomplished by 24 months, using the Model for Improvement and the Got Transition Six Core Elements of Transition (6CE) model. ” Using the 6CE framework established by Got Transition® and the Model for Improvement QI methodology, we established a SCD HCT Process Measurement Tool (PMT) and 2 outcome measures for the transition learning collaborative namely: transition readiness assessment (RA), and an individualized emergency care plan (ECP). Monthly virtual meetings provided coaching on HCT recommendations, use of Plan-Do-Study-Act cycles, and practical guidance on implementing the 6CE. Sites were given a change package that included provider and patient education materials, resources to establish and strengthen a QI team, transition billing and coding resources etc.) to improve their transition processes. Implementation of 6CE was measured across 14 clinical sites, each comprised of both pediatric and adult clinics, who cared for 1625 EASCD aged 16-25. Clinical programs varied: 12 urban, 2 rural; 12 academic, 2 non-academic; 6 small, 8 large. The HCT-PMT assessed 6CE implementation adherence using iterative QI strategies at baseline (2018) and every six months thereafter for 54mo (2022). Pre-post results were compared for the overall group and by practice size. All 14 sites made substantial progress towards implementing a structured HCT process within 24 months. Overall HCT-PMT scores improved by 402% by the end of the 54mo collaborative (19.4 ± 14.1 to 97.4 ± 5.2). PMT scores improved significantly by 312% (24 to 99) for pediatrics and 539% (15 to 96 for adult sites. Pediatric PMT scores were higher at each assessment interval vs. adult scores, however adult sites achieved a higher degree of improvement. Smaller sites achieved a higher degree of improvement vs. large sites. Large site PMT scores improved 362% (21 to 97); small site PMT scores improved 444% (18 to 98). Additionally, sites demonstrated substantial improvements with having current ECPs for EASCD annually (completed and reviewed within the past year). At baseline, only 20% of pediatric and 3% of adult EASCD had a current ECP; only 38% of pediatric and 20% of adult EASCD had a current RA. Run charts demonstrated significant improvement with implementing the ECP measure. Pediatric sites had significant and sustained improvement in adherence to the ECP measure for &amp;gt;6mo. Adult sites started with a lower baseline score. Although they met their goal of showing process capability, they have not yet demonstrated sustained improvement. By Dec. 2022, site adherence with current ECP improved to 84% and 70% for pediatric and adult sites respectively. Adherence with current RA also improved to 76% and 70% for pediatric and adult sites respectively. All 14 sites showed significant improvement with implementing a structured HCT process aligned with the 6CE using QI confirming its feasibility in establishing a standardized and measurable transition process that can be applied to various chronic conditions.

1715. Use of a validated tool to assess transition readiness to adult care of adolescents living with HIV in Rwanda

Abstract Background Recent African studies report that only 11-60% of transitioned adolescents living with HIV (ALHIV) were successfully retained in care after healthcare transition (HCT) from pediatric to adult care settings. HCT without adequate pre-transition preparation can result in loss of follow-up and poor treatment adherence. Transition guidelines recommend longitudinal transition readiness assessment using an objective measure, a practice not routinely implemented. Methods During March-April 2023, HCT readiness was assessed in a cross-sectional study of Rwandan ALHIV age ≥ 18 years attending the University Teaching Hospital of Kigali pediatric HIV clinic and about to transition to adult care. Transition readiness was assessed using the validated Transition Assessment Readiness Questionnaire (TRAQ 5.0), consisting of 20 questions in five subscales: Appointment Keeping; Tracking Health Issues; Managing Medications; Talking with Providers; and Managing Daily Activities. Responses were graded on a Likert scale of 1-5 (1 being “No, I do not know how” and 5 being “Yes, I always do this when I need to”). Scores less than 4 indicate need for education. Results In 32 perinatally-infected ALHIV, mean age at diagnosis was 3.7 years (SD 2.7) and at antiretroviral therapy initiation 5.2 years (SD 3.3). Mean number of clinic visits in the prior 12 months was 4 (S.D 0.48, range 3-6). Half were still in high school, and most (88%) lived with their biological parents. The mean TRAQ scores were Appointment Keeping 3.82 (SD 0.61); Tracking Health Issues 3.43 (SD 0.93); Managing Medications 4.56 (SD 0.59); Talking with Providers 4.71 (SD 0.4); and Managing Daily Activities 4.52 (SD 0.46). Conclusion In a first-of-its-kind study in East Africa, a validated HCT assessment in Rwandan ALHIV suggests overall readiness in managing medications, daily living tasks and communication with providers. Needs for further education in tracking health and keeping appointments were identified, important for independent self-management of chronic disease. Longitudinal follow-up and comparison to other populations (now feasible due to using a validated tool) are needed, to develop and further evaluate the impact of needed interventions on post-transition outcomes. Disclosures Tanya Rogo, MD, AstraZeneca: Grant/Research Support|Pfizer: Advisor/Consultant|Pfizer: Grant/Research Support

THU238 Experience In Transition From Pediatric To Adult Care In Chronic Endocrinological Pathology

Abstract Disclosure: S. Tormo: None. M.S. Kastelic: None. M.V. Forclaz: None. S.A. Varela: None. E. Giacoia: None. Introduction: Advances in medicine in recent decades have increased the survival of pediatric patients with complex chronic pathologies who reach adulthood. Transition refers to the process followed by young persons with chronic conditions to transfer health care, in our case from the pediatric endocrinologist to the adult endocrinologist. It is a dynamic, complex process and must be planned considering medical, psychosocial and educational needs of the adolescent in the change of care that implies an increase in autonomy. ObjectivesPrimary: describe the demographic characteristics of the population that attended the transitional endocrinology clinic. Secondary: evaluate the result of the TRAQ.5.0 survey (Transition readiness assessment questionnaire) in this population. Material and methods Design: observational, cross-sectional and analytical study. The medical records of 155 patients over 15 years old in follow-up for chronic endocrinological diseases in the transition clinic from November 2018 to August 2022, were analyzed. The patients underwent the TRAQ questionnaire validated in Argentina. Statistical Analysis: Quantitative variables are presented with medians and range and qualitative variables with absolute and relative frequencies. The comparisons between the subgroups were made through the Mann Whitney test, considering a p value &amp;lt;0.05 as statistically significant. Results: 155 patients with a median age of 20 years (r:15-30 years) were included. Most were women (61%). 75 % were derived from pediatrics at our hospital. 81% of them attended accompanied. 98% of the patients completed the Questionnaire (TRAQ). No statistically significant changes were found in the TRAQ score according to sex, age and whether the patients were accompanied or not. 79.8 % of the patients stated that they were studying at the time of follow-up, 11% of patients work. 15% (24 patients) were transferred to adult clinics, of which 87% continue follow-up. 80% of non-transferred patients continue follow up. When comparing the TRAQ questionnaire between the transferred patients and those who continue in follow-up, we found significant differences in medication management with a median of 3.6 in the referred group and 3.1 in the follow-up group p: &amp;lt;0.03, and appointment attendance: with a median of 3 in the referred group, 2.3 in the follow-up group (p &amp;lt; 0.01) Conclusions: The goal of the transition is to reduce loss of follow-up and improve the quality of life of patients through an orderly process. We highlight the usefulness of certain tools, such as the TRAQ questionnaire to assess the preparation of patients for the transition. Presentation: Thursday, June 15, 2023

Evaluating Transition Readiness in Older Adolescents and Young Adults With Type 1 Diabetes.

For older adolescents and young adults (AYAs) with type 1 diabetes, successful transition from pediatric to adult diabetes care requires ongoing planning and support. Yet, the transition to adult care is not always smooth. Some AYAs struggle to leave pediatric care or experience significant gaps between pediatric and adult diabetes care. The use of diabetes-specific transition readiness assessments can inform transition planning and support successful preparation for adult care. This study evaluated transition readiness in a diverse sample of AYAs nearing transition to adult diabetes care. Findings suggest that AYAs may benefit from additional preparation and education related to sexual health, tobacco use, and diabetes complications.

Transition readiness among adolescents and young adults with haemophilia in the Netherlands: Nationwide questionnaire study.

Care for adolescents with haemophilia is transferred from paediatric to adult care around the age of 18 years. Transition programs help to prepare adolescents for this transfer and prevent declining treatment adherence. Evaluating transition readiness may identify areas for improvement. Assess transition readiness among Dutch adolescents and young adults with haemophilia, determine factors associated with transition readiness, and identify areas of improvement in transition programs. All Dutch adolescents and young adults aged 12-25 years with haemophilia were invited to participate in a nationwide questionnaire study. Transition readiness was assessed using multiple-choice questions and was defined as being ready or almost ready for transition. Potential factors associated with transition readiness were investigated, including: socio-demographic and disease-related factors, treatment adherence, health-related quality of life, and self-efficacy. Data of 45 adolescents and 84 young adults with haemophilia (47% with severe haemophilia) were analyzed. Transition readiness increased with age, from 39% in 12-14 year-olds to 63% in 15-17 year-olds. Nearly all post-transition young adults (92%, 77/84) reported they were ready for transition. Transition readiness was associated with treatment adherence, as median VERITAS-Pro treatment adherence scores were worse in patients who were not ready (17, IQR 9-29), compared to those ready for transition (11, IQR 9-16). Potential improvements were identified: getting better acquainted with the adult treatment team prior to transition and information on managing healthcare costs. Nearly all post-transition young adults reported they were ready for transition. Improvements were identified regarding team acquaintance and preparation for managing healthcare costs.

E73 Resilience and transition readiness for adolescents living with rheumatic diseases: a narrative review of literature and a plea for action

Abstract Introduction Rheumatic diseases are among common chronic health conditions affecting the pediatric population and persist through adolescence to adulthood. Adolescence is a complex period of development, growth and vulnerability, especially for those living with chronic illnesses. Socio-emotional, physical and cognitive growth spurt, quest for independence and peer pressure affect coping with rheumatic disorders and adherence to management. Dealing with rheumatic diseases may be associated with disruption of school routine, relationships and friendships, body image and overall quality of life, and may be devastating to affected adolescents. An additional toll on mental health is exerted by dealing with loss of fellow patients who succumb from the diseases like their own. A comprehensive mode of care that foster resilience and well-being of adolescents beyond disease control, and ensuring successful transition to adult care is of paramount importance. The objective of this review was to synthesize evidence on resilience programs and transition services offered to adolescents living with rheumatic diseases. Adolescents living with rheumatic diseases are of two classes; those growing into adolescence with child-onset rheumatic diseases and those who are newly diagnosed during adolescence. This review included both populations. We also aimed to specifically document such services existing in the Sub-Saharan Africa (SSA) context. Methods We conducted a narrative review of literature from publicly available databases including google scholar and PubMed. PICO aspect of this review was as follows; P: Adolescents living with rheumatic diseases, I: Transition and resilience programs to foster their well-being during and beyond adolescence C: there was no comparator group assessed and O: successful transition to adult care. Results Challenge on comprehensive care for adolescents living with rheumatic diseases and successful transition of adolescents from child-oriented care to independent adult care exist globally. Lack of adolescent oriented care, teaching aids and poor knowledge of providers on the importance of offering adolescent-oriented care rather than dealing with the disease alone have been implicated. Further to that, shortage of resources such as space, finances and personnel have been documented to hinder implementation of adolescent friendly services. Lack of integrated multidisciplinary coordination involving clinicians, sociologists, psychologist and community workers has also been shown to hamper wholistic care approach for adolescents growing up with rheumatic diseases. Various clinic models, transition programs, transition readiness assessment tools (TRAT) and transition readiness assessment questionnaires (TRAQ) have been proposed, most of which are from high income settings. Of importance to note, there is an alarming scarcity of literature from SSA context despite a growing population of children and adolescents diagnosed with rheumatic diseases. Questions remain; what are the needs to be addressed to enhance resilience of adolescents living with rheumatic diseases in SSA context? What are the acceptable methods to assess transition readiness, foster adolescents’ treatment responsibility and good treatment outcomes? Conclusion Due to complexity of adolescence time period, there is an urgent need for context specific models that may help adolescents living with rheumatic diseases navigate through adolescence and successfully transit to independent adult care. Multiple clinical care and transition models have been proposed to enhance successful transition of adolescents living with rheumatoid diseases to adulthood. However, adolescents from SSA may have unique challenges compared with those from developed countries where most of the studies have been done. There is an urgent need to address this gap. Ethics This work encompasses synthesis of evidence already published material containing de-identified information. Ethical approval was not deemed pertinent.

Outcomes of a Structured Ambulatory Care Health Care Transition Approach in a Large Children's Hospital

PurposeWithout a structured health-care transition (HCT) process, youths with chronic conditions face increased morbidity, care gaps, and dissatisfaction. This article documents the process and outcomes of implementing a standardized approach in a large children's hospital. MethodsChildren's Mercy Kansas City adopted Got Transition's Six Core Elements of Health Care Transition and established a system-wide implementation plan, between 2015 and 2019, involving leadership buy-in, consumer engagement, infrastructure improvements, and quality improvement efforts. Outcomes measured included the number of youths aged 12–21 years receiving transition readiness assessments and participating in goal setting, receiving counseling, and receiving a transfer order, if appropriate. Also, Division-specific process outcome surveys were conducted annually using Got Transition's Current Assessment of HCT Activities. ResultsA total of 8,099 unique patients received a structured HCT intervention using the Six Core Element approach over the 5-year period. From 2015 to 2019 the average annual growth was: 207% for completion of transition readiness and goals assessments, 243% for charting of HCT discussions, and 105% for transfer orders. In 2015, 3/20 (15%) divisions were implementing this HCT intervention; in 2019, 17/20 (85%) divisions were implementing it, representing a 467% growth. Division participation in measuring HCT implementation also increased by 89% from 9/20 in 2016 to 17/20 in 2019. The average Current Assessment of HCT Activities scores increased by 35% from 14.55/32 to 19.67/32 during that time. DiscussionThis hospital-wide program demonstrates that a standardized HCT process can be successfully implemented in a diverse group of outpatient pediatric primary and subspecialty care settings.