Patient, caregiver and other knowledge user engagement in consensus-building healthcare initiatives: a scoping review protocol.

INTRODUCTION: Patient engagement and integrated knowledge translation (iKT) processes improve health outcomes and care experiences through meaningful partnerships in consensus-building initiatives and research. Consensus-building is essential for engaging a diverse group of experienced knowledge users in co-developing and supporting a solution where none readily exists or is less optimal. Patients and caregivers provide invaluable insights for building consensus in decision-making around healthcare, policy and research. However, despite emerging evidence, patient engagement remains sparse within consensus-building initiatives. Specifically, our research has identified a lack of opportunity for youth living with chronic health conditions and their caregivers to participate in developing consensus on indicators/benchmarks for transition into adult care. To bridge this gap and inform our consensus-building approach with youth/caregivers, this scoping review will synthesise the extent of the literature on patient and other knowledge user engagement in consensus-building healthcare initiatives. METHODS AND ANALYSIS: Following the scoping review methodology from Joanna Briggs Institute, published literature will be searched in MEDLINE, EMBASE, CINAHL and PsycINFO databases from inception to July 2023. Grey literature will be hand-searched. Two independent reviewers will determine the eligibility of articles in a two-stage process, with disagreements resolved by a third reviewer. Included studies must be consensus-building studies within the healthcare context that involve patient engagement strategies. Data from eligible studies will be extracted and charted on a standardised form. Abstracted data will be analysed quantitatively and descriptively, according to specific consensus methodologies, and patient engagement models and/or strategies. ETHICS AND DISSEMINATION: Ethics approval is not required for this scoping review protocol. The review process and findings will be shared with and informed by relevant knowledge users. Dissemination of findings will also include peer-reviewed publications and conference presentations. The results will offer new insights for supporting patient engagement in consensus-building healthcare initiatives. PROTOCOL REGISTRATION: https://osf.io/beqjr.

Experiences of youth growing up with anorectal malformation or Hirschsprung's disease: a multicenter qualitative in-depth interview study.

PURPOSE: Patients with anorectal malformation (ARM) and Hirschsprung's disease (HD) live with long-term impact of these diseases even into adulthood. We aimed to explore the physical, social and emotional impact of these diseases in adolescents and young adults to develop best practices for transition care. METHODS: We conducted one-on-one in-depth interviews with ARM and HD patients aged ≥ 11 years who had undergone surgery at four tertiary referral centers. All interviews were audio-recorded and transcribed verbatim. We analyzed transcripts for recurring themes, and data were collected until data saturation was reached. Three researchers independently coded the transcripts for major themes using thematic analysis approach. RESULTS: We interviewed 16 participants (11 males) between October 2022 and April 2023. Ages ranged from 11 to 26 years. Five major themes emerged: (1) personal impact (subthemes: physical, emotional and mental health, social, school), (2) impact on family, (3) perceptions of their future (subthemes: relationships, career, state of health), (4) sources of support (subthemes: family, peers, partner), and (5) transition care (subthemes: concerns, expectations). Only females expressed concerns regarding future fertility. CONCLUSION: This study highlights the evolving problems faced by adolescents and young adults with ARM and HD, especially gender-specific concerns. Our findings can inform efforts to provide individualized care.

Transitions of care: An aerodigestive provider assessment survey.

OBJECTIVE: To create, validate, and apply an aerodigestive provider assessment survey. METHODS: A survey assessing provider knowledge and current practice in the transition of patients with chronic aerodigestive disorders from pediatric to adult care was drafted by a multidisciplinary expert panel. Once agreement of the initial survey items was obtained, the survey was distributed to a national multidisciplinary panel of aerodigestive experts for review. Responses from the national panel were systematically quantified and a content validity index (CVI) was calculated. A final survey was developed and distributed to pediatric and adult aerodigestive providers. RESULTS: From the initial 22 items presented to the national panel, 20 of the initial questions were included in the final instrument. Two additional questions were developed as a result of feedback from the expert panel. All items included in the survey had an Item Content Validity Index (I-CVI) of >0.85. The average Scale CVI in proportion to the average proportion of relevance (S-CVI/Ave) for the tool was 0.88. The average Scale CVI in proportion to universal agreement (S-CVI/UA) was 0.52. The survey was then administered to pediatric and adult specialty providers at our institution. Twenty-two providers completed the final survey. CONCLUSION: The content validity index measurements from this newly developed survey suggest that it is a valid tool for assessing current knowledge and practice in care transitions among patients with complex aerodigestive needs. The survey developed in this project has been used to identify knowledge gaps and process issues that can be addressed to ease the transition of adolescents from pediatric specialty care into adult specialty care.

[Discharge of infants with complex care needs from the neonatal intensive care unit : Ensuring continued inpatient care via the Bunter Kreis aftercare model]. / Entlassung von Kindern mit komplexen Versorgungsbedarfen von der neonatologischen Intensivstation : Sicherung der stationären Anschlussversorgung durch das Nachsorgemodell des Bunten Kreises e. V.

After discharge of premature infants with complex care needs from the neonatal intensive care unit, a care gap arises due to the transition from inpatient to outpatient care. Consequences can be rehospitalization, revolving door effects, and high costs. Therefore, following hospitalization or inpatient rehabilitation, the patient is intended to transition to sociomedical aftercare. The legal basis for this is formed by § 43 paragraph 2 of the Fifth Book of the German Social Code (SGB V). Over 80 aftercare institutions in Germany work according to the model of the Bunter Kreis. The comprehensive concept describes possibilities for networking which exceed the services provided by sociomedical aftercare. Simultaneously, depending on their stage of development, young adults can receive aftercare according to this model up to their 27th year of life. The interdisciplinary team at the Bunter Kreis comprises nurses, social workers, social education workers, psychologists, and specialist physicians. The largest group of supported persons, with 6000-8000 children per year, is comprised of premature and at-risk babies as well as multiple births, followed by 3000-5000 children with neurologic and syndromic diseases. Other common diseases are metabolic diseases, epilepsy, and diabetes, as well as children after trauma and with rare diseases. Overall, the various diseases sum up to around 20 clinical pictures. The current article presents the Bunter Kreis aftercare process based on case examples.

[Transition in sickle cell disease - recommendations of the transition initiative sickle cell disease]. / Transition bei der Sichelzellkrankheit ­ Empfehlungen der Transitionsinitiative Sichelzellkrankheit.

Sickle cell disease is a rare, but complex multi-systemic disorder with high need of interdisciplinary and specialized care and new structural requirements. Besides care of those chronically sick patients, transition process is a vulnerable phase which highly influences further treatment. To make matters worse, patients often have migration background with subsequent communication problems. A national guidance for a standardized transition process is lacking in Germany. In context of a structured consensus process, the "transition initiative sickle cell disease" developed specific recommendations for a structured transition of sickle cell patients on the basis of the S3 transition guideline of the DGfTM. These recommendations should improve this vulnerable process in this complex disease to ensure adequate further treatment and to avoid acute and chronic complications but also mental, social or job-related issues. Besides improvement of quality of life, medical treatment and survival, health economic aspects arise. Documents were developed to support and facilitate the transition process and are available under www.sichelzellkrankheit.info/transition/.

[Transitional urology-current status and prospects of pediatric over-age practice].

With the continuous advancement of medicine, more children with congenital or pediatric-onset chronic urologic conditions are surviving well into adulthood, which imposes an ever-rising need for adequate transition of these patients from pediatric to adult care. Transitional Urology focuses on the health care needs of adolescents and young adults with congenital urological disorders as they transfer from pediatric to adult care, maximizing the best interests of the children. Since Shanghai Children's Medical Center has been approved for over-age continuous medical care, this paper aims to analyze the currently perceived barriers in care transition within the urological context, explore the ways of previously implemented transition models, and propose the suggestions for improvement.

Transition from pediatrics to adult health care in girls with turner syndrome.

INTRODUCTION: Turner Syndrome is a rare condition secondary to a complete or partial loss of one X chromosome, leading to a wide spectrum of clinical manifestations. Short stature, gonadal dysgenesis, cardiovascular malformations, and dysmorphic features characterize its common clinical picture. AREAS COVERED: The main endocrine challenges in adolescent girls with Turner Syndrome are puberty induction (closely intertwined with growth) and fertility preservation. We discuss the most important clinical aspects that should be faced when planning an appropriate and seamless transition for girls with Turner Syndrome. EXPERT OPINION: Adolescence is a complex time for girls and boys: the passage to young adulthood is characterized by changes in the social, emotional, and educational environment. Adolescence is the ideal time to encourage the development of independent self-care behaviors and to make the growing girl aware of her health, thus promoting healthy lifestyle behaviors. During adulthood, diet and exercise are of utmost importance to manage some of the common complications that can emerge with aging. All clinicians involved in the multidisciplinary team must consider that transition is more than hormone replacement therapy: transition in a modern Healthcare Provider is a proactive process, shared between pediatric and adult endocrinologists.

The Indian Academy of Pediatrics and Directorate General of Health Services, Government of India White Paper on Transition of Care for Youth with Special Health Care Needs.

Over the years, survival of children with chronic diseases has significantly improved and a large proportion of them now are entering into adulthood. Transition of Care (ToC) of such patients with having childhood onset of chronic diseases to the adult health care system is well organized in developed countries, although it is an emerging concept in India. In situations where the systems for ToC are not in place, such cases are fraught with unsatisfactory health outcomes. With proper ToC in place, these patients are likely to receive uninterrupted care by the adult care physicians and hence reach their full potential. This document highlights the need, rationale and way forward for ToC of youth with special health care needs (YSHCN) across the country. It also describes the standard operating procedures to develop the ToC at a hospital level for clinicians and administrators.

Transitional Medicine of Intractable Primary Dyslipidemias in Japan.

Transitional medicine refers to the seamless continuity of medical care for patients with childhood-onset diseases as they grow into adulthood. The transition of care must be seamless in medical treatment as the patients grow and in other medical aids such as subsidies for medical expenses in the health care system. Inappropriate transitional care, either medical or social, directly causes poorer prognosis for many early-onset diseases, including primary dyslipidemia caused by genetic abnormalities. Many primary dyslipidemias are designated as intractable diseases in the Japanese health care system for specific medical aids, as having no curative treatment and requiring enormous treatment costs for lipid management and prevention of complications. However, there are problems in transitional medicine for primary dyslipidemia in Japan. As for the medical treatment system, the diagnosis rate remains low due to the shortage of specialists, their insufficient link with generalists and other field specialists, and poor linkage between pediatricians and physicians for adults. In the medical care system, there is a mismatch of diagnostic criteria of primary dyslipidemias between children and adults for medical care expense subsidization, as between The Program for the Specific Pediatric Chronic Diseases and the Program for Designated Adult Intractable Diseases. This could lead some patients subsidized in their childhood to no longer be under the coverage of the aids after transition. This review intends to describe these issues in transitional medicine of primary dyslipidemia in Japan as a part of the efforts to resolve the problems by the Committee on Primary Dyslipidemia under the Research Program on Rare and Intractable Disease of the Ministry of Health, Labour and Welfare of Japan.

Two Case Reports on Financial Toxicity and Healthcare Transitions in Adolescent and Young Adult Cancer Survivors.

A team conducted semistructured interviews and developed case reports about financial toxicity (FT) and healthcare transitions (HCTs) with two adolescent and young adult (AYA) cancer survivors. These reports found poor HCTs f.

Experience of pediatric to adult transition in immunology services: patient experience questionnaire and micro-costing analysis.

The effective transition from pediatric to adult care for individuals with chronic medical conditions should address the medical, psychosocial and educational needs of the cohort. The views and experiences of service users and their families are an integral component of service development. This study sought to evaluate the current provision of transition services from pediatric immunology services to adult immunology services for patients with a diagnosis of an inborn error of immunity at St. James's Hospital, Dublin. We gathered patient perspectives on the experience of the transition process using a structured survey. In addition, we adopted a micro-costing technique to estimate the cost of implementing the current standard of care for these patients. Results of a micro-costing analysis suggest that the most significant component of cost in assessing these patients is on laboratory investigation, an area where there is likely significant duplication between pediatric and adult care. Perspectives from patients suggested that the transition period went well for the majority of the cohort and that they felt ready to move to adult services, but the transition was not without complications in areas such as self-advocacy and medication management. The transition process may benefit from enhanced communication and collaboration between pediatric and adult services.

The effectiveness of an education program based on healthcare transition in adolescents with asthma: A randomized controlled trial.

BACKGROUND: Adolescents diagnosed with asthma make a transition to adult care when they reach a certain age. Besides, these adolescents need specialized education for them to become autonomous, competent, and adult patients and gain the necessary knowledge and skills related to their disease. In this study, by using a prospective randomized controlled trial design, we evaluated the effectiveness of an education program based on healthcare transition provided to adolescents diagnosed with asthma. METHODS: After obtaining the consent of adolescents and their parents, 52 adolescents aged between 14 and 18 years who were diagnosed with asthma were randomly assigned to the intervention group (individual four face-to-face and six online education sessions) or the control group (standard care). The primary outcome was the differences between the Transition Readiness Assessment Questionnaire (TRAQ) scores of the two groups. The secondary outcomes included the differences between the Self-Efficacy Scale for Children and Adolescents with Asthma and Mind the Gap scores of the two groups. The outcomes were measured at two different time points: baseline (first assessment; Week 0) and immediately after the intervention (last assessment; Week 12). RESULTS: In the initial evaluations, there was no significant difference between the groups in terms of the primary or secondary outcomes (p > .05). In the final assessments, the TRAQ (Z = -4.740, p < .001) and Self-Efficacy Scale for Children and Adolescents with Asthma (t = 6.344, p < .001) scores of the intervention group were found to be significantly higher than the scores of the control group, while their Mind the Gap Scale scores were significantly lower (t = 6.146, p < .001). CONCLUSION: It was determined that the educational intervention integrated with pediatric care based on readiness for transition from pediatric care to adult care was effective in increasing the transition readiness and self-efficacy of the adolescents. The study was registered at ClinicalTrials.gov with the ID code NCT05550922.

Assessing the readiness to transition to adult care, perceived medication barriers, and glycemic control among teens with type 1 diabetes.

AIM: This study assessed the readiness to transition (RT) from pediatric to adult care, perceived medication barriers (PMB), and glycemic control in teens with type one diabetes (T1D). BACKGROUND: During the transition from pediatric to adult care, teens with T1D are at risk of long-term complications related to impaired adherence. With the increasing prevalence of T1D in Saudi Arabia, research is required to identify the challenges facing teens with T1D during their transition. METHODS: This was a cross-sectional study with a convenient sample of 83 adolescents (12-17 years old) diagnosed with T1D for ≥6 months, their parents, and their pediatric endocrinologists from the pediatric endocrinology clinic in a tertiary hospital in Riyadh. The RT Questionnaire was used to measure RT, and the Medication Barriers Scale was used to measure PMB. Glycemic control was measured using hemoglobin A1c (HbA1c). RESULTS: About 96 % of teens had HbA1c > 7 %. Male teens had higher HbA1c than female teens. Teens and their parents reported high PMB and low RT. PMB (teens), disease duration, family history of diabetes mellitus, and comorbidity were significant predictors of RT (parents). PMB (teens), teens' age, and having a family history of diabetes mellitus were significant predictors of RT (providers). RT (parents) and RT (providers) were the only significant predictors of HbA1c, with RT (providers) being the strongest predictors of HbA1c. CONCLUSIONS: Health policy reform is required to develop national RT programs to prepare teens with T1D to take full responsibility for managing their medical conditions while ensuring adherence.

Transition readiness of adolescents with cancer: A cross-sectional study based on self-determination theory.

PURPOSE: This study aimed to assess the transition readiness of adolescents with cancer in central China and to explore the paths associated with transition readiness based on self-determination theory (SDT). METHODS: Self-management and transition to adulthood with Rx = treatment questionnaire, patient activation measure, perceived social support scale and general self-efficacy scale were used to measure transition readiness as well as constructs pertaining to SDT (competence, relatedness and autonomy). The factors influencing transition readiness were evaluated using multiple linear regression. Models 4 and 6 in PROCESS Macro 3.3 were used to test the mediating effects and chain mediating effects, respectively. RESULTS: A total of 217 adolescents with cancer were included; their mean transition readiness score was 59.95 (11.34). Age (t = 6.086, p < 0.000), duration of diagnosis (t = 2.218, p = 0.028), completion of treatment (t = -2.036, p = 0.043), insurance, and competence (t = 11.149, p < 0.000) were significantly associated with transition readiness. The direct effects of self-efficacy and perceived social support on transition readiness were not significant. However, two chain mediating paths were observed: perceived social support - self-efficacy - patient activation - transition readiness and self-efficacy - perceived social support - patient activation - transition readiness; the effect values of these paths were 0.0678 and 0.0703, respectively. CONCLUSIONS: The findings of this study add to the evidence supporting the use of SDT-related constructs to promote transition readiness among adolescents with cancer, highlight the importance of encouraging patient activation, and clarify the ancillary roles of social support and self-efficacy in patient activation development during transitional period.

Sex-based trajectories of health system use in lonely and not lonely older people: A population-based cohort study.

BACKGROUND: There is growing interest in understanding the care needs of lonely people but studies are limited and examine healthcare settings separately. We estimated and compared healthcare trajectories in lonely and not lonely older female and male respondents to a national health survey. METHODS: We conducted a retrospective cohort study of community-dwelling, Ontario respondents (65+ years) to the 2008/2009 Canadian Community Health Survey-Healthy Aging. Respondents were classified at baseline as not lonely, moderately lonely, or severely lonely using the Three-Item Loneliness Scale and then linked with health administrative data to assess healthcare transitions over a 12 -year observation period. Annual risks of moving from the community to inpatient, long-stay home care, long-term care settings-and death-were estimated across loneliness levels using sex-stratified multistate models. RESULTS: Of 2684 respondents (58.8% female sex; mean age 77 years [standard deviation: 8]), 635 (23.7%) experienced moderate loneliness and 420 (15.6%) severe loneliness. Fewer lonely respondents remained in the community with no transitions (not lonely, 20.3%; moderately lonely, 17.5%; and severely lonely, 12.6%). Annual transition risks from the community to home care and long-term care were higher in female respondents and increased with loneliness severity for both sexes (e.g., 2-year home care risk: 6.1% [95% CI 5.5-6.6], 8.4% [95% CI 7.4-9.5] and 9.4% [95% CI 8.2-10.9] in female respondents, and 3.5% [95% CI 3.1-3.9], 5.0% [95% CI 4.0-6.0], and 5.4% [95% CI 4.0-6.8] in male respondents; 5-year long-term care risk: 9.2% [95% CI 8.0-10.8], 11.1% [95% CI 9.3-13.6] and 12.2% [95% CI 9.9-15.3] [female], and 5.3% [95% CI 4.2-6.7], 9.1% [95% CI 6.8-12.5], and 10.9% [95% CI 7.9-16.3] [male]). CONCLUSIONS: Lonely older female and male respondents were more likely to need home care and long-term care, with severely lonely female respondents having the highest probability of moving to these settings.

Resource utilization and costs of transitioning from pediatric to adult care for patients with chronic autoinflammatory and autoimmune disorders.

BACKGROUND: A structured transition of adolescents and young adults with chronic autoinflammatory and autoimmune disorders from the pediatric to the adult health care system is important. To date, data on the time, processes, outcome, resources required for the necessary components of the transition process and the associated costs are lacking. METHODS: Evaluation of resource use and costs in a prospective cohort study of 58 adolescents with chronic autoinflammatory and autoimmune disorders, for the key elements of a structured transition pathway including (i) compilation of a summary of patient history, (ii) assessment of patients' disease-related knowledge and needs, (iii) required education and counseling sessions, (iv) and a transfer appointment of the patient with the current pediatric and the future adult rheumatologist. RESULTS: Forty-nine of 58 enrolled patients (84.5%) completed the transition pathway and were transferred to adult care. The mean time from the decision to start the transition process to the final transfer consultation was 315 ± 147 days. Transfer consultations were performed in 49 patients, including 10 patients jointly with the future adult rheumatologist. Most consultations were performed by the multidisciplinary team with a median of three team members and lasted 65.5 ± 21.3 min. The cumulative cost of all consultation and education sessions performed including the transfer appointment was 283 ± 164 Euro per patient. In addition, the cost of coordinating the transition process was 57.3 ± 15.4 Euro. CONCLUSIONS: A structured transition pathway for patients with chronic autoinflammatory and autoimmune disorders is resource and time consuming and should be adequately funded.

[A consensus report by the Working Group on Eating Disorders of Sociedad Española de Nutrición Clínica y Metabolismo (GTTCA-SENPE). Evaluation, medical and nutritional management of anorexia nervosa. Update 2023]. / Consenso del grupo de trabajo de los trastornos de la conducta alimentaria de SENPE (GTTCA-SENPE). Evaluación y tratamiento médico-nutricional en la anorexia nerviosa. Actualización 2023.

Introduction: Anorexia nervosa (AN) is a multifactorial disorder. A possible role of the social network and the gut microbiota in pathogenesis has been added. Exogenous shocks such as the COVID19 pandemic have had a negative impact on patients with AN. The potential medical and nutritional impact of malnutrition and/or compensatory behaviors gives rise to a complex disease with a wide range of severity, the management of which requires a multidisciplinary team with a high level of subject matter expertise. Coordination between levels of care is necessary as well as understanding how to transition the patient from pediatric to adult care is essential. A proper clinical evaluation can detect possible complications, as well as establish the organic risk of the patient. This allows caregivers to tailor the medical-nutritional treatment for each patient. Reestablishing adequate nutritional behaviors is a fundamental pillar of treatment in AN. The design of a personalized nutritional treatment and education program is necessary for this purpose. Depending on the clinical severity, artificial nutrition may be necessary. Although the decision regarding the level of care necessary at diagnosis or during follow-up depends on a number of factors (awareness of the disease, medical stability, complications, suicidal risk, outpatient treatment failure, psychosocial context, etc.), outpatient treatment is the most frequent and most preferred choice. However, more intensive care (total or partial hospitalization) may be necessary in certain cases. In severely malnourished patients, the appearance of refeeding syndrome should be prevented during renourishment. The presence of AN in certain situations (pregnancy, vegetarianism, type 1 diabetes mellitus) requires specific care. Physical activity in these patients must also be addressed correctly.

Introducción: La anorexia nerviosa (AN) es una enfermedad de origen multifactorial. Recientemente se ha sumado el papel de las redes sociales y la microbiota intestinal en la patogenia. La pandemia por COVID-19 ha tenido un impacto negativo en los pacientes con AN. La potencial afectación médica y nutricional derivada de la desnutrición o las conductas compensatorias dan lugar a una compleja enfermedad de gravedad variable, cuyo manejo precisa un equipo multidisciplinar con elevado nivel de conocimientos en la materia. Es fundamental la coordinación entre niveles asistenciales y en la transición de pediatría a adultos. Una adecuada valoración clínica permite detectar eventuales complicaciones, así como establecer el riesgo orgánico del paciente y, por tanto, adecuar el tratamiento médico-nutricional de forma individualizada. El restablecimiento de un apropiado estado nutricional es un pilar fundamental del tratamiento en la AN. Para ello es necesario diseñar una intervención de renutrición individualizada que incluya un programa de educación nutricional. Según el escenario clínico puede ser necesaria la nutrición artificial. Aunque la decisión de qué nivel de atención escoger al diagnóstico o durante el seguimiento depende de numerosas variables (conciencia de enfermedad, estabilidad médica, complicaciones, riesgo autolítico, fracaso del tratamiento ambulatorio o contexto psicosocial, entre otros), el tratamiento ambulatorio es de elección en la mayoría de las ocasiones. No obstante, puede ser necesario un escenario más intensivo (hospitalización total o parcial) en casos seleccionados. En pacientes gravemente desnutridos debe prevenirse la aparición de un síndrome de alimentación cuando se inicia la renutrición. La presencia de una AN en determinadas situaciones (gestación, vegetarianismo, diabetes mellitus de tipo 1, etc.) exige un manejo particular. En estos pacientes también debe abordarse de forma correcta el ejercicio físico.

Parental entrustment of healthcare responsibilities to youth with chronic conditions: A concept analysis.

PURPOSE: Chronic health conditions impact nearly 40% of children in the United States, necessitating parents/caregivers to entrust healthcare responsibilities to youth aging into adulthood. Understanding the parental entrustment process may lead to tailored transition support; however, the concept lacks conceptual clarity, limiting its research and practical applications. DESIGN AND METHODS: Rodgers' evolutionary concept analysis method was used to clarify the parental entrustment of healthcare responsibilities to youth with chronic health conditions. PubMed, CINAHL, and PsycINFO databases were searched without date restrictions, including full-text, English-language, primary source articles related to parent-child healthcare transition preparation. Following title, abstract, and full-text screenings, data were analyzed using a hybrid thematic approach to identify antecedents, attributes, and consequences. RESULTS: Forty-three studies from August 1996 to September 2023 were identified. Antecedents encompass social cues and readiness factors, while attributes involve a) responsibility transfer, support, and facilitation, b) a dynamic process, c) balancing trust and fear, d) navigating conflict, and e) parental letting go. Consequences entail shifts in parental and adolescent roles. Parental entrustment is an iterative process wherein parents guide their maturing child through responsibility transfer via facilitation, support, conflict navigation, and trust building. CONCLUSION: The clarified concept underscores the role of parents/caregivers in empowering youth to manage their health. Introducing a working definition and conceptual model contributes to understanding the processes families navigate in the larger landscape of healthcare transition. PRACTICE IMPLICATIONS: This clarification holds implications for clinicians and policymakers, offering insights to enhance support and guidance for families navigating healthcare transition.

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.

Estimating the costs of adolescent HIV care visits and an intervention to facilitate transition to adult care in Kenya.

INTRODUCTION: Adolescents with HIV in sub-Saharan Africa face challenges transitioning to adult HIV care, which can affect long-term HIV care adherence and retention. An adolescent transition package (ATP) focused on transition tools can improve post-transition clinical outcomes, but its implementation costs are unknown. METHODS: We estimated the average cost per patient of an HIV care visit and ATP provision to adolescents. Data was collected from 13 HIV clinics involved in a randomized clinical trial evaluating ATP in western Kenya. We conducted a micro-costing and activity-driven time estimation to assess costs from the provider perspective. We developed a flow-map, conducted staff interviews, and completed time and motion observation. ATP costs were estimated as the difference in average cost for an HIV care transition visit in the intervention compared to control facilities. We assessed uncertainty in costing estimates via Monte Carlo simulations. RESULTS: The average cost of an adolescent HIV care visit was 29.8USD (95%CI 27.5, 33.4) in the standard of care arm and 32.9USD (95%CI 30.5, 36.8) in the ATP intervention arm, yielding an incremental cost of 3.1USD (95%CI 3.0, 3.4) for the ATP intervention. The majority of the intervention cost (2.8USD) was due ATP booklet discussion with the adolescent. CONCLUSION: The ATP can be feasibly implemented in HIV care clinics at a modest increase in overall clinic visit cost. Our cost estimates can be used to inform economic evaluations or budgetary planning of adolescent HIV care interventions in Kenya.