RESUMO
BACKGROUND AND OBJECTIVES: Adolescents with cardiac disease are at risk for life-changing complications and premature death. The importance of advance care planning (ACP) in adults with congenital heart disease and in pediatric patients with HIV and cancer has been demonstrated. ACP preferences of adolescents with heart disease have not been evaluated. We describe ACP preferences of adolescents with heart disease and compare with those of their caregivers. METHODS: Outpatient adolescents aged 12 to 18 years with heart failure, cardiomyopathy, heart transplantation, or who were at risk for cardiomyopathy, as well as their caregivers, completed self-administered questionnaires which evaluated participants' opinions regarding content and timing of ACP discussions, preferences for end-of-life communication, and emotional responses to ACP. RESULTS: Seventy-eight adolescents and 69 caregivers participated, forming 62 adolescent-caregiver dyads. Adolescents and caregivers reported that adolescent ACP discussions should occur early in the disease course (75% and 61%, respectively). Adolescents (92%) wanted to be told about terminal prognosis, whereas only 43% of caregivers wanted the doctor to tell their child this information. Most adolescents (72%) and caregivers (67%) anticipated that discussing ACP would make the adolescent feel relieved the medical team knew their wishes. Most caregivers (61%) believed that adolescents would feel stress associated with ACP discussions, whereas only 31% of adolescents anticipated this. CONCLUSIONS: Adolescents and their caregivers agree that ACP should occur early in disease course. There are discrepancies regarding communication of prognosis and perceived adolescent stress related to ACP discussions. Facilitated conversations between patient, caregiver, and providers may align goals of care and communication preferences.
Assuntos
Planejamento Antecipado de Cuidados/tendências , Cuidadores/psicologia , Cuidadores/tendências , Cardiopatias/psicologia , Preferência do Paciente/psicologia , Inquéritos e Questionários , Adolescente , Adulto , Planejamento Antecipado de Cuidados/normas , Criança , Estudos Transversais , Feminino , Cardiopatias/terapia , Humanos , Masculino , Pessoa de Meia-Idade , Transferência de Pacientes/normas , Transferência de Pacientes/tendências , Inquéritos e Questionários/normasRESUMO
BACKGROUND: Little is known on the trends of aeromedical retrieval (AR) during social isolation. AIM: To compare the pre, lockdown, and post-lockdown AR patient characteristics during a period of Coronavirus 2019 (COVID-19) social isolation. METHODS: An observational study with retrospective data collection, consisting of AR between 26 January and 23 June 2020. RESULTS: There were 16 981 AR consisting of 1983 (11.7%) primary evacuations and 14 998 (88.3%) inter-hospital transfers, with a population median age of 52 years (interquartile range 29.0-69.0), with 49.0% (n = 8283) of the cohort being male and 38.0% (n = 6399) being female. There were six confirmed and 230 suspected cases of COVID-19, with the majority of cases (n = 134; 58.3%) in the social isolation period. As compared to pre-restriction, the odds of retrieval for the restriction and post-restriction period differed across time between the major diagnostic groups. This included, an increase in cardiovascular retrieval for both restriction and post-restriction periods (odds ratio (OR) 1.12, 95% confidence interval (CI) 1.02-1.24 and OR 1.18 95%, CI 1.08-1.30 respectively), increases in neoplasm in the post restriction period (OR 1.31, 95% CI 1.04-1.64) and increases for congenital conditions in the restriction period (OR 2.56, 95% CI 1.39-4.71). Cardiovascular and congenital conditions had increased rates of priority 1 patients in the restriction and post restriction periods. There was a decrease in endocrine and metabolic disease retrievals in the restriction period (OR 0.72, 95% CI 0.53-0.98). There were lower odds during the post-restriction period for retrievals of the respiratory system (OR 0.78, 95% CI 0.67-0.93), and disease of the skin (OR 0.78, 95% CI 0.6-1.0). Distribution between the 2019 and 2020 time periods differed (P < 0.05), with the lockdown period resulting in a significant reduction in activity. CONCLUSION: The lockdown period resulted in increased AR rates of circulatory and congenital conditions.
Assuntos
Resgate Aéreo , COVID-19/epidemiologia , Controle de Doenças Transmissíveis/tendências , Transferência de Pacientes/tendências , Quarentena/tendências , Adulto , Idoso , Austrália/epidemiologia , Controle de Doenças Transmissíveis/métodos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos RetrospectivosRESUMO
BACKGROUND AND PURPOSE: Healthcare systems are challenged to provide access to thrombectomy in acute stroke patients. Either the "drip and ship" or "mothership" models result in increased numbers of patients in the endovascular stroke centre (ESC). We describe our approach for a "drip, ship, retrieve and leave" model repatriating patients immediately or within 24 hours of thrombectomy. METHODS: We included consecutive patients who underwent thrombectomy from January 2016 to June 2018. Patients from local region primary stroke centres (PSC) are immediately repatriated and those from remote region PSCs are admitted for 24 hours before repatriation. Key parameters recorded included clinical, radiological and timeline data as well as 90-day modified Rankin Scale (mRS). Patients who stayed beyond the intended time period in the ESC were analysed. RESULTS: From January 2016 to June 2018, 435 patients were transferred, with 352 patients in the local region group and 83 in the remote region group. The median NIHSS was 16 with a median ASPECTS of 9. Good functional outcome was seen in 47% of patients with a mortality rate of 19%. The local region group that were repatriated at the intended time period had a 90-day mRS 0-2 of 47% compared with 20% of those admitted to the ESC (P=0.006). Mortality rates were 20% and 27% respectively (P=0.377). The remote region group, repatriated at 24 hours' post-emergency endovascular thrombectomy had 90-day mRS 0-2 of 65% compared with 41% in the group admitted (P=0.042). Mortality rates were 4% and 22% respectively (P=0.007). CONCLUSION: This model enables the treatment of large numbers of patients with large vessel occlusion acute ischaemic stroke with thrombectomy within a national stroke service and system of care which would not otherwise be facilitated.
Assuntos
Isquemia Encefálica/cirurgia , AVC Isquêmico/cirurgia , Transferência de Pacientes/tendências , Cuidados Pós-Operatórios/tendências , Trombectomia/tendências , Tempo para o Tratamento/tendências , Adulto , Idoso , Idoso de 80 Anos ou mais , Isquemia Encefálica/diagnóstico por imagem , Isquemia Encefálica/epidemiologia , Feminino , Humanos , Irlanda/epidemiologia , AVC Isquêmico/diagnóstico por imagem , AVC Isquêmico/epidemiologia , Masculino , Pessoa de Meia-Idade , Transferência de Pacientes/métodos , Cuidados Pós-Operatórios/métodos , Estudos Retrospectivos , Trombectomia/métodos , Resultado do Tratamento , Adulto JovemRESUMO
BACKGROUND: Patients seeking second opinions are a challenge for the colorectal cancer provider because of complexity, failed therapeutic relationship with another provider, need for reassurance, and desire for exploration of treatment options. OBJECTIVE: The purpose of this study was to describe the patient and treatment characteristics of patients seeking initial and second opinions in colorectal cancer care at a multidisciplinary colorectal cancer clinic. DESIGN: This was a retrospective cohort study. SETTINGS: A prospectively collected clinical registry of a multidisciplinary colorectal cancer clinic was included. PATIENTS: The study included patients with colon or rectal cancer seen from 2012 to 2017. MAIN OUTCOME MEASURES: Data were analyzed for initial versus second opinion and demographic and clinical characteristics. RESULTS: Of 1711 patients with colorectal cancer, 1008 (58.9%) sought an initial opinion and 700 (40.9%) sought a second opinion. As compared with initial-opinion patients, second-opinion patients were more likely to have stage IV disease (OR = 1.94 (95% CI, 1.47-2.58)), recurrent disease (OR = 1.67 (95% CI, 1.13-2.46)), and be ages 40 to 49 years (OR = 1.47 (95% CI, 1.02-2.12)). Initial- and second-opinion cohorts were similar in terms of sex, race, and proportion of colon versus rectal cancer. Among second-opinion patients, 246 (35%) transitioned their care to the multidisciplinary colorectal cancer clinic. LIMITATIONS: We were unable to capture the final treatment plan for those patients who did not transfer care to the multidisciplinary colorectal cancer clinic. CONCLUSIONS: Patients seeking a second opinion represent a unique subset of patients with colorectal cancer. In general, they are younger and more likely to have stage IV or recurrent disease than patients seeking an initial opinion. Although transfer of care to a multidisciplinary colorectal cancer clinic after second opinion is lower than for initial consultations, multidisciplinary colorectal cancer clinics provide an important role for patients with complex disease characteristics and treatment needs. See Video Abstract at http://links.lww.com/DCR/B192. CARACTERíSTICAS DE LOS PACIENTES QUE BUSCAN UNA SEGUNDA OPINIóN EN CLíNICAS MULTIDISCIPLINARIAS ESPECIALIZADAS EN CáNCER COLORECTAL: Los pacientes que buscan una segunda opinión son un desafío para el médico que trata el cáncer colorrectal debido a la complejidad de la situación, a la relación terapéutica fallida con otro especialista, a la necesidad de tranquilidad y el deseo de explorar otras opciones del tratamiento.El describir las características y el tratamiento de los pacientes que buscan opiniones iniciales y secundarias en la atención del cáncer colorrectal en una clínica especializada de manera multidisciplinaria en cáncer colorrectal.Este es un estudio de cohortes retrospectivo.Registro clínico de casos obtenidos prospectivamente en una clínica especializada de manera multidisciplinaria en cáncer colorrectal.Todos aquellos pacientes con cáncer de colon o recto examinados entre 2012-2017.Se analizaron los datos obtenidos en la opinión inicial y se compararon con la segunda opinión, se revisaron tanto sus características demográficas como clínicas.De 1711 pacientes con cáncer colorrectal, 1008 (58.9%) buscaron una opinión inicial, 700 (40.9%) buscaron una segunda opinión. En comparación con los pacientes de opinión inicial, los pacientes de segunda opinión presentaron más probabilidades de tener enfermedad en estadio IV (OR 1.94, IC 95% 1.47-2.58), enfermedad recurrente (OR 1.67, IC 95% 1.13-2.46) y tener edades entre 40 y 49 (O 1.47, IC 95% 1.02-2.12). Las cohortes iniciales y de segunda opinión fueron similares en términos de género, raza y proporción del cáncer de colon versus cáncer de recto. Entre los pacientes de segunda opinión, 246 (35%) transfirieron su tratamiento hacia una clínica multidisplinaria especializada en cáncer colorrectal.No se obtuvieron los planes del tratamiento final de aquellos pacientes que no transfirieron sus cuidados hacia una la clínica especializada en cáncer colorrectal.Los pacientes que buscan una segunda opinión representan un subconjunto único de personas con cáncer colorrectal. En general, son más jóvenes y tienen más probabilidades de tener enfermedad en estadio IV o recurrente, con relación a aquellos pacientes que buscan una opinión inicial. Aunque la transferencia de los cuidados hacia una clínica multidisciplinaria especializada en cáncer colorrectal después de una segunda opinión es menor que para las consultas iniciales. Las clínicas multidisciplinarias especializadas en cáncer colorrectal juegan un papel importante con los pacientes que tienen características complejas de enfermedad y necesidades particulares en el tratamiento. Consulte Video Resumen en http://links.lww.com/DCR/B192. (Traducción-Dr Xavier Delgadillo).
Assuntos
Neoplasias do Colo/terapia , Transferência de Pacientes/tendências , Neoplasias Retais/terapia , Encaminhamento e Consulta/estatística & dados numéricos , Idoso , Estudos de Casos e Controles , Neoplasias do Colo/diagnóstico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estadiamento de Neoplasias/estatística & dados numéricos , Avaliação de Resultados em Cuidados de Saúde , Equipe de Assistência ao Paciente/estatística & dados numéricos , Neoplasias Retais/diagnóstico , Recidiva , Sistema de Registros , Estudos Retrospectivos , Falha de TratamentoRESUMO
BACKGROUND: Debate continues as to whether patients with acute ischemic stroke with (suspected) large vessel occlusion benefit from direct referral versus secondary transportation. AIMS: To analyze the change in early infarct signs, collaterals, and acute ischemia volume and their association with transfer time and functional outcome. METHODS: We retrospectively analyzed consecutive transfers between 2013 and 2016 for patients with anterior circulation stroke transported from referring hospitals to our center as potential candidates for thrombectomy. Alberta Stroke Programme Early CT Scores (ASPECTS) were automatically calculated on external and in-house CT using the Brainomix e-ASPECTS software, and collaterals were assessed using the e-CTA tool. Functional status after stroke using the modified Rankin scale (mRS) was obtained. RESULTS: 102 patients with CT scans both at the referring hospital and our center were identified. During patient transfer, e-ASPECTS declined by a median of 1 point (0-2). Functional outcome correlated with the change in e-ASPECTS (decline, n=54) (Spearman rs =0.322, 95% CI 0.131 to 0.482, p=0.001). The median image-to-image time was 149 min (IQR 113-190), but did not correlate with change in e-ASPECTS (p=0.754) and mRS score at 3 months (p=0.25). Preserved good collateral status assessed at the comprehensive stroke center was associated with better functional outcome (rs =-0.271, 95% CI -0.485 to -0.037, p=0.02). CONCLUSIONS: Patient transfer in a drip-and-ship network was associated with declines in e-ASPECTS associated with worse functional outcome. Image-to-image time did not influence this association, but worsening collateral status did.
Assuntos
Isquemia Encefálica/diagnóstico por imagem , Isquemia Encefálica/terapia , Transferência de Pacientes/tendências , Acidente Vascular Cerebral/diagnóstico por imagem , Acidente Vascular Cerebral/terapia , Tomografia Computadorizada por Raios X/tendências , Idoso , Idoso de 80 Anos ou mais , Circulação Colateral/efeitos dos fármacos , Circulação Colateral/fisiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Transferência de Pacientes/métodos , Estudos Retrospectivos , Trombectomia/métodos , Trombectomia/tendências , Tomografia Computadorizada por Raios X/métodos , Resultado do TratamentoRESUMO
BACKGROUND: Endovascular therapy (EVT) is currently the most effective treatment for emergent large vessel occlusion (ELVO) stroke. Earlier treatment is associated with a better clinical outcome. Our aim was to examine the association between onset-to-EVT (OTE) time and clinical outcomes using real-world nationwide data from the National Acute Stroke ISraeli (NASIS)-REVASC registry. METHODS: Stroke patients undergoing EVT within the Endovascular Capable Centres (ECCs) in Israel between January 2014 and March 2016 were prospectively included. Several clinical and radiological outcomes were evaluated. The association between OTE time and outcomes was analyzed with logistic regression models using time as a continuous variable and then by OTE groups of <2, 2-4, 4-6, and >6 hours. RESULTS: 299 patients with acute stroke were included in the analysis. OTE time was significantly associated with favorable outcomes. ORs for each hour of delay in EVT were 0.84 (95% CI 0.71 to 0.99) for significant early recovery, 0.80 (95% CI 0.68 to 0.94) for discharge to home, 0.80 (95% CI 0.66 to 0.95) for freedom from disability at discharge, and 0.78 (95% CI 0.67 to 0.91) for excellent reperfusion (Thrombolysis in Cerebral Ischemia 3). The <2 OTE group was significantly associated with better outcomes than the ≥2 OTE group including significant early recovery (OR 3.3, 95% CI 1.2 to 9.1), discharge to home (OR 3.32, 95% CI 1.3 to 8.5), and excellent reperfusion (OR 4.6, 95% CI 1.3 to 29.5). The same trend was observed for freedom from disability at discharge and 3 months (OR 2.08, 95% CI 0.7 to 5.7 and OR 2.57, 95% CI 0.8 to 8.3, respectively). Only 1% of transferred patients achieved an OTE time of <2 hours. CONCLUSIONS: Nationwide real-life registry data indicate that benefit from EVT is strongly associated with OTE time and is most prominent within the 'two golden hours' from stroke onset. This time goal may not be applicable in inter-hospital transfer patients.
Assuntos
Isquemia Encefálica/cirurgia , Procedimentos Endovasculares/métodos , Sistema de Registros , Acidente Vascular Cerebral/cirurgia , Tempo para o Tratamento , Idoso , Idoso de 80 Anos ou mais , Isquemia Encefálica/diagnóstico por imagem , Procedimentos Endovasculares/tendências , Feminino , Humanos , Israel/epidemiologia , Pessoa de Meia-Idade , Transferência de Pacientes/métodos , Transferência de Pacientes/tendências , Reperfusão/métodos , Reperfusão/tendências , Acidente Vascular Cerebral/diagnóstico por imagem , Tempo para o Tratamento/tendências , Resultado do TratamentoRESUMO
BACKGROUND: The feasibility and effectiveness of delaying surgery to transfer patients with acute type A aortic dissection-a catastrophic disease that requires prompt intervention-to higher-volume aortic surgery hospitals is unknown. We investigated the hypothesis that regionalizing care at high-volume hospitals for acute type A aortic dissections will lower mortality. We further decomposed this hypothesis into subparts, investigating the isolated effect of transfer and the isolated effect of receiving care at a high-volume versus a low-volume facility. METHODS: We compared the operative mortality and long-term survival between 16 886 Medicare beneficiaries diagnosed with an acute type A aortic dissection between 1999 and 2014 who (1) were transferred versus not transferred, (2) underwent surgery at high-volume versus low-volume hospitals, and (3) were rerouted versus not rerouted to a high-volume hospital for treatment. We used a preference-based instrumental variable design to address unmeasured confounding and matching to separate the effect of transfer from volume. RESULTS: Between 1999 and 2014, 40.5% of patients with an acute type A aortic dissection were transferred, and 51.9% received surgery at a high-volume hospital. Interfacility transfer was not associated with a change in operative mortality (risk difference, -0.69%; 95% CI, -2.7% to 1.35%) or long-term mortality. Despite delaying surgery, a regionalization policy that transfers patients to high-volume hospitals was associated with a 7.2% (95% CI, 4.1%-10.3%) absolute risk reduction in operative mortality; this association persisted in the long term (hazard ratio, 0.81; 95% CI, 0.75-0.87). The median distance needed to reroute each patient to a high-volume hospital was 50.1 miles (interquartile range, 12.4-105.4 miles). CONCLUSIONS: Operative and long-term mortality were substantially reduced in patients with acute type A aortic dissection who were rerouted to high-volume hospitals. Policy makers should evaluate the feasibility and benefits of regionalizing the surgical treatment of acute type A aortic dissection in the United States.
Assuntos
Aneurisma Aórtico/mortalidade , Dissecção Aórtica/mortalidade , Hospitais com Alto Volume de Atendimentos , Hospitais com Baixo Volume de Atendimentos/métodos , Medicare , Transferência de Pacientes/métodos , Idoso , Idoso de 80 Anos ou mais , Dissecção Aórtica/diagnóstico , Dissecção Aórtica/cirurgia , Aorta/patologia , Aorta/cirurgia , Aneurisma Aórtico/diagnóstico , Aneurisma Aórtico/cirurgia , Estudos de Coortes , Feminino , Mortalidade Hospitalar/tendências , Hospitais com Alto Volume de Atendimentos/tendências , Hospitais com Baixo Volume de Atendimentos/tendências , Humanos , Masculino , Medicare/tendências , Transferência de Pacientes/tendências , Estudos Retrospectivos , Taxa de Sobrevida/tendências , Resultado do Tratamento , Estados Unidos/epidemiologiaRESUMO
INTRODUCTION: The transition age is the period between childhood to adulthood; it refers to a broad set of physical, cognitive and sociocultural modifications, arbitrarily defined as starting in late puberty and ending with full adult maturation. Pituitary disorders in adolescence represent a challenge that requires careful management during the transition to adult care. METHODS: Given the complexity of care of pituitary disorders in the transition age, we have reviewed the relevant medical literature focusing on aetiology, clinical manifestations, treatment strategies of GH deficiency (GHD), hypogonadotrophic hypogonadism (HH) in male and female adolescents, central hypothyroidism (CH), central adrenal insufficiency (CAI) and cranial diabetes insipidus (CDI) at this time. The objective of the present review is to provide an up-to-date evaluation of the transition period to evaluate the specific needs of adolescents with chronic pituitary disease in order to optimise their management. RESULTS: We provide an overview of current clinical management of GHD, HH, CH, CAI and CDI in the transition age. CONCLUSIONS: Specific changes occur in pituitary function during the transition period. A holistic approach including discussion of patients' concerns and emotional support should constitute a key component of managing pituitary disorders in adolescence. Special transition clinics where paediatric and adult endocrinologists work together, should be increasingly created and strengthened to bridge care, to promote continuity and adherence to treatment and to limit potential negative development, metabolic, skeletal and cardiovascular sequelae of discontinuity of care among adolescents with pituitary disorders.
Assuntos
Transferência de Pacientes/métodos , Doenças da Hipófise/diagnóstico , Doenças da Hipófise/terapia , Maturidade Sexual/fisiologia , Adolescente , Fatores Etários , Criança , Hormônio do Crescimento Humano/sangue , Humanos , Transferência de Pacientes/tendências , Doenças da Hipófise/sangue , Adulto JovemRESUMO
BACKGROUND: Although the family caregiver workforce is increasingly diverse, little is known about culturally and linguistically diverse caregivers and patients for whom they care. Caregiver roles include communicating with health care teams on behalf of patients with language barriers. OBJECTIVE: Our objective is to describe characteristics and experiences of caregivers for patients with limited English proficiency (LEP) immediately following hospital discharge. DESIGN: Cross-sectional. PARTICIPANTS: Primary informal caregivers for Chinese- and Spanish-speaking patients with LEP discharged from a large academic medical center's orthopedic surgery, general surgery, and cardiovascular inpatient floors from June 2012 to August 2013. MAIN MEASURES: Bilingual-bicultural research assistants conducted baseline structured interviews with patients or surrogates in the hospital, and 3 weeks after discharge, gathering demographic and health information. They then interviewed by phone informal caregivers, identified by patients, to determine caregiving experiences. KEY RESULTS: One hundred fifty-eight caregivers were interviewed post-discharge. Two-thirds (69.0%) were adults caring for parents or grandparents, and 20.9% were spouses or partners. Sixty-nine (43.7%) caregivers had LEP themselves, yet only 12% of patients reported having access to professional interpreters at the time discharge instructions were provided. Ninety percent reported performing three or more caregiving roles for the patient (helping at home, helping with medical decisions, helping with medical forms, helping communicate with medical staff, and talking with doctors about medical care). Forty percent reported moderate/high levels of perceived stress (some, most, or all of the time) caring for the patient. Multivariate regression revealed caregivers for Chinese-speaking patients, and those for patients discharged to another hospital were most likely to report moderate/high levels of perceived stress. CONCLUSION: Culturally and linguistically diverse caregivers perform multiple roles caring for patients with LEP, often have LEP themselves, and experience notable levels of stress. These results also demonstrate an opportunity to expand the use of professional interpreters at hospital discharge to avoid communication errors.
Assuntos
Cuidadores/tendências , Serviços de Assistência Domiciliar/tendências , Hospitalização/tendências , Proficiência Limitada em Inglês , Multilinguismo , Transferência de Pacientes/tendências , Adulto , Assistência ao Convalescente/normas , Assistência ao Convalescente/tendências , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Cuidadores/normas , Estudos Transversais , Feminino , Seguimentos , Serviços de Assistência Domiciliar/normas , Humanos , Masculino , Pessoa de Meia-Idade , Alta do Paciente/normas , Alta do Paciente/tendências , Transferência de Pacientes/normas , Adulto JovemRESUMO
INTRODUCTION: Tuberous sclerosis complex (TSC) is a multisystemic genetic disease with high clinical variability and age-related manifestations. These characteristics add to the complexity of transition to adulthood. This study aimed to explore the perception of medical follow-up and transition experience in a large group of patients with TSC who presented epilepsy in childhood. METHOD: This multicenter French study included patients with TSC aged 18â¯years or older who developed epilepsy before the age of 16â¯years. A questionnaire specifically designed for the study explored patients' opinion through 270 questions covering different aspects of their social, familial, professional, and medical courses. RESULTS: The questionnaire was sent to 72 patients, and 60 patients were included in the study (83% response rate) with a mean age of 32â¯years (18-55â¯years). Cognitive impairment was present in 80% of patients, and half of questionnaires were completed by the family. Pediatric care was coordinated by the child neurologist and was more regular and multidisciplinary than adult care. Epilepsy had the best follow-up followed by renal issues. Unmet needs were identified for psychiatric and behavioral disorders, both in children and adults. Respondents considered the help in achieving autonomy better in adult care. Only 50% of patients with a normal intellectual development had clear knowledge about their disease and the need for a regular monitoring. Two-thirds of respondents estimated that they had a transition experience between 16.5 and 21-year-old, considered as good in 60% of them. Seventy percent felt continuity between pediatric and adult care, and only 3% of respondents felt that their care would have been better if they were still followed in pediatric healthcare system. The change of care structure and/or caregivers was the most stressful factor during transition and transfer. CONCLUSION: This study highlights persistent issues in the regularity and coordination of the follow-up of patients with TSC despite established international guidelines. Although most patients had a positive transition experience, there is still an urgent need to optimize transition programs. This would be essential to maintain care continuity between pediatric and adult health systems, especially for patients with TSC with epilepsy and high rate of cognitive and psychiatric impairments.
Assuntos
Atenção à Saúde/tendências , Transferência de Pacientes/tendências , Pediatria/tendências , Qualidade de Vida/psicologia , Esclerose Tuberosa/psicologia , Esclerose Tuberosa/terapia , Adolescente , Adulto , Cuidadores/psicologia , Cuidadores/tendências , Atenção à Saúde/métodos , Família/psicologia , Feminino , Seguimentos , França/epidemiologia , Humanos , Masculino , Pessoa de Meia-Idade , Transferência de Pacientes/métodos , Pediatria/métodos , Inquéritos e Questionários , Esclerose Tuberosa/epidemiologia , Adulto JovemRESUMO
BACKGROUND: Testicular torsion (TT) is a urologic emergency that requires prompt surgical intervention. In rural Appalachia, patients are often transferred from surrounding communities due to lack of urologic care. We hypothesized that those transferred would have delayed intervention and higher rates of orchiectomy when compared to those who presented directly to our hospital. METHODS: We performed a retrospective review of patient charts with an ICD-9 diagnosis of TT from 2008 to 2016. Patients met inclusion criteria if diagnosis was confirmed by operative exploration. We compared rate of testicular loss and time until surgical intervention between groups. RESULTS: Twenty-three patients met inclusion criteria (12 transferred, 11 direct). Patient demographics did not significantly differ between groups. Transferred patients had a higher orchiectomy rate (33% v 22%,p = 0.41) although this was not statistically significant. Time to surgery from symptom onset was significantly longer in those transferred (12.9 h) compared to those not transferred (6.9 h, p = 0.02). Distance of transfer was not correlated with time of delay (r2 = 0.063). CONCLUSIONS: Transferred patients with TT have numerically higher rates of orchiectomy which may reach significance in an appropriately powered study, and relative delays in surgical intervention. This study highlights the need for improved access to urologic care in rural areas.
Assuntos
Hospitais Rurais/tendências , Transferência de Pacientes/tendências , Torção do Cordão Espermático/diagnóstico , Torção do Cordão Espermático/cirurgia , Centros de Atenção Terciária/tendências , Tempo para o Tratamento/tendências , Adolescente , Criança , Humanos , Masculino , Orquiectomia/tendências , Transferência de Pacientes/métodos , Estudos Retrospectivos , Resultado do Tratamento , Adulto JovemRESUMO
BACKGROUND: Renal trauma may be managed differently in tiered trauma systems and among those who requireinterfaculty transfer. OBJECTIVE: To evaluate the initial management of renal trauma, assess patterns of management based on hospital trauma level designation and interfacility transfer status, and analyze management trends over time. DESIGN, SETTING, AND PARTICIPANTS: Retrospective cohort study of renal trauma from the National Trauma Data Bank 2010-2015. INTERVENTION: Nephrectomy, angioembolization, or nonoperative management. OUTCOMES MEASUREMENTS AND STATISTICAL ANALYSIS: We used generalized estimating equations to compare odds of each management outcome in patients transferred and directly admitted to a level I center, versus those directly admitted to a non-level I center, adjusting for vital signs, injury, demographic, and facility characteristics. We also used generalized estimating equations to examine linear time trends in management outcome, adjusting for injury characteristics. RESULTS AND LIMITATIONS: A total of 51798 renal trauma records were included: 44 838 low-grade (American Association for the Surgery of Trauma I-III) and 6359 high grade (IV-V) injuries. After adjusting for comorbidities, demographics, and hospital characteristics, odds of nephrectomy, angioembolization, and nonoperative management were similar in patients transferred or directly admitted to a level I center compared with those treated at a non-level I center. Changes in management over time demonstrated a decreased rate of nephrectomy (p=0.007) in high-grade injuries, while the rate of angioembolization remained constant (p=0.33). Study limitations include mortality prior to hospital transfer or arrival, and its retrospective nature. CONCLUSIONS: In this contemporary trauma analysis, outcomes of both low- and high-grade renal trauma are similar across patients managed in tiered trauma centers and those undergoing transfer, signifying dissemination of collective renal trauma management. The rate of nephrectomy has decreased for high-grade renal injury over our study period, suggesting new adoption of kidney-sparing management. PATIENT SUMMARY: Renal trauma is now managed similarly in tiered trauma centers and in patients requiring interfacility transfer. The rate of nephrectomy for high-grade renal injuries has decreased over time.
Assuntos
Rim/lesões , Transferência de Pacientes/estatística & dados numéricos , Centros de Traumatologia/estatística & dados numéricos , Ferimentos e Lesões/terapia , Adulto , Estudos de Casos e Controles , Comorbidade , Gerenciamento Clínico , Embolização Terapêutica/efeitos adversos , Embolização Terapêutica/métodos , Feminino , Humanos , Escala de Gravidade do Ferimento , Rim/cirurgia , Masculino , Pessoa de Meia-Idade , Nefrectomia/efeitos adversos , Nefrectomia/métodos , Nefrectomia/estatística & dados numéricos , Tratamentos com Preservação do Órgão/métodos , Transferência de Pacientes/tendências , Estudos Retrospectivos , Centros de Traumatologia/organização & administração , Ferimentos e Lesões/epidemiologia , Ferimentos e Lesões/mortalidadeRESUMO
BACKGROUND AND PURPOSE: Endovascular treatment of large-vessel occlusion stroke often necessitates patient transfer by a twin-track approach: endovascular thrombectomy (ET) in endovascular-capable facilities preceded by intravenous thrombolysis in primary stroke centers. We tested the open hypothesis that recent landmark trials on ET had any significant effect on logistical performance measures among different modes of admission. METHODS: We retrospectively categorized 250 patients who presented at our institution as: (A) primarily admitted or transferred from (B) inner-city and (C) regional hospitals. The period from May 2015 to June 2017 was compared with the preceding period of August 2009 to April 2015 with respect to real-life transfer distances and sectional time metrics from symptom onset to angiographic recanalization. RESULTS: Onset-to-recanalization time decreased in the primary admission path, whereas delays persisted for inter-hospital transfer: (A: 261 min (210-315) vs 198 (167-264) P<0.0001; B: 257 (214-306) vs 265 (199- 360) P=0.566; and C: 371 (322-415) vs 346 (307-405) P=0.559). Onset-to-recanalization time was negatively correlated with recanalization success (mTICI; r=-0.4195 P<0.0001). The rate of secondarily referred patients (26% vs 48% P=0.0004) and off-hour presentation (36% vs 44% P=0.004) increased, as did the catchment area (C: 52.2 km (30,4-64,5) vs 64.4 (43,2-78,9) P=0.032). Improvement in door-in-door-out time at the referring hospitals (C: 113 min (30) vs 86 (29) P=0.0236) did not translate into reduced total referral times or the accelerated initiation of ET. CONCLUSION: Recent landmark trials already led to a considerable streamlining of ET workflow if patients were directly admitted. Prehospital time management and triage seem to be the major determinants of optimization.
Assuntos
Procedimentos Endovasculares/métodos , Transferência de Pacientes/métodos , Acidente Vascular Cerebral/terapia , Trombectomia/métodos , Triagem/métodos , Administração Intravenosa , Idoso , Idoso de 80 Anos ou mais , Interpretação Estatística de Dados , Procedimentos Endovasculares/tendências , Feminino , Hospitais/tendências , Humanos , Masculino , Transferência de Pacientes/tendências , Estudos Retrospectivos , Acidente Vascular Cerebral/epidemiologia , Trombectomia/tendências , Fatores de Tempo , Triagem/tendências , Fluxo de TrabalhoRESUMO
BACKGROUND: Patients on dialysis are physically inactive, with most reporting activity levels below the fifth percentile of healthy age-matched groups. Several small studies have reported efficacy of diverse exercise interventions among persons with CKD and those on dialysis. However, no single intervention has been widely adopted in real-world practice, despite a clear need in this vulnerable population with high rates of mortality, frailty, and skilled nursing hospitalizations. METHODS/DESIGN: We describe a pragmatic clinical trial for an exercise intervention among patients transitioning to dialysis. We will use an existing framework - Exercise is Medicine (EIM) - developed by the American College of Sports Medicine. After undertaking formative qualitative research to tailor the EIM framework to the advanced CKD population (eGFR < 30 ml/min/1.73m2), we will randomize 96 patients from two regions-Atlanta and Bay Area-in two intervention arms with incremental levels of clinical-community integration: physical activity assessment during Nephrology clinical visit, brief counseling at pre-dialysis education, and physical activity wearable (group 1) versus group 1 intervention components plus a referral to a free, EIM practitioner-led group exercise program over 16 weeks (group 2; 8 week core intervention; 8-week follow up). We will assess efficacy by comparing between group differences in minutes/week of objectively measured moderate intensity physical activity. To evaluate implementation, we will use questionnaires for assessing barriers to referral, participation and retention along the path of the intervention. Further we will have a plan for dissemination of the intervention by partnering with relevant stakeholders. DISCUSSION: The overall goal is to inform the development of a practical, cost-conscious intervention "package" that addresses barriers and challenges to physical activity commonly faced by patients with advanced CKD and can be disseminated amongst interested practices. TRIAL REGISTRATION: ClinicalTrials.gov identifier (Dated:10/17/2017): NCT03311763 .
Assuntos
Exercício Físico/fisiologia , Promoção da Saúde/métodos , Transferência de Pacientes/métodos , Diálise Renal/métodos , Insuficiência Renal Crônica/terapia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Promoção da Saúde/tendências , Humanos , Masculino , Pessoa de Meia-Idade , Transferência de Pacientes/tendências , Diálise Renal/tendências , Insuficiência Renal Crônica/epidemiologiaRESUMO
BACKGROUND: Few data exist on regional systems of care for the treatment of ST-segment-elevation myocardial infarction (STEMI) in developing countries. Our objective was to describe temporal trends in 30-day mortality and identify predictors of mortality among STEMI patients enrolled in a prospective registry in Brazil. METHODS AND RESULTS: From January 2011 to June 2013, 520 patients who received initial STEMI care at 23 nonspecialized public health units or hospitals, some of whom were transferred to a public cardiology referral center, were identified through a regional STEMI network supported by telemedicine and the local prehospital emergency medical service. We stratified patients into five 6-month periods based on presentation date. Mean age (±SD) of patients was 62.0 (±12.2) years, and 55.6% were men. The mean Global Registry of Acute Coronary Events (GRACE) score was 145 (±34). Overall mortality at 30 days was 15.0%. Use of dual antiplatelet therapy and statins increased significantly from baseline (January 2011) to period 5 (June 2013): 61.8% to 93.6% (P<0.001) and 60.4% to 79.7% (P<0.001), respectively. Rates of primary reperfusion also increased (29.1%-53.8%; P<0.001), and more patients were transferred to the referral center (44.7%-76.3%; P=0.001). Thirty-day mortality rates decreased from 19.8% to 5.1% (P<0.001). In multivariable analysis, factors independently associated with 30-day mortality were higher GRACE score, history of previous stroke, lack of transfer to the referral center, and lack of use of optimized medical therapy. CONCLUSIONS: Implementation of a regional STEMI system was associated with lower mortality and higher use of evidence-based therapies.
Assuntos
Mortalidade/tendências , Transferência de Pacientes/tendências , Programas Médicos Regionais , Infarto do Miocárdio com Supradesnível do Segmento ST/terapia , Antagonistas Adrenérgicos beta/uso terapêutico , Idoso , Antagonistas de Receptores de Angiotensina/uso terapêutico , Inibidores da Enzima Conversora de Angiotensina/uso terapêutico , Aspirina/uso terapêutico , Brasil , Cardiologia , Serviços Médicos de Emergência , Feminino , Fidelidade a Diretrizes , Humanos , Inibidores de Hidroximetilglutaril-CoA Redutases/uso terapêutico , Masculino , Pessoa de Meia-Idade , Intervenção Coronária Percutânea/tendências , Inibidores da Agregação Plaquetária/uso terapêutico , Guias de Prática Clínica como Assunto , Estudos Prospectivos , Antagonistas do Receptor Purinérgico P2Y/uso terapêutico , Sistema de Registros , Telemedicina , Centros de Atenção TerciáriaRESUMO
BACKGROUND: Tertiary referral centers provide specialty and critical care for patients presenting to hospitals that lack these resources. There is a notion among tertiary centers that outside hospitals are more likely to transfer uninsured or underinsured patients. We examined funding status of patients transferred to our tertiary pediatric hospital for surgical management of appendicitis, hypothesizing that transferred patients were more likely to have unfavorable coverage. MATERIALS AND METHODS: The electronic medical record was queried for all cases of laparoscopic appendectomy at our hospital between 2011 and 2015. Insurance was grouped into three categories: commercial, Medicaid/Children's Health Insurance Plan, or none. Transferred patients were compared to patients who presented directly. RESULTS: A total of 5758 patients underwent laparoscopic appendectomy during the study period, of which 1683 (29.2%) were transfer patients. Transfer patients were more likely to be older, with a median age of 10.5 y versus 9.8 y in nontransferred patients (P ≤ 0.0001), and were more likely to be identified as non-Hispanic (50.0% versus 36.5%; P ≤ 0.0001). Insurance coverage was similar between groups. However, subgroup analysis of the hospitals that most frequently used our transfer services revealed a trend to transfer a higher proportion of Medicaid/Children's Health Insurance Plan patients. CONCLUSIONS: Overall, pediatric patients transferred for laparoscopic appendectomy had similar insurance coverage to patients admitted directly, but subgroup analysis shows that not all centers follow this trend. Transfer patients were more frequently older and non-Hispanic. This builds upon the existing literature regarding the correlation of funding and transfer practices and highlights the need for additional research in this area.
Assuntos
Apendicectomia/economia , Apendicite/cirurgia , Cobertura do Seguro/estatística & dados numéricos , Seguro Saúde/estatística & dados numéricos , Laparoscopia/economia , Transferência de Pacientes/tendências , Adolescente , Apendicectomia/estatística & dados numéricos , Apendicite/economia , Criança , Tomada de Decisão Clínica , Registros Eletrônicos de Saúde/estatística & dados numéricos , Feminino , Acessibilidade aos Serviços de Saúde/economia , Acessibilidade aos Serviços de Saúde/tendências , Hospitais Pediátricos/economia , Hospitais Pediátricos/estatística & dados numéricos , Humanos , Cobertura do Seguro/economia , Seguro Saúde/economia , Laparoscopia/estatística & dados numéricos , Masculino , Pessoas sem Cobertura de Seguro de Saúde/estatística & dados numéricos , Transferência de Pacientes/economia , Transferência de Pacientes/estatística & dados numéricos , Estudos Retrospectivos , Centros de Atenção Terciária/economia , Centros de Atenção Terciária/estatística & dados numéricos , Estados UnidosRESUMO
OBJECTIVE The authors' institution is in the top 5th percentile for hospital cost in the nation, and the neurointensive care unit (NICU) is one of the costliest units. The NICU is more expensive than other units because of lower staff/patient ratio and because of the equipment necessary to monitor patient care. The cost differential between the NICU and Neuro transitional care unit (NTCU) is $1504 per day. The goal of this study was to evaluate and to pilot a program to improve efficiency and lower cost by modifying the postoperative care of patients who have undergone a craniotomy, sending them to the NTCU as opposed to the NICU. Implementation of the pilot will expand and utilize neurosurgery beds available on the NTCU and reduce the burden on NICU beds for critically ill patient admissions. METHODS Ten patients who underwent craniotomy to treat supratentorial brain tumors were included. Prior to implementation of the pilot, inclusion criteria were designed for patient selection. Patients included were less than 65 years of age, had no comorbid conditions requiring postoperative intensive care unit (ICU) care, had a supratentorial meningioma less than 3 cm in size, had no intraoperative events, had routine extubation, and underwent surgery lasting fewer than 5 hours and had blood loss less than 500 ml. The Safe Transitions Pathway (STP) was started in August 2016. RESULTS Ten tumor patients have utilized the STP (5 convexity meningiomas, 2 metastatic tumors, 3 gliomas). Patients' ages ranged from 29 to 75 years (median 49 years; an exception to the age limit of 65 years was made for one 75-year-old patient). Discharge from the hospital averaged 2.2 days postoperative, with 1 discharged on postoperative day (POD) 1, 7 discharged on POD 2, 1 discharged on POD 3, and 1 discharged on POD 4. Preliminary data indicate that quality and safety for patients following the STP (moving from the operating room [OR] to the neuro transitional care unit [OR-NTCU]) are no different from those of patients following the traditional OR-NICU pathway. No patients required escalation in level of nursing care, and there were no readmissions. This group has been followed for greater than 1 month, and there were no morbidities. CONCLUSIONS The STP is a new and efficient pathway for the postoperative care of neurosurgery patients. The STP has reduced hospital cost by $22,560 for the first 10 patients, and there were no morbidities. Since this pilot, the authors have expanded the pathway to include other surgical cases and now routinely schedule craniotomy patients for the (OR-NTCU) pathway. The potential cost reduction in one year could reach $500,000 if we reach our potential of 20 patients per month.
Assuntos
Neoplasias Encefálicas/economia , Análise Custo-Benefício , Craniotomia/economia , Procedimentos Neurocirúrgicos/economia , Transferência de Pacientes/economia , Cuidados Pós-Operatórios/economia , Adulto , Idoso , Neoplasias Encefálicas/diagnóstico por imagem , Neoplasias Encefálicas/cirurgia , Análise Custo-Benefício/tendências , Craniotomia/tendências , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Procedimentos Neurocirúrgicos/tendências , Transferência de Pacientes/tendências , Projetos Piloto , Cuidados Pós-Operatórios/tendênciasRESUMO
Patients with spine-associated symptoms are transferred regularly to higher levels of care for operative intervention. It is unclear what factors lead to the transfer of patients with spine pathology to level I care facilities, and which transfers are indicated. All patients with isolated spinal pathology who were transferred from 2011 to 2015 were reviewed. Patients were divided into urgent transfers, defined as anyone who required operative intervention, and nonurgent transfers. Two hundred twenty-seven patients were transferred for isolated spinal pathology over 51 months; 109 (48.0%) patients required urgent intervention and 118 (52.0%) patients required nonurgent care. No significant differences were found between groups in terms of private insurance, age, sex, race, or Charlson comorbidity index. The urgent group was less likely to have a traumatic chief complaint (57.8% vs 78.0%, P = .001). More than half of all spine patients who were transferred to a tertiary care center required minimal intervention.
Assuntos
Serviços Médicos de Emergência , Transferência de Pacientes/tendências , Traumatismos da Coluna Vertebral , Centros de Atenção Terciária , Adulto , Idoso , Feminino , Humanos , Masculino , Auditoria Médica , Pessoa de Meia-Idade , Transferência de Pacientes/estatística & dados numéricos , Estudos Retrospectivos , Traumatismos da Coluna Vertebral/cirurgiaRESUMO
BACKGROUND: To satisfy the increasing demand of mechanical thrombectomy (MT) for acute ischemic stroke treatment, new organizational concepts for patient care are required. This study evaluates time intervals of acute stroke management in two stroke care models, including one based on transportation of the interventionalist from a comprehensive stroke center (CSC) to treat patients in two primary stroke centers (PSC). We hypothesized that time intervals were not inferior for the 'drip-and-drive' concept compared with the traditional 'drip-and-ship' concept. METHODS: Patients treated with MT at the PSC ('drip-and-drive', 'D+D group') were compared with patients transferred from PSC to CSC for MT ('drip-and-ship', 'D+S group') with regard to time delays. Time intervals assessed were: symptom onset to initial CT, to angiography, and to recanalization; time from initial CT to telephone call activation, to arrival, and to angiography; and time from telephone call activation to arrival and from arrival to angiography. RESULTS: 42 patients were treated at the PSC after transfer of the interventionalist, and 32 patients were transferred to the CSC for MT. The groups did not differ with regard to median Onset-CT and CT-Phone times. Significant differences between the groups were found for the primary outcome measure CT-Arrival time ('D+D group': median 121 (IQR 108-134) min vs 181 (157-219) min for the 'D+S group'; P<0.001). Time difference between the groups increased to more than 2 hours for median CT-Angio times (median 123 (IQR 93-147) min vs 252 (228-275) min; P<0.001). CONCLUSION: Time intervals for the 'D+D group' were not inferior to those of the 'D+S group'. Moreover, under certain conditions, the 'drip-and-drive' concept might even be superior.
Assuntos
Isquemia Encefálica/cirurgia , Neurocirurgiões , Transferência de Pacientes/métodos , Acidente Vascular Cerebral/cirurgia , Trombectomia/métodos , Idoso , Idoso de 80 Anos ou mais , Isquemia Encefálica/diagnóstico , Feminino , Hospitais/tendências , Humanos , Masculino , Pessoa de Meia-Idade , Neurocirurgiões/tendências , Transferência de Pacientes/tendências , Acidente Vascular Cerebral/diagnóstico , Trombectomia/tendências , Resultado do TratamentoRESUMO
BACKGROUND: The accepted treatment for acute limb ischemia (ALI) is immediate systemic anticoagulation and timely reperfusion to restore blood flow. In this study, we describe the retrospective assessment of pretransfer management decisions by referring hospitals to an academic tertiary care facility and its impact on perioperative adverse events. METHODS: A retrospective analysis of ALI patients transferred to us via our Level I Vascular Emergency Program from 2010 to 2013 was performed. Patient demographics, comorbidities, Rutherford ischemia classification, time to anticoagulation, and time to reperfusion were tabulated and analyzed for correlation to incidence of major adverse limb events (MALEs), mortality, and bypass patency in the perioperative period (30-day postoperative). All intervals were calculated from the onset of symptoms and categorized into 3 subcohorts (<6 hr, 6-48 hr, and >48 hr). RESULTS: Eighty-seven patients with an average age of 64.0 (±16.2) years presented to outlying hospitals and were transferred to us with lower extremity ALI. The mean delay from symptom onset to initial referring physician evaluation was 18.3 hr. At that time of evaluation, 53.8% had Rutherford class IIA ischemia and 36.3% had class IIB ischemia. Seventy-six patients (87.4%) were started on heparin previous to transfer. However, only 44 patients (57.9%) reached therapeutic levels as measured by activated partial thromboplastin time before definitive revascularization. A delay of anticoagulation initiation >48 hr from symptom onset was associated with increased 30-day reintervention rates compared with the <6 hr group (66.7% vs. 23.5%; P < 0.05). However, time to reperfusion had no statistically significant impact on MALE, 30-day mortality, or 30-day interventional patency in our small cohorts. Additionally, patients with a previous revascularization had a higher 30-day reintervention rate (46.5%; P < 0.05). CONCLUSIONS: The practice of timely therapeutic anticoagulation of patients referred for ALI from community facilities occurs less frequently than expected and is associated with an increased perioperative reintervention rate.