Transition Readiness In Adolescents Research Articles

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.

Transition readiness in adolescents and young adults with chronic genetic skin conditions.

Healthcare transition (HCT) refers to movement from pediatric to adult healthcare models. Lack of HCT preparation contributes to poor health outcomes. This study measures readiness to transition in individuals with genetic skin conditions. Participants signed IRB-approved consents/assents. Participants ages 14-22 years with genetic skin disorders were surveyed with measures of QoL (Children's Dermatology Life Quality Index/CDLQI or DLQI) and HCT readiness using the Transition Readiness Assessment Questionnaire (TRAQ) and adapted non-validated measures of Skin Knowledge and Psychosocial Factors (5 = highest readiness). Mean TRAQ was compared with historical data on controls and other chronic conditions (t-tests) and correlated (Pearson) with Skin Knowledge and Psychosocial. Multivariable regression compared demographics and QoL with transition readiness. A total of 45 participants were enrolled (mean age 17.8 years, 67% female, 71% White; disorders of cornification [n = 31], ectodermal dysplasias [n = 7], epidermolysis bullosa [n = 4], tuberous sclerosis [n = 3]). Mean TRAQ (3.3 ± 0.9) was lower than controls (3.9; p < .001) and some chronic disorders (sickle cell [3.7; p < .05], type 1 diabetes [3.7; p < .01]), but higher than with spina bifida (2.8; p < .001) and congenital heart disease (2.9; p < .01). Mean Skin Knowledge was 4.2 ± 1.0, and mean Psychosocial was 3.4 ± 0.8. TRAQ correlated strongly with Skin Knowledge (r = .61; p < .05), but not Psychosocial (r = .12; p = .6). Ages 14-17 years versus 18-22 years and public versus private insurance predicted lower TRAQ scores. Poor DLQI predicted higher TRAQ and Skin Knowledge, but poor DLQI and CDLQI predicted lower Psychosocial. Adolescents and young adults with genetic skin disorders demonstrated low transition readiness, especially among younger-aged and lower socioeconomic groups. We recommend a HCT intervention to improve health outcomes.

Transition Readiness in Adolescents and Young Adults Living With Congenital Adrenal Hyperplasia

ObjectiveCongenital adrenal hyperplasia (CAH) refers to a group of genetic disorders that affect cortisol biosynthesis and the need for glucocorticoid treatment is lifelong. The complexities of CAH can greatly affect teenage life and the transition from pediatric to adult care. The aim was to assess transition readiness and the impact on quality of life (QoL) as well as medication adherence rates in adolescents and young adults with CAH. MethodsProspective assessment of transition readiness was conducted through standardized questionnaires for adolescents and young adults (aged 16-35 years). Four open-ended questions on self-care were summarized in adolescents (aged 18-19 years) and their parents. Transition readiness was assessed using a modified CAH specific questionnaire: “Transition preparation and readiness to transfer from pediatric to adult care” with a cutoff level of >25 defined as good transition readiness. Measurement of QoL was performed using Rand 36. Medication adherence rate was measured using the self-reported questionnaire Adherence Starts with Knowledge. ResultsThirty-eight adolescents and young adults with CAH were included in the study. Transition readiness was classified as good in 26 (68%) of the participants. Good transition readiness was more frequent in participants with good medication adherence rates. A general linear model analysis showed a good transition readiness affected QoL by increasing QoL scores. ConclusionSelf-reported transition readiness was found in the majority of adolescents and young adults with CAH. A good medication adherence rate was associated with a better transition readiness and a good transition readiness was associated with increased QoL scores.

Transition readiness in middle and older adolescents with asthma and associated factors: a descriptive study

Objective Asthma is the leading chronic health condition in adolescents, yet little is known about adolescents’ readiness to transition into adult-focused care. This study examines transition readiness in middle and late adolescents with asthma. Methods This cross-sectional descriptive study was conducted in 2019 with 41 adolescents (16–20 years old) with asthma. Transition readiness was measured with the 20-item Transition Readiness Assessment Questionnaire (TRAQ), which comprises five subscales. Results Slight majorities of the sample comprised females (58.5%) and minority adolescents (56%). The sample’s overall mean score on the TRAQ was 3.89 (±0.63; possible range 1–5). Managing daily activities was associated with talking with providers subscale (r = 0.36; p < 0.01), but not with other TRAQ subscales. Females reported greater scores for managing medications than did males, with mean = 4.2 vs. 3.6 (t = −2.15, p = 0.04). Transition readiness did not differ by race or health insurance type. However, scores on arranging transportation to medical appointments were lower among minority adolescents than whites (4.17 vs. 4.8, t = 2.56, p = 0.01). Better asthma control was associated with higher scores on talking with providers (r = –0.42; p < 0.01), but not with other subscale domains. Conclusions Overall transition readiness is suboptimal in middle to late adolescents with asthma. Adolescents’ capacity to manage daily activities is not a valid indicator of transition readiness in disease self-management. It is important to consider gender, race, and asthma control in understanding transition readiness in adolescents with asthma.

Transition readiness in adolescents and young adults with chronic rheumatic disease in Oman: today\u2019s needs and future challenges

IntroductionIn Oman, 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.MethodsWe used a professionally translated/back translated, provider-administered UNC TRxANSITION Scale. This 32-question scale measures HCT in 10 domains including knowledge about diagnosis or treatment, diet, reproductive health, school/work, insurance, ability to self-manage and identification of 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.ResultsWe 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).ConclusionOverall, 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 transfer and transition policies to be in line to international recommendations.As transition continues after transfer, and is preferably guided by adolescent developmental status rather than chronological age, it would be preferable to refer to the transition and transfer policies 9rather than transitional age policy) to be in line to international recommendations.

Protocol for READY2Exit: a patient-oriented, mixed methods study examining transition readiness in adolescents with co-occurring physical and mental health conditions

AbstractBackgroundUp to 57% of adolescents and young adults (AYA) with chronic physical health conditions experience mental health conditions, the presence of which contributes to increased morbidity and poor quality of life. AYA with co-occurring physical and mental health conditions, therefore, may experience additional challenges as they transition from pediatric to adult services. While transition readiness – the acquisition of self-management and advocacy skills – contributes to successful transitions to adult care, this concept has not been adequately explored for AYA with co-occurring physical and mental health conditions. Research is needed to identify whether the presence of a mental health comorbidity is associated with transition readiness, and what the experiences of AYA with co-occurring conditions are as they exit pediatric services. This paper outlines the protocol for theReadiness andExperiences ofADolescents andYoung Adults with Co-occurring Physical and Mental Health ConditionsExiting Pediatric Services (READY2Exit) study; the first study to address this gap using a patient-oriented, mixed methods design.MethodsA sequential explanatory mixed methods design will be used to understand the transition readiness of 16–21 year olds with physical and mental health conditions using quantitative and qualitative data. First, Transition Readiness Assessment Questionnaire (TRAQ) scores will be compared among AYA with chronic health conditions, with and without mental health comorbidity. Interviews will then be conducted with approximately 15 AYA with co-occurring health and mental health conditions and analyzed using qualitative description. The READY2Exit study will be conducted in collaboration with five Young Adult Research Partners (YARP) aged 18–30 with lived experience in the health/mental health systems across Canada. The YARP will partner in key tasks such as interview guide co-design, data interpretation, and knowledge translation tool development.DiscussionAYA with co-occurring physical and mental health conditions may have unique needs as they prepare for health care transitions. The results of this study will inform the refinement of transition readiness practices to improve care for this group. The active involvement of the YARP across study phases will bring the critical perspectives of young adults to READY2Exit, ensuring the methods, research approaches and outputs align with their needs.

Assessment of Transition Readiness in Adolescents with Epilepsy in China: A Cross-Sectional Study

Assessment of Transition Readiness in Adolescents with Epilepsy in China: A Cross-Sectional Study

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

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. 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. 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. Transition readiness of JIA patients increases with advancing age. There is no significant difference between transition readiness for JIA patients and their parents.

Measuring transition readiness in adolescents and young adults with sickle cell disease using the transition readiness assessment questionnaire.

Adolescents and young adults (AYA) with sickle cell disease (SCD) face challenges related to the disease and its treatment. The Transition Readiness Assessment Questionnaire (TRAQ) is a self-report tool for assessing transition readiness for youth with special health care needs (YSHCN), including SCD. This study uses the TRAQ to understand transition readiness in patients with SCD treated at the Boston Medical Center and evaluates associations between TRAQ scores and transition outcomes (e.g., emergency department reliance [EDr] and emergency department utilization [EDu]). We reviewed electronic medical records of AYA with SCD who completed the TRAQ in the pediatric hematology clinic between January 1, 2019, and March 1, 2020, and categorized healthcare encounters to calculate EDu and EDr.We used t tests and ANOVA models to analyze mean TRAQ scores, sex, age, genotype, EDu, and EDr. The sample was 45 AYA patients with SCD between 13 and 22 years old. The mean TRAQ score for the overall patient sample was 3.67. Mean TRAQ scores did not significantly vary by sex or genotype but did significantly increase with age. TRAQ scores did not correlate to EDu or EDr. AYA patients with SCD have low transition readiness. The age of 18 may not be the most reliable attribute of readiness, though older patients do have higher readiness. The relationship between TRAQ scores, EDr, and EDu is not clear and requires further evaluation.

Assessment of Health Literacy and Self-reported Readiness for Transition to Adult Care Among Adolescents and Young Adults With Spina Bifida

Health literacy has been shown to play an important role in transitions of care in adult populations, with low health literacy associated with adverse health outcomes. The role of health literacy in the transition from pediatric to adult care has been less well studied. Among adolescents and young adults with spina bifida, high rates of unsuccessful transition have been shown, but how patient health literacy affects transition readiness remains unknown. To determine whether health literacy is associated with transition readiness in adolescents and young adults with spina bifida. This cross-sectional study involved collection of patient-reported questionnaires between June 2019 and March 2020 at a multidisciplinary spina bifida center at a single, free-standing children's hospital. Patient demographic and clinical characteristics were obtained from medical record review. Patients were aged 12 years or older with a diagnosis of spina bifida (myelomeningocele and nonmyelomeningocele) whose primary language was English or Spanish. Data analysis was performed from October 2020 to March 2021. Health literacy as assessed by the Brief Health Literacy Screening Tool. The primary outcome was total Transition Readiness Assessment Questionnaire (TRAQ) score, normalized into units of SD. Nested, multivariable linear regression models assessed the association between health literacy and TRAQ scores. The TRAQ and Brief Health Literacy Screening Tool were completed by 200 individuals (median [range] age, 17.0 [12.0-31.0] years; 104 female participants [52.0%]). Most of the patients were younger than 18 years (110 participants [55.0%]) and White (136 participants [68.0%]) and had myelomeningocele (125 participants [62.5%]). The mean (SD) TRAQ score was 3.3 (1.1). Sixty-six participants (33.0%) reported inadequate health literacy, 60 participants (30.0%) reported marginal health literacy, and 74 participants (37.0%) reported adequate health literacy. In univariable analysis, health literacy, age, type of spina bifida, level of education, self-administration vs completion of the questionnaires with assistance, ambulatory status, and urinary incontinence were associated with total TRAQ score. In all nested, sequentially adjusted, multivariable models, higher health literacy remained a significant, stepwise, independent variable associated with higher TRAQ score. In the fully adjusted model, having adequate compared with inadequate health literacy was associated with an increase in normalized TRAQ score of 0.49 SD (95% CI, 0.19-0.79). Patient-reported transition readiness is associated with health literacy, even after adjustment for education level and other demographic and clinical factors. Developing and implementing health literacy-sensitive care programs during the transition process may improve patient transition readiness.

Assessment of transition readiness in adolescents in Thailand with rheumatic diseases: a cross-sectional study

BackgroundMost childhood-onset rheumatic diseases are chronic health conditions, which need long-term care throughout adulthood. A well-organized transition care is challenging and patient assessment of transition skills is needed for transfer preparation to an adult care setting. The Transition Readiness Assessment Questionnaire (TRAQ) is used to assess transition skills in chronically ill patients. Currently, limited transition skill assessment data exist in pediatric patients with rheumatic diseases, especially in Asian countries. This study aimed to determine the transition readiness skills in patients with rheumatic diseases and ascertain predictive factors contributing to high transition readiness skills.MethodsThis is a cross-sectional study. All patients with rheumatic diseases aged 15–20 years were recruited. The TRAQ was cross-culturally adapted into the Thai language with good internal consistency and reliability. Patients completed the Thai TRAQ at the recent clinic visit and took the retest at a 2-week interval. Demographic data, baseline characteristics, clinical manifestations, and disease status were collected. Descriptive and logistic regression analyses were performed.ResultsA total of 111 patients with a mean age of 17.4 ± 1.8 years were included. Median (IQR) disease duration was 6.4 (3.2–9.0) years. The most common rheumatic disease was juvenile idiopathic arthritis (48.6%), followed by systemic lupus erythematosus (35.1%). The mean TRAQ score was 3.85 ± 0.69. Independent visits (OR 4.35, 95% CI 1.23–15.37) was a predictor of a high TRAQ score. Furthermore, dependent visits (OR 7.84, 95% CI 2.41–25.50) was a predictor of low TRAQ score in the “appointment keeping” domain, whereas inactive disease (OR 4.54, 95% CI 1.25–16.55) was a predictor of a low TRAQ score in “tracking health issues” domain. Lack of knowledge and skills on health insurance coverage, financial management, appointment arrangement, and coping with their illness were issues causing lower TRAQ score.ConclusionsPatients, who had independent visits, had a higher chance to obtain higher TRAQ scores, whereas patients, who had an inactive disease or dependent visits, had less transition readiness skills. Physicians and parents should prepare to transfer patients to adult care settings, mainly encouraging independent living skills.

Developing a Problem-Solving Intervention to Address Methods of Self-Management and Transition Challenges in Adolescents with Sickle Cell Disease: A Qualitative Investigation

Introduction: Given recent advances in medical care for children with Sickle Cell Disease (SCD), families are now seeing their children survive into adulthood. This presents new challenges around transition from pediatric to adult medical care, with responsibility for self-management shifting from parent to child. Interventions to improve self-management skills, such as problem solving education (PSE), have been used to increase self-efficacy and medication adherence in youth with other chronic diseases. The present study sought to explore common barriers and facilitators of disease management during the transition period and the acceptability of adapting PSE to improve transition readiness in adolescents with SCD.Methods: We purposively sampled adolescents with SCD ages 13 to 18 who received care at either Boston Medical Center (BMC) or Boston Children's Hospital and their primary caregiver to participate in focus groups. Each focus group was audio recorded and transcribed. Data were analyzed through use of grounded theory and coded with NVivo, a qualitative analysis software. Transcripts were double-coded until thematic saturation was achieved.Results: A total of 17 adolescents and 15 adult caregivers participated in five focus groups. Groups initially met together to discuss barriers and facilitators of self-management and then split into separate groups of teens and parents to discuss PSE. Teens and parents identified common methods of disease management includingtaking medication, staying warm and dressing appropriately, maintaining hydration and a healthy diet, and staying rested. Teens identified having a daily routine and sharing responsibility with a caregiver as facilitators of self-management. Caregivers commonly mentioned using a set of reminder techniques to help teens manage their health. Barriers to increasing teens' self-management included wanting to fit in with peers and lacking appropriate knowledge. Parents found it challenging to allow teens more responsibility.Parents and teens unanimously approved the adaption of PSE to SCD management and transition. Though a small number of parents stated low interest in participating either for social reasons or lack of perceived need, many identified the potential benefits of the intervention for both parents and teens. Parents felt that educational support would be most beneficial to them, while teens prioritized the benefits of emotional support during the transition period. Most participants would prefer that parents and teens meet separately in a group setting at the hospital or a comfortable environment outside of the home, then join together for a final session. Groups would be held on a weekly basis for a minimum of two months. However, some participants felt the support was imperative and thus could be effective for a year. Participants favored a mentor-style structure where a knowledgeable, college-aged individual with sickle cell disease would serve as the interventionist. This appeared to be a common preference for both parents and teens as they felt it was important to work with an individual that excelled independently and academically, despite any challenges with SCD.Parents and teens willingly identified specific scenarios where they felt PSE would be most valuable. Common PSE scenarios for teens were related to disclosing the diagnosis to peers, enhancing methods of management, and addressing identified barriers to transitioning. PSE scenarios for parents involved working with healthcare and school systems on select adaption issues and learning to “let go” of their teen.Conclusion: Though parents and teens have adapted management techniques to facilitate their transition from pediatric to adult medical care, barriers still exist across medical, personal and educational environments. Applying PSE as an intervention for both parents and teens of a sickle cell population could improve self-management and transition readiness in this vulnerable population. DisclosuresNo relevant conflicts of interest to declare.

Development and validation of the RACER (Readiness for Adult Care in Rheumatology) transition instrument in youth with juvenile idiopathic arthritis

BackgroundCurrent evidence suggests that many adolescents with juvenile idiopathic arthritis (JIA) do not successfully transfer to adult care, which can result in adverse health outcomes. Although a growing number of clinical programs have been designed to support healthcare transition, there is a lack of psychometrically sound instruments to evaluate their impact on development of transition-related knowledge and skills in youth with JIA. The purpose of this study was to develop and validate RACER (Readiness for Adult Care in Rheumatology), a self-administered instrument designed to measure stages of readiness for key transition-related skills in adolescents with JIA.MethodsA phased approach was used to develop and evaluate the validity and reliability of RACER. Phase 1 A was a consensus conference with 19 key stakeholders to inform instrument domains and items. Phase 1B determined initial content validity using a sample of 30 adolescents with JIA and 15 clinical and research experts. Finally, Phase 2 was a prospective cohort study with repeated measures to evaluate the internal consistency, test-retest reliability, construct validity and responsiveness of the instrument within a sample of adolescents with JIA.ResultsIn Phase 1 A, initial item generation yielded a total of 242 items across six domains from the consensus conference, which was subsequently reduced to a 32-item instrument. Phase 1B established the content validity of the instrument in adolescents with JIA. In the Phase 2 study, with a sample of 96 adolescents, the RACER instrument exhibited good internal consistency in five of its six subscales (Cronbach’s α > 0.7), and strong test-retest reliability between the first two administrations (ICC = 0.83). It also showed robust convergent validity by highly correlating with measures of self-management (SMSAG, rho = 0.73) and transition (TRANSITION-Q, rho = 0.76). The RACER was not correlated with unrelated measures (discriminant validity; PedsQL, rho = 0.14). The RACER scores increased significantly over time as expected, supporting measure responsiveness.ConclusionsThe RACER is a reliable and valid instrument which is sensitive to change for assessing transition readiness in adolescents with JIA.

The Utility of Self-Determination Theory in Predicting Transition Readiness in Adolescents With Special Healthcare Needs

PurposeAdolescents and young adults with chronic health conditions must learn skills to successfully manage their health as they prepare to transition into adult-based care. Self-determination theory (SDT), an empirically based theory of human motivation, posits that competence (feeling effective), autonomy (volition to perform behaviors), and relatedness (support for autonomy from others) influence behavioral change. This study evaluates the utility of SDT constructs in predicting transition readiness among adolescents and young adults recruited into an intervention to promote successful healthcare transition. MethodsBaseline assessments were completed by 137 patients aged 17–23 years recruited from pediatric renal, gastroenterology, or rheumatology clinical services. Surveys measured transition readiness (Transition Readiness Assessment Questionnaire) as well as SDT constructs, including competence (Patient Activation Measure); provider relatedness and parent autonomy support (Health Care Climate Questionnaire); and health care–related autonomy (Treatment Self-Regulation Questionnaire). Relationships between SDT constructs and transition readiness were evaluated using linear regression. ResultsBetween 44 and 48 participants were recruited from each service. Bivariate correlation coefficients between transition readiness and SDT constructs were competence (r = .44), autonomous autonomy (r = .34), controlled autonomy (r = .27), provider relatedness (r = .46), and parental autonomy support (r = .35) (p < .01). Age positively correlated with transition readiness (r = .47, p < .001). After controlling for age, gender, and clinical service, competence (p < .001) and provider relatedness (p = .008) successfully predicted transition readiness (R2 = .423; F change; p < .001). ConclusionsFindings from this cross-sectional study support the utility of SDT constructs in promoting transition readiness among adolescents and young adults with chronic conditions, underscoring the importance of building competence and provider support for autonomy during this critical period.

Transition Readiness in Adolescents With Juvenile Idiopathic Arthritis and Childhood-Onset Systemic Lupus Erythematosus.

ObjectiveThe transition from pediatric to adult rheumatology care represents a particularly vulnerable time for patients with juvenile idiopathic arthritis (JIA) and childhood‐onset systemic lupus erythematosus (cSLE). Improving self‐management skills is important in optimizing health care transition. The study’s objectives were to 1) examine variability in transition readiness of adolescents and young adults within and between different ages, sexes, and disease types; 2) determine the association between age and transition readiness; and 3) identify specific challenges to transition readiness for adolescents.MethodsOver 1 year, patients 14 to 20 years of age with JIA or cSLE were recruited from pediatric transition and young adult clinics at a single academic institution. Participants completed the 14‐item Transition‐Q at a single time point. Total scores range from 0 to 100; higher scores indicate greater health care self‐management skills as a proxy for transition readiness. Descriptive statistics summarized patient characteristics and Transition‐Q scores for the population. Regression analyses determined the association between age, sex, and disease type and Transition‐Q score.ResultsAmong 70 participants, 61 had JIA and 9 cSLE (mean disease duration 4.6 years). The mean (SD) total Transition‐Q score was 59.8 (14.9). Age was significantly associated with Transition‐Q score (standardized β = 0.372l P = 0.002). The most commonly reported challenges were seeing the physician alone (without parents), making one’s own appointments, picking up prescriptions, and independent transportation for appointments.ConclusionTransition readiness appears to increase with patient age. There is significant variability in Transition‐Q scores between patients of the same age, suggesting that an individualized approach to improving self‐management skills is necessary.

Modifiable factors related to transition readiness in adolescents and young adults with epilepsy

ObjectiveTo characterize transition readiness in adolescents and young adults (AYAs) with epilepsy and validate the social-ecological model of AYA readiness to transition (SMART) in a sample of AYAs with epilepsy. MethodsThis cross-sectional study included typically developing youth with epilepsy 13–25 years old seen in a comprehensive epilepsy center. Adolescents and young adults completed measures of transition readiness (Transition Readiness Assessment Questionnaire; TRAQ), epilepsy knowledge, epilepsy self-management, developmental factors, and emotional and behavioral functioning. Adolescents and young adults also completed a measure of their relationship quality with healthcare providers. Caregiver report was included when available. ResultsParticipants included 82 AYAs (Mage = 17.3 ± 2.8; 86.6% White Non-Hispanic, 53.7% females) with epilepsy. Transition Readiness Assessment Questionnaire scores (M = 3.33, SD = 0.86) were correlated with modifiable and non-modifiable factors: age (r = 0.66, p < 0.001), income (r = −0.23, p = 0.04), AYA cognitive problems (r = 0.24, p = 0.03), AYA knowledge (r = 0.31, p = 0.005), AYA expectations (r = 0.26, p ≤ 02), AYA inattention (r = −0.24, p = 0.03), AYA executive dysfunction (r = 0.25, p = 0.02), caregiver-reported AYA odd behaviors (r = −0.25, p = 0.036), and caregiver-reported AYA communication problems (r = 0.25, p = 0.04). Transition Readiness Assessment Questionnaire scores were higher in AYAs who had seen adult providers for general healthcare issues (e.g., primary care), but were not related to other demographic (e.g., minority status, insurance), medical (years since diagnosis, type of epilepsy, polytherapy, seizure frequency), developmental (e.g., adaptive skills, cognitive functioning) or emotional/behavioral factors (e.g., skills, relationship with the provider, psychosocial functioning). Linear regression including variables significantly correlated with the outcome of transition readiness (F (7, 59) = 9.70, p < 0.001) explained 54% of the variance. Specifically, age was the only significant model predictor. SignificanceTransition readiness in AYAs with epilepsy was predicted by non-modifiable (e.g., age) and correlated with modifiable factors (e.g., knowledge, psychosocial/cognitive functioning). Providers must better prepare patients prior to transfer, and future research should use an epilepsy-specific measure of transition readiness to identify targets for intervention.

Validation of EpiTRAQ, a transition readiness assessment tool for adolescents and young adults with epilepsy.

ObjectiveTo design and validate a transition readiness assessment tool for adolescents and young adults with epilepsy and without intellectual disability.MethodsWe adapted a general transition readiness assessment tool (TRAQ) to add epilepsy‐relevant items based on concepts in current epilepsy quality measures. The adapted tool, EpiTRAQ, maintained the original structure and scoring system. Concurrent with clinical implementation in pediatric and adult epilepsy clinics at an academic medical center, we assessed the validity and reliability of this adapted tool for patients 16‐26 years of age. This process included initial validation with 302 patients who completed EpiTRAQ between October 2017 and May 2018; repeat validation with 381 patients who completed EpiTRAQ between June 2018 and September 2019; and retest reliability among 153 patients with more than one completed EpiTRAQ.ResultsMean scores were comparable between initial and repeat validation populations (absolute value differences between 0.05 and 0.1); internal consistency ranged from good to high. For both the initial and repeat validation, mean scores and internal consistency demonstrated high comparability to the original TRAQ validation results. Upon retest, few patients rated themselves with a lower score, while the majority rated themselves with higher scores.SignificanceEpiTRAQ is a valid and reliable tool for assessing transition readiness in adolescents and young adults with epilepsy and without intellectual disability.

A Systematic Review of Transition Readiness in Youth with Chronic Disease.

The transition of chronically ill adolescents and young adults to adult health care is poorly managed, leading to poor outcomes due to insufficient disease knowledge and a lack of requisite skills to self-manage their chronic disease. This review analyzed 33 articles published between 2009 and 2019 to identify factors associated with transition readiness in adolescents and young adults with chronic diseases, which can be used to design effective interventions. Studies were predominantly cross-sectional survey designs that were guided by interdisciplinary research teams, assessed adolescents and young adults ages 12-26 years, and conducted in the outpatient setting. Modifiable factors, including psychosocial and self-management/transition education factors, and non-modifiable factors, including demographic/ecological and disease factors, associated with transition readiness were identified. Further research is necessary to address gaps identified in this review prior to intervention development, and there is a need for additional longitudinal studies designed to provide perspective on how transition readiness changes over time.

Validation of the "Good2Go": the first French-language transition readiness questionnaire.

The use of transition readiness questionnaires is strongly recommended in adolescents with chronic conditions. The aim of our study was to validate "Good2Go," the first French-language transition readiness questionnaire. We analyzed the data from 2 multicentric studies (Canada and France) involving adolescents with chronic conditions (type 1 diabetes, inflammatory bowel disease, cystic fibrosis, epilepsy, juvenile idiopathic arthritis). Content and construct validity were examined using factorial and Rasch analysis (structural validity), Spearman's correlation, and Mann-Whitney test (external validity). Cronbach's α and intra-class correlation coefficients explored reliability. Cognitive interviews assessed wording comprehension and item appropriateness. Good2Go was completed by 321 participants (boys = 51%; mean age = 16.4years (standard deviation = 1.5; min = 14.0; max = 18.0); Canada = 51.1%). Factor analysis identified 3 domains: "health self-advocacy," "knowledge about chronic conditions," and "self-management skills." The 3-domain structure showed a satisfying Rasch fit, internal consistency, and test-retest reliability. Good2Go domain scores were significantly higher in participants over 17years of age, indicating satisfactory external validity.Conclusion: Good2Go is a valid 20-item questionnaire to assess transition readiness in adolescents with chronic conditions and may be useful in routine care to propose individually tailored preparation for their transfer to adult healthcare. Further research is now needed to analyze correlation between domain scores and success of transition.What is Known:• In adolescents with chronic conditions, the use of transition readiness questionnaires is recommended to propose individually tailored preparation for their transfer to adult healthcare.• However, no French-language questionnaire has been so far validated.What is New:• Based on a complete validation methodology, this study highlights that the French-language 20-items Good2Go questionnaire has good psychometric properties.• It explores all transition key points though 3 scored domains: "health self-advocacy", "knowledge about chronic disease" and "self-management skills".

How Do Health Literacy, Numeric Competencies, and Patient Activation Relate to Transition Readiness in Adolescents and Young Adults With Rheumatic Diseases?

To evaluate how demographics, health literacy, numeracy, and patient activation are related to transition readiness in adolescent and young adult (AYA) patients and to describe how parent/guardian (PG) performance on these metrics predicts AYA patients' transition readiness. In this single center, cross-sectional study, consecutive English-speaking AYA patients ages 17-21 years and PGs were recruited from outpatient rheumatology clinics. Participants completed the following self-reported instruments: demographic questionnaire, Short Test of Fundamental Health Literacy, Objective Numeracy Scale, Subjective Numeracy Scale, Symbolic-number mapping, Patient Activation Measure, and Transition Readiness Assessment Questionnaire (TRAQ; AYA patients only). Ninety-one AYA patients participated in the study, of whom 64 of 91 (70%) had juvenile idiopathic arthritis, and 54 PGs. Mean ± SD TRAQ score was 4.0 ± 0.65, correlating with "I am starting to do this" stage of change. Most participants (98%) had adequate health literacy. Multivariable regression analysis showed that AYA patients of female sex, older age, and higher patient activation significantly predicted higher TRAQ scores (P < 0.05). No PG characteristics were linked to higher AYA patient TRAQ scores. Transition readiness in AYA patients as measured by TRAQ is associated with female sex, older age, and higher patient activation. Though sex and age are nonmodifiable, interventions to boost patient activation represent a promising opportunity to improve transition readiness and outcomes.