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1.
Eur J Pediatr ; 183(7): 3105-3115, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38668794

RESUMO

Transition of young people with chronic kidney disease (CKD) from paediatric to adult healthcare has been associated with poor outcomes, but few population-level studies examine trends in subgroups. We aimed to assess sociodemographic inequalities in changes in unplanned secondary care utilisation occurring across transfer to adult care for people with CKD in England. A cohort was constructed from routine healthcare administrative data in England of young people with childhood-diagnosed CKD who transitioned to adult care. The primary outcome was the number of emergency inpatient admissions and accident and emergency department (A&E) attendances per person year, compared before and after transfer. Injury-related and maternity admissions were excluded. Outcomes were compared via sociodemographic data using negative binomial regression with random effects. The cohort included 4505 individuals. Controlling for age, birth year, age at transfer, region and sociodemographic factors, transfer was associated with a significant decrease in emergency admissions (IRR 0.75, 95% CI 0.64-0.88) and no significant change in A&E attendances (IRR 1.10, 95% CI 0.95-1.27). Female sex was associated with static admissions and increased A&E attendances with transfer, with higher admissions and A&E attendances compared to males pre-transfer. Non-white ethnicities and higher deprivation were associated with higher unplanned secondary care use. CONCLUSION:  Sociodemographic inequalities in emergency secondary care usage were evident in this cohort across the transition period, independent of age, with some variation between admissions and A&E use, and evidence of effect modification by transfer. Such inequalities likely have multifactorial origin, but importantly, could represent differential meetings of care needs. WHAT IS KNOWN: • In chronic kidney disease (CKD), transfer from paediatric to adult healthcare is associated with declining health outcomes. • Known differences in CKD outcomes by sociodemographic factors have limited prior exploration in the context of transfer. WHAT IS NEW: • Population-level data was used to examine the impacts of transfer and sociodemographic factors on unplanned secondary care utilisation in CKD. • Healthcare utilisation trends may not reflect known CKD pathophysiology and there may be unexplored sociodemographic inequalities in the experiences of young people across transfer.


Assuntos
Serviço Hospitalar de Emergência , Disparidades em Assistência à Saúde , Insuficiência Renal Crônica , Transição para Assistência do Adulto , Humanos , Feminino , Masculino , Inglaterra/epidemiologia , Insuficiência Renal Crônica/terapia , Insuficiência Renal Crônica/epidemiologia , Adolescente , Transição para Assistência do Adulto/estatística & dados numéricos , Estudos Retrospectivos , Adulto Jovem , Serviço Hospitalar de Emergência/estatística & dados numéricos , Disparidades em Assistência à Saúde/estatística & dados numéricos , Criança , Adulto , Fatores Socioeconômicos , Pré-Escolar
2.
J Hosp Med ; 19(6): 495-504, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38517142

RESUMO

BACKGROUND: Young adults (YA) with childhood-onset chronic conditions-particularly YA with cystic fibrosis (CF), congenital heart disease (CHD), and sickle cell disease (SCD)-continue to have pediatric hospital admissions. Factors associated with this continued pediatric hospital use remain underexplored. OBJECTIVE: To determine if pediatric hospital use by YA differed (1) across condition and (2) within each condition by sociodemographic factors. METHODS: Conducted a cross-sectional analysis of admissions for YA 22-35 years with CF, CHD, and SCD from 2016 to 2020 in the National Inpatient Sample. Admissions for YA with CF, CHD, and SCD were identified by international classification of diseases, 10th revision-clinical modification diagnosis codes. To determine if conditions or sociodemographic factors were associated with YA pediatric hospital use, we used multivariable logistic regression with separate models for the different objectives. RESULTS: YA with SCD had lower odds of pediatric hospital use compared to YA with CF. Relationships between sociodemographic factors and pediatric hospital use varied. Black YA with both CF and CHD had lower odds of pediatric hospital use than white YA with CF and CHD. For YA with SCD, despite 17,810 (6.5%) having rural residence, zero (0) had pediatric hospital use; whereas YA with CF living in a rural area had greater odds of pediatric hospital use compared to urban residents. CONCLUSION: YA with SCD used pediatric hospitals less than YA with either CF or CHD. Coupled with our findings that Black YA with CF and CHD had less pediatric hospital use, these data may reflect systematic racial differences within pediatric to adult healthcare transition programs.


Assuntos
Hospitais Pediátricos , Transição para Assistência do Adulto , Humanos , Masculino , Estudos Transversais , Feminino , Hospitais Pediátricos/estatística & dados numéricos , Adulto , Transição para Assistência do Adulto/estatística & dados numéricos , Doença Crônica , Adulto Jovem , Fibrose Cística/terapia , Disparidades em Assistência à Saúde/estatística & dados numéricos , Anemia Falciforme/terapia , Anemia Falciforme/epidemiologia , Cardiopatias Congênitas/terapia , Estados Unidos , Hospitalização/estatística & dados numéricos
3.
JAMA Netw Open ; 4(9): e2127034, 2021 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-34581795

RESUMO

Importance: Health literacy has been shown to play an important role in transitions of care in adult populations, with low health literacy associated with adverse health outcomes. The role of health literacy in the transition from pediatric to adult care has been less well studied. Among adolescents and young adults with spina bifida, high rates of unsuccessful transition have been shown, but how patient health literacy affects transition readiness remains unknown. Objective: To determine whether health literacy is associated with transition readiness in adolescents and young adults with spina bifida. Design, Setting, and Participants: This cross-sectional study involved collection of patient-reported questionnaires between June 2019 and March 2020 at a multidisciplinary spina bifida center at a single, free-standing children's hospital. Patient demographic and clinical characteristics were obtained from medical record review. Patients were aged 12 years or older with a diagnosis of spina bifida (myelomeningocele and nonmyelomeningocele) whose primary language was English or Spanish. Data analysis was performed from October 2020 to March 2021. Exposures: Health literacy as assessed by the Brief Health Literacy Screening Tool. Main Outcomes and Measures: The primary outcome was total Transition Readiness Assessment Questionnaire (TRAQ) score, normalized into units of SD. Nested, multivariable linear regression models assessed the association between health literacy and TRAQ scores. Results: The TRAQ and Brief Health Literacy Screening Tool were completed by 200 individuals (median [range] age, 17.0 [12.0-31.0] years; 104 female participants [52.0%]). Most of the patients were younger than 18 years (110 participants [55.0%]) and White (136 participants [68.0%]) and had myelomeningocele (125 participants [62.5%]). The mean (SD) TRAQ score was 3.3 (1.1). Sixty-six participants (33.0%) reported inadequate health literacy, 60 participants (30.0%) reported marginal health literacy, and 74 participants (37.0%) reported adequate health literacy. In univariable analysis, health literacy, age, type of spina bifida, level of education, self-administration vs completion of the questionnaires with assistance, ambulatory status, and urinary incontinence were associated with total TRAQ score. In all nested, sequentially adjusted, multivariable models, higher health literacy remained a significant, stepwise, independent variable associated with higher TRAQ score. In the fully adjusted model, having adequate compared with inadequate health literacy was associated with an increase in normalized TRAQ score of 0.49 SD (95% CI, 0.19-0.79). Conclusions and Relevance: Patient-reported transition readiness is associated with health literacy, even after adjustment for education level and other demographic and clinical factors. Developing and implementing health literacy-sensitive care programs during the transition process may improve patient transition readiness.


Assuntos
Letramento em Saúde/estatística & dados numéricos , Disrafismo Espinal/psicologia , Transição para Assistência do Adulto/estatística & dados numéricos , Adolescente , Adulto , Criança , Estudos Transversais , Feminino , Humanos , Illinois , Masculino , Autorrelato , Inquéritos e Questionários , Adulto Jovem
4.
Pediatr Blood Cancer ; 68(6): e29030, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33788394

RESUMO

The cumulative burden of chronic health conditions as childhood cancer survivors transition to adult health care and insurance systems is unknown. We estimated the cumulative burden (N = 4612 survivors, 625 controls) in the St. Jude Lifetime Cohort. At 18 and 26 years old, survivors experienced (per 100 individuals) an average of 22.3 (95% confidence interval [CI]: 17.2-27.4) and 40.3 (95% CI: 34.8-45.8) disabling conditions versus 3.5 (95% CI: 2.0-5.0) and 5.7 (95% CI: 3.7-7.7) in controls, and 128.7 (95% CI: 119.5-137.8) and 240.5 (95% CI: 229.9-251.0) lower severity conditions versus 12.4 (95% CI: 8.9-16.0) and 51.3 (95% CI: 43.1-59.4) in controls. Survivors experience a high cumulative burden at key health care transition ages, underscoring the need to optimize access to care.


Assuntos
Sobreviventes de Câncer/psicologia , Doença Crônica/psicologia , Neoplasias/psicologia , Adolescente , Adulto , Idoso , Criança , Pré-Escolar , Humanos , Seguro Saúde/estatística & dados numéricos , Pessoa de Meia-Idade , Neoplasias/terapia , Transição para Assistência do Adulto/estatística & dados numéricos , Adulto Jovem
5.
PLoS One ; 15(10): e0240918, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33108396

RESUMO

OBJECTIVE: To determine rates of retention and viral suppression among adolescents living with perinatally-acquired HIV who remained in pediatric care compared to those who transitioned to adult care. METHODS: We evaluated a natural experiment involving adolescents living with perinatally-acquired HIV who were attending a government-supported antiretroviral clinic in KwaZulu-Natal, South Africa. Prior to 2011, all adolescents transitioned to adult care at 12 years of age. Due to a policy change, all adolescents were retained in pediatric care after 2011. We analyzed adolescents two years before and two years after this policy change. Outcomes were retention in care and HIV viral suppression one year after transition to adult care or the 13th birthday if remaining in pediatric care. RESULTS: In the natural experiment, 180 adolescents who turned 12 years old between 2011 and 2014 were evaluated; 35 (20%) transitioned to adult care under the old policy and 145 (80%) remained in pediatric care under the new policy. Adolescents who transitioned to the adult clinic had lower rates of retention in care (49%; 17/35) compared to adolescents remaining in the pediatric clinic (92%; 134/145; p<0.001). Retention in care was lower (ARR 0.59; 95%CI 0.43-0.82; p = 0.001) and viral suppression was similar (ARR = 1.06, 95%CI 0.89-1.26; p = 0.53) for adolescents who transitioned to adult care compared to adolescents remaining in pediatric care. CONCLUSION: Adolescents living with perinatally-acquired HIV appear to have higher retention in care when cared for in pediatric clinics compared to adult clinics. Longer-term follow-up is needed to fully assess viral suppression.


Assuntos
Fármacos Anti-HIV/uso terapêutico , Infecções por HIV/tratamento farmacológico , Retenção nos Cuidados/estatística & dados numéricos , Transição para Assistência do Adulto/estatística & dados numéricos , Adolescente , Adulto , Instituições de Assistência Ambulatorial , Criança , Feminino , Política de Saúde , Humanos , Masculino , África do Sul , Análise de Sobrevida , Transição para Assistência do Adulto/legislação & jurisprudência , Resultado do Tratamento
6.
Disabil Health J ; 13(4): 100937, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32418807

RESUMO

BACKGROUND: Due to a more stringent disability definition used for eligibility redetermination at age 18, individuals with disabilities may lose eligibility for the Supplement and Nutrition Assistance Program (SNAP). OBJECTIVE: This study examines how the transition to adulthood may affect the association between food security and self-rated health and healthcare needs for individuals with disabilities. METHODS: The study uses five years of data (2011-2015) from the National Health Interview Survey (NHIS). One health indicator, self-rated health status, and two indicators of unmet healthcare needs, delayed medical care and not receiving medical care due to cost, are analyzed as dependent variables. The effects of food security status on health and health-related outcomes are closely examined for the four groups: youth without disabilities, youth with disabilities, young adults without disabilities and young adults with disabilities. RESULTS: Results indicate a statistically significant association between food security status and self-rated health and unmet healthcare needs in late childhood and young adulthood. Such association is stronger for young adults than for youth. The association between low food security and self-rated health and health-related outcomes does not significantly differ between the two youth groups or the two young adult groups by disability status. CONCLUSIONS: Suggestions for improving accessibility of public food and nutrition programs are discussed. The study also suggests the importance of creating a healthcare system that benefits every member of the society.


Assuntos
Crianças com Deficiência/estatística & dados numéricos , Assistência Alimentar/estatística & dados numéricos , Segurança Alimentar/estatística & dados numéricos , Abastecimento de Alimentos/estatística & dados numéricos , Estado Nutricional , Transição para Assistência do Adulto/estatística & dados numéricos , Adolescente , Adulto , Feminino , Nível de Saúde , Humanos , Masculino , Adulto Jovem
7.
Rev Esp Enferm Dig ; 111(11): 833-838, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31566409

RESUMO

INTRODUCTION: transition is important for a successful follow-up of adolescents with inflammatory bowel disease (IBD). The objectives of the study were to establish the situation of transition in Spain and to identify needs, requirements and barriers to transition from pediatric and adult gastroenterologist perspectives. METHODS: a structured survey for self-completion using the REDCap platform was distributed via the Spanish Society for Pediatric Gastroenterology, Hepatology and Nutrition (SEGHNP) and the Spanish Working Group on Crohn's Disease and Ulcerative Colitis (GETECCU). The questionnaire contained closed and ranked questions concerning transition, perceived needs, organizational, clinician and patient related barriers to transition. RESULTS: one hundred and forty surveys were answered, 53% in pediatrics (PG) and 47% from adult gastroenterologists (AG) among 90 hospitals; 66% of them were reference centers. There was a higher response from pediatricians (18.2%) versus adult gastroenterologists (8.3%) (p = 0.03). A structured transition program is adequate in 42.2% centers. A well-structured transition was perceived as very important by 79.5% of PG and 63% of AG (p = 0.03). A higher proportion of both groups identified inadequacies in the preparation of adolescents for transfer (43% and 38%, p = ns). The main deficit areas were the lack of knowledge about disease and treatment as well as the lack of self-advocacy and care coordination. Lack of resources, time and critical mass of patients were the highest ranked barriers by both groups. AG and PG (54% and 55%) highlighted suboptimal training in adolescent medicine. CONCLUSIONS: in Spain, nearly half of the centers have developed a structured transition program. Lack of training, time and insufficient resources are the main barriers for a successful transition.


Assuntos
Doenças Inflamatórias Intestinais/terapia , Transição para Assistência do Adulto , Adolescente , Atitude do Pessoal de Saúde , Estudos Transversais , Gastroenterologia , Acessibilidade aos Serviços de Saúde , Necessidades e Demandas de Serviços de Saúde , Humanos , Pediatria , Espanha , Transição para Assistência do Adulto/normas , Transição para Assistência do Adulto/estatística & dados numéricos
8.
BMC Med Res Methodol ; 19(1): 179, 2019 08 20.
Artigo em Inglês | MEDLINE | ID: mdl-31429715

RESUMO

BACKGROUND: Health services have not provided adequate support for young people with long term health conditions to transfer from child to adult services. National Institute of Health and Care (NICE) guidance on transition has been issued to address these gaps. However, data are often sparse about the number of young adults who might need to transition. Using Attention Deficit Hyperactivity Disorder (ADHD) as an exemplar, this study used an existing surveillance system and a case note review to capture the incidence of the transition process, and compared and contrasted the findings. METHODS: The Child and Adolescent Psychiatry Surveillance System (CAPSS) was used to estimate the incident transition of young people with Attention Deficit Hyperactivity Disorder (ADHD) from child to adult services. This involves consultant child and adolescent psychiatrists from the United Kingdom (UK) and Republic of Ireland (ROI) reporting relevant young people as they are seen in clinics. In parallel, a case note review was conducted using the Maudsley Biomedical Research Centre (BRC) Clinical Records Interactive Search (CRIS). The study period ran for twelve months with a nine month follow up to see how the transition proceeded. RESULTS: CRIS identified 76 cases in the study period, compared to 18 identified using surveillance via CAPSS. Methodological issues were experienced using both methods. Surveillance issues; eligibility criteria confusion, reporting errors, incomplete questionnaires, difficulties contacting clinicians, and surveillance systems do not cover non-doctors and psychiatrists who are not consultants. Case note review issues using CRIS included the need for researchers to interpret clinical notes, the availability and completeness of data in the notes, and data limited to the catchment of one particular mental health trust. CONCLUSIONS: Both methods demonstrate strengths and weaknesses; the combination of both methods in the absence of strong routinely collected data, allowed a more robust estimate of the level of need for service planning and commissioning.


Assuntos
Serviços de Saúde do Adolescente/estatística & dados numéricos , Transtorno do Deficit de Atenção com Hiperatividade/terapia , Cuidado da Criança/estatística & dados numéricos , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Avaliação das Necessidades/estatística & dados numéricos , Transição para Assistência do Adulto/estatística & dados numéricos , Adolescente , Serviços de Saúde do Adolescente/normas , Adulto , Transtorno do Deficit de Atenção com Hiperatividade/psicologia , Criança , Cuidado da Criança/normas , Necessidades e Demandas de Serviços de Saúde/normas , Humanos , Avaliação das Necessidades/normas , Vigilância da População/métodos , Transição para Assistência do Adulto/normas , Adulto Jovem
9.
J Pediatr Gastroenterol Nutr ; 69(3): 310-316, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31124888

RESUMO

OBJECTIVE: Paediatric-onset inflammatory bowel disease (IBD) is different from adult-onset IBD with respect to disease severity and its effect on growth and development. Care of paediatric IBD patients in some countries is dispersed among paediatricians and adult care providers, which may result in different outcomes. This study aims to assess the effect of care setting (paediatric vs adult-oriented) on health care utilization in adolescent IBD patients. METHODS: This is a Dutch population-based cohort study based on an insurance claims database covering 4.2 million insurees (approximately 25% of the Dutch population). We identified IBD patients ages 16 to 18 years and followed them until the age of 19 years or transfer to adult care, whichever came first. We categorized patients according to care setting: paediatric versus adult-oriented. We defined outcomes as corticosteroid use, IBD-related hospital admission, IBD-related surgery, and biological use. We estimated Cox proportional hazards regression models to control for confounding by indication. RESULTS: Among 626 patients, 380 (61%) were in paediatric and 246 (39%) in adult-oriented care. In paediatric care, patients were less likely to be treated with corticosteroids (hazard ratio [HR] 0.72, 95% confidence interval [CI] 0.52-0.99) or biologicals (HR 0.57, 95% CI 0.34-0.97), and had fewer IBD-related hospital admissions (HR 0.58, 95% CI 0.37-0.92). CONCLUSION: In a large and representative community cohort of adolescents with IBD, treatment in paediatric care setting was associated with significantly lower steroid and biological use, without increase in hospital admissions. These results might be used to optimize clinical care for adolescents with IBD.


Assuntos
Serviços de Saúde do Adolescente/estatística & dados numéricos , Doenças Inflamatórias Intestinais/epidemiologia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Adolescente , Adulto , Estudos de Coortes , Feminino , Hospitalização/estatística & dados numéricos , Humanos , Revisão da Utilização de Seguros , Masculino , Países Baixos/epidemiologia , Modelos de Riscos Proporcionais , Transição para Assistência do Adulto/estatística & dados numéricos , Adulto Jovem
10.
Psychol Health Med ; 24(9): 1148-1157, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-30971099

RESUMO

This study was conducted to evaluate predictive factors of diabetes-related emergency room (ER) visits and hospitalizations among adolescents and young adults (AYA) with type 1 diabetes (T1D). Baseline demographic, medical, and psychosocial variables were collected for 177 AYA with T1D. Medical records were reviewed to identify ER visits and hospitalizations related to diabetes. Those with diabetes-related events had significantly higher hemoglobin A1c (A1c) values at baseline (p = 0.0001) and during an average 3.36 years of follow-up (p < 0.0001). Participants with events were more likely to have Medicaid or no insurance vs. private insurance (p = 0.0006) and were more likely to be on multiple daily injections vs. insulin pumps (p = 0.0159). Participants with events reported greater diabetes impact on their lives and their parents reported less autonomy in AYA with events (p = 0.0435). These results suggest that when participants were transferring from pediatric to adult care services, factors such as A1c, insurance status and diabetes treatment are associated with diabetes-related events. Further research is needed to elucidate a causative relationship and develop focused interventions to reduce diabetes-related events during this high-risk time. Autonomy should be further explored to determine its role in diabetes-related events during this transition period.


Assuntos
Diabetes Mellitus Tipo 1/terapia , Hospitalização/estatística & dados numéricos , Seguro Saúde/estatística & dados numéricos , Medicaid/estatística & dados numéricos , Autonomia Pessoal , Transição para Assistência do Adulto/estatística & dados numéricos , Adolescente , Adulto , Diabetes Mellitus Tipo 1/sangue , Diabetes Mellitus Tipo 1/tratamento farmacológico , Diabetes Mellitus Tipo 1/psicologia , Feminino , Seguimentos , Humanos , Masculino , Qualidade de Vida , Estados Unidos , Adulto Jovem
11.
Soc Psychiatry Psychiatr Epidemiol ; 54(8): 955-963, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-30843086

RESUMO

BACKGROUND: Poor transitions to adult care from child and adolescent mental health services may increase the risk of disengagement and long-term negative outcomes. However, studies of transitions in mental health care are commonly difficult to administer and little is known about the determinants of successful transition. The persistence of health inequalities related to access, care, and outcome is now well accepted including the inverse care law which suggests that those most in need of services may be the least likely to obtain them. We sought to examine the pathways and determinants of transition, including the role of social class. METHOD: A retrospective systematic examination of electronic records and case notes of young people eligible to transition to adult care over a 4-year period across five Health and Social Care NHS Trusts in Northern Ireland. RESULTS: We identified 373 service users eligible for transition. While a high proportion of eligible patients made the transition to adult services, very few received an optimal transition process and many dropped out of services or subsequently disengaged. Clinical factors, rather than social class, appear to be more influential in the transition pathway. However, those not in employment, education or training (NEET) were more likely (OR 3.04: 95% CI 1.34, 6.91) to have been referred to Adult Mental Health Services (AMHS), as were those with a risk assessment or diagnosis (OR 4.89: 2.45, 9.80 and OR 3.36: 1.78, 6.34), respectively. CONCLUSIONS: Despite the importance of a smoother transition to adult services, surprisingly, few patients experience this. There is a need for stronger standardised policies and guidelines to ensure optimal transitional care to AMHS. The barriers between different arms of psychiatry appear to persist. Joint working and shared arrangements between child and adolescent and adult mental health services should be fostered.


Assuntos
Serviços de Saúde do Adolescente/estatística & dados numéricos , Procedimentos Clínicos/estatística & dados numéricos , Serviços de Saúde Mental/estatística & dados numéricos , Determinantes Sociais da Saúde/estatística & dados numéricos , Transição para Assistência do Adulto/estatística & dados numéricos , Adolescente , Feminino , Humanos , Masculino , Irlanda do Norte , Participação do Paciente/estatística & dados numéricos , Estudos Retrospectivos , Adulto Jovem
12.
Cancer ; 124(20): 4064-4071, 2018 10 15.
Artigo em Inglês | MEDLINE | ID: mdl-30291804

RESUMO

BACKGROUND: Low cancer clinical trial (CCT) enrollment may contribute to survival disparities affecting adolescents and young adults (AYAs) (ages 15-39 years). The objective of this study was to evaluate whether differences in CCT availability related to treatment site could explain the low CCT enrollment. METHODS: This prospective, observational cohort study was conducted at an academic children's hospital and its affiliated but geographically separated adult cancer hospital within a National Cancer Institute-designated Comprehensive Cancer Center. For consecutive, newly diagnosed AYA patients, it was determined whether an appropriate CCT existed nationally, was available at the treatment site, and was used for enrollment. Proportions of AYAs in these categories were compared between sites using the chi-square test. RESULTS: One hundred fifty-two consecutive AYA patients were included from the children's hospital (n = 68; ages 15-20 years) and the adult cancer hospital (n = 84; ages 18-39 years). Although there was no difference in CCT existence for individual AYA patients by site (children's hospital [36 of 68 patients; 52.9%] vs adult cancer hospital [45 of 84 patients; 53.6%]; P = .938), CCT availability was significantly lower at the adult cancer hospital (14 of 84 patients [16.7%] vs 30 of 68 [44.1%] at the children's hospital; P < .001). The proportion of AYAs enrolled was low at both sites (8 of 68 patients [11.8%] vs 6 of 84 patients [7.1%], respectively; P = .327). Fewer existing CCTs were available at the adult cancer hospital (4 of 27 patients [14.8%] vs 8 of 14 patients [57.1%], respectively), and those were directed toward solid tumors and new agents. CONCLUSIONS: Efforts to improve low CCT enrollment among AYAs should be differentiated by treatment site. In the adult setting, these efforts should be aimed at improving CCT availability by overcoming site-level barriers to opening existing CCTs.


Assuntos
Institutos de Câncer/estatística & dados numéricos , Ensaios Clínicos como Assunto/estatística & dados numéricos , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Hospitais Pediátricos/estatística & dados numéricos , Neoplasias/epidemiologia , Neoplasias/terapia , Seleção de Pacientes , Adolescente , Adulto , Fatores Etários , Institutos de Câncer/organização & administração , Ensaios Clínicos como Assunto/organização & administração , Estudos de Coortes , Feminino , Hospitais Pediátricos/organização & administração , Humanos , Masculino , Oncologia/organização & administração , Oncologia/normas , Oncologia/estatística & dados numéricos , Estudos Multicêntricos como Assunto/normas , Estudos Multicêntricos como Assunto/estatística & dados numéricos , Estudos Prospectivos , Transição para Assistência do Adulto/organização & administração , Transição para Assistência do Adulto/normas , Transição para Assistência do Adulto/estatística & dados numéricos , Adulto Jovem
14.
PLoS One ; 13(6): e0198802, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29894519

RESUMO

INTRODUCTION: The period of transition from pediatric to adult care has been associated with poor health outcomes among 10-19 year old adolescents living with HIV (ALHIV). This has prompted a focus on the quality of transition services, especially in high ALHIV-burden countries. Due to lack of guidelines, there are no healthcare transition standards for Nigeria's estimated 240,000 ALHIV. We conducted a nationwide survey to characterize routine transition procedures for Nigerian ALHIV. MATERIALS AND METHODS: This cross-sectional survey was conducted at public healthcare facilities supported by five local HIV service implementing partners. Comprehensive HIV treatment facilities with ≥1 year of HIV service provision and ≥20 ALHIVs enrolled were selected. A structured questionnaire assessed availability of treatment, care and transition services for ALHIV. Transition was defined as a preparatory process catering to the medical, psychosocial, and educational needs of adolescents moving from pediatric to adult care. Comprehensive transition services were defined by 6 core elements: policy, tracking and monitoring, readiness evaluation, planning, transfer of care, and follow-up. RESULTS: All 152 eligible facilities were surveyed and comprised 106 (69.7%) secondary and 46 (30.3%) tertiary centers at which 17,662 ALHIV were enrolled. The majority (73, 48.3%) of the 151 facilities responding to the "clinic type" question were family-centered and saw all clients together regardless of age. Only 42 (27.8%) facilities had an adolescent-specific HIV clinic; 53 (35.1%) had separate pediatric/adolescent and adult HIV clinics, of which 39 (73.6%) reported having a transfer/transition policy. Only 6 (15.4%) of these 39 facilities reported having a written protocol. There was a bimodal peak at 15 and 18 years for age of ALHIV transfer to adult care. No surveyed facility met the study definition for comprehensive transition services. CONCLUSIONS: Facilities surveyed were more likely to have non-specialized HIV treatment services and had loosely-defined, abrupt transfer versus transition practices, which lacked the core transition elements. Evidence-based standards of transitional care tailored to non-specialized HIV treatment programs need to be established to optimize transition outcomes among ALHIV in Nigeria and in similar settings.


Assuntos
Serviços de Saúde do Adolescente/normas , Atenção à Saúde , Infecções por HIV/prevenção & controle , HIV/isolamento & purificação , Equipe de Assistência ao Paciente/normas , Transição para Assistência do Adulto/normas , Adolescente , Serviços de Saúde do Adolescente/estatística & dados numéricos , Adulto , Criança , Estudos Transversais , Feminino , Infecções por HIV/epidemiologia , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Nigéria/epidemiologia , Transição para Assistência do Adulto/estatística & dados numéricos , Adulto Jovem
15.
J Clin Nurs ; 27(9-10): 2022-2030, 2018 May.
Artigo em Inglês | MEDLINE | ID: mdl-29493839

RESUMO

AIMS AND OBJECTIVES: To describe the influence of the social determinants of health on health care seeking among young adults after they left foster care. BACKGROUND: Extensive research suggests that stakeholders in foster care systems throughout the world struggle to consistently and effectively manage the health and well-being of youth. These struggles extend beyond time in foster care as indicated by poor health and social outcomes throughout the life course. Evidence that describes how young adults address health and related social needs after leaving foster care is missing. DESIGN: A phenomenological design, Phenomenology of Practice, was used to collect data. Content analysis was used to analyse the data, using constructs from the Healthy People 2020 SDOH Model to organise the data. METHODS: Thirteen young adults who left foster care in the southwestern US were recruited using convenience sampling. Data were collected via individual interviews. RESULTS: Young adults formerly in foster care reported using and lacking social support networks to navigate SDOH. The interrelatedness of SDOH on health outcomes after foster care is evident. CONCLUSIONS: Social support networks can help explain how young adults are both able and unable to navigate systems to address health issues. Evaluating social networks used to access care is an important aspect of assessment and intervention for these vulnerable young adults. RELEVANCE TO CLINICAL PRACTICE: Healthcare providers facilitate healthcare access for young adults who have been in foster care through evaluation of social determinants. Assessment and care planning based on social determinants for those who have been in foster care are critical to ensure the efficacy of interventions designed to address health outcomes. Social support systems are key factors for young adults formerly in foster care to access resources, substantiating the need for ongoing assessment and development of these support systems.


Assuntos
Serviços de Saúde do Adolescente/estatística & dados numéricos , Atitude Frente a Saúde , Criança Acolhida/psicologia , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Determinantes Sociais da Saúde , Apoio Social , Transição para Assistência do Adulto/estatística & dados numéricos , Adolescente , Adulto , Feminino , Humanos , Masculino , Estados Unidos , Adulto Jovem
16.
J Pediatr ; 197: 214-220, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29571933

RESUMO

OBJECTIVE: To compare healthcare transition planning in adolescents with Down syndrome with adolescents with other special healthcare needs. STUDY DESIGN: Data were drawn from the 2009-2010 National Survey of Children with Special Health Care Needs, a nationally representative sample with 17 114 adolescents aged 12-17 years. Parents were asked whether providers and the study child had discussed shifting to an adult provider, changing healthcare needs, maintaining health insurance coverage, and taking responsibility for self-care. The transition core outcome was a composite measure based on the results of these 4 questions. Multivariable logistic regression determined the association between Down syndrome and the transition core outcome as well as each of the 4 individual component measures. RESULTS: Although 40% of adolescents with other special healthcare needs met the transition core outcome, 11.0% of adolescents with Down syndrome met this outcome. Adolescents with Down syndrome were less likely to be encouraged to take responsibility for their health (32.2% vs 78.4%). After adjustment for demographic, socioeconomic, and health-related factors, adolescents with Down syndrome had 4 times the odds of not meeting the transition core outcome. For the component measures, Down syndrome adolescents had 4 times the odds of not being encouraged to take responsibility for self-care. Medical home access increased the odds of transition preparation. CONCLUSIONS: Adolescents with Down syndrome experience disparities in access to transition services. Provider goals for adolescents with Down syndrome should encourage as much independence as possible in their personal care and social lives.


Assuntos
Síndrome de Down/terapia , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Disparidades em Assistência à Saúde/estatística & dados numéricos , Transição para Assistência do Adulto/estatística & dados numéricos , Adolescente , Adulto , Criança , Estudos Transversais , Crianças com Deficiência/estatística & dados numéricos , Feminino , Inquéritos Epidemiológicos , Humanos , Masculino , Avaliação das Necessidades/estatística & dados numéricos , Estados Unidos
18.
Diabet Med ; 35(4): 504-512, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-29377258

RESUMO

AIM: To describe factors associated with transfer from paediatric to adult care and poor glycaemic control among young adults with Type 2 diabetes, using the SEARCH for Diabetes in Youth study. METHODS: Young adults with Type 2 diabetes were included if they had a baseline SEARCH visit while in paediatric care at < 18 years and ≥ 1 follow-up SEARCH visit thereafter at 18-25 years. At each visit, HbA1c , BMI, self-reported demographic and healthcare provider data were collected. Associations of demographic factors with transfer of care and poor glycaemic control (HbA1c ≥ 75 mmol/mol; 9.0%) were explored with multivariable logistic regression. RESULTS: 182 young adults with Type 2 diabetes (36% male, 75% minority, 87% with obesity) were included. Most (n = 102, 56%) reported transfer to adult care at follow-up; a substantial proportion (n = 28, 15%) reported no care and 29% did not transfer. Duration of diabetes [odds ratio (OR) 1.4, 95% confidence interval (95% CI) 1.1, 1.8] and age at diagnosis (OR 1.8, 95% CI 1.4, 2.4) predicted leaving paediatric care. Transfer to adult or no care was associated with a higher likelihood of poor glycaemic control at follow-up (adult: OR 4.5, 95% CI 1.8, 11.2; none: OR 4.6, 95% CI 1.4, 14.6), independent of sex, age, race/ethnicity or baseline HbA1c level. CONCLUSIONS: Young adults with Type 2 diabetes exhibit worsening glycaemic control and loss to follow-up during the transfer from paediatric to adult care. Our study highlights the need for development of tailored clinical programmes and healthcare system policies to support the growing population of young adults with youth-onset Type 2 diabetes.


Assuntos
Diabetes Mellitus Tipo 2/terapia , Transição para Assistência do Adulto/estatística & dados numéricos , Adolescente , Adulto , Distribuição por Idade , Idade de Início , Análise de Variância , Glicemia/metabolismo , Diabetes Mellitus Tipo 2/sangue , Feminino , Hemoglobinas Glicadas/metabolismo , Humanos , Cobertura do Seguro/estatística & dados numéricos , Seguro Saúde/estatística & dados numéricos , Masculino , Resultado do Tratamento , Adulto Jovem
19.
Early Interv Psychiatry ; 12(3): 505-512, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-28488369

RESUMO

In a context of international concern about early adult mental health service provision, this study identifies characteristics and service outcomes of young people with attention-deficit hyperactivity disorder (ADHD) reaching the child and adolescent mental health service (CAMHS) transition boundary (TB) in Ireland. The iTRACK study invited all 60 CAMHS teams in Ireland to participate; 8 teams retrospectively identified clinical case files for 62 eligible young people reaching the CAMHS TB in all 4 Health Service Executive Regions. A secondary case note analysis identified characteristics, co-morbidities, referral and service outcomes for iTRACK cases with ADHD (n = 20). Two-thirds of young people with ADHD were on psychotropic medication and half had mental health co-morbidities, yet none was directly transferred to public adult mental health services (AMHS) at the TB. Nearly half were retained in CAMHS, for an average of over a year; most either disengaged from services (40%) and/or actively refused transfer to AMHS (35%) at or after the TB. There was a perception by CAMHS clinicians that adult services did not accept ADHD cases or lacked relevant service/expertise. Despite high rates of medication use and co-morbid mental health difficulties, there appears to be a complete absence of referral to publicly available AMHS for ADHD youth transitioning from CAMHS in Ireland. More understanding of obstacles and optimum service configuration is essential to ensure that care is both available and accessible to young people with ADHD.


Assuntos
Serviços de Saúde do Adolescente , Transtorno do Deficit de Atenção com Hiperatividade/terapia , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Serviços de Saúde Mental , Transição para Assistência do Adulto/estatística & dados numéricos , Adolescente , Adulto , Transtorno do Deficit de Atenção com Hiperatividade/tratamento farmacológico , Criança , Feminino , Humanos , Irlanda , Masculino , Estudos Retrospectivos
20.
J Pediatr Gastroenterol Nutr ; 66(2): 281-285, 2018 02.
Artigo em Inglês | MEDLINE | ID: mdl-28753177

RESUMO

OBJECTIVES: The transition of inflammatory bowel disease (IBD) patients from pediatric to adult care can be challenging. Developing an effective transition intervention requires assessing the current transition experience for potential improvements, determining preferred content and format, and assessing patients' transition skills. METHODS: This mixed-methods study of 20 transitioned IBD patients (ages 17-20 years) used semistructured interviews and validated assessments of self-management/self-advocacy and IBD knowledge. Interviews were analyzed thematically. Assessment scores were compared with published reference data by estimating proportion or mean differences and 95% confidence intervals (CIs). RESULTS: The concept of a transition intervention was well-received by participants. Preferred content centered on medications, disease and what to expect. Preferred ways to acquire knowledge were one-on-one instruction, handouts, and websites. Identified themes were "individualized and multifaceted," "teach about transition," and "support the shift in responsibility." Among participants, 95% did not achieve 90% mastery of transition skills (0.6% higher [95% CI -10.7% to 9.5%] than the reference estimate) and the mean knowledge score was 15.15 (3.86 [95% CI 2.27 to 5.45] points higher than the reference estimate). CONCLUSIONS: We have identified preferred intervention formats and content as well as skill areas to target for improvement. As a result of this work, we will design a website intervention pertaining to identified themes.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Doenças Inflamatórias Intestinais/terapia , Transição para Assistência do Adulto/estatística & dados numéricos , Adolescente , Feminino , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Humanos , Masculino , Satisfação do Paciente/estatística & dados numéricos , Autocuidado/estatística & dados numéricos , Inquéritos e Questionários , Adulto Jovem
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