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OBJECTIVE: To explore the mental health experiences of adolescents and young adults (AYA) with inflammatory bowel disease (IBD) enrolled in a randomized controlled trial evaluating the impact of a multimodal transition intervention. STUDY DESIGN: Virtual semistructured interviews were held with 21 AYA aged 16 through 18 years with IBD. Guided by qualitative description, interviews were digitally recorded, transcribed verbatim, and analyzed using an inductive approach to reflexive thematic analysis. RESULTS: Three themes were generated from the data: (1) a continuum of integration between IBD and personal identity in adolescence and young adulthood; (2) manifestations of the mind-gut connection among AYA with IBD; and (3) hopes and priorities for addressing mental health in IBD care. CONCLUSIONS: AYA with IBD endorsed the criticality of incorporating mental health discussions into routine care during the transition to adult care, given the co-occurrence of psychosocial stressors throughout this period. A series of factors promoting and hindering the integration of IBD into one's identity were identified and could be explored in clinical encounters.
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OBJECTIVE: Structured transition of adolescents and young adults with a chronic endocrine disease from paediatric to adult care is important. Until now, no data on time and resources required for the necessary components of the transition process and the associated costs are available. DESIGN, PATIENTS AND MEASUREMENTS: In a prospective cohort study of 147 patients with chronic endocrinopathies, for the key elements of a structured transition pathway including (i) assessment of patients' disease-related knowledge and needs, (ii) required education and counselling sessions, (iii) compiling an epicrisis and a transfer appointment of the patient together with the current paediatric and the future adult endocrinologist resource consumption and costs were determined. RESULTS: One hundred and forty-three of 147 enroled patients (97.3%) 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 399 ± 159 days. Transfer consultations were performed in 143 patients, including 128 patients jointly with the future adult endocrinologist. Most consultations were performed by a multidisciplinary team consisting of a paediatric and adult endocrinologist, psychologist, nurse, and a social worker acting also as a case manager with a median of three team members and lasted 87.6 ± 23.7 min. The mean cumulative costs per patient of all key elements were 519 ± 206 Euros. In addition, costs for case management through the transition process were 104.8 ± 28.0 Euros. CONCLUSIONS: Using chronic endocrine diseases as an example, it shows how to calculate the time and cost of a structured transition pathway from paediatric to adult care, which can serve as a starting point for sustainable funding for other chronic rare diseases.
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Doenças do Sistema Endócrino , Transição para Assistência do Adulto , Humanos , Adolescente , Doenças do Sistema Endócrino/terapia , Doenças do Sistema Endócrino/economia , Transição para Assistência do Adulto/economia , Masculino , Feminino , Adulto Jovem , Adulto , Estudos Prospectivos , Doença Crônica/economia , Criança , Custos de Cuidados de SaúdeRESUMO
Telehealth is an emerging approach that uses technology to provide healthcare remotely. Recent publications have outlined the importance of supporting the transition to self-management of adolescents with allergic conditions. However, no synthesis of the evidence base on the use and impact of telehealth interventions for this purpose has been conducted to date. This review achieves these aims, in addition to exploring the language use surrounding these interventions, and their implementation. Four databases were searched systematically. References were independently screened by two reviewers. Methodological quality was assessed using the Mixed Methods Appraisal Tool. A narrative synthesis was undertaken. Eighteen articles were included, reporting on 15 telehealth interventions. A total of 86% targeted adolescents with asthma. Mobile applications were the most common telehealth modality used, followed by video-conferencing, web-based, virtual reality and artificial intelligence. Five intervention content categories were identified; educational, monitoring, behavioural, psychosocial and healthcare navigational. Peer and/or healthcare professional interaction, gamification and tailoring may increase engagement. The studies showed positive effects of the interventions or no difference from active controls, in self-management outcomes such as knowledge, health outcomes such as quality-of-life, and economic outcomes such as healthcare utilization. The most common implementation outcomes reported were acceptability, appropriateness, feasibility and fidelity.
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Asma , Autogestão , Telemedicina , Humanos , Adolescente , Inteligência Artificial , Telemedicina/métodos , Atenção à SaúdeRESUMO
AIMS: Evidence is lacking on whether diabetes duration is associated with type 1 diabetes (T1D) self-management during late adolescence before transfer from paediatric to adult care. We examined associations of diabetes duration with dimensions of perceived comfort with diabetes self-management (self-efficacy, transition readiness, diabetes distress) and glycaemic control in late adolescence. METHODS: Using a cross-sectional design, we conducted a secondary analysis of baseline data of adolescents (ages 16-17 years) with T1D followed at paediatric diabetes academic hospitals in Montreal and enrolled in the Group Education Trial to Improve Transition (GET-IT-T1D). Participants completed validated questionnaires on self-efficacy (Self-Efficacy for Diabetes Self-Management Measure [SEDM], score 1 to 10), diabetes distress and transition readiness, as well as a haemoglobin (HbA1c) capillary blood test. Our primary outcome was self-efficacy. We examined associations of diabetes duration with self-efficacy, diabetes distress, transition readiness and HbA1c using linear and logistic regression models adjusted for sex, socioeconomic status, insulin pump use, glucose sensor use and psychiatric comorbidity. RESULTS: Of 203 adolescents with T1D, mean diabetes duration (SD) was 7.57 (4.44) years. Mean SEDM score was 6.83 (SD 1.62). Diabetes duration was not associated with self-efficacy, diabetes distress or transition readiness. Each additional year of diabetes duration was associated with 0.11% (95% CI, 0.05 to 0.16) higher HbA1c. CONCLUSIONS: Although diabetes duration is not associated with dimensions of perceived comfort with diabetes self-management, adolescents with longer diabetes duration are at risk for higher HbA1c and may need additional support to improve glycaemic control before transition to adult care.
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Diabetes Mellitus Tipo 1 , Autogestão , Transição para Assistência do Adulto , Adulto , Humanos , Adolescente , Criança , Estudos Transversais , Hemoglobinas Glicadas , Controle Glicêmico , GlicemiaRESUMO
BACKGROUND: The process of transition to adult-based care encompasses a critical period in the life of an adolescent and young adult living with a chronic illness and one that comes with an increase in the risk of poor health outcomes. As yet, there is a dearth of empirical data to help optimize this process to ensure the best long-term outcome. METHODS: This study used a principal components analysis to determine specific constructs measured by a revised version of the transition readiness survey used in our clinic. We investigated changes in these constructs over time. We further investigated the relationship between the change in these constructs over time spent in a focused transition program with adherence. RESULTS: The primary component underlying our transition readiness survey for patients and parents represented self-efficacy. Time spent in the transition program was an independent predictor of change in self-efficacy (rho 0.299, p = .015); however, the magnitude of that change had no relationship to adherence. Change in parent-proxy self-efficacy was found to have a statistically significant relationship with tacrolimus standard deviation (rho -0.301, p = .026). There was disagreement identified between patient and parent responses on the survey. Neither change in patient nor parent reports of self-efficacy was found to have a relationship with post-transfer adherence. CONCLUSIONS: This study reaches the novel conclusion that self-efficacy and parent-proxy self-efficacy are dynamic concepts that change over time spent in a focused transition program. The patient-parent disagreement and the relationship between parent-proxy self-efficacy and adherence stress the importance of involving parents/guardians in the transition process as well.
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Transplante de Fígado , Transição para Assistência do Adulto , Adolescente , Adulto Jovem , Humanos , Criança , Autoeficácia , Inquéritos e QuestionáriosRESUMO
The transition from pediatric to adult health care is a vulnerable period for adolescents and young adults (AYA) with chronic conditions as it involves a multitude of changes and challenges while they enter adulthood. The transition to adult care can be particularly challenging for AYA living with chronic kidney disease (CKD) due to the complex care needed for treatment. Continuity of care is crucial for a successful transition to adult health care. The aim of this educational review is to discuss the potential role of primary care providers in the transition from pediatric to adult health services for AYA with CKD and kidney failure treated with dialysis and/or transplant. We address the significance of the medical home model and how it can provide continuity of care for AYA with CKD. Primary care providers can enhance care for AYA with chronic conditions by providing continuity of care, reducing exacerbation of chronic health conditions, providing holistic care, and fostering collaboration with specialists. Despite their vital role, primary care providers face barriers in maintaining this continuity, necessitating further attention and support in this area. By addressing these barriers and encouraging primary care providers to work alongside pediatric and adult nephrologists during the transition to adult health care, there are significant opportunities to improve the care and health outcomes of AYA with CKD.
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Insuficiência Renal Crônica , Transição para Assistência do Adulto , Humanos , Adolescente , Adulto Jovem , Criança , Adulto , Diálise Renal , Insuficiência Renal Crônica/terapia , Doença Crônica , NefrologistasRESUMO
INTRODUCTION: The Child and Adult Care Food Program (CACFP) provides reimbursement for meals and snacks offered in participating centers and issues nutrition standards, including guidelines for feeding infants in childcare settings. Offering training to childcare providers participating in the CACFP is necessary to ensure compliance with nutrition standards in childcare settings. METHODS: A State Department of Education and University Extension system collaborated to develop an online nutrition training course for childcare providers. Providers (n = 57) participated in the course on CACFP nutrition standards related to feeding infants (0-12 months of age). Thirty-two of 57 participants completed both pre- and post-training surveys that were used to assess changes in knowledge and confidence concerning infant feeding standards. Paired t-tests and Wilcoxon signed-rank tests were conducted to assess differences in survey responses before and after the course. RESULTS: Self-confidence and knowledge of providers related to infant feeding were significantly increased after completion of the training course (p < 0.001). More participants reported their sites were likely to respond to infants showing they were hungry or full than before the course (44.4% vs. 75.7%, respectively). Participant feedback indicated the online asynchronous course was convenient, useful, and topics were relevant to training needs. DISCUSSION: The online course was feasible and effective for providing training on CACFP guidelines for childcare providers. Feedback from participants can be adapted and used for future training programs to further improve the course and delivery methods and efficiently reach a broad audience of childcare providers.
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Cuidado da Criança , Creches , Criança , Lactente , Adulto , Humanos , Estado Nutricional , Refeições , Cuidado do Lactente , Política NutricionalRESUMO
OBJECTIVE: Spina bifida (SB) is a complex congenital condition characterized by incomplete closure of the neural tube, resulting in varying degrees of physical and neurological impairment. Although commonly managed by multidisciplinary pediatric clinics, a substantial proportion of SB patients are now living into adulthood, necessitating the transition from pediatric to adult healthcare. This transition introduces a myriad of challenges for individuals living with SB and their families. Prior research on SB transition programs has demonstrated anecdotal success; however, minimal research has been published on early posttransition health outcomes and compliance with medical recommendations. This quality improvement study assessed early posttransition compliance with medical recommendations, adverse health events, access to medical supplies/equipment, and patient-reported health outcome and confidence in medical providers. METHODS: Adult participants in the Spina Bifida Transition Clinic at the authors' pediatric institution were invited to complete a telephone survey after transition to adult care. The mean (SEM) elapsed time since transition was 1.21 (0.11) years. The survey evaluated adult provider utilization, accessibility of medical supplies and equipment, adverse medical events, compliance with sleep study acquisition, patient-reported health status, and satisfaction with providers. RESULTS: Of 52 eligible participants, 49 (94%) completed a telephone survey. Within the cohort, 82% had open SB (myelomeningocele), with the remaining having occult SB (lipomyelomeningocele). The mean age at transition was 26.0 years. Since transition, 78% have attended at least one primary care visit, with 76% seeking care from at least one adult care specialist (69% sought care with urologists). Forty-five percent reported an adverse medical event: 31% required an emergency department visit, 22% were hospitalized, 18% underwent surgery, and 24% had skin breakdown. Access to medical supplies varied, with patients experiencing the most difficulty obtaining wheelchairs and assistive walking devices. Patients rated pediatric provider engagement and knowledge of SB significantly higher than adult providers (mean 3.92 vs 3.32, p < 0.001). CONCLUSIONS: This quality improvement study evaluated the effectiveness of our Spina Bifida Transition Clinic in the early post transition period. While patients have used primary and specialty care (urology), they have experienced many adverse events and low compliance with sleep study acquisition. Continued evaluation of transition programs is required to optimize the outcome of those living with SB.
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Disrafismo Espinal , Transição para Assistência do Adulto , Humanos , Disrafismo Espinal/terapia , Transição para Assistência do Adulto/tendências , Transição para Assistência do Adulto/normas , Masculino , Feminino , Adulto , Adulto Jovem , Adolescente , Melhoria de QualidadeRESUMO
OBJECTIVE: In the global environment in which neurosurgical providers practice, there is a pressing need to identify and highlight online resources to support families shifting from pediatric to adult-centered spina bifida (SB) care in general and neurosurgical care in particular. The purpose of this paper was to identify high-quality resources for clinicians and families of individuals affected by SB to be utilized during the transition years. With knowledge of, and access to, these online resources, neurosurgical providers can aim to make the transition process effective, to improve the quality of care for young adults with SB. METHODS: All identified online resources were found on the GOT TRANSITION platform and by searching "spina bifida transition resources" between January and March 2024. Resources were coded for transition focus areas and stratified into predefined categories: 1) education for clinicians, 2) preparation for youth and families, 3) educational/school, and 4) employment and independent living. RESULTS: A total of 160 websites were cataloged; 11% of websites focused on medical provider education, 44% on preparation for youth, 29% on educational/school resources, and 16% on employment and independent living. CONCLUSIONS: In the global environment of today's medicine, online transition resources are available to assist clinicians and families in the transition process of individuals living with SB. With improved knowledge and utilization of online transition resources, neurosurgical providers can better serve individuals with SB and their families to improve quality of care with the aim of improving lifelong outcomes.
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Disrafismo Espinal , Humanos , Disrafismo Espinal/cirurgia , Internet , Transição para Assistência do Adulto , Procedimentos Neurocirúrgicos/métodos , Criança , Adolescente , Adulto Jovem , Adulto , NeurocirurgiaRESUMO
In India, adult neurosurgeons are required to care for children regularly because the concept of dedicated pediatric specialty care is not yet entirely established in the subcontinent. Likewise, pediatric neurosurgeons do not exclusively offer their services to the young, but they also provide care to adult patients with neurosurgical disorders. This creates a medical system where the transition between specialties is not often a formal and recognized aspect of neurosurgical care because most neurosurgeons provide care for patients of all ages. Additionally, there are very few teams geared toward caring for conditions in children that merit lifelong medical support, with spina bifida (SB) being one of them. Since there are no focused or structured pediatric programs on a large scale, developing a multidisciplinary clinic for adults becomes challenging. A pragmatic approach using technology-based education, supported by an organized system or a coordinator, may be a new strategy. A new system utilizing telemedicine and smartphones for established patients maybe an alternative option for SB children in India. During virtual video conferences, an established patient may benefit from multispecialty care and education toward a smooth transition that avoids significant issues with time, transportation, or financial constraints. Achieving a seamless transition among allied specialists from the pediatric to adult systems is a utopia. The current system in the subcontinent may be improved, with an opportunity to develop smooth transition care between coordinated specialists (who simultaneously treat children and adults). Learning from various global SB management styles, the Indian transition situation may offer another model in the near future.
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Disrafismo Espinal , Transição para Assistência do Adulto , Humanos , Disrafismo Espinal/terapia , Índia , Transição para Assistência do Adulto/tendências , Adulto , Telemedicina/tendências , CriançaRESUMO
BACKGROUND: The increased survival rate among individuals with CHD has sparked interest in their transition to adult healthcare. Although there is a general agreement on the importance of transition interventions, the empirical evidence supporting them is insufficient. Therefore, this study aimed to conduct a systematic review and meta-analysis of transition interventions for adult healthcare in adolescents and young adults. METHODS AND RESULTS: A literature search was conducted for studies comparing the quantitative effects of transition interventions with control groups, published up to March 15, 2023, in major databases (CENTRAL, Embase, PubMed, Web of Science, CINAHL, KISS, and KMbase), major clinical trial registries, academic journal sites related to the topic, and grey literature databases. Ten studies involving a total of 1,297 participants were identified. Transition interventions proved effective in enhancing disease-related knowledge (Hedge's g = 0.89, 95% CI = 0.29-1.48) and self-management (Hedge's g = 0.67, 95% CI = 0.38-0.95), as well as reducing loss to follow-up (OR = 0.41, 95% CI = 0.22-0.77). The certainty of evidence for the estimated values of each major outcome was low or very low. CONCLUSIONS: This study supports the implementation of transition interventions by demonstrating that they can improve patients' disease knowledge and self-management, while also promoting treatment continuity. However, since the available data on transition interventions for adolescents and young adults with CHD remain limited, the widespread adoption of structured transition interventions in the future may alter the conclusions of this study. REGISTRATION: URL: https://www.crd.york.ac.uk/PROSPERO. Unique identifier: CRD42023399026.
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AIMS: To evaluate associations of age, transition readiness and anxiety in adolescents with chronic conditions and to compare perceptions of adolescents and their parents regarding health self-management and transition readiness. DESIGN: Cross-sectional international study, reported following STROBE guidelines. METHODS: Adolescents and young adults (N = 512, mean age 17.7) with a chronic medical condition and their parents (N = 322) from Finland and Australia. Data were collected through surveys (between September 2017 and December 2020). Adolescents reported the duration of their condition. Age at survey was defined by the response date of the questionnaires. Validated questionnaires were used to measure transition readiness (Am I ON TRAC? for Adult Care) and anxiety related to transition of care (State-Trait Anxiety Inventory short form). Perceptions of health self-management and transition readiness were compared in adolescent/parent dyads. Associations were explored using Spearman's correlation. RESULTS: Duration of condition and age at survey correlated weakly with transition readiness knowledge and behaviour. Higher transition readiness knowledge scores correlated with higher behaviour scores. Higher transition readiness behaviour scores were associated with lower levels of anxiety. Adolescents were less anxious than their parents and adolescents and parents mostly agreed about health self-management and transition readiness. CONCLUSION: Transition readiness should be determined by an assessment of knowledge, self-management and psychosocial skills instead of age alone. Further research should address how well transition readiness predicts positive health outcomes after the transfer of care. IMPLICATIONS FOR PATIENT CARE: Transition readiness and self-management skills should be formally assessed because positive feedback may decrease the anxiety of both adolescents and their parents regarding the transfer of care. REPORTING METHOD: We have adhered to the STROBE statement, using STROBE checklist for cross-sectional studies. PATIENT OR PUBLIC INVOLVEMENT STATEMENT: No patient or public involvement. TRIAL AND PROTOCOL REGISTRATION: ClinicalTrials.org NCT04631965.
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Transição para Assistência do Adulto , Adulto Jovem , Humanos , Adolescente , Estudos Transversais , Inquéritos e Questionários , Ansiedade , Doença Crônica , Pais/psicologiaRESUMO
BACKGROUND: Nursing students' experiences during clinical training in aged care placements is a well-studied topic. However, there is less research on the connection between nursing students' prior experiences as assistants in nursing (AIN) and their perception of aged care nursing. AIM: The aim of this study was to identify and synthesize undergraduate nursing students' experiences as working as AIN in aged care settings. METHOD: A systematic review was carried out by searching the CINAHL, Scopus, Medline and Medic databases, supplemented by manual searches. The searches focused on peer-reviewed scientific empirical research articles published in English, with a 10-year date limitation. The data were analysed by the qualitative content method. RESULTS: The review identified 11 articles, which showed that nursing students' prior work experience shifts their perceptions of older adults' care. The findings were organized under four major themes. Through their employment as AIN, (1) nursing students' ability to reflect and develop skills needed in clinical work strengthened, (2) they became aware of the independent role of the nurse, (3) they feel part of the workplace community and (4) they recognized their feelings and views about aged care as a career. CONCLUSION: Students' work experience in aged care helps them to observe aged care settings as a unique set up and nursing comprehensively from the perspective of an older adult's care needs and they can observe the dynamics of a workplace community. They can see many positive features in working in aged care and assess their experience with positive descriptions.
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Bacharelado em Enfermagem , Estudantes de Enfermagem , Humanos , Idoso , Bacharelado em Enfermagem/métodos , Local de Trabalho , Emprego , EmoçõesRESUMO
BACKGROUND: Outcomes associated with rapid response teams (RRTs) are inconsistent. This may be due to underlying facilitators and barriers to RRT activation that are affected by team leaders and health systems. AIMS: The aim of this study was to synthesize the published research about facilitators and barriers to nurse-led RRT activation in the United States (U.S.). METHODS: A systematic review was conducted. Four databases were searched from January 2000 to June 2023 for peer-reviewed quantitative, qualitative, and mixed methods studies reporting facilitators and barriers to RRT activation. Studies conducted outside the U.S. or with physician-led teams were excluded. RESULTS: Twenty-five studies met criteria representing 240,140 participants that included clinicians and hospitalized adults. Three domains of facilitators and barriers to RRT activation were identified: (1) hospital infrastructure, (2) clinician culture, and (3) nurses' beliefs, attributes, and knowledge. Categories were identified within each domain. The categories of perceived benefits and positive beliefs about RRTs, knowing when to activate the RRT, and hospital-wide policies and practices most facilitated activation, whereas the categories of negative perceptions and concerns about RRTs and uncertainties surrounding RRT activation were the dominant barriers. LINKING EVIDENCE TO ACTION: Facilitators and barriers to RRT activation were interrelated. Some facilitators like hospital leader and physician support of RRTs became barriers when absent. Intradisciplinary communication and collaboration between nurses can positively and negatively impact RRT activation. The expertise of RRT nurses should be further studied.
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Equipe de Respostas Rápidas de Hospitais , Humanos , Equipe de Respostas Rápidas de Hospitais/normas , Equipe de Respostas Rápidas de Hospitais/estatística & dados numéricos , Estados UnidosRESUMO
This study is an analysis of the personal and social meanings of married women's experiences caring for their aging mothers as the eldest daughter in Korean society. Semi-structured interviews were conducted with seven participants for this study. The interviews were conducted in Korean, and the collected data were analyzed using descriptive phenomenological analysis in four categories: "being the eldest daughter and daughter-in-law in a patriarchal society with nothing but duties"; "the pain of taking care of my mother that invades my daily life"; "The compassion of an eldest daughter who can't turn a blind eye to her mother's miserable life."; and "Support from society to overcome the psychological difficulties of caregivers and help older adults in their daily lives". The study participants felt emotional pain in caring for their mothers, and it was difficult for them to simultaneously play the roles of daughter-in-law, wife, and mother. However, they felt compassion for their mothers' lives in a patriarchal society and believed they could compensate for their mothers' hardships by caring for them. The participants emphasized the need for specialized in-home services that address the specific health needs of the older adult, along with counseling services for their caregivers. In Korean society, when daughters care for their mothers, it strengthens the shared history and emotions between mothers and daughters, affirming female solidarity. Based on the above findings, policy and practical measures are recommended to ensure that daughters who provide care for their mothers can deliver stable care.
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Cuidadores , Relações Mãe-Filho , Mães , Núcleo Familiar , Humanos , Feminino , Mães/psicologia , Cuidadores/psicologia , Pessoa de Meia-Idade , República da Coreia , Relações Mãe-Filho/psicologia , Idoso , Núcleo Familiar/psicologia , Empatia , Adulto , Pesquisa Qualitativa , Envelhecimento/psicologia , Apoio SocialRESUMO
AIMS: The aim of this study was to assess the paediatric and adult diabetes care provided to adolescents and young adults with childhood-onset type 1 diabetes during the transition. METHODS: This nationwide population-based cohort study included 776 individuals with type 1 diabetes who were last registered in the Norwegian Childhood Diabetes Registry (NCDR) between 2009 and 2012 and had received adult health care for at least 2 years. The patients' experiences were reported in a validated questionnaire. Clinical data from the annual registrations in the NCDR were coupled with data from the medical records in adult diabetes care. The longitudinal measures of glycaemic control were analysed using a growth mixture model. RESULTS: A total of 321 young people answered the questionnaire and provided written informed consent for the collection of their data from their medical records. The mean age at transfer was 18.0 years (range = 15.0-23.5 years), and the mean age at participation was 22.7 years (range = 20.9-26.7 years). Significant differences (p < 0.001) in patient experiences were found between paediatric and adult diabetes care in several areas: contact with health-care personnel, continuity of care, interval between consultations and overall satisfaction. Registry and medical records data confirmed the patient-reported experiences. The longitudinal analyses identified two groups with distinctly different trajectories of glycaemic outcome over time. Patient-provider continuity and perceived preparedness for transfer were the most influential predictors. CONCLUSIONS: This study highlights several areas to be addressed for improving health care and the transition to adult diabetes care in adolescents and young adults with type 1 diabetes, including provider continuity, individualised care and involvement of multidisciplinary teams.
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Diabetes Mellitus Tipo 1 , Transição para Assistência do Adulto , Adulto Jovem , Criança , Humanos , Adolescente , Adulto , Diabetes Mellitus Tipo 1/epidemiologia , Diabetes Mellitus Tipo 1/terapia , Estudos de Coortes , Pessoal de Saúde , Atenção à SaúdeRESUMO
INTRODUCTION: Care for adolescents with haemophilia is transferred from paediatric to adult care around the age of 18 years. Transition programs help to prepare adolescents for this transfer and prevent declining treatment adherence. Evaluating transition readiness may identify areas for improvement. OBJECTIVE: Assess transition readiness among Dutch adolescents and young adults with haemophilia, determine factors associated with transition readiness, and identify areas of improvement in transition programs. METHODS: All Dutch adolescents and young adults aged 12-25 years with haemophilia were invited to participate in a nationwide questionnaire study. Transition readiness was assessed using multiple-choice questions and was defined as being ready or almost ready for transition. Potential factors associated with transition readiness were investigated, including: socio-demographic and disease-related factors, treatment adherence, health-related quality of life, and self-efficacy. RESULTS: Data of 45 adolescents and 84 young adults with haemophilia (47% with severe haemophilia) were analyzed. Transition readiness increased with age, from 39% in 12-14 year-olds to 63% in 15-17 year-olds. Nearly all post-transition young adults (92%, 77/84) reported they were ready for transition. Transition readiness was associated with treatment adherence, as median VERITAS-Pro treatment adherence scores were worse in patients who were not ready (17, IQR 9-29), compared to those ready for transition (11, IQR 9-16). Potential improvements were identified: getting better acquainted with the adult treatment team prior to transition and information on managing healthcare costs. CONCLUSIONS: Nearly all post-transition young adults reported they were ready for transition. Improvements were identified regarding team acquaintance and preparation for managing healthcare costs.
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Hemofilia A , Transição para Assistência do Adulto , Humanos , Adolescente , Adulto Jovem , Criança , Hemofilia A/terapia , Países Baixos , Qualidade de Vida , AmigosRESUMO
BACKGROUND: Patients with colorectal cancer (CRC) and multiple comorbidities are less likely to receive guideline-concordant treatment (GCT), a disparity exacerbated by racial and ethnic disparities in GCT. Yet, positive patient experiences with care are associated with more appropriate care use. We investigated associations between patient experiences with care, race and ethnicity, and receipt of GCT for CRC among older adults with multiple comorbidities. METHODS: We used SEER-Consumer Assessment of Healthcare Providers and Systems (CAHPS) data to identify participants diagnosed with CRC from 2001 to 2017 at age ≥67 years with additional chronic conditions. Stage-specific GCT was identified following recommendations in the NCCN Guidelines for Colon and Rectal Cancer. Patient experiences with care were identified from CAHPS surveys. Multivariable log-binomial regression estimated associations between race and ethnicity and receipt of GCT by experiences with care. RESULTS: A total of 2,612 patients were included. Those reporting excellent experience with getting care quickly were 5% more likely to receive GCT than those reporting less-than-excellent experience (relative risk [RR], 1.05; 95% CI, 1.04-1.05). When reporting less-than-excellent experience with getting care quickly, non-Hispanic Black (NHB) patients were less likely than non-Hispanic White (NHW) patients to receive GCT (RR, 0.80; 99.38% CI, 0.78-0.82), yet NHB patients were more likely to receive GCT than NHW patients when reporting excellent experience (RR, 1.05; 99.38% CI, 1.02-1.09). When reporting less-than-excellent experience with getting needed care, Hispanic patients were less likely than NHW patients to receive GCT (RR, 0.91; 99.38% CI, 0.88-0.94), yet Hispanic patients were more likely to receive GCT than NHW patients when reporting excellent experience (RR, 1.06; 99.38% CI, 1.03-1.08). CONCLUSIONS: Although excellent patient experience among those with multiple comorbidities may not be strongly associated with receipt of GCT for CRC overall, improvements in experiences of accessing care among NHB and Hispanic patients with CRC and additional comorbidities may aid in mitigating racial and ethnic disparities in receipt of GCT.
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Neoplasias Colorretais , Atenção à Saúde , Etnicidade , Grupos Raciais , Idoso , Humanos , Comorbidade , Hispânico ou Latino , Avaliação de Resultados da Assistência ao Paciente , Negro ou Afro-Americano , Neoplasias Colorretais/terapiaRESUMO
BACKGROUND: Adolescents who have received a kidney transplant are at high risk of graft rejection and transplant-related comorbidities around the time of transition from pediatric to adult care. While there has been a progress in tracking transition readiness, further work is needed to prepare adolescents for healthcare transitions. We describe a longitudinal cohort-based transition curriculum designed to prepare kidney transplant recipients for adult transplant care. METHODS: Adolescent kidney transplant recipients aged 17 and older participated in the pilot cohort of the 2-year transition curriculum. Session topics included communication with the healthcare team, insurance, job skills, reflective practice, reproductive health, medications, and adult clinic introduction. Surveys were given to obtain narrative feedback, assess participant self-management behavior, and track curriculum knowledge. RESULTS: Each participant attended an average of two sessions, with 18 out of 30 eligible adolescents participating in at least one session. After transitioning to a virtual platform, there was increased attendance of participants who live greater than 150 miles from the transplant center. Adolescents highlighted the value of the program's group structure to relate to and learn from other participants. CONCLUSIONS: The pilot transition program successfully provided adolescent kidney transplant recipients the opportunity to learn alongside their peers and gain interdisciplinary knowledge to prepare for healthcare transition. The program converted to a virtual platform during the COVID-19 pandemic, with increased accessibility for participants who live further from the transplant center. Group-based programming for adolescents should be enhanced to further prepare them for transitions to adult medicine.
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COVID-19 , Transplante de Rim , Transição para Assistência do Adulto , Adulto , Adolescente , Humanos , Criança , Pandemias , Inquéritos e Questionários , TransplantadosRESUMO
Survival of pediatric kidney transplant recipients has improved over the past six decades. However, adolescents and young adults still have the highest graft failure rates of any age group. There is a growing need for well-designed transition programs to ensure the successful integration of young adults into adult society with eventual transfer of care and management in adult transplant centers. In this review, we discuss the risk factors contributing to the high risk of kidney graft failure observed between 17 and 24 years of age, including the role of transfer from pediatric to adult care. We also address the unique challenges of adolescents with kidney transplant: the impact of chronic kidney disease on neurocognition, age-related changes in immune activity, and suboptimal adherence during the transition process. We then describe strategies to mitigate these risks by designing developmentally appropriate transition programs, and review the evidence supporting the benefits of well-designed multidisciplinary transition programs.