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2.
J Pain Symptom Manage ; 56(1): 53-62, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-29526613

RESUMO

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.


Assuntos
Negro ou Afro-Americano/psicologia , Infecções por HIV/etnologia , Infecções por HIV/psicologia , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Adulto , Planejamento Antecipado de Cuidados , Idoso , Feminino , Infecções por HIV/terapia , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/psicologia , Transtornos Relacionados ao Uso de Substâncias/etnologia , Transtornos Relacionados ao Uso de Substâncias/psicologia , Assistência Terminal/psicologia , Adulto Jovem
3.
Pediatr Crit Care Med ; 18(11): e561-e568, 2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28922265

RESUMO

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.


Assuntos
Atitude do Pessoal de Saúde , Atitude Frente a Saúde , Doença Crônica/terapia , Cuidados Críticos , Estado Terminal/terapia , Unidades de Terapia Intensiva Pediátrica , Tempo de Internação , Criança , Continuidade da Assistência ao Paciente , Humanos , Entrevistas como Assunto , Pais/psicologia , Relações Profissional-Família , Relações Profissional-Paciente , Pesquisa Qualitativa , Estados Unidos
4.
Hosp Pediatr ; 2017 Jul 27.
Artigo em Inglês | MEDLINE | ID: mdl-28751491

RESUMO

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.

5.
J Pain Symptom Manage ; 54(4): 508-513, 2017 10.
Artigo em Inglês | MEDLINE | ID: mdl-28743661

RESUMO

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.


Assuntos
Planejamento Antecipado de Cuidados , Dor Crônica/psicologia , Família/psicologia , Infecções por HIV/psicologia , Relações Médico-Paciente , Transtornos Relacionados ao Uso de Substâncias/psicologia , Cuidadores/psicologia , Dor Crônica/complicações , Dor Crônica/fisiopatologia , Dor Crônica/terapia , Comunicação , Estudos Transversais , Feminino , Infecções por HIV/complicações , Infecções por HIV/fisiopatologia , Infecções por HIV/terapia , Humanos , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Razão de Chances , Transtornos Relacionados ao Uso de Substâncias/complicações , Transtornos Relacionados ao Uso de Substâncias/fisiopatologia , Transtornos Relacionados ao Uso de Substâncias/terapia
6.
Pediatr Crit Care Med ; 18(9): e415-e422, 2017 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-28658198

RESUMO

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.


Assuntos
Atitude do Pessoal de Saúde , Tomada de Decisão Clínica/métodos , Consenso , Cuidados Críticos , Dissidências e Disputas , Padrões de Prática Médica/estatística & dados numéricos , Responsabilidade Social , Adolescente , Criança , Pré-Escolar , Doença Crônica , Cuidados Críticos/métodos , Cuidados Críticos/organização & administração , Cuidados Críticos/psicologia , Estado Terminal , Tomada de Decisões , Feminino , Pesquisas sobre Atenção à Saúde , Humanos , Lactente , Recém-Nascido , Unidades de Terapia Intensiva Pediátrica , Relações Interprofissionais , Masculino , Neonatologia , Papel do Médico , Relações Profissional-Família , Revelação da Verdade , Estados Unidos
7.
Hosp Pediatr ; 7(4): 236-244, 2017 04.
Artigo em Inglês | MEDLINE | ID: mdl-28351944

RESUMO

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.


Assuntos
Doença Crônica , Cuidados Críticos , Estado Terminal , Pediatria , Pesquisa Biomédica , Humanos , Unidades de Terapia Intensiva Neonatal , Unidades de Terapia Intensiva Pediátrica
8.
Pediatr Infect Dis J ; 35(6): 642-8, 2016 06.
Artigo em Inglês | MEDLINE | ID: mdl-26906161

RESUMO

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.


Assuntos
Fármacos Anti-HIV/administração & dosagem , Uso de Medicamentos/normas , Infecções por HIV/tratamento farmacológico , Adolescente , Criança , Feminino , Hospitais Pediátricos , Humanos , Masculino , Estudos Prospectivos , Resultado do Tratamento , Adulto Jovem
9.
Palliat Med ; 29(4): 346-53, 2015 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-25670471

RESUMO

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.


Assuntos
Diretivas Antecipadas/legislação & jurisprudência , Atitude do Pessoal de Saúde , Cuidados para Prolongar a Vida/legislação & jurisprudência , Pais/psicologia , Pediatria/legislação & jurisprudência , Assistência Terminal/métodos , Adulto , Criança , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Relações Médico-Paciente , Ordens quanto à Conduta (Ética Médica) , Assistência Terminal/legislação & jurisprudência , Suspensão de Tratamento
10.
AIDS ; 29(1): 111-6, 2015 Jan 02.
Artigo em Inglês | MEDLINE | ID: mdl-25562495

RESUMO

OBJECTIVE: To compare the growth patterns in the first year of life between children born to perinatally HIV-infected (PHIV) vs. nonperinatally HIV-infected (NPHIV) women in the United States. DESIGN: Retrospective cohort study of HIV-infected pregnant women who received care and delivered a live-born at two urban tertiary centers from January 2004 to March 2012. METHODS: We collected data via chart review on demographics, behavioral risk factors, HIV clinical markers, combination antiretroviral therapy (cART), mode of HIV acquisition, pregnancy outcomes, and infant anthropometrics on study participants. Mixed-effects models were used to assess the association between maternal mode of HIV acquisition and weight-for-age z-score (WAZ), length-for-age z-score (LAZ), and weight-for-length z-score (WLZ). RESULTS: Of the 152 pregnancies evaluated, 32 and 120 infants were born to 25 PHIV and 99 NPHIV women, respectively. Infants of PHIV women exhibited lower mean WAZ and LAZ throughout the first year of life in unadjusted analyses. After adjusting for potential confounders, the relationship between PHIV women and LAZ persisted (ß = -0.54, P = 0.026). Small-for-gestational age for each birth anthropometric parameter (birth length, birth weight, and both birth length and weight) was associated with decreased LAZ (ß = -0.48, P = 0.007), WAZ (ß = -0.99, P < 0.001), and WLZ (ß = -0.36, P = 0.027), respectively. A delivery HIV RNA level below 400 copies/ml was associated with increased WAZ and WLZ (ß = 0.43, P = 0.015 and ß = 0.38, P = 0.021, respectively). CONCLUSIONS: Infants of PHIV women may remain at persistently decreased lengths throughout the first year of life. Further studies aimed at understanding intrauterine and environmental factors in PHIV women are warranted.


Assuntos
Desenvolvimento Infantil/fisiologia , Infecções por HIV/tratamento farmacológico , Complicações Infecciosas na Gravidez/tratamento farmacológico , Peso ao Nascer , Peso Corporal , Feminino , Humanos , Lactente , Recém-Nascido , Transmissão Vertical de Doenças Infecciosas , Masculino , Gravidez , Complicações Infecciosas na Gravidez/virologia , Resultado da Gravidez , Estudos Retrospectivos , Fatores de Risco , Estados Unidos
11.
Pediatr Infect Dis J ; 34(12): 1365-8, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-26780022

RESUMO

BACKGROUND: There is limited information on long-term consequences of continuing combination antiretroviral therapy (cART) consisting of <3 active drugs in treatment-experienced youth with perinatal HIV (PHIV). This study describes the clinical outcomes of PHIV youth who maintained virologic suppression (VS) for ≥1 year despite receiving cART with <3 active agents. METHODS: A retrospective cohort study was conducted to quantify the duration of VS (viral load < 400 copies/mL), and using Cox proportional hazards regression, we identify factors associated with the primary outcome of virologic breakthrough (VB). RESULTS: Thirty-seven patients were included. The median age, baseline CD4 count and HIV RNA viral load were 14 years, 477 cells/mm and 2920 copies/mL, respectively. All patients harbored reverse transcriptase, and 57% harbored protease mutations. The median duration of VS was 37 months (interquartile range: 22-66). Fifteen patients (41%) had VB. The median change in CD4 count during VS was +82 cells/mm at 12 months. The risk of VB was lower in those who gained ≥50 cells/mm by 12 months (unadjusted hazards ratio: 0.271; 95% confidence interval: 0.0825-0.893; P, 0.032); however, this was not significant in the adjusted model. CONCLUSIONS: VS was maintained for a median of 3 years without decline in CD4 count. Independent risk factors for VB were not identified; however, there was a trend toward higher risk of VB in those without CD4 gain of ≥50 cells/mm by 12 months. Suppressive cART containing <3 active agents could be an option in difficult to manage PHIV youth with close monitoring.


Assuntos
Farmacorresistência Viral/genética , Infecções por HIV/tratamento farmacológico , Infecções por HIV/virologia , HIV-1/efeitos dos fármacos , Transmissão Vertical de Doenças Infecciosas , Adolescente , Adulto , Antirretrovirais/farmacologia , Antirretrovirais/uso terapêutico , Contagem de Linfócito CD4 , Feminino , Infecções por HIV/transmissão , HIV-1/genética , Humanos , Masculino , Mutação/genética , Estudos Retrospectivos , Carga Viral , Adulto Jovem
12.
J Palliat Med ; 18(2): 157-61, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-24983892

RESUMO

BACKGROUND: For parents of a critically ill infant, good communication may help alleviate stress and anxiety. To improve communication, physicians must be responsive to families' needs and values surrounding the care of their hospitalized infant. OBJECTIVE: We adapted a Decision-Making Tool for the Neonatal Intensive Care Unit (N-DMT) to encourage consideration of family concerns and preferences in daily care planning. DESIGN: This was a randomized controlled design. SETTING/SUBJECTS: Parents and providers of critically ill neonates were eligible. Parents were randomized to an intervention group (using the N-DMT) or standard of care. N-DMT information was shared through the electronic medical record and communicated directly to the primary provider. MEASUREMENTS: Daily rounds on all infants were audio recorded. Parents completed the State-Trait Anxiety Inventory at the first interview and 2 weeks later. Parents completed the Family Inventory of Needs-Pediatrics (FIN-PED) survey and an N-DMT-specific survey 2 weeks postenrollment. RESULTS: Complete data were obtained on 10 control and 9 intervention families. Groups did not differ on demographics or mean infant Score of Neonatal Acute Physiology (SNAP) scores (36 versus 37). FIN-PED scores were similar for both groups. The control group showed decreased anxiety over time. The content of rounds did not differ between groups. The intervention group reported lower satisfaction with care, specifically in questions regarding communication. CONCLUSIONS: In this pilot study, we found that families in the intervention group were less satisfied with communication. Families who are primed to expect better communication, such as those participating in a communication intervention, may be less satisfied with standard care.


Assuntos
Comunicação , Terapia Intensiva Neonatal/métodos , Planejamento de Assistência ao Paciente , Relações Profissional-Família , Adulto , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Projetos Piloto , Adulto Jovem
13.
Pediatrics ; 134(6): e1670-7, 2014 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-25404726

RESUMO

In 2006, hospice and palliative medicine (HPM) became an officially recognized subspecialty. This designation helped initiate the Accreditation Council of Graduate Medical Education Outcomes Project in HPM. As part of this process, a group of expert clinician-educators in HPM defined the initial competency-based outcomes for HPM fellows (General HPM Competencies). Concurrently, these experts recognized and acknowledged that additional expertise in pediatric HPM would ensure that the competencies for pediatric HPM were optimally represented. To fill this gap, a group of pediatric HPM experts used a product development method to define specific Pediatric HPM Competencies. This article describes the development process. With the ongoing evolution of HPM, these competencies will evolve. As part of the Next Accreditation System, the Accreditation Council of Graduate Medical Education uses milestones as a framework to better define competency-based, measurable outcomes for trainees. Currently, there are no milestones specific to HPM, although the field is designing curricular milestones with multispecialty involvement, including pediatrics. These competencies are the conceptual framework for the pediatric content in the HPM milestones. They are specific to the pediatric HPM subspecialist and should be integrated into the training of pediatric HPM subspecialists. They will serve a foundational role in HPM and should inform a wide range of emerging innovations, including the next evolution of HPM Competencies, development of HPM curricular milestones, and training of adult HPM and other pediatric subspecialists. They may also inform pediatric HPM outcome measures, as well as standards of practice and performance for pediatric HPM interdisciplinary teams.


Assuntos
Competência Clínica/normas , Cuidados Paliativos na Terminalidade da Vida/normas , Medicina Paliativa/educação , Pediatria/educação , Acreditação , Criança , Comportamento Cooperativo , Currículo/tendências , Educação de Pós-Graduação em Medicina/tendências , Grupos Focais , Previsões , Cuidados Paliativos na Terminalidade da Vida/tendências , Humanos , Comunicação Interdisciplinar , Medicina Paliativa/tendências , Pediatria/tendências , Sociedades Médicas , Especialização/tendências , Conselhos de Especialidade Profissional/normas , Conselhos de Especialidade Profissional/tendências , Assistência Terminal/normas , Assistência Terminal/tendências , Estados Unidos
14.
J Neuroradiol ; 40(3): 172-80, 2013 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-23735170

RESUMO

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.


Assuntos
Isquemia Encefálica/diagnóstico , Infecções por HIV/patologia , Neuroimagem/métodos , Acidente Vascular Cerebral/diagnóstico , Adolescente , Isquemia Encefálica/complicações , Isquemia Encefálica/patologia , Criança , Progressão da Doença , Feminino , Infecções por HIV/complicações , Humanos , Masculino , Estudos Retrospectivos , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/patologia , Adulto Jovem
15.
Pediatr Infect Dis J ; 31(12): 1279-83, 2012 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-22926213

RESUMO

BACKGROUND: There is limited information on antiretroviral (ARV) regimens and outcomes in perinatally HIV (PHIV)-infected youth. Substantial drug resistance after long-term ARV use and nonadherence hinder efforts to design suppressive regimens for PHIV-infected youth. This study compares clinical outcomes by expected activity of the prescribed ARV regimens. METHODS: A retrospective cohort study of 13- to 24-year-old PHIV-infected youth on stable ARV regimens for ≥6 months was conducted at a pediatric HIV clinic. ARV regimens were retrospectively categorized as optimal or suboptimal based on accumulated genotypic resistance before study regimen initiation. RESULTS: Fifty-two patients with similar baseline characteristics met inclusion criteria (21 optimal and 31 suboptimal regimens). Patients receiving optimal regimens had significantly higher increases in CD4 than those given suboptimal regimens by week 48 of treatment (+62 versus +8 cells/mm, respectively; P = 0.04) and by the end of study period (+93 versus -1 cells/mm, respectively; P = 0.03). There were no significant differences between the groups in decline of viral load, frequency of opportunistic infections or hospitalizations or accumulation of resistance mutations. Overall, 60% of the optimal and 45% of the suboptimal groups had nonadherence during the study regimen (P = 0.3). CONCLUSIONS: PHIV-infected youth receiving optimal regimens had greater CD4 improvements but no difference in virologic outcomes compared with those receiving suboptimal regimens. In a patient population with significant nonadherence, providers must weigh the immunologic benefits of initiating an optimal regimen versus the potential risks of further resistance accumulation limiting future treatment options.


Assuntos
Fármacos Anti-HIV/administração & dosagem , Terapia Antirretroviral de Alta Atividade/métodos , Infecções por HIV/tratamento farmacológico , Adolescente , Fármacos Anti-HIV/farmacologia , Contagem de Linfócito CD4 , Estudos de Coortes , Farmacorresistência Viral , Feminino , HIV/genética , HIV/isolamento & purificação , Infecções por HIV/virologia , Humanos , Masculino , Estudos Retrospectivos , Resultado do Tratamento , Carga Viral , Adulto Jovem
16.
Case Rep Med ; 2012: 346039, 2012.
Artigo em Inglês | MEDLINE | ID: mdl-22899940

RESUMO

Herpes simplex virus type 2 (HSV-2) is most commonly associated with mucocutaneous manifestations; however, coinfections with HIV may be associated with atypical and more severe presentations of clinical disease. We present a case of a young woman with advanced perinatally acquired AIDS presenting with severe purulent pharyngitis, fevers, and toxic appearance with a subsequent diagnosis of disseminated primary HSV-2 infection in multiple noncontiguous mucocutaneous sites. This case highlights an unusual presentation of the protean nature of primary HSV infection and the potential severity of illness in patients with advanced immunosuppression.

17.
Complement Ther Clin Pract ; 17(2): 96-101, 2011 May.
Artigo em Inglês | MEDLINE | ID: mdl-21457899

RESUMO

Interest in mindfulness as a tool to improve health and well-being has increased rapidly over the past two decades. Limited qualitative research has been conducted on mindfulness and health. This study utilized in-depth interviews to explore the context, perceptions, and experiences of a sub-set of participants engaged in an acceptability study of mindfulness-based stress reduction (MBSR) among urban youth. Content analysis revealed that all in-depth interview participants reported experiencing some form of positive benefit and enhanced self-awareness as a result of MBSR program participation. Significant variation in the types and intensity of changes occurring was identified, ranging from a reframing and reduction of daily stressors to transformational shifts in life orientation and well-being. Variations in perceptions of and experiences with mindfulness should be studied in further depth in the context of prospective intervention research, including their potentially differential influence on mental and physical health outcomes.


Assuntos
Adaptação Psicológica , Meditação , Relações Metafísicas Mente-Corpo , Psicologia do Adolescente , Autoimagem , Estresse Psicológico/terapia , Adolescente , Adulto , Feminino , Saúde , Humanos , Entrevistas como Assunto , Vida , Masculino , Percepção , Resultado do Tratamento , População Urbana , Adulto Jovem
18.
AIDS Patient Care STDS ; 24(11): 693-6, 2010 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-20969466

RESUMO

A 19-year-old male with perinatally acquired HIV infection and AIDS (clinical stage 3) presented with a 9.1 × 5.0 cm hepatic mass. The resected mass was determined to be a hepatocellular carcinoma (HCC) without metastasis. The patient did not have active hepatitis B or C coinfection, as revealed by polymerase chain reaction (PCR), nor other risk factors for development of cirrhosis or HCC, and comprises only the second explicitly stated case of an HIV-positive individual developing HCC in the absence of concomitant hepatitis virus infection or other risk factors. This case illustrates the fact that as survival of perinatally infected individuals increases in the highly active antiretroviral therapy (HAART) era, new associations between HIV infection and other disease processes may be uncovered.


Assuntos
Carcinoma Hepatocelular/complicações , Infecções por HIV/complicações , Transmissão Vertical de Doenças Infecciosas , Neoplasias Hepáticas/complicações , Adulto , Terapia Antirretroviral de Alta Atividade , Carcinoma Hepatocelular/diagnóstico , Carcinoma Hepatocelular/virologia , Infecções por HIV/transmissão , Infecções por HIV/virologia , HIV-1 , Hepatite B/diagnóstico , Hepatite C/diagnóstico , Humanos , Neoplasias Hepáticas/diagnóstico , Neoplasias Hepáticas/virologia , Masculino , Adulto Jovem
19.
Pediatr Nurs ; 36(4): 185-9; quiz 190, 2010.
Artigo em Inglês | MEDLINE | ID: mdl-20860257

RESUMO

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.


Assuntos
Atitude do Pessoal de Saúde , Luto , Intervenção em Crise/organização & administração , Cuidados Paliativos/psicologia , Recursos Humanos em Hospital/psicologia , Grupos de Autoajuda/organização & administração , Adaptação Psicológica , Análise de Variância , Baltimore , Esgotamento Profissional/etiologia , Esgotamento Profissional/prevenção & controle , Esgotamento Profissional/psicologia , Criança , Humanos , Pesquisa em Avaliação de Enfermagem , Serviços de Saúde do Trabalhador/organização & administração , Cuidados Paliativos/organização & administração , Equipe de Assistência ao Paciente/organização & administração , Enfermagem Pediátrica/organização & administração , Desenvolvimento de Programas , Avaliação de Programas e Projetos de Saúde , Apoio Social , Inquéritos e Questionários
20.
Pediatr Rev ; 30(9): 337-48; quiz 349, 2009 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-19726700

RESUMO

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.


Assuntos
Infecções por HIV/terapia , Adolescente , Adulto , Antirretrovirais/uso terapêutico , Criança , Aconselhamento , DNA Viral/genética , Feminino , HIV/genética , Infecções por HIV/diagnóstico , Infecções por HIV/tratamento farmacológico , Infecções por HIV/transmissão , Humanos , Lactente , Masculino , Relações Pais-Filho , Gravidez , Cuidado Pré-Natal , RNA Mensageiro/genética , RNA Viral/genética , Comportamento Sexual , Transtornos Relacionados ao Uso de Substâncias/diagnóstico , Carga Viral , Adulto Jovem
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