Resilience intervention improves stress-related gene expression in adolescent and young adult HCT recipients.

BACKGROUND: Overactivation of the stress response can influence cancer outcomes through immune-related pathways. Adolescents and young adults (AYAs) undergoing hematopoietic cell transplantation (HCT) are at risk for poor outcomes, yet there are limited behavioral interventions and no psychosocial biomarker data for this population. The Conserved Transcriptional Response to Adversity (CTRA) is an inflammation-related pattern observed in conditions of heightened stress and is associated with HCT outcomes. OBJECTIVE: The objective of the current study was to explore the CTRA gene regulatory impact of the PRISM intervention among AYAs receiving HCT. We hypothesized that patients who received the intervention would have favorable gene expression signatures compared to those in the control arm. STUDY DESIGN: This was an ancillary study within a randomized trial testing the Promoting Resilience in Stress Management (PRISM) intervention on psychosocial outcomes among AYAs aged 12-24 years receiving HCT (NCT03640325). CTRA was quantified through genome-wide transcriptional profiles obtained from whole blood collected at baseline, 1-, and 3-months post HCT. Group differences in CTRA gene expression were estimated using mixed effect linear models. RESULTS: There were no baseline group differences in CTRA expression, but PRISM participants showed a greater decline in CTRA at 1 month compared to controls (ß -0.301 ± SE 0.114, p = 0.016), even when controlling for demographic (Group x Time interaction: F(2, 18) = 7.41, p = 0.004; ß -0.386 ± 0.127, p = 0.007) and clinical covariates (Group x Time interaction: F(2, 20) = 7.03, p = 0.005; ß -0.480 ± 0.144, p = 0.003). These differences were not detectable at 3 months (ß -0.147 ± SE 0.120, p=0.235). CONCLUSIONS: There was a change in stress-related gene expression among AYAs randomized to a psychosocial intervention. The stress-inflammation axis may be a targetable pathway in the AYA HCT population.

Testicular sperm extraction for fertility preservation in young patients with cancer.

Background: Cancer survivors in the adolescent and young adult generation often experience marriage, pregnancy, and childbirth after treatment; thus, fertility preservation is very important. In male patients, testicular sperm extraction (TESE) is sometimes performed due to azoospermia. Such a procedure is called oncological TESE (onco-TESE). In the present study, we aimed to define onco-TESE as TESE for fertility preservation in cancer patients, including those receiving gonadotoxic treatment. Methods: Seventeen male patients with cancer who had undergone onco-TESE for fertility preservation at Yokohama City University Medical Center between April 2014 and March 2023 were included in the study. Results: Motile testicular sperm were acquired by TESE in 9 out of 17 cases. Among patients who had initiated chemotherapy before surgery, Motile sperm could be acquired by onco-TESE in 3 out of 9 cases. In chemotherapy-naive patients, Motile sperm were acquired by onco-TESE in 6 out of 8 cases. In the end, sperm cryopreservation was performed in 10 patients. Cryopreserved sperm were used in 2 of the 10 cases, and live birth was achieved after intracytoplasmic sperm injection in both cases. Conclusions: Before starting gonadotoxic treatment, it is important to confirm whether the patient desires to bear children. If having a baby is desired, a referral to a reproductive medicine doctor is recommended. Fertility preservation before starting gonadotoxic treatment is preferable, but fertility preservation could be considered even after such a treatment.

A Patient-Centered Conceptual Model of AYA Cancer Survivorship Care Informed by a Qualitative Interview Study.

Purpose: Conceptual models provide frameworks to illustrate relationships among patient-, provider-, system-, and community-level factors that inform care delivery and research. Existing models of cancer survivorship care focus largely on pediatric or adult populations whose needs differ from adolescents and young adults (AYAs). We developed a patient-centered conceptual model of AYA survivorship care. Methods: We conducted a narrative literature review of current conceptual and theoretical models of care. We engaged AYA cancer survivors (n = 25) in semi-structured one-hour telephone interviews. Most participants were in their 20s and 30s, and the majority (84%) were women. Recruitment was stratified by age and time since cancer diagnosis. We conducted a thematic analysis of interview transcripts to identify themes that exemplified patient-centered care. Results: Most participants identified as white and female. Leukemia and breast cancer were the most common cancer types. Main themes included the need for (1) care coordination, (2) ongoing mental health support, (3) connection to AYA peer support, (4) support during fertility preservation efforts, (5) support with financial burden, (6) support for quality of life, (7) information about and support with side effects and late effects, and (8) attention to the unique needs of young adults. Conclusions: We present a patient-centered conceptual model of AYA survivorship care needs that can inform future cancer care delivery and research.

Beyond the battle: A cross-sectional study on cancer-related fatigue and predictors of quality of life in female adolescent and young adult survivors.

OBJECTIVES: The study delves into the intricacies of cancer-related fatigue (CRF), the quality of life (QoL), and other demographic variables of female adolescent and young adult cancer survivors (AYACS) in the landscape of Kerala, India. METHODS: The cross-sectional study included 288 female AYACS who were selected through purposive sampling and completed self-reported questionnaires on CRF, QoL, and demographic and clinical data. Statistical analyses were applied, including correlation, one-way ANOVA, and regression. RESULTS: and discussion: The temporal dimension is particularly interesting, as individuals three to five years post-treatment report heightened CRF and QoL scores. Furthermore, the research unveils the pivotal role played by predictors such as marital status, educational attainment, and employment status in shaping QoL. Marital status and education emerge as positive predictors of well-being. The study unveils compelling insights into AYA cancer survivorship, revealing a profound impact of CRF on the quality of life dimensions. The role of spirituality, sometimes affecting social connectedness, adds intrigue. CONCLUSION: The findings provide insights into the complex world of female AYACS, compelling researchers to ponder the significance of addressing CRF and tailoring rehabilitation systems during the critical post-treatment phase, with recognition of gender-specific challenges.

Evaluation of contraception methods in chronic myeloid leukemia patients: A Turkish multicenter study.

BACKGROUND AND AIM: Chronic myeloid leukemia (CML) incidence has recently increased in younger individuals. With time, given the nature of the disease and available therapies, as well as the existing paucity and inconsistency of advice, worries about fertility have surfaced. With all these clear unknowns, we designed this study to raise awareness among both physicians and CML patients about whether male and female patients of childbearing age were using contraception at the time of diagnosis, and if so, which methods they were using. In this context, this study aimed to evaluate the contraception methods in patients with CML. MATERIALS AND METHODS: Eighteen centres from Turkey participated in the study. Male and female patients of childbearing age diagnosed with chronic and accelerated phase CML between the years 2000 and 2024 were evaluated retrospectively. RESULTS: Of the two hundred and thirty-two patients included, one hundred and twenty-five (53.9%) of these patients were female and 107 (46.1%) were male. At diagnosis, all female patients were in the childbearing age, and male patients were sexually active. The median age at diagnosis of the patients was 38 (range, 18-77) years. Eighty-six (68.8%) female patients were using any contraception method, while this was 53.2% (n = 57) among male patients. CONCLUSION: In conclusion, since CML patients are diagnosed at an earlier age and the desire of these patients to have children, adequate information and evaluation should be provided regarding fertility and contraception issues, especially in female patients, from the moment of diagnosis.

The Ethical Complexity of Medical Decision Making in the Adolescent Oncology Patient.

Adolescent Medical Decision Making (aMDM) is frequently discussed but presents a significant challenge in practice, especially in cases of adolescents with life threatening or life limiting illnesses. In this paper, we present a case that explores the importance of aMDM, the difficulties for providers when engaging adolescents in these discussions, and how certain skills may be incorporated into pediatric practice. Literature suggests that patients of this age group, while being legally without capacity, have meaningful insights into their care. However, unless physicians feel comfortable and competent engaging adolescents in a manner that honors their developmentally appropriate understanding of their illness, these insights can be lost.

Treatment of Medulloblastoma in the Adolescent and Young Adult Population: A Systematic Review.

Medulloblastoma is the most frequent high-grade tumor of the central nervous system in children but accounts for less than 1% of these tumors in adults. Adolescent and young adult (AYA) patients are between both age groups, and different approaches are used to treat medulloblastoma in this population. We performed a systematic review of studies published between 2007 and 2023 that reported treatment approaches and survival data of AYA patients with medulloblastoma, defined as 15 to 39 years of age at diagnosis. Due to the heterogeneity of data, a meta-analysis was not possible. Except for the omission of chemotherapy after radiotherapy in a few adult studies, the treatment backbone is very similar between studies starting enrolment during childhood and older adolescence or adulthood. Despite indications for a higher rate of early treatment termination due to toxicity in adults, survival data remain comparable between studies starting enrolment earlier or later in life. However, molecular subtyping was missing in most studies, so the survival data must be interpreted cautiously. Nevertheless, pediatric-inspired strategies in the AYA population are feasible, but individual dose adjustments may be necessary during treatment and should be considered upfront. Collaborative studies investigating the best treatment approach for medulloblastoma in the AYA population are needed in the future.

Temporal trends of adolescents and young adults (AYA) with gynecologic malignancy in the United States.

In this retrospective cohort study examining 13,763,447 patients with 16 different malignancies, including 1,232,841 patients with five gynecologic malignancies (uterus [n = 690,590], ovary [n = 276,812], cervix [n = 166,779], vulva [n = 81,575], and vagina [n = 17,085]), identified in the Commission-on-Cancer's National Cancer Database from 2004 to 2020, cervical cancer (25.3 %) had the highest rate of adolescent and young adult (AYA) patients among 27 gender-stratified cancer groups (25.3%). There were 8 groups that the annual rates of AYA patients statistically increased during the study period at a P < .05 level, of which 7 (87.5 %) groups were for female malignancies. Among these 7 female malignancies, the annual percentage rate increase in AYA patients was largest for colorectal cancer (4.1 %, 95 % confidence interval 3.6-4.6), followed by malignancies in the ovary (3.1 %, 95 % confidence interval 1.6-4.5 in 2014-2020), pancreas (2.1 %, 95 % confidence interval 1.0-3.2), uterus (1.2 %, 95 % confidence interval 0.3-2.0 in 2013-2020), breast (0.8 %, 95 % confidence interval 0.2-1.4 in 2012-2020), cervix (0.8 %, 95 % confidence interval 0.2-1.5 in 2011-2020), and kidney (0.4 %, 95 % confidence interval 0.1-0.9). In conclusion, these data suggested that proportion of cancers attributable to AYA patients is increasing in several obesity-related female malignancies and in the three most common gynecologic malignancies.

Policy brief of the Belgian Europe's Beating Cancer Plan mirror group: children, adolescents and young adults with cancer.

Children and Adolescents and Young Adults with cancer represent a young population with specific needs, which need to be addressed in a patient- and cancer-driven way. There is an urgent need to support and extend the ongoing initiatives in Belgium. First, multidisciplinary care programmes dedicated to children need to be reviewed, and those for Adolescents and Young Adults need to be developed with close collaboration between paediatric and adult oncology and haematology teams. This needs to be done considering the entire patient journey; from cancer prevention, diagnosis, treatment, rehabilitation, follow-up of late effects, transition pathways between paediatric and adult wards, and palliative care. Second, national haemato/oncology precision programmes adapted to this young population with rare cancers, including infrastructure to manage cancer gene predisposition in CAYAs with cancers and their relatives, needs to be developed. This multi-level plan aims to ensure improved outcome with high quality of care for the young population with cancer in Belgium in line with Europe's Beating Cancer Plan initiatives.

Smartphone-based distress screening, information provision, and psychotherapy for reducing psychological distress among AYA cancer survivors: protocol for a fully decentralized multicenter randomized controlled clinical trial.

Fear of cancer recurrence (FCR) is a common and distressing condition among adolescents and young adults (AYAs). This study aims to investigate the efficacy of digital interventions, including distress screening-based information provision and smartphone problem-solving therapy, on common psychological distress, especially FCR, in AYA patients with cancer. Participants will be 224 AYA outpatients with cancer aged 15-39 years who will be randomly assigned to either an 8-week smartphone-based intervention or a waitlist control group. This intervention includes smartphone-based distress screening, information provision, and psychotherapy (problem-solving therapy). The primary endpoint will be the Fear of Cancer Recurrence Inventory-Short Form score at week 8. This study will be conducted as a fully decentralized, randomized, and multicenter trial. The study protocol was approved by the Institutional Review Board of Nagoya City University on 19 April 2024 (ID: 46-23-0005). Trial registration: UMIN-CTR: UMIN000054583.

Addressing Post-Pandemic Adolescent Health in Schools.

The coronavirus disease 2019 pandemic disrupted in-person learning for adolescents and young adults across the world. Inequities in learning outcomes were primarily caused by digital inequalities. Social needs of adolescent and young adult (AYA) emerged during the pandemic and school is a key part of supporting AYA social health. School-based health clinics can serve as a method to improve mental and physical health outcomes for AYA.

Helping adolescents and young adults (AYA) with cancer manage identity distress: Enhancing clinician-AYA patient communication to promote identity development.

OBJECTIVE: A cancer diagnosis during adolescence and young adulthood (AYA) disrupts AYAs' identity formation, a critical task for healthy development, and contributes to psychological distress called identity distress. Clinical communication is central to promoting AYAs' healthy identity development. We sought to identify aspects of clinician-diagnosed AYA communication that can promote AYAs' identity development and potentially buffer them from distress. METHODS: In-depth, semi-structured interviews were conducted with two groups (AYA oncology clinicians and diagnosed AYAs). Transcripts were thematically analyzed to capture communication that clinicians and AYAs perceive promotes AYAs' identity development and buffers related distress. RESULTS: Fourteen diagnosed AYAs and 7 clinicians identified three clinician- or AYA-led communication approaches and associated strategies that they perceive can buffer identity distress and promote identity development: 1) clinicians' using person-centered communication (e.g., empathic communication); 2) promoting AYAs' control/self-management of care (e.g., not dictating AYAs' behavior); and 3) prioritizing/seeing the person behind the patient (e.g., knowing the AYA as a person). CONCLUSION/PRACTICE IMPLICATIONS: Both AYA oncology clinicians and diagnosed AYAs can communicate in ways that protect AYAs' identity development and related psychological well-being. Findings can be implemented into targeted communication skills interventions to teach health-promoting behavior and augment AYAs' psychosocial oncology care.

Feasibility and Clinical Utility of Patient-Reported Outcome Measurement Information System-29 in a Newly Established Adolescent and Young Adult Oncology Program.

Purpose: Despite improvements in survival, adolescent and young adult (AYA) oncology patients are at high risk for experiencing negative health-related quality of life (HRQOL) outcomes. AYA cancer programs have attempted to develop assessment tools to identify areas of need. We aimed to demonstrate the feasibility/utility of the Patient-Reported Outcome Measurement Information System®-29 (PROMIS®-29) within an AYA oncology program clinic. Methods: AYA patients were referred by oncologists to the AYA oncology program at Prisma Health. The PROMIS-29 v2.0 survey was administered to AYAs at point of care. Feasibility of distribution and completion rate of surveys were determined. PROMIS surveys were self-reported and subsequently scored using standardized methods. The domains assessed included physical function, anxiety, depression, fatigue, sleep disturbance, ability to participate in social roles/activities, pain interference, and pain intensity. Qualitative descriptions of AYA care delivery based on survey responses at the patient level and programmatic level are also presented. Results: Between May 2017 and 2019, 134 AYAs who were newly diagnosed or in treatment completed the survey. Distribution and completion rates for the PROMIS-29 were both 100%, and meaningful changes in program-level services were implemented as a result of PROMIS-29 score patterns. Within the entire cohort, T-scores for anxiety, fatigue, and physical function reached clinically relevant thresholds. Conclusion: PROMIS offers a feasible opportunity for AYA programs to measure clinically useful HRQOL outcomes in AYAs. The survey can be used to deliver real-time AYA care to recently diagnosed and in-treatment AYAs and make programmatic changes within AYA oncology programs.

Communicating Adolescent and Young Adult Oncology Treatment Guidelines in Practice: The Importance of Documentation for Ensuring Positive Impacts on Oncology Care.

Purpose: Improvements in outcomes for adolescent and young adult (AYA) oncology patients have lagged behind those of other age-specific cancer populations. Research has indicated that low availability of clinical trials, biological differences of this age-group, and several psychosocial factors including higher emotional distress impact outcomes. To improve care and survival rates for these patients, hospitals have implemented AYA oncology programs. The current study evaluated documentation of care in an AYA program housed in an academic medical center based on three areas emphasized in the National Comprehensive Cancer Network's Clinical Practice Guidelines in Oncology for AYAs: clinical trial enrollment, fertility, and psychosocial care. Methods: Retrospective chart reviews were conducted for 45 patients treated before the start of the AYA oncology program and 45 patients treated after program initiation. Patients aged 15-39 years with a diagnosis of a malignant tumor were included. Variables evaluated included documentation of clinical trial enrollment, fertility preservation and sexual health considerations, and behavioral health referrals. Results: Documentation of most clinical trial and fertility variables did not significantly improve from pre- to post-program, although a higher number of patients had these variables documented post-program. Behavioral health referrals increased significantly from 52.8% pre-program to 95.4% post-program. Conclusion: Access to behavioral health care improved the most following implementation of our AYA program, which is likely because of the integration of a dedicated psychologist for AYAs when the program began. The practice of guideline-based care for this population can be better assessed and improved with designated behavioral health providers and more systematic documentation processes.

Improving Transition of Care for Pediatric Patients With Chronic Kidney Disease: A Pilot Project.

Introduction Transition is the process of preparing an adolescent or young adult for the adult model of care. Poor transitions have been linked to increased medical utilization and poorer kidney outcomes. There are limited studies evaluating predictors of transition readiness or interventions in pediatric patients with chronic kidney disease (CKD). Methods We enrolled 42 non-dialysis, non-transplant patients with CKD stage 2 or higher and 14 years and older receiving care in our pediatric nephrology clinic. Data collected included demographics, clinical information, and transition readiness as measured by the Transition Readiness Assessment Questionnaire (TRAQ). Patients were provided with a structured, remote curriculum with resources that addressed areas of need. Patients were followed every three to six months. Repeat TRAQ questionnaires were administered six months after enrollment. Results Our study found that younger age and male gender were risk factors for poor transition. Age was consistently a positive predictor of higher TRAQ scores in the medication, appointment, and total score domains (p < 0.05). Male gender was a risk factor for lower TRAQ scores in the appointment and communication domains (p < 0.05). Additionally, our curriculum was effective at improving scores across all TRAQ domains, with an average increase of about 25% in six months. There was no difference in patients who had a three-month follow-up as compared to a six-month follow-up (p > 0.05). Conclusion Our study finds that younger age and male gender are risk factors for poor transition. Additionally, a structured, remote curriculum is effective at improving transition readiness.

Effect of group online-based peer support intervention on psychological distress of adolescent and young adult cancer patients: a randomized controlled trial.

PURPOSE: Adolescent and young adult (AYA) cancer patients, aged between 15 to 39 years old, suffer from long-term psychological distress, confronting low self-efficacy and various psychological problems. This study constructs a group online-based peer support intervention combined with offline activities to explore its impact on the psychological distress of AYA cancer patients. METHODS: A randomized, two-arm clinical trial was conducted in which 90 AYA cancer patients were recruited. The control group (N = 45) received conventional psychological care and treatment, and the experimental group (N = 45) received 8 weeks of an online peer support intervention. Outcome measures included psychological distress (Distress Thermometer, DT), anxiety and depression (Hospital Anxiety and Depression Scale, HADS), perceived peer support (Cancer Peer Support Scales, CaPSS), and readiness for return to work (Readiness to Return-To-Work Scale, RRTW). RESULTS: Eight-week peer support intervention was effective in improving psychological distress, anxiety, and depressive symptoms in the experimental group with statistically significant differences (P < 0.05). Time affected psychological distress, anxiety, and depressive symptoms in AYA cancer patients (P < 0.05), and there was an interaction with intervention factors (P < 0.05). The intervention has a positive effect on relieving the psychological status of AYA cancer patients. For readiness for return to work, the experimental group was in the preparation for the action-behavioral stage immediately, 1 month and 3 months after the end of the intervention (P < 0.01), supporting AYA cancer patients who have not returned to work to maintain optimal return-to-work readiness. CONCLUSIONS: The group online-based peer support intervention is popular and has good scientificity, effectiveness, and practical significance for AYA cancer patients. TRIAL REGISTRATION: This study was registered at clinicaltrials.gov. (ChiCTR2100053091, registered on 10 November 2021).

Spanish adolescent patients with cancer and main caregivers: Using perceptions of care to drive change in healthcare.

PURPOSE: To determine whether there are differences in care experience of adolescent cancer patients and their main caregiver, treated in Adolescent Cancer Units (ACUs), compared to those treated in Non-Adolescent Cancer Units (NACUs), including the COVID-19 pandemic period. METHOD: Measurement of Reported Experience in adolescent oncology patients (12-19 years old) and caregivers through ad hoc surveys. The responses of the study group of patients and caregivers treated in Adolescent Units were compared with the group not treated in them. RESULTS: It is noted that many respondents consider that they have not been affected by the COVID-19 pandemic. Significant differences were seen in communication, with better perception by the group of patients treated in ACU (87.1%) and caregivers of ACU (97.3%) compared to patients and caregivers of NACU (53.3% and 68.2% respectively). Regarding information received about the side effects, a better perception was observed among patients treated in the ACU than in the NACU (p=0.247). In the transmission of information and the possibility of fertility preservation, a significant difference was observed in favour of ACU in patients and direct caregivers (p=0.010 and p=0.018). CONCLUSIONS: ACU represents an improvement in the quality perceived by patients and main caregiver on key points in the comprehensive care of the adolescent with cancer such as information, participation in the process and decision making, approach to side effects, psychological care and help in returning to normal life. However, fertility and strategies for talking about the cancer experience, were identified as areas for future improvement.

Disparities in the Occurrence of Long-Term Effects of Bone Marrow Suppression after Treatment in Adolescent Young Adult Breast Cancer Survivors.

BACKGROUND: Many adolescent and young adult (AYA) patients with breast cancer (BC) receive adjuvant therapy as initial treatment, with long-term bone marrow suppression as a potential complication, but no studies have evaluated the impact of race/ethnicity on the development of bone marrow suppression in AYA BC survivors. PATIENTS AND METHODS: Female patients ages 15-39 years diagnosed with BC (2006-2018) and surviving ≥ 2 years were identified from the California Cancer Registry and linked to statewide hospitalization data. We estimated the cumulative incidence of developing late effects of bone marrow suppression, such as leukopenia, anemia, thrombocytopenia, bleeding, and infection/sepsis, during hospital discharge diagnoses present ≥ 2 years after diagnosis. We examined the impact of sociodemographic and clinical factors on late effects using multivariate Cox proportional hazards regression. RESULTS: Of 11,293 patients, 42.8% were non-Hispanic (nH) White, 28.8% Hispanic, 19.5% nH Asian/Pacific Islander, and 7.5% nH Black. In multivariable analyses, nH Blacks had the highest risk (versus nH Whites) of anemia [hazard ratio (HR) 1.72, 95% confidence interval (CI) 1.47-2.02], leukopenia (HR 1.56, CI 1.14-2.13), thrombocytopenia (HR 1.46, CI 1.08-1.99), major infection/sepsis (HR 1.64, CI 1.4-1.92), and bleeding (HR 1.89, CI 1.39-2.58). Hispanics had a higher risk of developing anemia (HR 1.17, CI 1.04-1.32), bleeding (HR 1.4, CI 1.12-1.76), and major infections/sepsis (HR 1.36, CI 1.21-1.52). Asian/Pacific Islanders had only a higher risk of developing bleeding (HR 1.33, CI 1.03-1.72). Patients from a low neighborhood socioeconomic status had a 20% higher risk of infection/sepsis (HR 1.21, CI 1.1-1.34), but there were no associations for the other late effects. CONCLUSIONS: We identified that AYAs of nH Black, Hispanic, and Asian/Pacific Islander race/ethnicity are at an increased risk of several late effects after adjuvant therapy compared with nH White patients. From these data, providers can implement early/frequent screening of hematologic late effects in these high-risk survivors.

The TRUST Study-TRansition US Together: Evaluating the Impact of a Parent- and Adolescent-Centered Transition Toolkit on Transition Readiness in Patients with Juvenile Idiopathic Arthritis and Childhood-Onset Systemic Lupus Erythematosus.

OBJECTIVE: Adolescents with chronic rheumatic disease must increasingly take on more responsibility for disease management from parents as they transition from pediatric to adult care. Yet, there are limited resources to inform and support parents about transition. Here, we evaluate the impact of a Transition Toolkit, geared towards parents and adolescents, on transition readiness, and explore the potential impact of parent-adolescent communication. METHODS: A prospective cohort study of youths aged 14-18 years old and their parents was performed. Participant demographics, disease characteristics, transition readiness scores (Transition-Q, max 100), and parent-adolescent communication scores (PACS, max 100) were collected at enrollment (when the Transition Toolkit was shared with adolescents and their parents. Generalized estimating equation (GEE) analyses determined the influence of the Toolkit on transition readiness and explored the role of parent-adolescent communication quality. Subgroup analyses were conducted by sex. RESULTS: A total of 21 patients were included; 19 completed one post-intervention Transition-Q and 16 completed two. Transition-Q scores increased over time and the rate of increase doubled after the Toolkit was shared (ß = 7.8, p < 0.05, and ß = 15.5, p < 0.05, respectively). CONCLUSION: Transition readiness improved at each follow-up, the greatest increase was seen after the Toolkit was shared. Parent-adolescent communication quality did not appear to impact changes in transition readiness.