Predictors of Transition Outcomes in Cystic Fibrosis: Analysis of National Patient Registry and CF RISE (Responsibility. Independence. Self-care. Education) Data.

OBJECTIVE: To identify predictors of change in lung function and body weight during health care transition in cystic fibrosis (CF). METHODS: We conducted a retrospective cohort study using data from the CF Foundation Patient Registry and the web-based transition program CF RISE (Responsibility. Independence. Self-care. Education) for patients aged 16-25 years who transitioned to adult care from 2013 through 2019. We modeled change in forced expiratory volume in 1 second % predicted and weight using linear regression fit with generalized estimating equations. Predictors included gap in care (time between last pediatric and first adult outpatient visit), transition program engagement, and sociodemographic and medical factors. RESULTS: Among 12 420 adolescents and young adults (AYAs), 3876 transitioned to adult care with a median gap in care of 7.6 months. Patients from CF centers with greater rates of CF RISE engagement had improved lung function and weight at their first adult outpatient visit. Coverage on a parent's insurance plan and absence of CF complications predicted increased lung function. History of a nonlung transplant and sinus disease predicted increased weight. Comorbid diabetes mellitus and gaps in care >3 months predicted decreased lung function with longer gaps in care associated with greater decrease. A gap in care of 6-9 months predicted decreased weight. Control variables including baseline forced expiratory volume in 1 second and weight, and exacerbation status were also statistically significant. CONCLUSIONS: Findings suggest 2 promising targets to improve transition of AYAs with CF: increasing AYA engagement in CF RISE and reducing gaps in care during the transition period.

Post-hospitalization Care Transition Strategies for Patients with Substance Use Disorders: A Narrative Review and Taxonomy.

Hospitalizations represent important opportunities to engage individuals with substance use disorders (SUD) in treatment. For those who engage with SUD treatment in the hospital setting, tailored supports during post-discharge transitions to longitudinal care settings may improve care linkages, retention, and treatment outcomes. We updated a recent systematic review search on post-hospitalization SUD care transitions through a structured review of published literature from January 2020 through June 2023. We then added novel sources including a gray literature search and key informant interviews to develop a taxonomy of post-hospitalization care transition models for patients with SUD. Our updated literature search generated 956 abstracts not included in the original systematic review. We selected and reviewed 89 full-text articles, which yielded six new references added to 26 relevant articles from the original review. Our search of five gray literature sources yielded four additional references. Using a thematic analysis approach, we extracted themes from semi-structured interviews with 10 key informants. From these results, we constructed a taxonomy consisting of 10 unique SUD care transition models in three overarching domains (inpatient-focused, transitional, outpatient-focused). These models include (1) training and protocol implementation; (2) screening, brief intervention, and referral to treatment; (3) hospital-based interdisciplinary consult team; (4) continuity-enhanced interdisciplinary consult team; (5) peer navigation; (6) transitional care management; (7) outpatient in-reach; (8) post-discharge outreach; (9) incentivizing follow-up; and (10) bridge clinic. For each model, we describe design, scope, approach, and implementation strategies. Our taxonomy highlights emerging models of post-hospitalization care transitions for patients with SUD. An established taxonomy provides a framework for future research, implementation efforts, and policy in this understudied, but critically important, aspect of SUD care.

Quality of life from childhood to adulthood: Perspectives from adult patients with pediatric-onset intestinal failure.

Adult patients with pediatric onset short bowel syndrome (SBS) or intestinal failure (IF) have been described as a distinct population warranting further research. The aim of this exploratory study aimed was to offer initial insights into this population's navigation of childhood, adolescence, and transition into adulthood. Both quantitative and qualitative data were collected from a convenience sample of adults with pediatric-onset SBS/IF using a disease-specific pilot survey; 14 questionnaires were completed. Responses indicated childhood and adulthood were complex and marked by joys and trials, while adolescence was experienced by many as a particularly challenging time. As adults, numerous patients experienced barriers to accessing the medical care they desired and described difficulties finding experienced and knowledgeable providers who listened and offered individualized care. This study highlights the importance of further studying this unique patient population, suggesting it can offer critical insights to inform the development of interventions and transition programs.

Transitioning from the Emergency Department to a General Internist Outpatient Clinic for Paracentesis: A Qualitative Inquiry.

BACKGROUND: Repeated paracentesis for ascites can place significant demands on the emergency department (ED). A new general internist-led outpatient procedure clinic to alleviate this demand required ED staff and patients to accept this transition of care. AIM: This qualitative study evaluates barriers and facilitators to implementing the FLuid ASPiration (FLASP) clinic in a safety net hospital. METHODS: The FLASP clinic opened during the COVID-19 pandemic in March 2021. From February to April 2022, semi-structured interviews were conducted with: 10 ED physicians and nurses; 5 FLASP clinic patients; and 4 patients receiving paracentesis in the ED. Interviews were recorded, transcribed, and analyzed using a Grounded Theory approach for themes categorized by Theory of Planned Behavior (TPB) domains including: attitudes/knowledge; social norms; and logistics. RESULTS: Thematic analysis found that ED staff appreciated reduced demand for paracentesis, but barriers included: lack of knowledge; concerns about unstable patients and patient expectations (norms); and scheduling logistics. FLASP clinic patients had only favorable themes: belief in clinic safety; positive relationship with staff; and clinic efficiency. Patients using the ED for paracentesis expressed only concerns: possible need for testing or hospitalization; care usually in the ED; and unclear clinic scheduling. CONCLUSION: This study reveals challenges to transitioning sites of care for paracentesis including the need for greater ED staff education and standardizing methods to triage patients to appropriate site of care. Greater support and education of ED patients about the benefits of an outpatient procedure clinic may also reduce ED burden for paracentesis.

Older adults experience of transition to the community from the emergency department: a qualitative evidence synthesis.

AIM: Older adults comprise a growing proportion of Emergency Department (ED) attendees and are vulnerable to adverse outcomes following an ED visit including ED reattendance within 30 days. Interventions to reduce older adults' risk of adverse outcomes following an ED attendance are proliferating and often focus on improving the transition from the ED to the community. To optimise the effectiveness of interventions it is important to determine how older adults experience the transition from the ED to the community. This study aims to systematically review and synthesise qualitative studies reporting older adults' experiences of transition to the community from the ED. METHODS: Six databases (Academic Search Complete, CINAHL, MEDLINE, PsycARTICLES, PsycINFO, and Social Science Full Text) were searched in March 2022 and 2023. A seven-step approach to meta-ethnography, as described by Noblit and Hare, was used to synthesise findings across included studies. The methodological quality of the included studies was appraised using the 10-item Critical Appraisal Skills Programme (CASP) checklist for qualitative research. A study protocol was registered on PROSPERO (Registration: CRD42022287990). FINDINGS: Ten studies were included, and synthesis led to the development of five themes. Unresolved symptoms reported by older adults on discharge impact their ability to manage at home (theme 1). Limited community services and unresolved symptoms drive early ED reattendance for some older adults (theme 2). Although older adults value practical support and assistance transporting home from the ED this is infrequently provided (theme 3). Accessible health information and interactions are important for understanding and self-managing health conditions on discharge from the ED (theme 4). Fragmented Care between ED and community is common, stressful and impacts on older adult's ability to manage health conditions (theme 5). A line of argument synthesis integrated these themes into one overarching concept; after an ED visit older adults often struggle to manage changed, complex, health and care needs at home, in the absence of comprehensive support and guidance. DISCUSSION/ CONCLUSION: Key areas for consideration in future service and intervention development are identified in this study; ED healthcare providers should adapt their communication to the needs of older adults, provide accessible information and explicitly address expectations about symptom resolution during discharge planning. Concurrently, community health services need to be responsive to older adults' changed health and care needs after an ED visit to achieve care integration. Those developing transitional care interventions should consider older adults needs for integration of care, symptom management, clear communication and information from providers and desire to return to daily life.

"Being the main character but not always involved in one's own care transition" - a qualitative descriptive study of older adults' experiences of being discharged from in-patient care to home.

BACKGROUND: The growing number of older adults with chronic diseases challenges already strained healthcare systems. Fragmented systems make transitions between healthcare settings demanding, posing risks during transitions from in-patient care to home. Despite efforts to make healthcare person-centered during care transitions, previous research indicates that these ambitions are not yet achieved. Therefore, there is a need to examine whether recent initiatives have positively influenced older adults' experiences of transitions from in-patient care to home. This study aimed to describe older adults' experiences of being discharged from in-patient care to home. METHODS: This study had a qualitative descriptive design. Individual interviews were conducted in January-June 2022 with 17 older Swedish adults with chronic diseases and needing coordinated care transitions from in-patient care to home. Data were analyzed using inductive qualitative content analysis. RESULTS: The findings indicate that despite being the supposed main character, the older adult is not always involved in the planning and decision-making of their own care transition, often having poor insight and involvement in, and impact on, these aspects. This leads to an experience of mismatch between actual needs and the expectations of planned support after discharge. CONCLUSIONS: The study reveals a notable disparity between the assumed central role of older adults in care transitions and their insight and involvement in planning and decision-making.

Value-Based Payment to Support Health Care Transition for Young Adults with Intellectual and Developmental Disabilities: A Feasibility Study.

INTRODUCTION: Only 20% of youth with intellectual and developmental disability (ID/DD) receive health care transition (HCT) preparation from their health care providers (HCPs). To address HCT system gaps, the first-of-its-kind HCT value-based payment (VBP) pilot was conducted for young adults (YA) with ID/DD. METHODS: This feasibility study examined the acceptability, implementation, and potential for expansion of the pilot, which was conducted within a specialty Medicaid managed care organization (HSCSN) in Washington, DC. With local pediatric and adult HCPs, the HCT intervention included a final pediatric visit, medical summary, joint HCT visit, and initial adult visit. The VBP was a mix of fee-for-service and pay-for-performance incentives. Feasibility was assessed via YA feedback surveys and interviews with HSCSN, participating HCPs, and selected state Medicaid officials. RESULTS: Regarding acceptability, HSCSN and HCPs found the HCT intervention represented a more organized approach and addressed an unmet need. YA with ID/DD and caregivers reported high satisfaction. Regarding implementation, nine YA with ID/DD participated. Benefits were reported in patient engagement, exchange of health information, and care management and financial support. Challenges included care management support needs, previous patient gaps in care, and scheduling difficulties. Regarding expansion, HSCSN and HCPs agreed that having streamlined care management support, medical summary preparation, and payment for HCT services are critical. DISCUSSION: This study examined the benefits and challenges of a HCT VBP approach and considerations for future expansion, including payer/HCP collaboration, HCT care management support, and updated system technology and interoperability.

Barriers and facilitators to transition from pediatric to adult healthcare for immigrant youth with chronic health conditions.

PURPOSE: The objective of this study was to investigate the experience of first- and second- generation immigrant youth living with chronic health conditions in Canada, their parents or caregivers, and healthcare and service providers who care for immigrant youth, regarding the transition from pediatric to adult healthcare. DESIGN AND METHODS: We conducted semi-structured individual interviews and focus groups. Youth were 1st or 2nd generation immigrants, aged 16-25, with pediatric-onset chronic health conditions. Parents or caregivers had raised youth children as described. Providers delivered healthcare or other services to immigrant populations. Thematic analysis was conducted of all transcripts. RESULTS: Twenty youth, 14 parents/caregivers and five service providers participated. Most participants described healthcare transition as very difficult to navigate. Two major themes emerged across participant narratives: 1. Barriers to transition: lack of family experience in Canada, language, discrimination, financial strain, stigma, and long wait times. Some of these barriers are specific to newcomer families, but others are generalizable to the Canadian population. 2. Facilitators of transition: youth independence, youth acting as cultural bridges within their families, and cross-sector support between healthcare, education, social work and settlement services. CONCLUSIONS: Immigrant youth and their families face a broad range of barriers to healthcare transition. The collaborative nature of cross-sector support effectively addressed some of the barriers faced by newcomer families. PRACTICE IMPLICATIONS: Clinicians should provide immigrant youth and their families with accessible information about the health condition and how to navigate the adult healthcare system prior to transition, particularly when language barriers exist.

Psychological separation, health locus of control, and transition readiness in adolescents and young adults with type I diabetes.

PURPOSE: The purpose of this study was to examine the effects of psychological separation and health locus of control on the health care transition readiness of adolescents and young adults (AYAs) with type 1 diabetes. METHODS: Data were collected between December 2020 and October 2021. One hundred twelve AYAs with type 1 diabetes treated at a tertiary hospital and under follow-up observation as well as AYAs with type 1 diabetes nationwide who were part of the type 1 diabetes internet community were enrolled. The Psychological Separation Inventory, the Multidimensional Health Locus of Control scale from C, and the Self-management and Transition to Adulthood with Therapeutics = Rx Questionnaire were used. RESULTS: Multiple regression analysis indicated that age (ß = 0.302, p = .001), hemoglobin A1c (HbA1c) (ß = -0.174, p = .040), conflictual separation (ß = 0.242, p = .005), functional separation (ß = 0.200, p = .045) and attitudinal separation (ß = -0.240 p = .015) were significantly associated with health management transition readiness; these predictors explained 27.6% of health care transition readiness (F = 8.062, p = .000). CONCLUSIONS: AYAs with type 1 diabetes can enhance readiness for health care transition by fostering psychological separation from parents, effectively managing blood glucose levels, and taking into account age-related factors during the preparation process. At this point, it is essential for healthcare professionals to guide parents in recognizing adolescents' psychological independence and facilitating their supportive role through the process of redefining their roles. PRACTICE IMPLICATIONS: Health care providers should promote psychological separation in AYAs. Additionally, taking into account the developmental characteristics of adolescence can facilitate a successful health care transition.

The Health Care Transition Needs of Adolescents and Emerging Adults with Chronic Pain: A Narrative Review.

The aim of this narrative review was to provide an overview of what is known about the health care transition process in pediatric chronic pain, barriers to successful transition of care, and the roles that pediatric psychologists and other health care providers can play in the transition process. Searches were run in in Ovid, PsycINFO, Academic Search Complete, and PubMed. Eight relevant articles were identified. There are no published protocols, guidelines, or assessment measures specific to the health care transition in pediatric chronic pain. Patients report many barriers to the transition process, including difficulty attaining reliable medical information, establishing care with new providers, financial concerns, and adapting to the increased personal responsibility for their medical care. Additional research is needed to develop and test protocols to facilitate transition of care. Protocols should emphasize structured, face-to-face interactions and include high levels of coordination between pediatric and adult care teams.

[Discharge management strategies in German general hospitals : A nationwide survey of professionals responsible for clinical risk management]. / Strategien des Entlassmanagements in deutschen Allgemeinkrankenhäusern : Deutschlandweite Befragung von Verantwortlichen des klinischen Risikomanagements.

BACKGROUND: Transitions from inpatient care are associated with risks for the safety of patients. In 2017, the framework agreement on discharge management was legally defined. There is currently a lack of empirical data in Germany on the implementation of measures to ensure safe transitions of patients after inpatient care. The aim of this study is to provide an overview of the discharge management strategies implemented by German general hospitals. METHODS: Between March and May 2022, specific discharge management strategies as well as structural and organizational characteristics were assessed in a nationwide survey of 401 general hospitals, and descriptive statistics and group comparisons were performed. RESULTS: Seven of nine strategies surveyed were implemented in > 95% of all hospitals. The evaluation of discharge planning was only implemented in 61% of the hospitals, and systematic documentation, analysis, and evaluation of readmissions in 54%. Hospitals with a higher number of hospital beds reported significantly less often about "early contact with follow-up care providers" and "organization of a seamless transition to follow-up care." DISCUSSION: A large part of the strategies in discharge management from inpatient treatment is implemented in German general hospitals. However, measures for evaluation and the systematic analysis of discharge processes and readmissions of patients have only been partially implemented. However, these are necessary to systematically evaluate and potentially improve the discharge processes.

Patients with bariatric surgery: Urgent need for accurate registration of the contraindication to enable safe pharmacotherapy in hospital and primary care.

PURPOSE: To enable the use of automatic clinical decision support for pharmacotherapy in patients with bariatric surgery, it is necessary to register the contraindication "bariatric surgery" in the hospital, general practitioner (GP), and community pharmacy electronic health record systems. The aim of this research was to quantify the correct registration of this contraindication in hospital, GP, and community pharmacy records. Furthermore, we investigated whether the registration status in primary care was dependent on the registration status in the hospital. METHODS: From patients who underwent bariatric procedures performed in the Albert Schweitzer Hospital (Dordrecht, the Netherlands) between 2018 and 2021, the percentage of registered contraindications in hospital medical records was assessed. Due to feasibility reasons, a subset of the patients' data was created for assessing the percentage of registered contraindications in GP and community pharmacy records. RESULTS: Out of 664 patients who underwent bariatric surgery, the contraindication bariatric surgery was registered in 69.1% of the cases. Out of 552 patients, 28.3% and 25.1% were correctly registered in GP and community pharmacy records, respectively. There was no correlation between registration status in the hospital EHR and registration status in GP practices or community pharmacies. CONCLUSIONS: The percentage of correct registration of bariatric surgery in hospital, GP, and community pharmacies is low. To avoid doctors prescribing and pharmacists dispensing drugs to post-bariatric patients without knowing that they have undergone this procedure, better registration of the contraindication is required to enable optimal use of clinical decision support systems for the pharmacotherapy of patients after bariatric surgery.

"Somebody was standing in my corner": a mixed methods exploration of survivor, coach, and hospital staff perspectives and outcomes in an Australian cancer survivorship program.

PURPOSE: Cancer survivorship in Australia continues to increase due to new methods for early detection and treatment. Cancer survivors face challenges in the survivorship phase and require ongoing support. A telephone-delivered cancer survivorship program (CSP), including health and mental health coaches, was developed, piloted, and evaluated in Eastern Australia. METHODS: Cancer survivors' (n = 7), coaches' (n = 7), and hospital staff (n = 3) experiences of the CSP were explored through semi-structured interviews. Quantitative data routinely collected throughout the pilot of the CSP was described (N = 25). RESULTS: Three syntheses and 11 themes were generated through thematic analysis. The first synthesis centred around operational factors and highlighted a need to streamline communication from the point of recruitment, through to program delivery, emphasising that the program could be beneficial when timed right and tailored correctly. The second synthesis indicated that the CSP focused on appropriate information, filled a gap in support, and met the needs of cancer survivors by empowering them. The third synthesis focussed on the value of mental health support in the CSP, but also highlighted challenges coaches faced in providing this support. Descriptive analysis of quantitative data indicated improvements in self-management, weekly physical activity, and meeting previously unmet needs. CONCLUSIONS: Cancer survivors expressed appreciation for the support they received through the CSP and, in line with other cancer survivorship research, predominantly valued just having somebody in their corner. IMPLICATIONS FOR CANCER SURVIVORS: Recommendations are made for improving cancer survivorship programs in the future.

"We have to save him": a qualitative study on care transition decisions in Ontario's long-term care settings during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic has contributed to a global crisis in long-term care (LTC) with devastating consequences for residents, families and health professionals. In Ontario, Canada the severity of this crisis has prompted some care partners to move residents home with them for the duration or a portion of the pandemic. This type of care transition, from LTC to home care, was highly unusual pre-pandemic and arguably suboptimal for adults with complex needs. This paper presents the findings of a qualitative study to better understand how residents, care partners, and health professionals made care transition decisions in Ontario's LTC settings during the pandemic. METHODS: Semi-structured interviews were conducted with 32 residents, care partners and health professionals who considered, supported or pursued a care transition in a LTC setting in Ontario during the pandemic. Crisis Decision Theory was used to structure the analysis. RESULTS: The results highlighted significant individual and group differences in how participants assessed the severity of the crisis and evaluated response options. Key factors that had an impact on decision trajectories included the individuals' emotional responses to the pandemic, personal identities and available resources. CONCLUSIONS: The findings from this study offer novel important insights regarding how individuals and groups perceive and respond to crisis events.

Development of a tool for assessing the performance of long-term care systems in relation to care transition: Transitional Care Assessment Tool in Long-Term Care (TCAT-LTC).

BACKGROUND: Improving the quality and safety of care transitions is a priority in many countries. Carrying out performance measurements play a significant role in improving quality of decisions undertaken by different actors involved in reforms. Therefore, the main objective of this paper is to present the development of an evaluation tool for assessing the performance of long-term care systems in relation to care transition, namely the Transitional Care Assessment Tool in Long-Term Care (TCAT-LTC). This study is performed as part of a larger European TRANS-SENIOR project. METHODS: The development of the TCAT-LTC involved three steps. First, we developed a conceptual model based on Donabedian's quality framework and literature review. Second, we carried out a thorough process of item pool generation using deductive (systematic literature review) and deductive-inductive methods (in-depth interviews) with experts in the field of long-term care. Third, we conducted preliminary validation of the tool by asking experts in research and practice to provide an opinion on a tool and to assess content validity. Future fourth step will involve a tool's pilot with country experts from Germany, the Netherlands and Poland. RESULTS: By applying methodological triangulation, we developed the TCAT-LTC, which consists of 2 themes, 12 categories and 63 items. Themes include organizational and financial aspects. Organizational aspects include categories such as communication, transfer of information, availability and coordination of resources, training and education of staff, education/support of the patient/informal caregiver, involvement of the patient/informal caregiver, telemedicine and e-Health, and social care. Financial aspects include categories such as primary care, hospital, and long-term care. We also present the instructions on the application of the TCAT-LTC. CONCLUSIONS: In this paper, we presented the development of the TCAT-LTC evaluation tool for assessing the performance of long-term care systems in relation to care transition. The TCAT-LTC is the first tool to assess the performance of long-term care systems in relation to care transition. Assessments can be carried out at the national and international level and enable to monitor, evaluate, and compare performance of the long-term care systems in relation to care transition within and across countries.

The hospital-to-home care transition experience of home care clients: an exploratory study using patient journey mapping.

BACKGROUND: Care transitions have a significant impact on patient health outcomes and care experience. However, there is limited research on how clients receiving care in the home care sector experience the hospital-to-home transition. An essential strategy for improving client care and experience is through client engagement efforts. The study's aim was to provide insight into the care transition experiences and perspectives of home care clients and caregivers of those receiving home care who experienced a hospital admission and returned to home care services by thematically and illustratively mapping their collective journey. METHODS: This study applied a qualitative descriptive exploratory design using a patient journey mapping approach. Home care clients and their caregivers with a recent experience of a hospital discharge back to the community were recruited. A conventional inductive approach to analysis enabled the identification of categories and a collective patient journey map. Follow-up interviews supported the validation of the map. RESULTS: Seven participants (five clients and two caregivers) participated in 11 interviews. Participants contributed to the production of a collective journey map and the following four categories and themes: (1) Touchpoints as interactions with the health system; Life is changing; (2) Pain points as barriers in the health system: Sensing nobody is listening and Trying to find a good fit; (3) Facilitators to positive care transitions: Developing relationships and gaining some continuity and Trying to advocate, and (4) Emotional impact: Having only so much emotional capacity. CONCLUSIONS: The patient journey map enabled a collective illustration of the care transition depicted in touchpoints, pain points, enablers, and feelings experienced by home care recipients and their caregivers. Patient journey mapping offers an opportunity to acknowledge home care clients and their caregivers as critical to quality care delivery across the continuum.

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

BACKGROUND/OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Evaluation of a Primary Care-Based Multidisciplinary Transition Clinic for Patients Newly Initiated on Buprenorphine in the Emergency Department.

BACKGROUND: Care transitions represent vulnerable events for patients newly initiating medications for opioid use disorder (MOUD). Multidisciplinary primary care-based transition clinics may improve care linkage and retention in MOUD treatment. Additionally, these interventions may help primary care clinicians (PCPs) overcome barriers to adopting MOUD into practice. In this evaluation, we assessed the impact of a primary care-based transition clinic for patients newly initiating buprenorphine for opioid use disorder (OUD) in the emergency department. METHODS: We conducted a retrospective program evaluation within a single academic health system involving adults who newly initiated buprenorphine for OUD through an emergency department-based program and were referred to follow up in either a dedicated multidisciplinary primary care-based transition clinic (SPARC) vs referral to usual primary care (UPC). We performed descriptive analyses comparing patient demographics, referral volume, linkage to care, treatment retention, and markers of high-quality care between the 2 groups. A log-rank test was used to determine the difference in probabilities of retention between SPARC and UPC over 6 months. RESULTS: Over 12 months, the number of referrals to SPARC was greater than to UPC (N = 64 vs N = 26). About 58% of patients referred to SPARC attended an initial visit vs 38% referred to UPC. Treatment retention was consistently greater in SPARC than UPC (1 m: 90% vs 60%; 3 m: 76% vs 40%; 6 m: 60% vs 30%). Markers of care quality including naloxone provision (100% vs 80%) and infectious screening (81% vs 40%) were greater in SPARC clinic. SPARC was associated with a statistically significant increased probability of retention in treatment as compared to UPC (P < .01). CONCLUSIONS: In this observational evaluation, a primary care-based multidisciplinary transition clinic for patients initiating buprenorphine MOUD was associated with expanded access to longitudinal OUD treatment and superior linkage to care, retention in care, and quality of care compared to referral to usual primary care. Further research using a more rigorous research design is required to further evaluate these findings.

Stakeholders' perspectives on caregiver outcomes for health care transition for adolescents and young adults with special health care needs: A qualitative study.

BACKGROUND: Previous literature has explored parent/caregiver perspectives and satisfaction with the health care transition (HCT) process for their adolescents and young adults with special health care needs (AYASHCN). Limited research has explored the opinion of health care providers and researchers on parent/caregiver outcomes associated with a successful HCT for AYASHCN. METHODS: A web-based survey was distributed through the international and interdisciplinary Health Care Transition Research Consortium listserv, which at the time of the survey was composed of 148 providers dedicated to optimizing the HCT of AYAHSCN. Participants responded to the open-ended question, 'What parent/caregiver-related outcome(s) would represent a successful healthcare transition?' Respondents included 109 providers (52 health care professionals, 38 social service professionals and 19 other). Responses were coded for emergent themes, and research suggestions were identified. RESULTS: Qualitative analyses identified two major themes: emotion- and behaviour-based outcomes. Emotion-based subthemes included relinquishing control of child's health management (n = 50, 45.9%) as well as parental satisfaction and confidence in their child's care and HCT (n = 42, 38.5%). Respondents also noted that parents/caregivers should experience an improved sense of well-being and decreased stress (n = 9, 8.2%) due to a successful HCT. Behaviour-based outcomes included early preparation and planning for HCT (n = 12, 11.0%) and parental instruction on the knowledge and skills necessary for their adolescent to independently manage their health (n = 10, 9.1%). CONCLUSIONS: Health care providers can assist parents/caregivers in learning strategies for instructing their AYASHCN about condition-related knowledge and skills as well as provide support for 'letting go' of the caregiver role during the HCT to adult-focused health services and adulthood. Communication between the AYASCH, their parents/caregivers and paediatric- and adult-focused providers needs to be consistent and comprehensive to ensure continuity of care and a successful HCT. We also offered strategies to address the outcomes suggested by the participants of this study.

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

PURPOSE: To 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 METHODS: We 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. RESULTS: Multilevel 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. CONCLUSIONS: Both 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 IMPLICATIONS: Pediatric 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.