Healthcare Transition from Pediatric- to Adult-Focused Care in X-Linked Hypophosphatemia: Review and Expert Consensus

Context X-linked hypophosphatemia (XLH) is an inherited skeletal disorder that can lead to lifelong deleterious musculoskeletal and functional consequences. Although often perceived as a childhood condition, both children and adults experience the negative impacts of XLH. Adolescents and young adults (AYA) benefit from effective healthcare transition preparation to support the transfer from pediatric- to adult-focused care. Whereas transition timelines, milestones, and educational tools exist for some chronic conditions, they do not meet the unique needs of patients with XLH. Evidence Acquisition To produce the first expert recommendations on healthcare transition preparation for AYA with XLH developed by clinical care investigators and transition experts, a formal literature search was conducted and discussed in an advisory board meeting in July 2020. A modified Delphi method was used to refine expert opinion and facilitate a consensus position. Evidence Synthesis We identified the need for psychosocial and access-related resources for disease education, genetic counselling, family planning, and AYA emancipation from caregiver-directed care. Additionally, we recognized that it is necessary to facilitate communication with patients through channels familiar and accessible to AYA and teach patients to advocate for their healthcare/access to specialists. Conclusions Clear healthcare transition preparation guidelines and treatment-related goals are defined. Individualized timelines and practical strategies for healthcare transition preparation are proposed to optimize health outcomes resulting from continuous clinical care throughout the patient lifecycle. We provide an expert consensus statement describing a tailored healthcare transition preparation program specifically for AYA with XLH to aid in effective transfer from pediatric- to adult-focused healthcare.

Assessing the Feasibility of a Multicenter Transition Intervention Model Across Adolescent Secure Services in England (MOVING FORWARD): Protocol for a Feasibility Cluster Randomized Controlled Trial

Background Young people moving from adolescent secure inpatient units to adult care in the United Kingdom have multiple and complex needs and are more likely to experience poor transition outcomes. Poorly managed transitions can lead to enduring use and dependency on mental health services. However, there is a lack of knowledge about the feasibility of transitional care models. Objective This paper presents the protocol for a study that aims to test a feasibility cluster randomized controlled trial for young people transitioning from adolescent secure services to adult-oriented settings. The overarching aim of the MOVING FORWARD study is to provide a preliminary estimate of the effectiveness and cost-effectiveness of a new transition intervention model and to inform a future full-scale cluster randomized controlled trial. Methods The design of the study is a 3-arm feasibility cluster randomized controlled trial comparing the MOVING FORWARD intervention against standard transition preparation conducted at 6 adolescent secure services, of which 4 units will receive the intervention and 2 will serve as controls. Eligible young people between 17-19 years, their parents/carers, and key workers will be invited to participate. Young people and parents/carers will be allocated to two conditions (young people alone and young people with a parent/carer) and will receive 4 transition preparation workshops across 6 months. Six adolescent secure hospitals will be randomly allocated, stratified by area and service type. Data will be collected at 3 time points: baseline (T0), 6-12 months postintervention (T1), and 18-24 months postbaseline (T2). Primary and secondary outcomes will be based on assessment measures and interviews conducted at T1 and T2. Results A total of 13 young people and 17 staff members have contributed to the intervention design through online advisory groups on the design of the study and important themes for transition. We have also consulted members of the public (a steering group) including 2 young people who have transitioned to the community and 2 parents/carers. Common identified themes included appropriateness of module content and support during delayed transitions. The content of the intervention will be finalized during the first 6 months of the study. Participants will be recruited over the course of 6 months. An intraclass correlation coefficient will be calculated to inform the power of the sample size for a further large-scale trial. With a sample size of 50, we will be able to estimate a dropout rate of 80% (95% CI –11% to 11%). Conclusions This research will provide practitioners and policy makers with an evidence-based framework of how training and familiarization with the prospective transitions can yield positive outcomes. This study will test whether a psychosocial intervention can be implemented in adolescent secure hospitals. The results will identify barriers and facilitators to the proposed intervention and will enable services to reflect on the quality of transitional care delivery. International Registered Report Identifier (IRRID) PRR1-10.2196/29273

Opportunities for Enhanced Transition of Care Preparation for Adolescents and Emerging Adults With Type 1 Diabetes: Use of the READDY Transition Tool

There is an ongoing need to determine best practices for effective transition from pediatric to adult care for adolescents and emerging adults EAs with type 1 diabetes given the potential for poor health outcomes post-transfer. This study evaluated self-reported confidence ratings as measured by the Readiness of Emerging Adults with Diabetes Diagnosed in Youth (READDY) tool among adolescents and EAs with type 1 diabetes and the association of the confidence ratings with clinical and demographic characteristics, as well as provider documentation of relevant anticipatory guidance topics. The READDY is a diabetes-specific tool used to collect patient-reported confidence in transition preparation topics to target educational interventions. These interventions are divided into four domains: Diabetes Knowledge, Health System Navigation, Insulin Self-Management, and Health Behaviors. A retrospective chart review was conducted of patients 15–24 years of age with type 1 diabetes who completed the READDY between January 2017 and January 2018 at a single center. Overall patient-reported confidence levels were high. However, adolescents and EAs endorsed their lowest levels of confidence on items assessing knowledge of alcohol, tobacco, sexual health, and the impact of diabetes on pregnancy (females only), with the percentages of low scores of 20.7, 25.9, 35.9, and 42.9%, respectively. Documentation of provider counseling about screening and prevention of diabetes comorbidities, alcohol use, and tobacco use was associated with scores in the higher range for the corresponding item in the READDY. These findings highlight an opportunity to create interventions related to developmentally important topics for adolescents and EAs with type 1 diabetes to enhance successful transition preparation.

Opportunities for Enhanced Transition of Care Preparation for Adolescents and Emerging Adults With Type 1 Diabetes: Use of the READDY Transition Tool

There is an ongoing need to determine best practices for effective transition from pediatric to adult care for adolescents and emerging adults EAs with type 1 diabetes given the potential for poor health outcomes post-transfer. This study evaluated self-reported confidence ratings as measured by the Readiness of Emerging Adults with Diabetes Diagnosed in Youth (READDY) tool among adolescents and EAs with type 1 diabetes and the association of the confidence ratings with clinical and demographic characteristics, as well as provider documentation of relevant anticipatory guidance topics. The READDY is a diabetes-specific tool used to collect patient-reported confidence in transition preparation topics to target educational interventions. These interventions are divided into four domains: Diabetes Knowledge, Health System Navigation, Insulin Self-Management, and Health Behaviors. A retrospective chart review was conducted of patients 15–24 years of age with type 1 diabetes who completed the READDY between January 2017 and January 2018 at a single center. Overall patient-reported confidence levels were high. However, adolescents and EAs endorsed their lowest levels of confidence on items assessing knowledge of alcohol, tobacco, sexual health, and the impact of diabetes on pregnancy (females only), with the percentages of low scores of 20.7, 25.9, 35.9, and 42.9%, respectively. Documentation of provider counseling about screening and prevention of diabetes comorbidities, alcohol use, and tobacco use was associated with scores in the higher range for the corresponding item in the READDY. These findings highlight an opportunity to create interventions related to developmentally important topics for adolescents and EAs with type 1 diabetes to enhance successful transition preparation.

Assessing preparation for care transition among adolescents with rheumatologic disease: a single-center assessment with patient survey

Background Despite the risk for poor outcomes and gaps in care in the transfer from pediatric to adult care, most pediatric rheumatology centers lack formal transition pathways. As a first step in designing a pathway, we evaluated preparation for transition in a single-center cohort of adolescents and young adults (AYA) with rheumatologic conditions using the ADolescent Assessment of Preparation for Transition (ADAPT) survey. Findings AYA most frequently endorsed receiving counseling on taking charge of their health and remembering to take medications. Less than half reported receiving specific counseling about transferring to an adult provider. AYA with lower education attainment compared with those who had attended some college or higher had lower scores in self-management (1.51 vs 2.52, p = 0.0002), prescription medication counseling (1.96 vs 2.41, p = 0.029), and transfer planning (0.27 vs 1.62, p < 0.001). AYA with a diagnosis of MCTD, Sjögren’s or SLE had higher self-management scores than those with other diagnoses (2.6 vs 1.9; p = 0.048). Non-white youth indicated receiving more thorough medication counseling than white youth (2.71 vs 2.07, p = 0.027). When adjusting for age, educational attainment remained an independent predictor of transfer planning (p = 0.037). AYA with longer duration of seeing their physician had higher transition preparation scores (p = 0.021). Conclusion Few AYA endorsed receiving comprehensive transition counseling, including discussion of transfer planning. Those who were younger and with lower levels of education had lower preparation scores. A long-term relationship with providers was associated with higher scores. Further research, including longitudinal assessment of transition preparation, is needed to evaluate effective processes to assist vulnerable populations.