Transitioning from Pediatric to Adult Care: The Role of an Education Curriculum for Adolescents and Young Adults with Sickle Cell Disease

Introduction: Sickle Cell Disease (SCD) is the most common inherited blood disorder, affecting over 100,000 people in the United States. The latest medical managements have yielded better outcomes in mortality and morbidity among people with SCD. Despite these advancements, emerging young adults have complications transitioning from pediatric care to adult care and remain with the highest mortality rate in the population. Got Transition is a federally funded national resource center that aims to support youth and young adults moving from pediatric to adult care by implementing the Six Core Elements of Transition. At our institution, we established a transition program aimed at improving clinical care, medical management, and improvement in the transition from pediatric to adult medical care. Our goal was to develop a standardized, age appropriate sickle cell education curriculum to implement at clinic visits for our patients aged 13 and older. Hypothesis: We hypothesize that with a structured transition curriculum, we would be able to improve patient knowledge in medical aspect of the disease, academic resources and a better understanding of their complex psychosocial needs. Methods: We developed a transition program called Adolescent and Young Adult Sickle Cell Uplift and Learn Program for Transition (AYA SCULPT) that would focus on patients starting at 13 years old with a multidisciplinary approach of care. We adopted the Got Transition model implementing the Six Core Elements of Transition. Our team not only wanted to address educational topics related to their medical care, but also psychosocial and academic topics. A transition education curriculum was created spanning three age groups on the three major topics and further broken up into three smaller sections for clinic use to accommodate for time restraints (Table 1). A pilot of the medical curriculum was started August 2019 addressing medical topics relating to better understanding of sickle cell disease. We then introduced our psychosocial curriculum in January 2021. A member of our comprehensive sickle cell team provides the four-question pre-test to the patient at the beginning of their regularly scheduled clinic appointment. At the end of the appointment the nurse or provider will grade the pre-test and provide verbal education as well as printed material on the topics for the day. Scoring and topics are tracked in the patient's note as well as in a transition education database. At the patient's next visit, the same test is administered as a post-test in order to determine knowledge acquired and retention of the materials. Post-test scores are also recorded in the patient note and transition education database. Once the patient finishes a module, we move to the next topic at the next regularly scheduled visit. Depending on the patient's genotype and medication management, post-tests can be given between two to six months after the pre-test. Results: Scores from pre-test were compared to those of post-test for patients that had the opportunity to complete the medical curriculum quizzes. One hundred and fifty six patients range from age 13-21 were included in this pilot study. Of patients aged 19-21, 69% have taken at least one pre-test and post-test for the medical education (63 total pre- and post-tests). Forty-three (78%) patients aged 16-18 have taken at least one pre-test and post-test (75 total pre- and post-tests). Thirty-three (67%) patients aged 13-15 have taken at least one pre-test and post-test (53 total pre- and post-tests). Results were categorized as score increased, score unchanged (pre-test score was not 100%), maintained 100% (unable to increase in score), and score decreased. In every age group, the category with the most results was "score increased." Shown in Table 2. Conclusion: Further extrapolation suggests that the medical curriculum provided in clinic improves the sickle cell knowledge in this adolescent and young adult population. Though all age groups improved, the biggest improvement was noted in knowledge with our 13-15 year olds. These results suggest that early transition education can be impactful even if started at the early phases of adolescence. Studies are still ongoing with our medical curriculum and early psychosocial data is beginning to support our previous findings. As part of transition health care, focusing on disease education can provide better knowledge and hopefully improve patient outcomes. Figure 1 Figure 1. Disclosures Clay: Novartis: Honoraria; GBT: Membership on an entity's Board of Directors or advisory committees.

Feasibility of Delivering Pediatric-to-Adult Transition Education during Annual Comprehensive Clinic Appointments and Patient-Reported Outcomes: A Quality Improvement Study

Individuals with bleeding disorder diagnoses require developmentally sensitive care across the lifespan, particularly as they gain knowledge and skills necessary to successfully tackle their illness-specific needs as independent adults (Breakey et al., 2010). The current study describes one phase of a larger quality improvement (QI) initiative aimed at improving transition from pediatric to adult care (TAC) at one US Hemophilia and Thrombosis Center (HTC). Our aim was to assess the feasibility of delivering transition specific education to youth-caregiver dyads during youth annual multidisciplinary clinic appointments. Youth-caregiver dyads were selected given previous research revealing that both patients and their parents express worries about related to TAC (Geerts et al., 2008). Education included discussion of the knowledge and skills necessary for autonomous management of one's bleeding disorder (e.g., illness basics, treatment, communication, and healthy living). During an 8-month period, 101 youth-caregiver dyads were approached. Patients were between the ages of 12 and 25 (M age = 17.66, SD = 3.45). Approximately half of patients were diagnosed with hemophilia A (53.5%) and 16.8% were female. Of the 101 patients approached, 90 completed the transition education discussion. On average, these discussions took 12.80 minutes (SD = 8.49) and ranged from 5 to 50 minutes. Social work delivered the bulk of these discussions (78.7%) and spent an average of 10.61 minutes (SD = 5.76) with youth and caregivers. While the intention was to deliver transition education to youth-caregiver dyads, this only occurred in 37 discussions. Other discussions included the patient only (n = 31), caregiver only (n = 20), or had missing data (n = 1). In instances when a youth-caregiver dyad was approached, but a discussion did not take place, barriers to completing the discussion were identified. "Provider" was listed most frequently (n = 5) as a barrier (e.g., youth sent home by medical team prior to transition discussion occurring; miscommunication between members of multidisciplinary team; low staffing of those trained to deliver transition discussion). Even in instances when a transition discussion did take place, barriers to having the discussion were identified. "Patient" barriers were the most frequently listed (n = 13), followed by barriers related to "Time" (n = 11), and barriers related to "Clinic" (n = 3). At the end of the transition discussion, youth and/or caregivers were encouraged to identify a goal for improving their skills or knowledge in one of the four areas discussed during their appointment. Of those having transition discussions, 72 created a transition goal. The majority of participants reported goals related to Treatment (e.g., infusion skills; n = 36) followed by goals related to Communication (n = 18), Healthy Living (n = 11), and Bleeding Disorder Basics (n = 7). There was a statistically significant difference in the type of goal of expressed by youth and/or caregivers when the patient was 17 years old or younger vs those older than 18, X 2 (3, N = 72) = 9.49, p = 0.024. Generally, more youth reported goals related to Treatment (e.g., infusion skills) than predicted by chance in both age groups. Patients or patient caregivers were contacted via phone between 5 and 14 months following their transition discussion. Approximately 1/3 of the patients who completed transition discussion, responded and provided ratings on progress toward meeting their transition goal. Ratings (M = 4.24, SD = 2.63) were made on a Likert-type scale ranging from 1 (no progress made) to 10 (maximum progress made). The information gleaned from this QI initiative revealed that delivery of transition-specific education within the CU-HTC annual multidisciplinary appointments is feasible and in some cases, served as the impetus necessary for accomplishing transition-specific goals. The results from this initiative have been instrumental in subsequent transition-related efforts related to: (a) fostering full engagement across the multidisciplinary team in TAC efforts utilizing HEMO-Milestones Tool (Croteau et al., 2016); (b) adopting specific materials developed to assess TAC in individuals with bleeding disorder diagnoses (i.e., American Society of Hematology Hemophilia Transition Readiness Assessment); and (c) reducing time between patient goal-setting and follow-up from the HTC. Disclosures Wang: Novo Nordisk: Consultancy, Other: Clinical trial investigator; Bioverativ: Consultancy, Other: Clinical trial investigator; Bayer: Consultancy, Other: Clinical trial investigator; Octapharma: Other; uniQure: Consultancy, Other: Clinical trial investigator; Pfizer/Spark: Other: clinical trial investigator; Genentech: Consultancy, Other: Clinical trial investigator; BioMarin: Consultancy, Other: Clinical trial investigator; CSL Behring: Consultancy, Other: Clinical trial investigator; Takeda: Consultancy, Other: Clinical trial investigator; Hema Biologics: Consultancy, Other: Clinical trial investigator. Buckner: CSL Behring: Honoraria; Tremeau Pharmaceuticals: Consultancy, Honoraria; Genetech: Honoraria; Bayer: Honoraria; Spark: Honoraria; Sanofi: Honoraria; Novo Nordisk: Honoraria; Pfizer: Honoraria; BioMarin: Consultancy, Honoraria; Takeda: Honoraria; American Thrombosis: Membership on an entity's Board of Directors or advisory committees; Hemostasis Network: Membership on an entity's Board of Directors or advisory committees; uniQure: Consultancy, Honoraria.

Amalan Taksonomi Program Transisi ke Arah Pelaksanaan Program Transisi Kerjaya Terhadap Murid Berkeperluan Khas (MBK)

Getting job opportunities is the biggest challenge for students with special needs in Malaysia and the transformation through the Career Transition Programme has proven successful in training them to work. This study based on two (2) main objectives namely to identify the level of Transition Program Taxonomy and identify the demographic relationship of respondents with the level of Transition Program Taxonomy towards the implementation of Career Transition Programme for special needs students. Quantitative methods in the form of survey studies using Ecological Theory and Taxonomy Model of Transition Program as well as questionnaires adapted from Team Planning Tool for Improving Transition Education and Services (Paula D. Kohler). The findings of the study showed a very high and high level of mean scores on the five practices in the Transition Program Taxonomy. Meanwhile, there is a linear relationship (at a very high level) between the demographics of the respondents with the Transition Program Taxonomy in the implementation of the Career Transition Programme for special needs students. The implications of the study focus on theories and models related to the study and policies that have a positive and effective impact on researchers other than the readers. In conlusion, the Career Transition Programme should be implemented comprehensively in government and non-government aided schools, especially in the Special Education Integration Program and the cooperation of all parties involved is very important in planning the direction of program implementation effectively also efficiently. Keywords: Transition Program Taxonomy, Career Transition Programme, Special Needs Students Abstrak Mendapat peluang pekerjaan merupakan cabaran paling besar bagi Murid Berkeperluan Khas (MBK) di Malaysia dan transformasi melalui Program Transisi Kerjaya yang dijalankan terbukti berjaya melatih mereka untuk bekerja. Kajian ini berdasarkan dua (2) objektif utama iaitu mengenal pasti tahap Taksonomi Program Transisi dan mengenal pasti hubungan demografi responden dengan tahap Taksonomi Program Transisi ke arah pelaksanaan Program Transisi Kerjaya terhadap Murid Berkeperluan Khas (MBK). Kaedah kuantitatif berbentuk kajian tinjauan menggunakan Teori Ekologi dan Model Taksonomi Program Transisi serta soal selidik diadaptasi daripada Team Planning Tool for Improving Transition Education and Services (Paula D. Kohler). Dapatan kajian menunjukkan tahap skor min yang sangat tinggi dan tinggi mengenai kelima-lima amalan di dalam Taksonomi Program Transisi. Manakala, terdapat hubungan linear (pada tahap sangat tinggi) antara demografi responden dengan Taksonomi Program Transisi. Implikasi kajian berfokus kepada teori dan model yang berkaitan dengan kajian dan polisi yang memberi kesan positif serta berkesan terhadap pengkaji selain daripada para pembaca. Kesimpulannya, Program Transisi Kerjaya wajar dilaksanakan secara menyeluruh di sekolah-sekolah bantuan kerajaan dan bukan kerajaan khususnya dalam Program Pendidikan Khas Integrasi (PPKI) serta kerjasama semua pihak yang terlibat sangat penting dalam merancang hala tuju pelaksanaan program secara efektif serta berkesan. Kata kunci: Taksonomi Program Transisi, Program Transisi Kerjaya, Murid Berkeperluan Khas (MBK)