Health Care Transition Readiness Research Articles

Factors associated with healthcare transition readiness for adolescents with chronic conditions: A cross-sectional study.

Healthcare transition readiness (HCTR) plays a vital role by fostering autonomy, self-management skills, and active involvement in healthcare, leading to positive health outcomes. This study aimed to examine the factors associated with HCTR in adolescents with chronic conditions (ACCs) including adolescents' autonomy, parental overprotection, and autonomy support from healthcare providers (HCPs). This descriptive study included 107 adolescents aged 14-19years (median age: 17years, IQR = 1), recruited from online communities and support groups in South Korea. Data were analyzed using hierarchical linear regression. Our research has shown that HCTR is linked to a lower level of parental overprotection (β = -0.46, 95% CI [-0.59, -0.33]) and higher levels of autonomy support from HCPs (β = 0.46, 95% CI [0.36, 0.56]). Among general characteristics, we also found that having a transfer plan to adult care (β = 0.24, 95% CI [0.04, 0.44]) is significantly associated with HCTR. This study contributes to a broader understanding of HCTR by examining its associated factors in ACC. The results emphasize the pivotal roles of parental involvement, healthcare provider support, and structured transition to adult care in enhancing HCTR. These findings underscore the need for comprehensive assistance to ensure successful healthcare transitions.

Transitioning from Pediatric- to Adult-focused Dialysis Care: A Systematic Review with Recommendations

Background: There is limited data evaluating the practices of nephrologists who prepare dialysis-dependent adolescents and young adults (AYA) for healthcare transition (HCT) from pediatric- to adult-focused healthcare. The aims of this manuscript are to 1) critically evaluate the current evidence and experiences surrounding HCT from pediatric- to adult-focused dialysis units and 2) make recommendations that can be implemented for this process. Methods: We searched PubMed, EMBASE, CINAHL, COCHRANE, and clinicaltrials.gov to identify studies that pertain to the HCT of AYA patients from pediatric- to adult-focused dialysis care. Results: A total of 14 studies were included and were grouped into subcategories to facilitate data synthesis: HCT process, preparedness of patient and family, preparedness of adult-focused nephrology providers, barriers to HCT, and quality of life. These included studies highlight the importance of creating an HCT process with a formal policy. They focus on the importance of patient and family preparedness and on measuring HCT readiness using standardized scales. They also underline the importance of identifying adult-focused nephrology ‘HCT champions’ to care for AYA requiring dialysis. Lastly, they emphasize the importance of measuring the quality of life in AYA patients to ensure optimal patient-centered HCT. Conclusion: There is limited data on HCT for AYA with ESKD. Upon review and analysis of current literature, we recommend: creating a formal, written HCT policy; setting achievable goals for health self-management and conducting regular assessments of HCT readiness; identifying a lead or ‘champion’ at an accepting adult-focused dialysis unit and ensuring good communication between pediatric and adult providers; and completing annual quality-of-life assessments.

Barriers to a successful healthcare transition for individuals with urea cycle disorders.

The pediatric to adult healthcare transition (HCT) is a process for individuals with chronic health conditions to gradually shift from a pediatric to an adult-oriented care system. Autonomy and self-management skills required for an individual's HCT readiness can be evaluated through the transition readiness assessment questionnaire (TRAQ). Despite general HCT preparation guidelines, little is known about the HCT experience of individuals with a urea cycle disorder (UCD). This is the first study to report the parent or guardian perception of the HCT process in children with a UCD by investigating the stages of transition readiness and transition outcome. We identify barriers to HCT readiness and planning, along with deficiencies in transition outcome for individuals with a UCD. For children that received special education services compared to those that did not, significantly lower transition readiness scores were identified in the total TRAQ score (p=0.03) and in the domains of tracking health issues (p=0.02), talking with providers (p=0.03), and managing daily activities (p=0.01). There was a lack of HCT preparation as most subjects did not have a HCT discussion with their healthcare provider before age 26. Deficiencies in HCT outcome are demonstrated by individuals with a UCD reporting delays in needed medical care and dissatisfaction with their healthcare services. Considerations for facilitating a successful HCT for individuals with a UCD include providing individualized education, appointing a transition coordinator, allowing flexibility in HCT timing, and ensuring that the individual recognizes concerning UCD symptoms and knows when to seek medical care.

1041-P: Health Care Transition Practices in the T1D Exchange Quality Improvement Collaborative

Background: Implementation of a structured health care transition (HCT) process is associated with positive outcomes in population health, experience of care, and health care utilization. Objective: To describe pediatric and adult clinic HCT practices in the T1D Exchange Quality Improvement Collaborative (T1DX-QI). Methods: Got Transition’s Six Core Elements of HCT offer a structured approach to the phases of transition support: 1) transition and care policy, 2) tracking and monitoring, 3) transition readiness, 4) transition planning, 5) transfer of care, and 6) transfer completion. T1DX-QI institutions (n=53) were surveyed to examine the integration of the Six Core Elements into diabetes HCT practices. Results: The survey response rate was 94.3% (n=50 clinics; 33 pediatric, 17 adult). A majority of T1DX-QI pediatric clinics (72.7%, n=24) report having a HCT policy compared to 29.4% (n=5) of adult clinics. Among pediatric institutions, 45.4% (n=15) maintain a tracking system to identify transition-aged youth, 39.4% (n=13) formally assess HCT readiness, 52% (n=17) document and update a plan of care for transition and 27.3% (n=9) have a process in place to confirm successful transfer of care completion with adult diabetes providers. Approximately two-thirds of T1DX-QI pediatric institutions (63.6%, n=21) have a formal structured HCT program and 29% (n=6) of these HCT programs report incorporating all 6 elements. Conclusions: Data from T1DX-QI centers highlight opportunities to further enhance transition preparation and receivership for emerging adults with type 1 diabetes. The Six Core Elements offer a potential avenue to structure improvement initiatives since many diabetes clinics only partially incorporate these elements in current practice. Partnerships between pediatric and adult diabetes centers should be considered as part of quality improvement efforts to facilitate incorporation of challenging HCT elements such as transfer of care completion. Disclosure F.Malik: None. G.T.Alonso: None. O.Ebekozien: Advisory Panel; Medtronic, Research Support; Eli Lilly and Company, Dexcom, Inc. S.Corathers: None. T1dx-qi collaborative: n/a. J.Cases-villablanca: None. M.E.Hilliard: None. S.Lyons: None. L.M.Jacobsen: None. A.J.Roberts: None. A.Mucci: None. S.Agarwal: Advisory Panel; Medtronic, Consultant; Beta Bionics, Inc., Research Support; Abbott Diabetes, Dexcom, Inc. C.Demeterco-berggren: Speaker's Bureau; Glooko, Inc. Funding The Leona M. and Harry B. Helmsley Charitable Trust

Depressive Symptoms, Cannabis Use, and Transition Readiness among College Students with and without Chronic Medical Conditions

Background: College students experience increased responsibility for healthcare transition. They are at increased risk for depressive symptoms and cannabis use (CU), potentially modifiable predictors of successful healthcare transition. This study investigated how depressive symptoms and CU related to transition readiness, and if CU moderated the association between depressive symptoms and transition readiness for college students. Methods: College students (N = 1,826, Mage=19.31, SD = 1.22) completed online measures of depressive symptoms, healthcare transition readiness, and past-year CU. Regression identified 1) the main effects of depressive symptoms and CU on transition readiness and 2) examined if CU moderated the relationship between depressive symptoms and transition readiness with chronic medical conditions (CMC) status as a covariate. Results: Higher depressive symptoms were correlated with past-year CU (r=.17, p<.001) and lower transition readiness (r=-0.16, p<.001). In the regression model, higher depressive symptoms were related to lower transition readiness (ß=-0.02, p<.001); CU was not related to transition readiness (ß=-0.10, p=.12). CU moderated the relationship between depressive symptoms and transition readiness (B=.01, p=.001). The negative relationship between depressive symptoms and transition readiness was stronger for those with no past-year CU (B=-0.02, p<.001) relative to those with a past-year CU (ß=-0.01, p<.001). Finally, having a CMC was related to CU and higher depressive symptoms and transition readiness. Conclusions: Findings highlighted that depressive symptoms may hinder transition readiness, supporting the need for screening and interventions among college students. The finding that the negative association between depressive symptoms and transition readiness was more pronounced among those with past-year CU was counterintuitive. Hypotheses and future directions are provided.

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.

Perceptions of caregivers and adolescents/young adults with cystic fibrosis regarding health care transition readiness during the COVID-19 pandemic: A qualitative study

PurposeMedical advances have increased the life expectancy of adolescents and young adults (AYA) with cystic fibrosis (CF) and importance of high-quality health care transitions (HCT) from pediatric-to-adult focused health care. The purpose of this study was to describe perceptions of HCT readiness among caregivers and AYA with CF during the COVID-19 pandemic. Design and methodsUsing a qualitative descriptive design, caregivers and AYA aged 12–21 years old were recruited from three large CF care centers across the eastern U.S. Data were collected using an online questionnaire with open ended and closed ended questions. Survey topics were: perceptions of HCT readiness, actions to prepare for HCT, and the impact of COVID-19. Results were interpreted using an adapted framework of the Health Care Transition Research Consortium Model and qualitative content analysis. ResultsThe sample included 73 caregivers (62 mothers) and 34 AYA (24 female, mean age 15.5 years). Three attributes of HCT readiness were identified from caregiver and AYA perceptions: (1) strong concerns that AYA lacked readiness to manage self-care needs in the future, (2) gaps in resources hindered ongoing efforts to enhance transition readiness, and (3) COVID changes created new barriers and facilitators to health care transition readiness. ConclusionsCaregivers and AYA felt they lacked readiness for HCT, they worried about worsening outcomes in adult-focused care, and they were challenged by the onset of the COVID-19 pandemic. Practical implicationsThese findings provide a solid description of perceived transition readiness during a pandemic that may enhance transitional care design.

Sickle cell disease and adolescents’ perspectives on self-care management resources

BackgroundAdolescents with sickle cell disease (SCD) face unique challenges, especially during the critical health care transition from pediatric to adult care. The purpose of this study was to gather the perspectives of adolescents living with SCD and to describe their self-care management experiences prior to their move into the adult health care system. MethodsGuided by the Theory of Self-Care Management for Sickle Cell Disease, this qualitative descriptive study used semi-structured interviews with 11 adolescents with SCD (M = 16.63 years, SD = 1.15). In addition to a demographic survey, adolescents answered interview questions about their perceptions of their self-care management, health care transition readiness, support, and spiritual well-being. Data were analyzed using a template analysis style. ResultsFour major themes were identified: attaining vocational aspirations, maintaining effective self-care management strategies, managing and maintaining social support, and building resilience through spirituality and religion. Maintaining, effective self-care management strategies had three threads: coping behaviors, health care transition needs, and self-care management strengths. DiscussionIdentifying self-care management resources and areas where further attention is needed can be helpful for health care providers when developing age specific plans. A tailored approach to care during this critical health care transition period can also build capacity for a successful transition for adolescents.

Translation and validation of the STARx questionnaire in transitioning Chinese adolescents and young adults with chronic health conditions

BackgroundAdolescent/young adults (AYAs) with chronic conditions must undergo healthcare transition (HCT) preparation until their mid-twenties. Valid HCT readiness measures are lacking in China. MethodsThe present study translated, back-translated, and adapted the Self-Management and Transition to Adulthood with Rx = Treatment (STARx) Questionnaire. We examined the psychometric properties of this tool in a relatively large in-patient sample of AYAs with various chronic health conditions at a Chinese tertiary general hospital. ResultsWe enrolled 624 AYAs aged 10–25 years (19.66 ± 3.64) with various chronic health conditions. The Chinese version of the STARx Questionnaire demonstrated excellent internal consistency (Cronbach's alpha = 0.83) and reliability with a two-week test-retest (ICC = 0.88, p < .001). Furthermore, the Chinese version revealed a three-factor structure (self-management, disease knowledge, and provider communication) consistent with the revised English version of the STARx Questionnaire. In terms of discriminant validity, the total score of the Chinese STARx Questionnaire showed a significant positive correlation with age but no gender differences were found. In terms of predictive validity, the Chinese STARx Questionnaire was significantly correlated with shorter length of hospitalization and higher frequency of emergency room visit, but the correlations became insignificant after controlling for age. ConclusionsThe results suggest that the Chinese version of the STARx Questionnaire is a robust HCT readiness tool in AYAs with chronic conditions and clinicians may find it useful to develop individualized interventions.

Parental Perspectives on Health Care Transition in Adolescent and Young Adult Survivors of Pediatric Cancer.

The health care transition (HCT) from pediatric to adult care is pivotal for childhood cancer survivors (CCS) and their parents. However, there is little research examining parental needs during HCT, despite this being a key predictor of successful HCT. The goal of this study was to investigate the needs of parents of CCS during HCT. Using an integrative review of the literature structured around the social-ecological model (SEM) of CCS transition readiness yielded 454 articles, including three hand-searched articles. Six articles were included in the final analysis. Data were extracted into nine factors derived from SEM. Articles were published within the last decade, largely qualitative, and mainly examined parents and CCS together. Parents most frequently mentioned relationships with their practitioner and CCS as contributing to HCT readiness, while abstract factors, such as goal-setting and expectations around HCT, were not mentioned. Our results are limited by the dearth of research on this topic, the homogeneity of samples, and joint presentation of CCS and parent data. Nonetheless, our results indicate that parents do not weigh all aspects of SEM equally, with macrolevel barriers, such as sociodemographic factors being viewed as less salient for HCT readiness. Parents mostly focused on interpersonal factors, such as their relationships with practitioners and CCS, indicating that practitioners should emphasize these in preparing parents for HCT.

The self-management and transition manual “ALL YOU NEED IS LOVE” for adolescents with chronic kidney disease

PurposeTo examine the effects of “ALL YOU NEED IS LOVE”, a novel six-week, self-directed patient education manual designed to improve chronic kidney disease knowledge/self-management, health care transition readiness, self-advocacy, and mindfulness skills among adolescents with chronic kidney disease. Design and methodsWe enrolled 49 adolescents aged 11–17 years (mean age 14.7 ± 1.9; 53.1% males) from a university hospital kidney center who had CKD stages 3 and greater, who were randomly assigned into the “ALL YOU NEED IS LOVE” patient education only group (n = 31) or the “ALL YOU NEED IS LOVE” patient education plus mindfulness training group (n = 18). Participants completed Qualtrics surveys at baseline, post-intervention, and three-month follow-up. The survey included measures of outcome variables (i.e., self-management/transition readiness, patient self-advocacy, and mindfulness), and an additional demographic questionnaire was included in the baseline survey. Multilevel model analyses were used to examine the effects of group and time on the outcome variables. ResultsMultilevel model analyses showed an overall significant time effect across all outcome variables in both groups. However, the group effects were not statistically significant across the outcome variables. ConclusionsBoth interventions significantly increased participants' self-management/HCT readiness, self-advocacy, and mindfulness over time. Mindfulness training may not bring additional benefits to the “ALL YOU NEED IS LOVE” education manual. Practice implicationsPediatric nurses and clinicians may utilize the self-directed “ALL YOU NEED IS LOVE” manual to increase self-management/transition readiness, self-advocacy, and mindfulness among adolescents with chronic kidney disease.

Translational research – Healthcare transition readiness, stress, and resilience among youth with chronic conditions and disabilities

The demands of chronic conditions and disabilities challenge children and their families to manage their chronic condition and disability on a daily basis as children grow and develop. Children and adolescents are challenged to learn self-management skills and are vulnerable to developing stress created by the interplay between their developmental needs and the demands of managing the chronic condition and disability (Christian, 2016a, 2016b, 2019). As children with chronic conditions and disabilities become adolescents, they gain independence in self-management from their parents.

Health care transition from pediatric to adult care: an evidence-based guideline

For consistent quality of treatment of young people with chronic health care needs, a structured health care transition (HCT) from pediatric medicine to adult medical care is essential. Currently, most countries have no guidelines on HCT based on systematic evidence research. To close this gap, guidance to support HCT was developed in Germany. Twenty-two experts in the management of adolescents and young adults with different chronic conditions and three patient representatives were invited to take part in the guideline group. Based on a systematic literature search recommendations for HCT were drafted. Where evidence was lacking, recommendations were developed using collective expert consensus. The consensus process was independently moderated using a Delphi approach. The final draft was reviewed and endorsed by all major German medical societies. The clinical recommendations provide guidance for all chronic somatic diseases. After assessment of HCT readiness, an individualized plan for HCT should be drawn up. Key elements here are a responsible coordinator, age-adapted patient education, involvement of caregivers, web-based interventions, joint visits, and a structured summary for the receiving physician. The aim is the gradual transfer of responsibility for disease management to the young person themselves. Conclusion: As only a few randomized controlled studies on HCT are available, evidence-based statements are possible for some but not all areas of HCT. However, this guideline may help to develop globally accepted standards. These standards should be established and implemented. The aim should be a reimbursement by individual national health systems to allow appropriate support for young people.What is Known:• Health care transition from pediatric to adult care is primarily organized in local settings, partly based on disease-specific guidelines.•There have been no national guidelines in Germany until now.What is New:• Here we present the general evidence-based guidelines of the German Association of Scientific Medical Societies for health care transition.• These might serve as a blueprint for further national or international health care transition guidelines.

Coping, Anxiety, and Health Care Transition Readiness in Youth with Chronic Conditions

PurposeTo explore the relationship between coping and health care transition readiness, and to examine whether anxiety is a mediator between coping and health care transition readiness. Design and methodsA sample of 174 youths with various chronic conditions (age 13.03 ± 2.02 years, 48.3% male) attending the 2018 Victory Junction Camp and their parents participated. Youths and parents completed measures to assess coping (Kidcope Checklist), anxiety symptoms (PROMIS Anxiety scale), and transition readiness (STARx Questionnaire) through Qualtrics online surveys. ResultsPositive coping was positively related to transition readiness in both youth and parent-proxy reports, while negative coping was negatively related to transition readiness in youth reports. Anxiety mediated the relationship of positive coping and transition readiness in parent-proxy reports, and the relationship of negative coping and transition readiness in both youth self-reports and parent-reports. ConclusionsCoping is an important factor in transition readiness. Furthermore, anxiety is an important mediator, and may be more influential in the relationship of negative coping and transition readiness. Practice implicationsPractitioners and health care providers can use these findings to promote the use of positive coping and reduce the use of negative coping, which in turn may improve outcomes for youth with chronic health conditions who are transitioning to adult health care services.

Healthcare Transition Preparation in X-Linked Hypophosphatemia

Abstract Introduction/Background: X-linked-dominant hypophosphatemia (XLH), formally known as vitamin-D-resistant rickets, is a rare, hereditary, chronic and progressive skeletal disorder, often perceived as a childhood disease only. Its estimated prevalence is 1 in 20,000. The perception that XLH does not require treatment once the growth plates fuse means that many adolescents/young adults (AYA) are lost to follow-up and then seek care for chronic musculoskeletal symptoms, including the consequences of osteomalacia (bone pain, pseudofractures, fractures) during adulthood. There is a need to improve the healthcare transition (HCT) preparation for AYA with XLH and other rare metabolic bone disorders (MBD) to facilitate consistent and effective care throughout the life span and lessen the psychosocial and economic burden associated with these disorders. Methods/Statement of the Problem: HCT timelines, milestones, and educational tools exist for some chronic conditions such as diabetes or kidney disease, but these programs do not meet the unique needs and nuances of patients with XLH and other rare MBD as they transfer to adult-focused healthcare. Consequently, specific tools and resources tailored by disease experts for these AYA are needed. Results/Proposed Solution: Detailed timelines with milestones and a description of a HCT program for AYA with XLH and other rare MBD have been adapted from best practice protocols. This program reflects the specific needs of, and complexities associated with these conditions. Furthermore, this approach describes how to facilitate better communication between adult- and pediatric-focused providers and their interdisciplinary teams. Our approach is guided by patient/caregiver input and existing models for research/clinical care, with the use of validated tools to measure HCT readiness. We identified the need for psychosocial and access-related resources for AYA emancipation from parental involvement, including a guidance document for parents on how to empower their child to take ownership of the disease as they grow. In addition, it is helpful to provide disease education, genetic counselling and guidance on family planning, to encourage patients to advocate for their healthcare (as access to specialists may be limited by geographical location), and to facilitate communication/education to patients through channels familiar to and accepted by AYA (e.g. online portals, text messages). Clear HCT preparation guidelines and treatment-related goals are defined for all stakeholders. A portfolio of supporting materials underpins optimization of outcomes as AYA with XLH and rare MBD transfer from pediatric- to adult-focused healthcare. Conclusion: Development of HCT tools/resources specific to XLH and other rare MBDs can help prevent loss to follow-up and promote continuous clinical care, thus driving better outcomes for AYA with these conditions.

Specific healthcare responsibilities and perceived transition readiness among adolescent solid organ transplant recipients: Adolescent and caregiver perspectives

ObjectiveAdolescents and young adults (AYAs) with solid organ transplants must attain responsibility for healthcare tasks during transition to adult healthcare. However, healthcare systems often initiate transfer based on age and not independence in care. This study examines specific responsibilities distinguishing AYA organ transplant recipients reporting readiness to transfer. Methods65 AYAs (ages 12–21) with heart, kidney, or liver transplants and 63 caregivers completed questionnaires assessing AYA’s transition readiness, healthcare responsibility, and executive functioning. Categorizations included mostly/completely ready versus not at all/somewhat ready to transition; responsibility was compared between groups. Results42% of AYAs and 24% of caregivers reported AYAs as mostly/completely ready to transition. AYAs mostly/completely ready reported similar routine healthcare responsibility (e.g., medication taking, appointment attendance), but greater managerial healthcare responsibility (e.g., knowing insurance details, appointment scheduling), compared to AYAs not at all/somewhat ready to transition. ConclusionsAll AYAs should be competent in routine healthcare skills foundational for positive health outcomes. However, the managerial tasks distinguish AYAs perceived as ready to transfer to adult healthcare. Practice implicationsEmphasis on developing responsibility for managerial tasks is warranted. The Hierarchy of Healthcare Transition Readiness Skills is a framework by which AYA responsibility can be gradually increased in preparation for transfer.

Development and Initial Testing of a Health-Related Independence Measure for Autistic Young Adults as Reported by Caregivers.

Becoming an adult comes with education, work, living, and health-related transitions. Health care transition (HCT) services help adolescents prepare for a smooth transition to adult care, ensure health insurance retention, and promote adolescents' independent management of health care and life needs. Lack of HCT services can result in negative outcomes such as unmet needs, overmedication, and loss of decision-making authority. Autistic young adults (AYA) are half as likely to receive HCT services compared with special needs young adults. Furthermore, there are no HCT readiness measures that address the unique needs of AYA. This study used a mixed-methods approach to develop and test a holistic caregiver-reported measure of HCT readiness for AYA Health-Related Independence (HRI). The phases used to create and test the HRI measure included: (1) construct and question topic development through qualitative data collection with AYA and caregivers; (2) question development with clinicians and caregivers; and (3) initial question testing utilizing cognitive interviews and pretesting of the instrument with caregivers. Measure constructs were developed based on qualitative findings from AYA (n = 27) and caregivers (n = 39). The researchers identified 12 themes related to HRI from the data. Next, questions were developed for each theme by caregivers (n = 5) and clinicians (n = 25). Finally, questions and the survey format were tested using caregiver feedback in the form of cognitive interviews (n = 15) and pretests (n = 21). The final version of the caregiver-reported HRI measure included 8 constructs and 58 questions. The development of the HRI measure was a comprehensive and iterative process. This article highlights the measurement development process and its potential impact on AYA, caregivers, and clinicians. Why was this study done?: Health care transition services help youth keep their health insurance, transition to an adult doctor smoothly, and promote independence. To date, there is no health care transition intervention for autistic young adults. Few studies have examined how to prepare autistic young adults to manage their health and self-care needs and the transition to an adult model of care. We wanted to fill in these gaps by creating a measure of health care transition readiness for autistic young adults.What was the purpose of this study?: The purpose of the study was to develop the Health-Related Independence measure based on autistic young adult and caregiver input. We define Health-Related Independence as a young adult's ability to manage their health, healthcare, and safety needs. We also wanted to examine the measure to make sure it was easy to read, made sense, and was easy to answer.What did the researchers do?: We used a mixed-methods approach to develop and test the Health-Related Independence measure. There were three parts to the study: (1) we conducted individual interviews with autistic young adults and focus groups with caregivers to understand what topics should be included in the measure, (2) clinicians and caregivers then used those topics to create specific survey questions, (3) we conducted interviews and online pretest of the measure with caregivers.What were the results of the study?: The autistic young adults and caregivers identified twelve topics/themes to include in the Health-Related Independence Measure. Caregiver feedback helped make the measure shorter and easier to understand and complete. The final version of the caregiver-reported HRI measure included 58 questions.What do these findings add to what was already known?: We learned that young adults and caregivers have a broad understanding of health-related independence such as safety and sexuality/relationship knowledge. There weren't any measures to capture these ideas. This study created an important new measure that can be used in healthcare clinics, schools, and at home.What are potential weaknesses in the study?: This study aimed to work with autistic young adults to develop the Health-Related Independence measure, but due to funding and study limitations, we only included young adults in the 1st phase of the study. Caregivers were used as proxy reporters in phases 2 and 3. Not including autistic young adults in phases 2 and 3 was a weakness of the study. Future research should aim to fully incorporate young adults into the research process. Their views should inform the development of the qualitative interview guides and all portions of the study.How will these findings help autistic adults now or in the future?: The Health-Related Independence measure can help caregivers and health care providers identify areas in which the autistic young adults are successful and areas of needed improvement to assist in the successful transition to adult care and adult life. The authors are currently working on a study proposal to validate the Health-Related Independence measure as a self-assessment tool for young adults to take themselves.

Engagement in Household Chores in Youth With Chronic Conditions: Health care Transition Implications.

This study examined associations between chores engagement, self-management, and transition readiness in youth with chronic conditions. Youths with various chronic conditions attending a therapeutic camp, and their parents participated. Responses of 165 campers and their parents were analyzed (mean camper age 12.3 ± 2.6 years, 47.9% males, 79.4% White). The most common diagnoses were diabetes, spina bifida, cerebral palsy, and sickle cell anemia. Youth who completed chores manifested higher overall health care transition readiness ( = 5.17, p = .026) and better communication with providers ( = 2.98, p = .006) than youth who completed no chores. Higher chores frequency was not more predictive of higher health care transition readiness scores above and beyond the effects of having chores at all. These results suggest that responsible health care behaviors are related to similar actions in other areas of life. Assignment of chores may promote self-management and health care transition readiness in youth with chronic conditions.

N24 Prioritised adolescent healthcare transition readiness factors by Canadian inflammatory bowel disease nurses

Abstract Background Canada has over 270,000 individuals living with inflammatory bowel disease (IBD). Over 7000 children and adolescents have been diagnosed and these numbers are continuing to increase. Due to the chronic, life long nature of IBD, more adolescents are transitioning from paediatric to adult healthcare environments than ever before. There is great need to ensure that adolescents are properly supported through this transitional period to ensure that their health outcomes are maximised. IBD nurses are integral members of the transition team; however, their perspectives on priority transition readiness factors are limited. Therefore, the purpose of this study was for Canadian IBD nurses to prioritise healthcare transition readiness assessment factors. Methods An anonymous survey was created and distributed to IBD nurses across Canada. Nine transition topic categories with several transition statements within each category were identified based on a previous scoping review and expert opinion. Nurses were asked to rank the top three statements under each category. Results Fifty-six Canadian IBD nurses participated in the survey. The highest priority statement that was most frequently identified as the top selection under each transition topic category is listed below. Conclusion IBD nurses identified key transition readiness factors that will ultimately allow young adults to self-manage their IBD; promote successful transition into adult care; and allow for positive health outcomes.

HIV Health Care Transition Readiness: Embracing the Opportunity and Challenge.

Because of effective treatment and prolonged survival, thousands of young adult people living with HIV will need to transfer their health care to adult care providers. However, many lack basic essential skills and are not prepared for this transition. Many providers do not assess transition readiness on a regular basis. Validated transition readiness assessment tools can help providers guide interventions based on identified skill and knowledge deficits. Our purpose was to describe the impact of incorporating a validated Transition Readiness Assessment Questionnaire (TRAQ) into clinical practice. A retrospective chart review of 48 patients with HIV, ages 22-24 years, showed that the use of the TRAQ significantly affected provider interventions in the area of medication management (odds ratio: 0.02). Overall, the use of the TRAQ did not increase clinical interventions; however, it enabled providers to identify knowledge or skill deficits not previously addressed and to plan future clinical interventions to meet individual patient needs.