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1.
Pediatr Crit Care Med ; 18(9): e415-e422, 2017 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-28658198

RESUMEN

OBJECTIVE: To describe neonatologist and pediatric intensivist attitudes and practices relevant to high-stakes decisions for children with chronic critical illness, with particular attention to physician perception of professional duty to seek treatment team consensus and to disclose team conflict. DESIGN: Self-administered online survey. SETTING: U.S. neonatal ICUs and PICUs. SUBJECTS: Neonatologists and pediatric intensivists. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We received 652 responses (333 neonatologists, denominator unknown; 319 of 1,290 pediatric intensivists). When asked about guiding a decision for tracheostomy in a chronically critically ill infant, only 41.7% of physicians indicated professional responsibility to seek a consensus decision, but 73.3% reported, in practice, that they would seek consensus and make a consensus-based recommendation; the second most common practice (15.5%) was to defer to families without making recommendations. When presented with conflict among the treatment team, 63% of physicians indicated a responsibility to be transparent about the decision-making process and reported matching practices. Neonatologists more frequently reported a responsibility to give decision making fully over to families; intensivists were more likely to seek out consensus among the treatment team. CONCLUSIONS: ICU physicians do not agree about their responsibilities when approaching difficult decisions for chronically critically ill children. Although most physicians feel a professional responsibility to provide personal recommendations or defer to families, most physicians report offering consensus recommendations. Nearly all physicians embrace a sense of responsibility to disclose disagreement to families. More research is needed to understand physician responsibilities for making recommendations in the care of chronically critically ill children.


Asunto(s)
Actitud del Personal de Salud , Toma de Decisiones Clínicas/métodos , Consenso , Cuidados Críticos , Disentimientos y Disputas , Pautas de la Práctica en Medicina/estadística & datos numéricos , Responsabilidad Social , Adolescente , Niño , Preescolar , Enfermedad Crónica , Cuidados Críticos/métodos , Cuidados Críticos/organización & administración , Cuidados Críticos/psicología , Enfermedad Crítica , Toma de Decisiones , Femenino , Encuestas de Atención de la Salud , Humanos , Lactante , Recién Nacido , Unidades de Cuidado Intensivo Pediátrico , Relaciones Interprofesionales , Masculino , Neonatología , Rol del Médico , Relaciones Profesional-Familia , Revelación de la Verdad , Estados Unidos
2.
Pediatr Crit Care Med ; 18(11): e561-e568, 2017 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-28922265

RESUMEN

OBJECTIVE: Neonatal ICUs and PICUs increasingly admit patients with chronic critical illness: children whose medical complexity leads to recurrent and prolonged ICU hospitalizations. We interviewed participants who routinely care for children with chronic critical illness to describe their experiences with ICU care for pediatric chronic critical illness. DESIGN: Semi-structured interviews. Interviews were transcribed and analyzed for themes. SETTING: Stakeholders came from five regions (Seattle, WA; Houston, TX; Jackson, MS; Baltimore, MD; and Philadelphia, PA). SUBJECTS: Fifty-one stakeholders including: 1) interdisciplinary providers (inpatient, outpatient, home care, foster care) with extensive chronic critical illness experience; or 2) parents of children with chronic critical illness. INTERVENTIONS: Telephone or in-person interviews. MEASUREMENTS AND MAIN RESULTS: Stakeholders identified several key issues and several themes emerged after qualitative analysis. Issues around chronic critical illness patient factors noted that patients are often relocated to the ICU because of their medical needs. During extended ICU stays, these children require longitudinal relationships and developmental stimulation that outstrip ICU capabilities. Family factors can affect care as prolonged ICU experience leads some to disengage from decision-making. Clinician factors noted that parents of children with chronic critical illness are often experts about their child's disease, shifting the typical ICU clinician-parent relationship. Comprehensive care for children with chronic critical illness can become secondary to needs of acutely ill patients. Lastly, with regard to system factors, stakeholders agreed that achieving consistent ICU care goals is difficult for chronic critical illness patients. CONCLUSIONS: ICU care is poorly adapted to pediatric chronic critical illness. Patient, family, clinician, and system factors highlight opportunities for targeted interventions toward improvement in care.


Asunto(s)
Actitud del Personal de Salud , Actitud Frente a la Salud , Enfermedad Crónica/terapia , Cuidados Críticos , Enfermedad Crítica/terapia , Unidades de Cuidado Intensivo Pediátrico , Tiempo de Internación , Niño , Continuidad de la Atención al Paciente , Humanos , Entrevistas como Asunto , Padres/psicología , Relaciones Profesional-Familia , Relaciones Profesional-Paciente , Investigación Cualitativa , Estados Unidos
3.
Palliat Med ; 29(4): 346-53, 2015 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-25670471

RESUMEN

BACKGROUND: Legislative measures increasingly require consideration of pediatric inpatients for Medical Orders for Life-Sustaining Treatment. AIM: To explore pediatric clinicians' experiences with life-sustaining treatments prior to the Medical Orders for Life-Sustaining Treatment mandate and to describe clinician and family concerns and preferences regarding pediatric Medical Orders for Life-Sustaining Treatment. DESIGN: Clinician surveys and clinician and parent focus groups. SETTING/PARTICIPANTS: Pediatric clinicians and parents from one of Maryland's largest health systems. RESULTS: Of 96 survey respondents, 72% were physicians and 28% were nurse practitioners. A total of 73% of physicians and 34% of nurse practitioners felt able to lead discussions about limiting therapies "most" or "all" of the time. A total of 75% of physicians and 37% of nurse practitioners led such a discussion in the prior year. A total of 55% of physicians and 96% of nurse practitioners had written no order to limit therapies in the past year. Only for children predicted to die within 30 days did >80% of clinicians agree that limitation discussions were warranted. A total of 100% of parent focus group participants, but 17% of physicians and 33% of nurse practitioners, thought that all pediatric inpatients warranted Medical Orders for Life-Sustaining Treatment discussions. Parents felt that universal Medical Orders for Life-Sustaining Treatment would decrease the stigma of limitation discussions. Participants believed that Medical Orders for Life-Sustaining Treatment would clarify decision making and increase utilization of palliative care. Medical Orders for Life-Sustaining Treatment communication skills training was recommended by all. CONCLUSION: A minority of clinicians, but all parents, support universal pediatric Medical Orders for Life-Sustaining Treatment. Immediately prior to the Medical Orders for Life-Sustaining Treatment mandate, many clinicians felt unprepared to lead limitation discussions, and few had written relevant orders in the prior year. Communication training is perceived essential to successful Medical Orders for Life-Sustaining Treatment conversations.


Asunto(s)
Directivas Anticipadas/legislación & jurisprudencia , Actitud del Personal de Salud , Cuidados para Prolongación de la Vida/legislación & jurisprudencia , Padres/psicología , Pediatría/legislación & jurisprudencia , Cuidado Terminal/métodos , Adulto , Niño , Femenino , Grupos Focales , Humanos , Masculino , Persona de Mediana Edad , Relaciones Médico-Paciente , Órdenes de Resucitación , Cuidado Terminal/legislación & jurisprudencia , Privación de Tratamiento
5.
J Neuroradiol ; 40(3): 172-80, 2013 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-23735170

RESUMEN

BACKGROUND AND PURPOSE: Although HIV infection is decreasing in infants and children, there is a steady cohort of perinatally HIV-infected (PHIV) children that are growing older. Increased risk of acute stroke has been reported in PHIV children. Our goal was to evaluate evolution/progression of neuroimaging findings in PHIV youth initially presenting with acute stroke. MATERIALS AND METHODS: The medical records of PHIV pediatric patients (n = 179) from 1996 to 2010 were reviewed and patients with clinical documentation of acute stroke referred to the neuroradiology service were eligible for the study. Neuroimaging (brain CT, MRI, and MRA) and charts were evaluated; clinical and neuroimaging findings at the initial acute stroke and at the last presentation to the neuroradiology service were documented and analyzed. RESULTS: Eight PHIV patients with clinical findings of acute stroke referred to the neuroimaging were identified. CT and MRI findings of infarction were found in all (8/8) patients in their first and/or last neuroimaging study; including basal ganglia-thalami (BGT) infarction (7/8), focal cortical infarction (4/8), and internal capsule infarction (4/8). Imaging depicted cortical atrophy (5/8), BGT calcification (3/8), and posterior reversible encephalopathy syndrome, wallerian degeneration, and periventricular white matter hyperintense T2 signal each in one patient. No tumors or infectious masses, cysts or abscesses were identified. Subsequent available neuroimaging revealed progression of the cerebrovascular disease in seven patients, 5/7 in the absence of new clinical signs or symptoms. Segmental occlusion, narrowing or narrowing/dilatation in the circle of Willis was found in 6/6 patients who underwent MR angiography and fusiform aneurysms were detected in three of them, a saccular aneurysm in one patient. CONCLUSION: Asymptomatic progression of cerebrovascular disease was found in PHIV adolescents with prior stroke. These findings may have implications for long-term risk and outcomes for this patient population. There should be a low threshold to evaluate for CNS pathology even with minor symptoms in this population. More studies are necessary to determine if there is a benefit from screening of asymptomatic patients.


Asunto(s)
Isquemia Encefálica/diagnóstico , Infecciones por VIH/patología , Neuroimagen/métodos , Accidente Cerebrovascular/diagnóstico , Adolescente , Isquemia Encefálica/complicaciones , Isquemia Encefálica/patología , Niño , Progresión de la Enfermedad , Femenino , Infecciones por VIH/complicaciones , Humanos , Masculino , Estudios Retrospectivos , Accidente Cerebrovascular/complicaciones , Accidente Cerebrovascular/patología , Adulto Joven
6.
Pediatr Nurs ; 36(4): 185-9; quiz 190, 2010.
Artículo en Inglés | MEDLINE | ID: mdl-20860257

RESUMEN

Health care professionals experience grief when caring for children with life-threatening conditions. Harriet Lane Compassionate Care, the pediatric palliative care program of the Johns Hopkins Children's Center, created an action plan to support health care professionals; one intervention-- the bereavement debriefing session - was specifically aimed at providing emotional support and increasing one's ability to manage grief. A structured format for conducting bereavement debriefing sessions was developed, and 113 sessions were held in a three-year period; data were collected to capture themes discussed. Bereavement debriefing sessions were conducted most frequently after unexpected deaths or deaths of long-term patients. Though attendance included all disciplines, nurses attended the sessions most often. Self-report evaluation forms revealed that health care professionals found the sessions helpful. Bereavement debriefing sessions can be one aspect of an effective approach to supporting health care professionals in managing their grief in caring for children with life-threatening conditions.


Asunto(s)
Actitud del Personal de Salud , Aflicción , Intervención en la Crisis (Psiquiatría)/organización & administración , Cuidados Paliativos/psicología , Personal de Hospital/psicología , Grupos de Autoayuda/organización & administración , Adaptación Psicológica , Análisis de Varianza , Baltimore , Agotamiento Profesional/etiología , Agotamiento Profesional/prevención & control , Agotamiento Profesional/psicología , Niño , Humanos , Investigación en Evaluación de Enfermería , Servicios de Salud del Trabajador/organización & administración , Cuidados Paliativos/organización & administración , Grupo de Atención al Paciente/organización & administración , Enfermería Pediátrica/organización & administración , Desarrollo de Programa , Evaluación de Programas y Proyectos de Salud , Apoyo Social , Encuestas y Cuestionarios
7.
Pediatr Rev ; 30(9): 337-48; quiz 349, 2009 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-19726700

RESUMEN

Mother-to-child transmission of HIV can occur during pregnancy, labor, delivery, and breastfeeding. Evidence-based interventions (routine screening of pregnant women, initiation of antiretroviral drugs for mother's treatment or prevention of MTCT, and avoiding breastfeeding) have reduced transmission rates in the United States from 25% to 30% to less than 2%. Triple-drug combination antiretroviral therapy effectively controls HIV infection and improves survival and quality of life for HIV-infected children and adolescents. Initial regimens use combinations of two NRTIs together with an NNRTI or a ritonavir-boosted PI. These regimens have been shown to increase CD4 counts and achieve virologic suppression. Prevention of serious and opportunistic infections reduces morbidity and mortality in children and adolescents who have HIV infection. Recommendations for immunizations and chemoprophylaxis vary with the patient's CD4 count. Condoms made from latex, polyurethane, or other synthetic materials have been shown to decrease the transmission of STIs, including HIV infection.


Asunto(s)
Infecciones por VIH/terapia , Adolescente , Adulto , Antirretrovirales/uso terapéutico , Niño , Consejo , ADN Viral/genética , Femenino , VIH/genética , Infecciones por VIH/diagnóstico , Infecciones por VIH/tratamiento farmacológico , Infecciones por VIH/transmisión , Humanos , Lactante , Masculino , Relaciones Padres-Hijo , Embarazo , Atención Prenatal , ARN Mensajero/genética , ARN Viral/genética , Conducta Sexual , Trastornos Relacionados con Sustancias/diagnóstico , Carga Viral , Adulto Joven
8.
Pediatr Infect Dis J ; 27(5): 465-8, 2008 May.
Artículo en Inglés | MEDLINE | ID: mdl-18382387

RESUMEN

Seventy-one of 84 human immunodeficiency virus (HIV)-infected children [84.5% (95% confidence interval: 75-91.5%)] were hepatitis A virus (HAV) seropositive after 2 doses of HAV vaccine. Higher CD4% and HIV suppression were significantly associated with increased HAV seropositivity rate. In multivariate analysis, CD4 >or=25% and young age were independent predictors of HAV seropositivity. Of 7 children given a third HAV vaccine dose because of negative HAV antibody after 2 doses, 2 (29%) became seropositive.


Asunto(s)
Infecciones por VIH/inmunología , Anticuerpos de Hepatitis A/sangre , Vacunas contra la Hepatitis A/inmunología , Hepatitis A/prevención & control , Adolescente , Factores de Edad , Relación CD4-CD8 , Niño , Preescolar , Femenino , Infecciones por VIH/tratamiento farmacológico , Infecciones por VIH/virología , Humanos , Lactante , Recién Nacido , Masculino , Carga Viral
9.
J Palliat Med ; 11(3): 459-69, 2008 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-18363489

RESUMEN

OBJECTIVE: The frequency of do-not-resuscitate (DNR) orders and hospice enrollment in children/adolescents living with acquired immune deficiency syndrome (AIDS) and followed in Pediatric AIDS Clinical Trials Group (PACTG) Study 219C was examined, and evaluated for any association with racial disparities or enhanced quality of life (QOL), particularly psychological adjustment. METHODS: A cross-sectional analysis of children with AIDS enrolled in this prospective multicenter observational study between 2000 and 2005 was conducted to evaluate the incidence of DNR/hospice overall and by calendar time. Linear regression models were used to compare caregivers' reported QOL scores within 6 domains between those with and without DNR/hospice care, adjusting for confounders. RESULTS: Seven hundred twenty-six (726) children with AIDS had a mean age of 12.9 years (standard deviation [SD]=4.5), 51% were male, 60% black, 25% Hispanic. Twenty-one (2.9%) had either a DNR order (n=16), hospice enrollment (n=7), or both (n=2). Of 41 children who died, 80% had no DNR/hospice care. Increased odds of DNR/hospice were observed for those with CD4% less than 15%, no current antiretroviral use, and prior hospitalization. No differences by race were detected. Adjusted mean QOL scores were significantly lower for those with DNR/hospice enrollment than those without across all domains except for psychological status and health care utilization. Poorer psychological status correlated with higher symptom distress, but not with DNR/hospice enrollment after adjusting for symptoms. CONCLUSIONS: Children who died of AIDS rarely had DNR/hospice enrollment. National guidelines recommend that quality palliative care be integrated routinely with HIV care. Further research is needed to explore the barriers to palliative care and advance care planning in this population.


Asunto(s)
Síndrome de Inmunodeficiencia Adquirida/psicología , Cuidados Paliativos al Final de la Vida/métodos , Cuidados Paliativos/métodos , Órdenes de Resucitación , Síndrome de Inmunodeficiencia Adquirida/fisiopatología , Síndrome de Inmunodeficiencia Adquirida/terapia , Adolescente , Niño , Estudios Transversales , Femenino , Humanos , Modelos Lineales , Masculino , Estudios Prospectivos , Perfil de Impacto de Enfermedad
10.
J Pain Symptom Manage ; 56(1): 53-62, 2018 07.
Artículo en Inglés | MEDLINE | ID: mdl-29526613

RESUMEN

CONTEXT: Advance care planning rates remain low, especially among people who are HIV positive, disadvantaged, and African American. Although advance care planning can be a sensitive topic for clinicians and patients to discuss, health values clarification can be an important initial step. OBJECTIVES: The purpose of the study was to explore health values of African Americans living with HIV/AIDS and to examine correlates of these values. METHODS: Data were from the first 325 participants in the AFFIRM Care study, which enrolled adults living with HIV/AIDS in Baltimore, Maryland, who had histories of illicit drug use. Respondents were asked whether (yes/no) they thought any of six health states would be worse than death: severe unremitting pain, total dependency on others, irreversible coma, being on mechanical ventilation, nursing home residence, and severe dementia. Latent class analysis was used to group individuals by their pattern of responses, interpretable as preference for aggressive (life-sustaining) or nonaggressive (palliative) end-of-life care. Latent class regression analysis was used to examine associations between class membership and background, health status, and social variables. RESULTS: We found statistical support for a three-class latent class analysis model: 1) the nonaggressive treatment class, comprising 43% of cases, in which members perceived that every state was worse than death; 2) the aggressive treatment class, comprising 33% of cases, in which members perceived that none of the states was worse than death; and 3) the mixed class (24% of cases), in which members perceived that only four of the six states were worse than death. CONCLUSION: Three-quarters of participant response patterns had clear preferences for treatment decisions. Further research is needed to ensure inclusion of end-of-life scenarios relevant to this population.


Asunto(s)
Negro o Afroamericano/psicología , Infecciones por VIH/etnología , Infecciones por VIH/psicología , Conocimientos, Actitudes y Práctica en Salud/etnología , Adulto , Planificación Anticipada de Atención , Anciano , Femenino , Infecciones por VIH/terapia , Estado de Salud , Humanos , Masculino , Persona de Mediana Edad , Cuidados Paliativos/psicología , Trastornos Relacionados con Sustancias/etnología , Trastornos Relacionados con Sustancias/psicología , Cuidado Terminal/psicología , Adulto Joven
11.
J Pain Symptom Manage ; 33(6): 737-44, 2007 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-17531914

RESUMEN

The release in 2007 of the National Quality Forum (NQF) preferred practices is a significant advance in the field of palliative care. These NQF preferred practices build on the clinical practice guidelines for palliative care developed by the National Consensus Project (NCP). The NQF is dedicated to improving the quality of American health care, and their focus on palliative care recognizes its growing place within the broader scope of health care. This article reviews the work of both the NCP and NQF and presents the domains and preferred practices that should guide quality improvement efforts in hospice and palliative care.


Asunto(s)
Cuidados Paliativos/organización & administración , Guías de Práctica Clínica como Asunto , Humanos , Evaluación de Procesos y Resultados en Atención de Salud/organización & administración , Estados Unidos
12.
Hosp Pediatr ; 7(4): 236-244, 2017 04.
Artículo en Inglés | MEDLINE | ID: mdl-28351944

RESUMEN

Chronically critically ill pediatric patients represent an emerging population in NICUs and PICUs. Chronic critical illness has been recognized and defined in the adult population, but the same attention has not been systematically applied to pediatrics. This article reviews what is currently known about pediatric chronic critical illness, highlighting the unique aspects of chronic critical illness in infants and children, including specific considerations of prognosis, outcomes, and decision-making. We propose a definition that incorporates NICU versus PICU stays, recurrent ICU admissions, dependence on life-sustaining technology, multiorgan dysfunction, underlying medical complexity, and the developmental implications of congenital versus acquired conditions. We propose a research agenda, highlighting existing knowledge gaps and targeting areas of improvement in clinical care, research, and policy.


Asunto(s)
Enfermedad Crónica , Cuidados Críticos , Enfermedad Crítica , Pediatría , Investigación Biomédica , Humanos , Unidades de Cuidado Intensivo Neonatal , Unidades de Cuidado Intensivo Pediátrico
13.
J Pain Symptom Manage ; 54(4): 508-513, 2017 10.
Artículo en Inglés | MEDLINE | ID: mdl-28743661

RESUMEN

CONTEXT: In the era of effective antiretroviral therapy, persons living with HIV/AIDS (PLWHA) are living longer, transforming HIV into a serious chronic illness, warranting patient-provider discussion about advanced care planning (ACP). Evidence is needed to inform physicians on how to approach ACP for these patients. Chronic pain is common in PLWHA, particularly in those who have substance use disorders; although it is known that this population is at risk for poorer patient-physician engagement, the effects on ACP are unknown. OBJECTIVES: To further characterize factors associated with successful ACP in PLWHA, we examined associations between patient-physician relationship, chronic pain, family communication and problem-solving skills, and rates of patients discussing ACP with their physicians. METHODS: Data were from the Affirm Care study (N = 325), which examined social and environmental factors associated with health outcomes among PLWHA and their informal caregivers. RESULTS: In multivariate analysis, higher odds of patient reports of discussing ACP with their physicians were associated with their higher rating of their relationship with their physician (adjusted odds ratio [AOR] 1.73; P < 0.05), higher levels of chronic pain (AOR 2.16; P < 0.05), experiencing prior family arguments about end-of-life medical decisions (AOR 2.43; P < 0.01), and feeling comfortable talking to family members about problems (AOR 1.33; P < 0.05). CONCLUSION: These results suggest that interventions to increase ACP among HIV patients and their physicians should promote patient-centered patient-provider relationships and PLWHAs' family communication and family problem-solving skills. The findings also suggest that PLWHA with chronic pain and prior family discord over end-of-life medical decisions may be primed for ACP.


Asunto(s)
Planificación Anticipada de Atención , Dolor Crónico/psicología , Familia/psicología , Infecciones por VIH/psicología , Relaciones Médico-Paciente , Trastornos Relacionados con Sustancias/psicología , Cuidadores/psicología , Dolor Crónico/complicaciones , Dolor Crónico/fisiopatología , Dolor Crónico/terapia , Comunicación , Estudios Transversales , Femenino , Infecciones por VIH/complicaciones , Infecciones por VIH/fisiopatología , Infecciones por VIH/terapia , Humanos , Masculino , Persona de Mediana Edad , Análisis Multivariante , Oportunidad Relativa , Trastornos Relacionados con Sustancias/complicaciones , Trastornos Relacionados con Sustancias/fisiopatología , Trastornos Relacionados con Sustancias/terapia
14.
Hosp Pediatr ; 2017 Jul 27.
Artículo en Inglés | MEDLINE | ID: mdl-28751491

RESUMEN

OBJECTIVES: The past 2 decades have seen an expanding pediatric population that is chronically critically ill: children with repeated and prolonged hospitalizations and ongoing dependence on technologies to sustain vital functions. Although illness complexity prompts many hospitalizations, our goal with this study was to explore modifiable patient, family, and health system contributions to excess hospital days for children with chronic critical illness (CCI). METHODS: Semistructured interviews were conducted with 51 stakeholders known for their CCI expertise. Stakeholders were from 5 metropolitan areas and were either (1) interdisciplinary providers (inpatient and/or outpatient clinicians, home health providers, foster care affiliates, or policy professionals) or (2) parents of children with CCI. Interview transcripts were qualitatively analyzed for themes. RESULTS: All stakeholders agreed that homelike settings are ideal care sites for children with CCI, yet in every region these children experience prolonged hospitalizations. The perceived causes of excess hospital days are (1) inadequate communication and coordination within health care teams and between clinicians and families, (2) widespread gaps in qualified pediatric home health services and durable medical equipment providers, (3) inconsistent parent support, and (4) policies that limit pediatric service eligibility, state-supported case management, and nonhospital care sites. CONCLUSIONS: Despite an expanding pediatric population with CCI, we lack an intentional care model to minimize their hospitalizations. In this study, we generate several hypotheses for exploring the potential impact of expanded access to home nursing, robust care coordination, and family and clinician support to reduce hospital days for this population of high health care utilizers.

15.
Pediatr Infect Dis J ; 25(11): 1044-8, 2006 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-17072128

RESUMEN

BACKGROUND: Ritonavir, a potent inhibitor of CYP3A4 enzyme, can lead to high systemic concentrations of fluticasone when these 2 drugs are coadministered. Exogenous Cushing syndrome (CS) in HIV-infected patients receiving ritonavir and fluticasone has been reported frequently in adults but not in children. Three patients, all receiving ritonavir-fluticasone, developed weight gain and altered fat distribution concerning for either lipodystrophy or CS. METHODS: Three patients were initially identified by their clinicians as having weight gain and altered fat distribution concerning for either lipodystrophy or CS. All 3 patients were receiving fluticasone and ritonavir, leading to concern about a potential medication interaction. After suspecting exogenous CS, all patient medication lists were reviewed to identify all children prescribed ritonavir-fluticasone. Blood adrenocorticotropic hormone (ACTH) and cortisol were obtained during routine clinic visits. Medication history, laboratory data and physical examination findings were abstracted from medical records. RESULTS: Seventeen (9%) of 189 patients in this pediatric HIV clinic had been prescribed ritonavir-fluticasone. Of 7 patients still taking ritonavir-fluticasone, CS features were present in 4 (57%) patients, including the 3 patients initially suspected of CS or lipodystrophy. Five (71%) patients, including all 4 with CS features, had low serum concentrations: median cortisol <0.2 microg/dL (normal, <0.2 microg/dL). Three of these 5 had ACTH measured, all of which were low: median ACTH 3.0 pmol/L (range, 2.2-<5.0 pmol/L). One patient taking ritonavir-fluticasone had suppressed cortisol but no CS features. The 2 patients with normal serum cortisol and ACTH values had persistent HIV viremia and were suspected of medication nonadherence. Clinical and laboratory abnormalities generally normalized in affected patients within 3 months after discontinuation of fluticasone alone (2) and ritonavir-fluticasone (3). CONCLUSIONS: Pediatric HIV physicians frequently prescribe fluticasone and ritonavir together. The combination can cause CS and adrenal suppression in children, potentially leading to misdiagnosis of lipodystrophy syndrome and to increased risk of adrenal crisis during acute illness. Alternatives to fluticasone should be used for treating children receiving ritonavir.


Asunto(s)
Androstadienos/efectos adversos , Antiinflamatorios/efectos adversos , Síndrome de Cushing/inducido químicamente , Interacciones Farmacológicas , Infecciones por VIH/tratamiento farmacológico , Inhibidores de la Proteasa del VIH/efectos adversos , Ritonavir/efectos adversos , Adolescente , Adulto , Androstadienos/metabolismo , Antiinflamatorios/metabolismo , Niño , Quimioterapia Combinada , Femenino , Fluticasona , Inhibidores de la Proteasa del VIH/metabolismo , Síndrome de Lipodistrofia Asociada a VIH/inducido químicamente , Humanos , Lactante , Masculino , Ritonavir/metabolismo
16.
J Palliat Med ; 9(1): 70-81, 2006 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-16430347

RESUMEN

BACKGROUND: The American Academy of Pediatrics (AAP) statement on Pediatric Palliative Care has emphasized the importance of identifying barriers and facilitators to effective palliative care. OBJECTIVES: To survey pediatric residents about their personal and professional experiences concerning death and determine factors associated with guilt (a potential barrier) and attendance at patient funerals (a potential facilitator). DESIGN/METHODS: PL-2 residents were surveyed midway through pediatric residency. Both personal and professional attitudes and experiences about death were solicited. RESULTS: Seventy-nine (90%) PL-2 residents completed the survey from 1997-2000. While 91% reported that a close family member or friend had died, 75% recalled that their family had not openly discussed issues of death. Thus far in their career, residents reported encountering a mean of 9.4 patients who had died (+/-6.4; range, 0-30 deaths) and 39% expressed guilt about a death. Those who felt guilt about a death were more likely to state they felt responsible (p<0.01) but less likely to think about their own death (p<0.01). While 23% had attended a patient's funeral, 42% expressed fear of attending. The mean number of times a resident informed a family of a patient's death was slightly higher in those who attended a patient's funeral, and approached statistical significance. CONCLUSIONS: By midresidency, these pediatric residents have had many personal and professional experiences with death. Residency training programs must provide venues for residents to address bereavement, facilitate the integration of these experiences, and provide time to attend funerals.


Asunto(s)
Actitud del Personal de Salud , Actitud Frente a la Muerte , Internado y Residencia , Pediatría , Médicos/psicología , Adulto , Distribución de Chi-Cuadrado , Estudios Transversales , Femenino , Humanos , Masculino
17.
J Palliat Med ; 9(4): 922-33, 2006 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-16910807

RESUMEN

OBJECTIVE: To implement and evaluate a quality improvement program of interdisciplinary palliative care education and support intended to increase the competence, confidence and ability to manage personal grief of health care professionals caring for dying children. SETTING: A children's hospital in an urban academic medical center. PARTICIPANTS: Pediatric health care professionals of all disciplines caring for children with life-threatening conditions. INTERVENTIONS: We initiated a quality improvement program of professional education and support consisting of four interdisciplinary activities facilitated by the pediatric palliative care team. The Compassionate Care Network (CCN) provides an open forum for interdisciplinary networking and education. Palliative Care Rounds (PCR) provides education through monthly case-based discussions on selected units. Patient Care Conferences (PCC) facilitate communication and care planning for selected patients with palliative care needs on any unit in the children's center. Bereavement Debriefing Sessions (BDS) offer health professionals the opportunity to manage their responses to grief after a patient's death. EVALUATION MEASURES: From February 2002 to September 2003, we prospectively tracked the frequency of sessions conducted, the number and discipline of attendees, the age and diagnosis of patients discussed, and themes raised at each session. Participants evaluated each session. RESULTS: One hundred one sessions were conducted (PCR = 31, PCC = 23, CCN = 9, BDS = 38) for 950 participants (PCR = 312, PCC = 188, CCN = 193, BDS = 257). All units and disciplines participated in one or more sessions. Evaluations report that sessions are informative and will influence future professional practice. CONCLUSIONS: A program of interdisciplinary interventions can successfully educate and support health care professionals in providing palliative and end-of-life care for children. This program model can be applied in diverse pediatric health care settings.


Asunto(s)
Aflicción , Hospitales Pediátricos , Cuidados Paliativos/psicología , Grupo de Atención al Paciente , Pediatría/educación , Calidad de la Atención de Salud/organización & administración , Niño , Humanos , Cuidados Paliativos/métodos
18.
AIDS Patient Care STDS ; 20(4): 275-84, 2006 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-16623626

RESUMEN

Children and adolescents with HIV-1 infection and elevated viral loads are at risk for disease progression. When outpatient adherence efforts fail to reduce viral loads, we have chosen to hospitalize patients for directly observed antiretroviral therapy. A retrospective chart review was performed for patients who were admitted for adherence concerns to a rehabilitation facility from December 1, 2000 to December 1, 2003. Differences in CD4 count and viral load at admission, prior to discharge and 6 months after discharge were evaluated using the Wilcoxon signed-ranks test. Nineteen admissions were included in the analysis. Compared to the mean CD4 count at admission (262), the mean CD4 counts at discharge (492) and 6 months after discharge (429) were significantly higher (p < 0.001 and p = 0.01, respectively). Similar results were observed for change in CD4 percentage. Compared to the mean viral load at admission (log 5.7), the mean viral loads at discharge (log 4.7) and 6 months after discharge (log 5) were significantly lower (p < 0.001 and p < 0.004). The majority of admissions (74%) involved a change in highly active antiretroviral therapy (HAART) regimen. In conclusion, hospitalization for directly observed therapy of HIV-1-infected children and adolescents with elevated viral loads and nonadherence resulted in an immediate and sustained (up to 6 months) reduction in viral load and increase in CD4 count.


Asunto(s)
Fármacos Anti-VIH/uso terapéutico , Terapia Antirretroviral Altamente Activa , Terapia por Observación Directa , Infecciones por VIH/tratamiento farmacológico , Pacientes Internos , Cooperación del Paciente , Adolescente , Recuento de Linfocito CD4 , Niño , Preescolar , Humanos , Lactante , Estudios Retrospectivos , Resultado del Tratamiento , Carga Viral
19.
Child Adolesc Psychiatr Clin N Am ; 15(3): 575-84, vii, 2006 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-16797439

RESUMEN

When a child is diagnosed with a life-threatening or life-limiting condition, their physical and affective world is immediately changed, regardless of the outcome of treatment. Pediatric care providers are in a unique position to offer hope to children and families even when cure is not possible. This hope focuses not only on cure, but incorporates the understanding that quality of life is not commensurate with length of life and that compassionate care can be provided in all stages of treatment.


Asunto(s)
Convalecencia , Cuidados Paliativos , Actitud Frente a la Muerte , Actitud Frente a la Salud , Niño , Servicios de Salud del Niño , Comunicación , Humanos , Relaciones Profesional-Familia , Revelación de la Verdad
20.
Pediatr Infect Dis J ; 35(6): 642-8, 2016 06.
Artículo en Inglés | MEDLINE | ID: mdl-26906161

RESUMEN

BACKGROUND: Antiretroviral (ARV) management in pediatrics is a challenging process in which multiple barriers to optimal therapy can lead to poor clinical outcomes. In a pediatric HIV clinic, we implemented a systematic ARV stewardship program to evaluate ARV regimens and make recommendations for optimization when indicated. METHODS: A comprehensive assessment tool was used to screen for issues related to genotypic resistance, virologic/immunologic response, drug-drug interactions, side effects and potential for regimen simplification. The ARV stewardship team (AST) made recommendations to the HIV clinic provider, and followed patients prospectively to assess clinical outcomes at 6 and 12 months. RESULTS: The most common interventions made by the AST included regimen optimization in patients on suboptimal regimens based on resistance mutations (35.4%), switching to safer ARVs (33.3%) and averting significant drug-drug interactions (10.4%). In patients anticipated to have a change in viral load (VL) as a result of the AST recommendations, we identified a significant benefit in virologic outcomes at 6 and 12 months when recommendations were implemented within 6 months of ARV review. Patients who had recommendations implemented within 6 months had a 7-fold higher probability of achieving a 0.7 log10 reduction in VL by 6 months, and this benefit remained significant after controlling for adherence [adjusted odds ratio: 6.8 (95% confidence interval: 1.03-44.9; P <0.05)]. CONCLUSIONS: A systematic ARV stewardship program implemented at a pediatric HIV clinic significantly improved clinical outcomes. ARV stewardship programs can be considered a core strategy for continuous quality improvement in the management of HIV-infected children and adolescents.


Asunto(s)
Fármacos Anti-VIH/administración & dosificación , Utilización de Medicamentos/normas , Infecciones por VIH/tratamiento farmacológico , Adolescente , Niño , Femenino , Hospitales Pediátricos , Humanos , Masculino , Estudios Prospectivos , Resultado del Tratamiento , Adulto Joven
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