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1.
Int J Pediatr Otorhinolaryngol ; 180: 111933, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38692234

RESUMO

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.


Assuntos
Transição para Assistência do Adulto , Humanos , Inquéritos e Questionários , Adulto , Criança , Masculino , Feminino , Doença Crônica/terapia , Pesquisas sobre Atenção à Saúde , Adolescente , Reprodutibilidade dos Testes , Estados Unidos
2.
BMJ Open ; 14(5): e080822, 2024 May 08.
Artigo em Inglês | MEDLINE | ID: mdl-38719333

RESUMO

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.


Assuntos
Cuidadores , Consenso , Participação do Paciente , Humanos , Pesquisa Translacional Biomédica , Literatura de Revisão como Assunto , Projetos de Pesquisa , Transição para Assistência do Adulto
3.
Cancer Med ; 13(10): e7234, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38752459

RESUMO

PURPOSE: In Germany, children diagnosed with cancer survive their initial disease in more than 80%, and the majority will become long-term survivors. Around the age of 18, survivors are transferred to adult healthcare. The transition can be a critical period in the process of care at which many childhood cancer survivors discontinue to participate in regular follow-up care. Hence, the objective of the paper was to explore (a) survivors' attitudes towards pediatric follow-up care and (b) their concerns regarding the transition process to draw conclusions for optimizing pediatric care and transition processes. METHODS: We conducted semi-structured interviews with 21 adolescent childhood cancer survivors between the ages of 14 and 20. The survivors were recruited via a pediatric oncology department of a university hospital in Germany. Based on the principles of qualitative content analysis, a deductive-inductive method according to Kuckartz was applied. RESULTS: Based on the interview guide and derived from the exploratory research questions, two key categories were generated: (a) Survivors' attitudes towards pediatric follow-up care, which encompasses all formal and emotional aspects of survivors regarding follow-up care, and (b) their concerns regarding transition from pediatric to adult healthcare, where hindering and facilitating factors for a successful transition occur. Our results show high satisfaction among survivors with follow-up care. Nevertheless, they wish to be more integrated into processes and the organization of their follow-up care. Most adolescent survivors do not feel ready for transition. CONCLUSION: The integration of survivors into the organization processes and routines, and the promotion of emotional detachment from pediatric health care professionals (HCPs) are important to reduce concerns and uncertainties of adolescent survivors regarding the transition process and to promote subjective readiness for transition. To gain confidence in the adult healthcare, it is crucial to provide tailored education depending on individual requirements and needs and to build trusting relationships between survivors and adult HCPs.


Assuntos
Sobreviventes de Câncer , Pesquisa Qualitativa , Transição para Assistência do Adulto , Humanos , Adolescente , Sobreviventes de Câncer/psicologia , Masculino , Feminino , Adulto Jovem , Assistência ao Convalescente , Neoplasias/psicologia , Neoplasias/terapia , Alemanha , Adulto , Continuidade da Assistência ao Paciente
4.
Pediatr Surg Int ; 40(1): 119, 2024 May 03.
Artigo em Inglês | MEDLINE | ID: mdl-38700671

RESUMO

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.


Assuntos
Malformações Anorretais , Doença de Hirschsprung , Entrevistas como Assunto , Pesquisa Qualitativa , Humanos , Doença de Hirschsprung/psicologia , Doença de Hirschsprung/cirurgia , Feminino , Masculino , Malformações Anorretais/cirurgia , Malformações Anorretais/psicologia , Adolescente , Criança , Adulto , Adulto Jovem , Qualidade de Vida/psicologia , Transição para Assistência do Adulto
5.
Expert Rev Endocrinol Metab ; 19(3): 229-240, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38664997

RESUMO

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.


Assuntos
Transição para Assistência do Adulto , Síndrome de Turner , Síndrome de Turner/terapia , Síndrome de Turner/complicações , Humanos , Feminino , Adolescente , Adulto , Puberdade , Preservação da Fertilidade/métodos
6.
Med Klin Intensivmed Notfmed ; 119(4): 277-284, 2024 May.
Artigo em Alemão | MEDLINE | ID: mdl-38600231

RESUMO

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.


Assuntos
Assistência ao Convalescente , Doenças do Prematuro , Unidades de Terapia Intensiva Neonatal , Alta do Paciente , Humanos , Recém-Nascido , Alemanha , Assistência ao Convalescente/organização & administração , Doenças do Prematuro/terapia , Colaboração Intersetorial , Comunicação Interdisciplinar , Pré-Escolar , Adulto Jovem , Readmissão do Paciente , Adulto , Equipe de Assistência ao Paciente/organização & administração , Lactente , Transição para Assistência do Adulto/organização & administração , Programas Nacionais de Saúde/legislação & jurisprudência , Necessidades e Demandas de Serviços de Saúde/organização & administração , Comportamento Cooperativo
7.
Dtsch Med Wochenschr ; 149(10): 579-586, 2024 May.
Artigo em Alemão | MEDLINE | ID: mdl-38657597

RESUMO

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/.


Assuntos
Anemia Falciforme , Humanos , Anemia Falciforme/terapia , Alemanha , Transição para Assistência do Adulto , Guias de Prática Clínica como Assunto
8.
Zhonghua Yi Xue Za Zhi ; 104(14): 1092-1096, 2024 Apr 09.
Artigo em Chinês | MEDLINE | ID: mdl-38583038

RESUMO

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.


Assuntos
Transição para Assistência do Adulto , Urologia , Adolescente , Adulto Jovem , Humanos , Criança , China , Instalações de Saúde , Doença Crônica
9.
J Atheroscler Thromb ; 31(5): 501-519, 2024 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-38538336

RESUMO

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.


Assuntos
Dislipidemias , Humanos , Dislipidemias/terapia , Dislipidemias/epidemiologia , Japão/epidemiologia , Adulto , Transição para Assistência do Adulto , Criança
10.
Indian Pediatr ; 61(5): 475-481, 2024 May 15.
Artigo em Inglês | MEDLINE | ID: mdl-38517005

RESUMO

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.


Assuntos
Transição para Assistência do Adulto , Humanos , Índia , Adolescente , Transição para Assistência do Adulto/organização & administração , Transição para Assistência do Adulto/normas , Criança , Pediatria/organização & administração , Pediatria/normas , Doença Crônica/terapia , Necessidades e Demandas de Serviços de Saúde
11.
J Pediatr Surg ; 59(6): 1028-1036, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38493027

RESUMO

BACKGROUND: Despite surgical advances for complex congenital colorectal conditions, such as anorectal malformation (ARM) and Hirschsprung disease (HD), many adolescents require transfer from specialist pediatric to adult providers for ongoing care. METHODOLOGY: A systematic review of PubMed, MEDLINE and Embase was conducted to identify what is known about the transitional care of patients with ARM and HD (PROSPERO # CRD42022281558). The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) framework guided our reporting of studies that focused on the transition care of 10-30-year-olds with ARM and HD. RESULTS: Eight studies were identified that included patient and parent (n = 188), and/or clinician perspectives (n = 334). Patients and clinicians agreed that transitional care should commence early in adolescence to support transfer to adult care when a suitable level of maturation is reached. There was little evidence from patients that transfer happened in a timely or coordinated manner. Patients felt that clinicians did not always understand the significance of transfer to adult services. No models of transition care were identified. Surgeons ranked ARM and HD as the most common conditions to experience delayed transfer to adult care. Beyond pediatric surgeons, patients also highlighted the importance of general practitioners, transitional care coordinators and peer support groups for successful transition. CONCLUSIONS: There is little research focused on transitional care for patients with ARM and HD. Given evidence of delayed transfer and poor experiences, the development of models of transitional care appears essential.


Assuntos
Malformações Anorretais , Transição para Assistência do Adulto , Humanos , Adolescente , Malformações Anorretais/cirurgia , Adulto , Doença de Hirschsprung/cirurgia , Doença de Hirschsprung/terapia , Criança , Adulto Jovem
12.
J Clin Rheumatol ; 30(4): 159-167, 2024 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-38527973

RESUMO

ABSTRACT: Young adults with childhood-onset rheumatic diseases are more frequently establishing and continuing care with adult rheumatologists. The transfer of care can be challenging for both the young adult patients and their adult rheumatologists, in large part due to differences between pediatric-onset rheumatic diseases and their adult-onset counterparts, or due to the rarity of some pediatric-onset rheumatic conditions. Other challenges are due to cultural differences between pediatric and adult medical care and to the young adult needing to increasingly perform self-management skills that were previously managed by parents or other caregivers. In this review, we will provide a summary of strategies for working effectively with young adults as they transition to adult care. We will then discuss a subset of childhood-onset rheumatic diseases-including juvenile idiopathic arthritis, localized scleroderma, autoinflammatory diseases, pediatric-onset systemic lupus erythematosus, juvenile-onset dermatomyositis, and autoimmune encephalitis-for which clinical manifestations, management, and prognosis frequently differ between pediatric onset and adult onset. Our aim is to highlight differences that make caring for this population of transitioning young adults unique, providing tools and knowledge to empower the adult rheumatologist to care for these young adults in ways that are evidence-based, effective, efficient, and rewarding.


Assuntos
Doenças Reumáticas , Reumatologia , Transição para Assistência do Adulto , Humanos , Transição para Assistência do Adulto/organização & administração , Doenças Reumáticas/terapia , Reumatologia/métodos , Adulto , Adulto Jovem
13.
Pediatr Allergy Immunol ; 35(3): e14101, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38456636

RESUMO

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.


Assuntos
Asma , Transição para Assistência do Adulto , Adolescente , Adulto , Humanos , Asma/terapia , Estudos Prospectivos , Qualidade de Vida , Inquéritos e Questionários
14.
Lancet Child Adolesc Health ; 8(6): 443-455, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38552655

RESUMO

Polycystic ovary syndrome (PCOS) is a lifelong chronic condition that affects one in ten females and can be diagnosed in adolescence. As adolescents with PCOS transition to adulthood, counselling for lifestyle management and mental health concerns often transition from involving the family unit to increasingly individual-focused approaches. PCOS is associated with a large range of comorbidities affecting reproductive, metabolic, dermatological, and psychological health. The diagnosis and comorbidities of PCOS are influenced by pubertal hormones and need to be reassessed continuously to ensure that treatment remains appropriate for age and development. As young patients grow up, personal concerns often change, especially in relation to reproductive management. In this Review, we present prevalence rates, screening tools, and treatment recommendations for PCOS-related conditions, and we consider the diagnostic and clinical elements of optimal transition of care models that ensure continuity of comprehensive care for adolescents moving from the paediatric health-care system to the adult health-care system.


Assuntos
Síndrome do Ovário Policístico , Transição para Assistência do Adulto , Humanos , Síndrome do Ovário Policístico/terapia , Síndrome do Ovário Policístico/complicações , Adolescente , Feminino , Adulto Jovem , Adulto
15.
Clin J Oncol Nurs ; 28(2): 227-231, 2024 Mar 15.
Artigo em Inglês | MEDLINE | ID: mdl-38511924

RESUMO

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.


Assuntos
Sobreviventes de Câncer , Neoplasias , Transição para Assistência do Adulto , Humanos , Adolescente , Adulto Jovem , Estresse Financeiro , Atenção à Saúde , Neoplasias/terapia
16.
Appl Nurs Res ; 75: 151772, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38490800

RESUMO

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.


Assuntos
Diabetes Mellitus Tipo 1 , Transição para Assistência do Adulto , Adulto , Humanos , Masculino , Criança , Adolescente , Feminino , Diabetes Mellitus Tipo 1/tratamento farmacológico , Hemoglobinas Glicadas , Estudos Transversais , Controle Glicêmico
17.
Front Immunol ; 15: 1270451, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38510252

RESUMO

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.


Assuntos
Transição para Assistência do Adulto , Adulto , Humanos , Criança , Hospitais , Inquéritos e Questionários , Avaliação de Resultados da Assistência ao Paciente
18.
J Am Geriatr Soc ; 72(4): 1100-1111, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38407328

RESUMO

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.


Assuntos
Solidão , Transição para Assistência do Adulto , Humanos , Masculino , Feminino , Idoso , Estudos Retrospectivos , Estudos de Coortes , Ontário/epidemiologia
19.
J Pediatr Nurs ; 76: 1-15, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38309191

RESUMO

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.


Assuntos
Relações Pais-Filho , Pais , Humanos , Doença Crônica , Adolescente , Pais/psicologia , Masculino , Feminino , Transição para Assistência do Adulto , Criança , Confiança , Estados Unidos
20.
J Pediatr Nurs ; 76: 38-44, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38359543

RESUMO

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.


Assuntos
Diabetes Mellitus Tipo 1 , Controle Interno-Externo , Transição para Assistência do Adulto , Humanos , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 1/terapia , Adolescente , Masculino , Feminino , Adulto Jovem , Inquéritos e Questionários , Adulto
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