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1.
Surg Obes Relat Dis ; 2024 Jul 04.
Artículo en Inglés | MEDLINE | ID: mdl-39117559

RESUMEN

The American Society of Metabolic and Bariatric Surgery (ASMBS) and the American Academy of Pediatrics (AAP) recommend bariatric surgery as a treatment option for severe obesity. Bariatric surgery results in weight loss and improves obesity-related comorbidities. After surgery, adolescents and young adults require close observation and interdisciplinary care to help optimize weight loss, minimize nutrient deficiencies, address mental or physical health complications, and ensure a smooth transition to adult care. Yet, the extant literature on adherence and transition of care in bariatric programs is limited. Using 3 case studies from 2 bariatric programs, one on retention and 2 on transition of care, this paper highlights learning opportunities for care delivery after bariatric surgery. A quality improvement framework and an embedded electronic medical health registry can improve retention rates within a bariatric program. In addition, implementing a workflow ensures standardization of care; however, a key challenge is inadequate staffing. The programs established a transition of care policy and protocol by incorporating several of the Six Core Elements, a recognized guide for ensuring a safe and appropriate transfer from pediatric to adult care. Several research gaps remain, and further work is needed to determine and standardize best practices for adolescent bariatric surgery.

2.
Neurosurg Focus ; 57(2): E6, 2024 08 01.
Artículo en Inglés | MEDLINE | ID: mdl-39088853

RESUMEN

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.


Asunto(s)
Disrafia Espinal , Humanos , Disrafia Espinal/cirugía , Internet , Transición a la Atención de Adultos , Procedimientos Neuroquirúrgicos/métodos , Niño , Adolescente , Adulto Joven , Adulto , Neurocirugia
3.
Schizophr Bull ; 2024 Aug 07.
Artículo en Inglés | MEDLINE | ID: mdl-39113641

RESUMEN

BACKGROUND AND HYPOTHESIS: Young people (YP) with psychotic experiences (PE) have an increased risk of developing a psychiatric disorder. Therefore, knowledge on continuity of care from child and adolescent (CAMHS) to adult mental health services (AMHS) in relation to PE is important. Here, we investigated whether the self-reported trajectories of persistent PE were associated with likelihood of transition to AMHS and mental health outcomes. STUDY DESIGN: In this prospective cohort study, interviews and questionnaires were used to assess PE, mental health, and service use in 763 child and adolescent mental health service users reaching their service's upper age limit in 8 European countries. Trajectories of self-reported PE (3 items) from baseline to 24-month follow-up were determined using growth mixture modeling (GMM). Associations were assessed with auxiliary variables and using mixed models. Study results. At baseline, 56.7% of YP reported PE. GMM identified 5 trajectories over 24 months: medium increasing (5.2%), medium stable (11.7%), medium decreasing (6.5%), high decreasing (4.2%), and low stable (72.4%). PE trajectories were not associated with continuity of specialist care or transition to AMHS. Overall, YP with PE reported more mental health problems at baseline. Persistence of PE or an increase was associated with poorer outcomes at follow-up. CONCLUSIONS: PE are common among CAMHS users when reaching the upper age limit of CAMHS. Persistence or an increase of PE was associated with poorer mental health outcomes, poorer prognosis, and impaired functioning, but were less discriminative for continuity of care.

4.
J Adolesc Health ; 2024 Jul 12.
Artículo en Inglés | MEDLINE | ID: mdl-39007791

RESUMEN

PURPOSE: There is limited caregiver-reported evidence determining health care transition (HCT) outcomes for their adolescents/young adults with special health care needs (AYA-SHCN). A subcommittee of the International and Interdisciplinary Healthcare Transition Research Consortium aimed to identify multidimensional outcomes of a successful HCT among AYA-SHCN based on parents/caregivers' perspectives. METHODS: After literature review and expert interviews, a three-stage Delphi process identified HCT outcomes based on parents/caregivers' perspectives. Participants were parents/caregivers of patients attending the Victory Junction Therapeutic Camp and a nationally representative sample from Cint Healthcare Digital Solutions Platform. The cumulative 272 responses collected on a Health Insurance Portability and Accountability Act-compliant web-based engine (Qualtrics) rated potential HCT outcomes by level of importance on a Likert scale from 1 (not important) to 9 (very important) and narrowed in subsequent iterations. RESULTS: The Delphi process included 127 (Stage 1), 82 (Stage 2), and 63 (Stage 3) parents/caregivers. The initial 25 HCT outcomes were narrowed to 13, across four major domains: coping/satisfaction, behavioral, structural, and HCT/healthcare-focused outcomes. The top outcome was "My child takes their medications as prescribed." Several traditionally considered important outcomes for HCT were eliminated. DISCUSSION: Thirteen HCT outcomes for AYA-SHCN were identified in four major domains: coping/satisfaction, behavioral, structural, and HCT/healthcare focused. Future research in larger samples would allow stratification to represent diverse patients and caregiver populations. Identifying international consensus-derived outcomes among parents/caregivers is imperative for the evaluation of HCT preparation strategies that ensure appropriate support for diverse AYA-SHCN and their families during this process and enable implementation of the most effective interventions.

5.
J Clin Med ; 13(13)2024 Jun 27.
Artículo en Inglés | MEDLINE | ID: mdl-38999322

RESUMEN

Background: Cerebral palsy (CP) is the most common physical disability among children, affecting their lifespan. While CP is typically nonprogressive, symptoms can worsen over time. With advancements in healthcare, more children with CP are reaching adulthood, creating a greater demand for adult care. However, a significant lack of adult healthcare providers exists, as CP is predominantly considered a pediatric condition. This study compares the transition experiences of children with CP compared to those with other developmental disabilities (DDs) and typically developing children (TDC). Methods: This study utilizes cross-sectional data from the National Survey of Children's Health (NSCH) from 2016-2020, including 71,973 respondents aged 12-17. Children were categorized into three groups: CP (n = 263), DD (n = 9460), and TDC (n = 36,053). The analysis focused on the receipt of transition services and identified demographic and socioeconomic factors influencing these services. Results: Only 9.7% of children with CP received necessary transition services, compared to 19.7% of children with DDs and 19.0% of TDC. Older age, female sex, non-Hispanic white ethnicity, and higher household income were significant predictors of receiving transition services. Children with CP were less likely to have private time with healthcare providers and receive skills development assistance compared to other groups. Conclusions: The findings highlight disparities and critical needs for targeted interventions and structured transition programs to improve the transition from pediatric to adult healthcare for children with CP. Addressing disparities in service receipt and ensuring coordinated, continuous care are essential for improving outcomes for children with CP.

6.
Front Clin Diabetes Healthc ; 5: 1304577, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38799020

RESUMEN

Introduction: Adolescents and young adults (AYA) living with type 1 diabetes (T1D) are a vulnerable demographic at risk for sub-optimal glycemic outcomes at a time when they are taking over their diabetes management. The purposes of this study were to examine levels of self-reported comfort with diabetes management tasks among AYA living with T1D and to describe the relationships among comfort levels, sociodemographic factors, and HbA1c. Methods: During a routine diabetes care visit, AYA aged 15-23 years old living with T1D received a transition survey to self-assess their comfort level with different diabetesmanagement tasks. Results: Among 161 participants who completed the survey (median age 17 years, median diabetes duration 7 years, 82.3% White, 40.9% female, 66.5% with private insurance, and median HbA1c 8.8%), comfort with diabetes management tasks was generally rated highly (median overall comfort level of 4.5 out of 5), irrespective of race or insurance type. Regression analysis revealed that higher self-reported comfort level with diabetes management tasks was associated with a higher HbA1c (p = 0.006), after controlling for age, sex, race, insurance type, and diabetes duration. Discussion: These findings suggest that self-reported comfort with independently managing T1D may not be a sufficient metric in assessing AYA patients' need for further intervention to optimize glycemic outcomes as they transition from pediatric to adult diabetes care, and highlights the importance of continuity of care to support diabetes management during this transitional period.

7.
J Pediatr ; 273: 114123, 2024 May 28.
Artículo en Inglés | MEDLINE | ID: mdl-38815748

RESUMEN

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.

8.
Cardiol Young ; : 1-14, 2024 Mar 25.
Artículo en Inglés | MEDLINE | ID: mdl-38525659

RESUMEN

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.

9.
Spec Care Dentist ; 44(4): 1107-1114, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38177065

RESUMEN

AIM: To evaluate the average age and primary reason for the first dental visit among patients with special health care needs (SHCN) as well as to examine barriers related to accessing care for children with special health care needs. METHODS: This is a cross-sectional survey that was distributed to caregivers of children with special health care needs (CSHCN).  Study data was collected through REDCap, a secure web-based survey application. RESULTS: A total of 75 caregivers participated in the survey.  Only 13% of caregivers reported that their child was less than 1 by the time of their first dental visit.  Nearly all reported seeing a pediatric dentist for their first visit (89%) and that it was for a routine exam and cleaning (83%).  About one-third of guardians reported an experience where a dentist was unable to care for their child due to their SHCN (36%). DISCUSSION: It appears that caregivers of CSHCN that participated in this survey have established routine care with a pediatric dentist at an early age. It is important to continue to educate caregivers on the importance of routine care as well as support general dentists in their role of caring for patients with SHCN.


Asunto(s)
Atención Dental para Niños , Atención Dental para la Persona con Discapacidad , Accesibilidad a los Servicios de Salud , Humanos , Estudios Transversales , Niño , Femenino , Masculino , Preescolar , Lactante , Cuidadores , Encuestas y Cuestionarios , Adolescente , Niños con Discapacidad , Factores de Edad , Adulto
10.
Pediatr Rheumatol Online J ; 22(1): 7, 2024 Jan 02.
Artículo en Inglés | MEDLINE | ID: mdl-38167070

RESUMEN

BACKGROUND: Juvenile idiopathic arthritis (JIA) is a prevalent childhood chronic arthritis, often persisting into adulthood. Effective transitional care becomes crucial as these patients transition from pediatric to adult healthcare systems. Despite the concept of transitional care being recognized, its real-world implementation remains inadequately explored. This study aims to evaluate the thoughts and practices of healthcare providers regarding transitional care for JIA patients. METHODS: A cross-sectional survey was conducted among pediatric and adult rheumatologists in Turkey. Based on the American Academy of Pediatrics' six core elements of transitional care, the survey included 86 questions. The respondents' demographic data, attitudes towards transitional care, and practical implementation were assessed. RESULTS: The survey included 48 rheumatologists, with 43.7% having a transition clinic. The main barriers to establishing transition programs were the absence of adult rheumatologists, lack of time, and financial constraints. Only 23.8% had a multidisciplinary team for transition care. Participants agreed on the importance of coordination and cooperation between pediatric and adult healthcare services. The timing of the transition process varied, with no consensus on when to initiate or complete it. Participants advocated for validated questionnaires adapted to local conditions to assess transition readiness. CONCLUSIONS: The study sheds light on the challenges and perspectives surrounding transitional care for JIA patients in Turkey. Despite recognized needs and intentions, practical implementation remains limited due to various barriers. Cultural factors and resource constraints affect the transition process. While acknowledging the existing shortcomings, the research serves as a ground for further efforts to improve transitional care and ensure better outcomes for JIA patients transitioning into adulthood.


Asunto(s)
Artritis Juvenil , Transición a la Atención de Adultos , Cuidado de Transición , Adolescente , Humanos , Artritis Juvenil/terapia , Estudios Transversales , Reumatólogos , Turquía
11.
J Adv Nurs ; 80(2): 756-764, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-37691321

RESUMEN

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.


Asunto(s)
Transición a la Atención de Adultos , Adulto Joven , Humanos , Adolescente , Estudios Transversales , Encuestas y Cuestionarios , Ansiedad , Enfermedad Crónica , Padres/psicología
12.
Jpn J Nurs Sci ; 21(2): e12572, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-37937387

RESUMEN

AIM: This study aimed to elucidate the parental involvement process regarding childhood cancer survivors' (CCSs') independence while balancing their health management and social lives from adolescence to adulthood to obtain suggestions for long-term support for CCSs and their parents. METHODS: Semi-structured interviews were conducted with 19 parents of Japanese CCSs aged 16-25 years. The data were then qualitatively analyzed using the modified grounded theory approach. RESULTS: Three "categories" and 20 "concepts" were generated. The connections among these categories and concepts revealed the parental involvement process regarding CCSs' independence while balancing their health management and social lives. The first phase in this process is to "support careful behaviors," mainly during CCSs' treatment in the outpatient clinic or shortly after discharge. As CCSs recover after cancer treatment, parents "watch over, but feel conflicted," with "conflicts between protecting their sons/daughters and giving them independence." Then, parents reach a phase in which they "acknowledge and entrust," which includes "acknowledgment of development and efforts" of their sons/daughters, and develop an "attitude to entrust medical checkups to their sons/daughters, along with their preparation." The influencing factors of the three phases include "ongoing anxieties about the late effects of therapy and recurrence" and an "expectation for their sons/daughters to acquire abilities for living independently." CONCLUSIONS: These findings suggest that nurses need to accept parents' feelings and thoughts regarding conflicts with CCSs, recognition of CCSs' development, and values. These processes may help nurses and health-care professionals support parents from a comprehensive perspective.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Humanos , Niño , Adolescente , Neoplasias/terapia , Padres , Estudios Longitudinales , Alta del Paciente
13.
Pediatr Nephrol ; 39(4): 1077-1084, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-37667084

RESUMEN

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.


Asunto(s)
Insuficiencia Renal Crónica , Transición a la Atención de Adultos , Humanos , Adolescente , Adulto Joven , Niño , Adulto , Diálisis Renal , Insuficiencia Renal Crónica/terapia , Enfermedad Crónica , Nefrólogos
14.
Allergy ; 79(4): 861-883, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38041398

RESUMEN

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.


Asunto(s)
Asma , Automanejo , Telemedicina , Humanos , Adolescente , Inteligencia Artificial , Telemedicina/métodos , Atención a la Salud
15.
Brain Dev ; 46(1): 18-27, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-37634963

RESUMEN

BACKGROUND: This study aimed to investigate medication prescriptions for patients with myelomeningocele (MMC) across different age groups, particularly in adulthood and after middle age. METHODS: The Japan Medical Data Center (JMDC) database, based on medical claims data, was utilized for this analysis. Patients were divided into 10-year age groups, and prescriptions for analgesics, anticonvulsants, psychotropic drugs, lifestyle disease-related drugs, drugs for urinary incontinence, and laxatives were examined. To compare the differences in the utilization of medications unrelated to lifestyle-related diseases across different age groups, the data was categorized into three age groups: 19 or under, 20-39, and 40 or older. RESULTS: Among the 556 MMC patients, the percentage of those regularly prescribed analgesics increased from 2.8% in patients ≤ 19 to 31.7% in patients 40 or older (p < 0.01). Psychotropic medication use also increased with age, rising significantly from 6.3% in patients ≤ 19 to 34.6% in patients 40 or older (p < 0.01). Patients with MMC showed an increasing trend in prescriptions for lifestyle-related disease medications compared to the normal control group. Notably, the percentage of patients in their 30 s taking hypertension medication was 4.9%, significantly higher than the 0.86% in the control group (p = 0.029). In their 40 s, 22.9% of MMC patients were prescribed hyperlipidemia medication, significantly higher than the 3.9% in the control group (p < 0.01). CONCLUSION: Comprehensive multidisciplinary support and follow-up are crucial to enhance the quality of life for MMC patients, with particular attention to pain management, psychological care, and treatment of lifestyle-related diseases.


Asunto(s)
Meningomielocele , Persona de Mediana Edad , Humanos , Adulto Joven , Adulto , Meningomielocele/tratamiento farmacológico , Calidad de Vida , Japón , Analgésicos/uso terapéutico , Anticonvulsivantes/uso terapéutico , Psicotrópicos/uso terapéutico
16.
Pediatr Transplant ; 28(1): e14673, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-38059409

RESUMEN

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.


Asunto(s)
Trasplante de Hígado , Transición a la Atención de Adultos , Adolescente , Adulto Joven , Humanos , Niño , Autoeficacia , Encuestas y Cuestionarios
17.
Patient Educ Couns ; 118: 108028, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-37879284

RESUMEN

OBJECTIVE: To evaluate the effectiveness of the transition program for adolescents with congenital heart disease (CHD) 'Transition With a Heart' (TWAH) on disease-related knowledge, quality of life (QoL), transition experiences, and gaps in follow-up. METHODS: A study with pre-posttest and control group (post-test) using consecutive sampling, including adolescents with moderate to severely complex CHD, without intellectual disability, aged≥ 12 y, and parents. After weighting, t-tests were performed. A multivariable regression analysis explored the outcomes' determinants. RESULTS: In the intervention group, 28 adolescents and 25 parents were included, and 53 adolescents and 18 parents as controls. Adolescents' knowledge significantly increased after completing TWAH (from 59.8% to 75.7%;p < 0.01). Their knowledge was positively correlated with TWAH (ß = +13.3;p < 0.01). Adolescents' transition experiences were also positively related to TWAH (general experience: ß = +5.5;p < 0.01; transfer satisfaction: ß = +0.8; p < 0.01). Adolescents' QoL was mainly determined by CHD complexity and not by TWAH. No one showed gaps in follow-up. TWAH was not associated with parents' transition experiences. CONCLUSION: Implementing TWAH substantially improved adolescents' disease-related knowledge and transition experiences. PRACTICE IMPLICATIONS: The results regarding transition experiences need to be confirmed by further research. The TWAH design with the person-tailored educational program, skills training, and the transition coordinator can be used in settings with other chronic diseases.


Asunto(s)
Cardiopatías Congénitas , Transición a la Atención de Adultos , Cuidado de Transición , Adolescente , Humanos , Cardiopatías Congénitas/terapia , Rol de la Enfermera , Padres , Calidad de Vida , Evaluación de Programas y Proyectos de Salud , Enfermedad Crónica
18.
Diabet Med ; 41(1): e15237, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-37838827

RESUMEN

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.


Asunto(s)
Diabetes Mellitus Tipo 1 , Automanejo , Transición a la Atención de Adultos , Adulto , Humanos , Adolescente , Niño , Estudios Transversales , Hemoglobina Glucada , Control Glucémico , Glucemia
19.
J Pediatr Pharmacol Ther ; 28(8): 741-746, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-38094674

RESUMEN

OBJECTIVE: Preparation for transition from pediatric to adult cystic fibrosis (CF) care is essential for successful self-management in adulthood. The primary objective of this study was to determine if education improved performance on follow-up assessments to increase knowledge for transition into adult care. The secondary objective of this study was to identify areas of greatest educational opportunity for adolescent CF patients. METHODS: A knowledge assessment containing 13 multiple-choice questions was given to patients between 14 and 19 years of age. Three educational handouts covering topics including nutrition, pancreatic enzyme replacement therapy, or vitamins were provided when a question corresponding to the topic was answered incorrectly. The same assessment was completed at the next clinic appointment as a follow-up. The scores of initial and follow-up assessments were compared based on number of correct answers. Additionally, the number of educational handouts provided was analyzed to determine area of greatest educational need. RESULTS: The average score ± SD on the initial assessment was 8.3 ± 1.6 of 13 questions answered correctly. For patients who completed both assessments, scores improved significantly between initial and follow-up assessments (8.4 ± 1.8 before education vs 10.3 ± 1.1 after; p = 0.0008). Nutrition, pancreatic enzyme, and vitamin handouts were given to 14 (70%), 17 (85%), and 20 (100%) patients, respectively. CONCLUSIONS: This pharmacist-driven educational initiative increased knowledge assessment scores after education was provided. Future studies of similar knowledge assessments starting at younger ages and other disease topics may determine if targeted education is the optimal way to build knowledge for transition to adult CF care.

20.
Nursing (Ed. bras., Impr.) ; 26(306): 10045-10051, dez.2023.
Artículo en Inglés, Portugués | LILACS, BDENF - Enfermería | ID: biblio-1526382

RESUMEN

Os pacientes oncológicos necessitam de uma assistência integral, sobretudo no que se refere à transição do cuidado em saúde entre os diferentes locais e níveis de cuidado. Este estudo tem como objetivo investigar se existem protocolos assistenciais utilizados pela equipe interprofissional sobre a transição do cuidado oncológico hospitalar para o domicílio e identificar as estratégias utilizadas no planejamento e orientações da alta hospitalar. Trata-se de um estudo descritivo de abordagem qualitativa, realizado através de Grupo Focal, com profissionais da equipe interprofissional que atuam diretamente com o cuidado oncológico, em hospital filantrópico, localizado no interior do Estado do Rio Grande do Sul. Construíram-se categorias que elencaram as principais características: Desafios na transição do cuidado para a rede de atenção primária e domiciliar e Sugestões para a mudança nas intervenções do cuidado integrado em oncologia. Constatou-se que a equipe interprofissional apresenta dificuldades na compreensão sobre a transição do cuidado e a necessidade de uma maior quantitativo de colaboradores para a qualificação da assistência.(AU)


Cancer patients need comprehensive care, especially with regard to the transition of health care between different locations and levels of care. This study aims to investigate whether there are care protocols used by the interprofessional team on the transition from hospital to home oncology care and to identify the strategies used in hospital discharge planning and guidance. This is a descriptive study with a qualitative approach, carried out through focus groups with professionals from the interprofessional team who work directly with cancer care in a philanthropic hospital located in the interior of the state of Rio Grande do Sul. Categories were constructed which listed the main characteristics: Challenges in the transition of care to the primary and home care network and Suggestions for change in integrated oncology care interventions. It was found that the interprofessional team has difficulties in understanding the transition of care and the need for a greater number of collaborators to improve care.(AU)


Los pacientes oncológicos requieren una atención integral, especialmente en lo que se refiere a la transición de la asistencia sanitaria entre diferentes lugares y niveles asistenciales. Este estudio pretende investigar si existen protocolos asistenciales utilizados por el equipo interprofesional en la transición de la atención oncológica hospitalaria a la domiciliaria e identificar las estrategias utilizadas en la planificación y guías de alta hospitalaria. Se trata de un estudio descriptivo con abordaje cualitativo, realizado a través de grupos focales con profesionales del equipo interprofesional que trabajan directamente con la atención oncológica en un hospital filantrópico localizado en el interior del estado de Rio Grande do Sul. Se construyeron categorías que enumeraron las principales características: Desafíos en la transición de la atención a la red de atención primaria y domiciliaria y Sugerencias de cambio en las intervenciones de atención oncológica integrada. Se encontró que el equipo interprofesional tiene dificultades en la comprensión de la transición de la atención y la necesidad de un mayor número de colaboradores para mejorar la atención.(AU)


Asunto(s)
Alta del Paciente , Continuidad de la Atención al Paciente , Transición a la Atención de Adultos , Oncología Médica
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