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1.
JAMA ; 331(3): 224-232, 2024 01 16.
Artigo em Inglês | MEDLINE | ID: mdl-38227032

RESUMO

Importance: Increasing inpatient palliative care delivery is prioritized, but large-scale, experimental evidence of its effectiveness is lacking. Objective: To determine whether ordering palliative care consultation by default for seriously ill hospitalized patients without requiring greater palliative care staffing increased consultations and improved outcomes. Design, Setting, and Participants: A pragmatic, stepped-wedge, cluster randomized trial was conducted among patients 65 years or older with advanced chronic obstructive pulmonary disease, dementia, or kidney failure admitted from March 21, 2016, through November 14, 2018, to 11 US hospitals. Outcome data collection ended on January 31, 2019. Intervention: Ordering palliative care consultation by default for eligible patients, while allowing clinicians to opt-out, was compared with usual care, in which clinicians could choose to order palliative care. Main Outcomes and Measures: The primary outcome was hospital length of stay, with deaths coded as the longest length of stay, and secondary end points included palliative care consult rate, discharge to hospice, do-not-resuscitate orders, and in-hospital mortality. Results: Of 34 239 patients enrolled, 24 065 had lengths of stay of at least 72 hours and were included in the primary analytic sample (10 313 in the default order group and 13 752 in the usual care group; 13 338 [55.4%] women; mean age, 77.9 years). A higher percentage of patients in the default order group received palliative care consultation than in the standard care group (43.9% vs 16.6%; adjusted odds ratio [aOR], 5.17 [95% CI, 4.59-5.81]) and received consultation earlier (mean [SD] of 3.4 [2.6] days after admission vs 4.6 [4.8] days; P < .001). Length of stay did not differ between the default order and usual care groups (percent difference in median length of stay, -0.53% [95% CI, -3.51% to 2.53%]). Patients in the default order group had higher rates of do-not-resuscitate orders at discharge (aOR, 1.40 [95% CI, 1.21-1.63]) and discharge to hospice (aOR, 1.30 [95% CI, 1.07-1.57]) than the usual care group, and similar in-hospital mortality (4.7% vs 4.2%; aOR, 0.86 [95% CI, 0.68-1.08]). Conclusions and Relevance: Default palliative care consult orders did not reduce length of stay for older, hospitalized patients with advanced chronic illnesses, but did improve the rate and timing of consultation and some end-of-life care processes. Trial Registration: ClinicalTrials.gov Identifier: NCT02505035.


Assuntos
Estado Terminal , Cuidados Paliativos , Encaminhamento e Consulta , Idoso , Feminino , Humanos , Masculino , Hospitais para Doentes Terminais , Mortalidade Hospitalar , Estado Terminal/terapia , Hospitalização , Doença Pulmonar Obstrutiva Crônica/terapia , Demência/terapia , Insuficiência Renal/terapia
2.
Crit Care Med ; 47(11): 1591-1598, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31464767

RESUMO

OBJECTIVES: As ICUs are increasingly a site of end-of-life care, many have adopted end-of-life care resources. We sought to determine the association of such resources with outcomes of ICU patients. DESIGN: Retrospective cohort study. SETTING: Pennsylvania ICUs. PATIENTS: Medicare fee-for-service beneficiaries. INTERVENTIONS: Availability of any of one hospital-based resource (palliative care consultants) or four ICU-based resources (protocol for withdrawal of life-sustaining therapy, triggers for automated palliative care consultation, protocol for family meetings, and palliative care clinicians embedded in ICU rounds). MEASUREMENTS AND MAIN RESULTS: In mixed-effects regression analyses, admission to a hospital with end-of-life resources was not associated with mortality, length of stay, or treatment intensity (mechanical ventilation, hemodialysis, tracheostomy, gastrostomy, artificial nutrition, or cardiopulmonary resuscitation); however, it was associated with a higher likelihood of discharge to hospice (odds ratio, 1.58; 95% CI, 1.11-2.24), an effect that was driven by ICU-based resources (odds ratio, 1.37; 95% CI, 1.04-1.81) rather than hospital-based resources (odds ratio, 1.19; 95% CI, 0.83-1.71). Instrumental variable analysis using differential distance (defined as the additional travel distance beyond the hospital closest to a patient's home needed to reach a hospital with end-of-life resources) demonstrated that among those for whom differential distance would influence receipt of end-of-life resources, admission to a hospital with such resources was not associated with any outcome. CONCLUSIONS: ICU-based end-of-life care resources do not appear to change mortality but are associated with increased hospice utilization. Given that this finding was not confirmed by the instrumental variable analysis, future studies should attempt to verify this finding, and identify specific resources or processes of care that impact the care of ICU patients at the end of life.


Assuntos
Acessibilidade aos Serviços de Saúde , Unidades de Terapia Intensiva/organização & administração , Cuidados Paliativos , Adolescente , Adulto , Idoso , Protocolos Clínicos , Estudos de Coortes , Feminino , Hospitais para Doentes Terminais/estatística & dados numéricos , Mortalidade Hospitalar , Humanos , Masculino , Pessoa de Meia-Idade , Alta do Paciente , Pennsylvania/epidemiologia , Encaminhamento e Consulta , Estudos Retrospectivos , Suspensão de Tratamento , Adulto Jovem
3.
Am J Respir Crit Care Med ; 193(3): 321-9, 2016 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-26436758

RESUMO

RATIONALE: The goal of shared decision making is to match patient preferences, including evaluation of potential future outcomes, with available management options. Yet, it is unknown how patients with smoking-related thoracic diseases or their surrogates display future-oriented thinking. OBJECTIVES: To document prevalent themes in patients' and potential surrogate decision makers' future-oriented thinking when facing preference-sensitive choices. METHODS: We conducted 44 scenario-based semistructured interviews among a diverse group of outpatients with smoking-associated thoracic diseases and potential surrogates for whom one of three preference-sensitive decisions would be medically relevant. Using content analysis, we documented prevalent themes to understand how these individuals display future-oriented thinking. MEASUREMENTS AND MAIN RESULTS: Patients and potential surrogates generally expressed expectations for future outcomes but also acknowledged their limitations in doing so. When thinking about potential outcomes, decision makers relied on past experiences, including those only loosely related; perceived familiarity with treatment options; and spirituality. The content of these expectations included effects on family, emotional predictions, and prognostication. For surrogates, a tension existed between hope-based and fact-based expectations. CONCLUSIONS: Patients and surrogates may struggle to generate expectations, and these future-oriented thoughts may be based on loosely related past experiences or unrealistic optimism. These tendencies may lead to errors, preventing selection of treatments that promote true preferences. Clinicians should explore how decision makers engage in future-oriented thinking and what their expectations are as a component of the shared decision-making process. Future research should evaluate whether targeted guidance in future-oriented thinking may improve outcomes important to patients.


Assuntos
Fumar/efeitos adversos , Fumar/psicologia , Idoso , Idoso de 80 Anos ou mais , Carcinoma Pulmonar de Células não Pequenas/etiologia , Carcinoma Pulmonar de Células não Pequenas/psicologia , Cuidadores/psicologia , Tomada de Decisões , Feminino , Humanos , Entrevista Psicológica , Neoplasias Pulmonares/etiologia , Neoplasias Pulmonares/psicologia , Masculino , Pessoa de Meia-Idade , Doença Pulmonar Obstrutiva Crônica/etiologia , Doença Pulmonar Obstrutiva Crônica/psicologia , Pensamento
4.
Matern Child Health J ; 18(1): 38-44, 2014 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-23412712

RESUMO

In 2006, Florida began a pilot program under a federal Medicaid waiver to reform its Medicaid program in Broward and Duval counties. The Children's Medical Services Network, a subcontracted health care delivery system for Florida's children with special health care needs (CSHCN) enrolled in public insurance programs, participated in Medicaid reform through an Integrated Care System (ICS) for its enrollees. The ICS constitutes a significant departure from the subcontracted fee-for-service system used to deliver care to CSHCN in the non-reform counties, and limited information exists about its impact. The purpose of this study was to assess the effects of the ICS on Medicaid utilization among CSHCN in Broward and Duval. Administrative data from 3,947 CSHCN in Broward and Duval, and two control counties, enrolled in Florida's Medicaid program between 2006 and 2008 were used for analyses. Fixed effects negative binomial models were used to estimate the impact of the ICS on inpatient, outpatient, and emergency department utilization. Results show the number of outpatient visits decreased by 9 % in Broward and 16 % in Duval. The number of inpatient stays decreased in Duval by 35 %. Emergency room utilization increased slightly in Broward, although the estimate was not significant. Results suggest that managed care under the ICS has impacted utilization, most significantly for inpatient care. The ICS presents a viable model of managed care for CSHCN that could result in cost savings. Results should be interpreted with care because the full effects of the ICS implementation may take more time to materialize.


Assuntos
Serviços de Saúde da Criança/organização & administração , Prestação Integrada de Cuidados de Saúde/organização & administração , Crianças com Deficiência , Reforma dos Serviços de Saúde/organização & administração , Programas de Assistência Gerenciada/organização & administração , Adolescente , Criança , Serviços de Saúde da Criança/economia , Serviços de Saúde da Criança/estatística & dados numéricos , Pré-Escolar , Prestação Integrada de Cuidados de Saúde/economia , Serviço Hospitalar de Emergência/economia , Serviço Hospitalar de Emergência/estatística & dados numéricos , Serviço Hospitalar de Emergência/tendências , Feminino , Florida , Reforma dos Serviços de Saúde/economia , Reforma dos Serviços de Saúde/métodos , Humanos , Lactente , Pacientes Internados/estatística & dados numéricos , Masculino , Programas de Assistência Gerenciada/economia , Medicaid , Modelos Econométricos , Modelos Organizacionais , Pacientes Ambulatoriais/estatística & dados numéricos , Projetos Piloto , Estados Unidos , Adulto Jovem
5.
Matern Child Health J ; 18(9): 2124-33, 2014 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-24585412

RESUMO

The Patient-Centered Medical Home (PCMH) is a model of care that has been promoted as a way to transform a broken primary care system in the US. However, in order to convince more practices to make the transformation and to properly reimburse practices who are PCMHs, valid and reliable data are needed. Data that capture patient experiences in a PCMH is valuable, but which instrument should be used remains unclear. Our study aims to compare the validity and reliability of two national PCMH instruments. Telephone surveys were conducted with children who receive care from 20 pediatric practices across Florida (n = 990). All of the children are eligible for Medicaid or the Children's Health Insurance Program. Analyses were conducted to compare the Consumer Assessment of Health Plan Survey-Patient-Centered Medical Home (CAHPS-PCMH) and the National Survey of Children with Special Health Care Needs (NS-CSHCN) medical home domain. Respondents were mainly White non-Hispanic, female, under 35 years old, and from a two-parent household. The NS-CSHCN outperformed the CAHPS-PCMH in regard to scale reliability (Cronbach's alpha coefficients all ≥0.81 vs. 0.56-0.85, respectively). In regard to item-domain convergence and discriminant validity the CAHPS-PCMH fared better than the NS-CSHCN (range of convergence 0.66-0.93 vs. 0.32-1.00). The CAHPS-PCMH did not correspond to the scale structure in construct validity testing. Neither instrument performed well in the known-groups validity tests. No clear best instrument was determined. Further revision and calibration may be needed to accurately assess patient experiences in the PCMH.


Assuntos
Pesquisas sobre Atenção à Saúde/normas , Pais/psicologia , Satisfação do Paciente/estatística & dados numéricos , Assistência Centrada no Paciente/normas , Pediatria/normas , Adolescente , Adulto , Criança , Pré-Escolar , Children's Health Insurance Program , Características da Família , Feminino , Florida , Pesquisas sobre Atenção à Saúde/estatística & dados numéricos , Humanos , Masculino , Medicaid , Pessoa de Meia-Idade , Assistência Centrada no Paciente/estatística & dados numéricos , Pediatria/estatística & dados numéricos , Relações Médico-Paciente , Relações Profissional-Família , Reprodutibilidade dos Testes , Estados Unidos
7.
Matern Child Health J ; 16(3): 579-86, 2012 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-21509433

RESUMO

To assess the effects of an Integrated Care System (ICS) on parent-reported quality of care and satisfaction for Children with Special Health Care Needs (CSHCN). In 2006 Florida reformed its Medicaid program in Broward and Duval counties. Children's Medical Services Network (CMSN) chose to participate in the reform and developed an ICS for CSHCN. The ICS ushered in several changes such as more prior approval requirements and closing of the provider network. Telephone surveys were conducted with CMSN parents whose children reside in the reform counties and parents whose children reside outside of the reform counties in 2006 and 2007 (n = 1,727). Results from multivariate quasi-experimental models show that one component of parent-report quality of care, customer service, increased. Following implementation of the ICS, customer service increased by 0.22 points. After implementation of the ICS, parent-reported quality and satisfaction were generally unaffected. Although significant increases were not seen in the majority of the quality and satisfaction domains, it is nonetheless encouraging that parents did not report negative experiences with the ICS. It is important to present these interim findings so that progress can be monitored and decision-makers can begin to consider if the program should be expanded statewide.


Assuntos
Comportamento do Consumidor/estatística & dados numéricos , Prestação Integrada de Cuidados de Saúde/organização & administração , Crianças com Deficiência/estatística & dados numéricos , Seguro Saúde/estatística & dados numéricos , Avaliação das Necessidades , Pais/psicologia , Qualidade da Assistência à Saúde , Adolescente , Criança , Serviços de Saúde da Criança/organização & administração , Pré-Escolar , Estudos Transversais , Feminino , Florida , Pesquisas sobre Atenção à Saúde , Necessidades e Demandas de Serviços de Saúde , Humanos , Lactente , Masculino , Medicaid , Fatores Socioeconômicos , Estados Unidos , Adulto Jovem
8.
J Pediatr Nurs ; 27(5): 500-7, 2012 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-22920661

RESUMO

We describe the racial and ethnic variation in family impact resulting from caring for a child with a life-threatening illness. Parents of children aged 2-21 years diagnosed with a potentially life-threatening illness and enrolled in Florida's Medicaid and Children's Medical Services Network programs were surveyed. Two hundred sixty-six telephone surveys were conducted in English and Spanish between November 2007 and April 2008. In adjusted models, compared with Whites, Latinos reported that their child's illness resulted in a greater negative impact on the family. Continued study of this group of parents is critical to developing culturally appropriate interventions to reduce strain and burden and improve the quality of life for families.


Assuntos
Negro ou Afro-Americano/psicologia , Cuidadores/psicologia , Crianças com Deficiência , Hispânico ou Latino/psicologia , População Branca/psicologia , Adolescente , Adulto , Negro ou Afro-Americano/estatística & dados numéricos , Criança , Pré-Escolar , Demografia , Feminino , Florida , Hispânico ou Latino/estatística & dados numéricos , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Análise de Regressão , Inquéritos e Questionários , População Branca/estatística & dados numéricos , Adulto Jovem
9.
Ann Am Thorac Soc ; 19(2): 303-314, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34384042

RESUMO

Smoking burdens are greatest among underserved patients. Lung cancer screening (LCS) reduces mortality among individuals at risk for smoking-associated lung cancer. Although LCS programs must offer smoking cessation support, the interventions that best promote cessation among underserved patients in this setting are unknown. This stakeholder-engaged, pragmatic randomized clinical trial will compare the effectiveness of four interventions promoting smoking cessation among underserved patients referred for LCS. By using an additive study design, all four arms provide standard "ask-advise-refer" care. Arm 2 adds free or subsidized pharmacologic cessation aids, arm 3 adds financial incentives up to $600 for cessation, and arm 4 adds a mobile device-delivered episodic future thinking tool to promote attention to long-term health goals. We hypothesize that smoking abstinence rates will be higher with the addition of each intervention when compared with arm 1. We will enroll 3,200 adults with LCS orders at four U.S. health systems. Eligible patients include those who smoke at least one cigarette daily and self-identify as a member of an underserved group (i.e., is Black or Latinx, is a rural resident, completed a high school education or less, and/or has a household income <200% of the federal poverty line). The primary outcome is biochemically confirmed smoking abstinence sustained through 6 months. Secondary outcomes include abstinence sustained through 12 months, other smoking-related clinical outcomes, and patient-reported outcomes. This pragmatic randomized clinical trial will identify the most effective smoking cessation strategies that LCS programs can implement to reduce smoking burdens affecting underserved populations. Clinical trial registered with clinicaltrials.gov (NCT04798664). Date of registration: March 12, 2021. Date of trial launch: May 17, 2021.


Assuntos
Neoplasias Pulmonares , Abandono do Hábito de Fumar , Adulto , Detecção Precoce de Câncer/métodos , Humanos , Neoplasias Pulmonares/diagnóstico , Neoplasias Pulmonares/prevenção & controle , Ensaios Clínicos Controlados Aleatórios como Assunto , Fumar , Abandono do Hábito de Fumar/métodos , Populações Vulneráveis
10.
Pediatr Blood Cancer ; 56(5): 805-11, 2011 May.
Artigo em Inglês | MEDLINE | ID: mdl-21370415

RESUMO

OBJECTIVES: For children with life-threatening illnesses we sought to (1) understand the associations between parental characteristics and preferred health information sources, and (2) assess the e-health literacy of Internet-users. STUDY DESIGN: Cross-sectional, telephone survey of 129 parents whose children are in a pediatric palliative care program in Florida. RESULTS: Four out of five parents report that they use the Internet, and 64% of Internet-users use it daily. Parents who never use the Internet, versus parents who do use the Internet, are predominately Hispanic (50%) and have less than a high school education (64%) (P ≤ 0.023). Internet-users have high levels of e-health literacy; however, they are not confident or are unsure about the quality of information on the Internet. Not having graduated from high school was associated with a decrease in e-health literacy and using the Internet as the primary information source (vs. doctor as primary source) was associated with an increase in e-health literacy. CONCLUSION: Parents of children with life-threatening illnesses have access to and use the Internet as a source of information about their children's health. More information is needed to explore how electronic-based interventions could be used to impact information seeking of parents whose children are in pediatric palliative care programs.


Assuntos
Estado Terminal/psicologia , Comportamento de Busca de Informação , Internet/estatística & dados numéricos , Cuidados Paliativos , Pais/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Estudos Transversais , Feminino , Educação em Saúde , Humanos , Lactente , Masculino , Prognóstico , Adulto Jovem
11.
Matern Child Health J ; 15(2): 217-24, 2011 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-20213491

RESUMO

To investigate the information sources, and the perceived helpfulness of each source, that parents used when choosing a health plan for their children with special health care needs (CSHCN) and to determine how parents' perceptions varied by their sociodemographic characteristics and their children's enrollment status (newly versus previously enrolled). In Florida, a cross sectional study was carried out using 2007 telephone survey data from 500 parents. Sixty-three percent of parents used at least one information source to choose a health plan for their CSHCN. More parents used the Help Line, yet more parents found it to be the least helpful resource. Multivariate analyses suggest that Hispanic parents were 79% more likely and parents of prior enrollees were 1.2 times less likely to use one of the four information sources versus their referent groups. African American parents were 85% more likely and parents residing in Broward County were 55% less likely to indicate that the process was easy versus their referent groups. Hispanic parents were 77% more likely, African American parents were 67% more likely and college graduates were 59% less likely to report that the information they received was adequate versus their referent groups. The results did not highlight one source of information as more useful and helpful. Race and ethnicity seemed to have the most systematic effect on the parents' experiences in choosing a health plan for their CSHCN, highlighting the need for further research to ensure that information is appropriate across subgroups.


Assuntos
Comportamento de Escolha , Participação da Comunidade , Crianças com Deficiência , Seguro Saúde/estatística & dados numéricos , Medicaid , Criança , Serviços de Saúde da Criança/organização & administração , Estudos Transversais , Tomada de Decisões , Florida , Necessidades e Demandas de Serviços de Saúde , Humanos , Disseminação de Informação , Comportamento de Busca de Informação , Pais , Fatores Socioeconômicos , Inquéritos e Questionários , Estados Unidos
12.
J Med Internet Res ; 13(3): e75, 2011 Sep 29.
Artigo em Inglês | MEDLINE | ID: mdl-21960017

RESUMO

BACKGROUND: The Internet has revolutionized the way in which many Americans search for health care information. Unfortunately, being able to use the Internet for this purpose is predicated on having access to the Internet and being able to understand and comprehend online health information. This is especially important for parents of children with special health care needs who are forced to make many medical decisions throughout the lives of their children. Yet, no information is available about this vulnerable group. OBJECTIVE: For parents of children with special health care needs we sought to (1) describe their Internet access and use, (2) determine which child and household factors were associated with Internet use, (3) describe eHealth literacy of Internet users, and (4) determine which child and household factors were associated with greater eHealth literacy. METHODS: This was a cross-sectional telephone survey of 2371 parents whose children with special health care needs were enrolled in Florida's Medicaid and State Children's Health Insurance Plan (SCHIP) programs (4072 parents were approached). To be enrolled in the program, families must have incomes that are less than or equal to 200% of the federal poverty level. The eHealth Literacy Scale (eHEALS) was used to measure eHealth literacy. Descriptive and multivariate analyses were conducted to address the study objectives. RESULTS: The survey response rate was 58.2%. Participating parents were mainly female (2154/2371, 91%), white non-Hispanic (915/2371, 39%), English speaking (1827/2371, 77%), high school graduates (721/2371, 30%), married (1252/2371, 53%), and living in a two-parent household (1212/2371, 51%). Additionally, 82% of parents (1945/2371) in the sample reported that they used the Internet, and 49% of those parents used it daily (1158/2371). Almost three-quarters of Internet users had access to the Internet at home while about one-half had access at work. Parents who were African American, non-English speaking, older, and not college graduates were less likely to use the Internet than their referent groups (P < .001). About 74% of Internet users (1448/1945) reported that they knew how to find health information for their children. However, only about one-half (1030/1945) reported that they can tell high quality from low quality resources online or that they feel confident in using information accessed online to make health decisions. Multivariate regression results consistently showed that being a non-English speaker, having less than a high school education, and being older were all significantly associated with lower eHealth literacy (all P < .001). CONCLUSION: Low-income parents of children with special health care needs have access to and use the Internet as a source of information about their children's health. However, some parents are unable to distinguish between high and low quality information and are not confident in using the Internet. This information is timely because as the pressure to use the Internet to empower consumers and exchange information increases, issues related to access and disparities must be better understood.


Assuntos
Alfabetização Digital , Crianças com Deficiência/estatística & dados numéricos , Educação em Saúde/métodos , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Pobreza , Adulto , Distribuição por Idade , Criança , Serviços de Saúde da Criança/organização & administração , Doença Crônica/epidemiologia , Estudos Transversais , Etnicidade/estatística & dados numéricos , Feminino , Florida/epidemiologia , Humanos , Masculino , Fatores Socioeconômicos , Adulto Jovem
13.
Pediatr Nurs ; 37(3): 121-6, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-21739743

RESUMO

Several studies have investigated nurses' attitudes toward hospice and palliative care for adults, yet little information exists about pediatrics. Assessing pediatric nurses' attitudes is especially important in Florida, where a publicly funded pediatric palliative care program operates in eight cities across the State. The aims of this study were 1) to assess the attitudes toward hospice and palliative care, and 2) to examine the associations between sociodemographic and nursing care factors and nurses' attitudes toward hospice and palliative care. A cross-sectional research design using online and mail-in survey data was used to address the study aims. Surveys were conducted with 279 pediatric nurses across Florida. Bivariate results showed there were significant differences between the attitudes of pediatric nurses employed in a city with a pediatric palliative care program versus those not employed in a program site (p = 0.05). Multivariate analyses also showed that being employed in a program site increased attitudinal scores toward hospice and pediatric palliative care by 0.6 points. Beyond being employed in an area city where a pediatric palliative care program operates, results also suggest that having prior training in palliative care could alter nurses' attitudes, which might subsequently lead to increased referrals and improved outcomes for children and families.


Assuntos
Atitude do Pessoal de Saúde , Hospitais para Doentes Terminais , Enfermeiras e Enfermeiros/psicologia , Cuidados Paliativos , Enfermagem Pediátrica , Adulto , Criança , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Adulto Jovem
14.
Palliat Med ; 24(3): 340-7, 2010 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-20123943

RESUMO

National experts have recognized a need for increased research in pediatric palliative care. However, when conducting research it is important to use rigorous methods, report significant and non-significant findings, and include information on responders and non-responders. Most studies do not present information on non-responders, yet this is critical as the results many not be generalizable if there are inherent differences between the two groups. Using survey data from parents whose children with life-limiting illnesses were enrolled in Florida's publicly funded pediatric palliative care program called Partners in Care: Together for Kids; this study investigates whether non-response bias exists, and if so, what characteristics are associated with non-response. Bivariate and multivariate analyses were conducted to determine whether individual characteristics differed between responders and non-responders. Throughout our analyses, we conducted the analyses using different ways in which 'non-response' can be defined. Our results suggest that regardless of how non-response is defined, Black, non-Hispanic parents were less likely to participate than White non-Hispanic parents. However, we also found that of the Black, non-Hispanic parents who did not participate, their primary reason for doing so was that they had non-working or disconnected phone numbers. Only 3% of the Black, non-Hispanic parents who did not participate flatly refused. Information from this study can be used to design interventions aimed at increasing minority participation in pediatric palliative care research.


Assuntos
Viés , Pesquisas sobre Atenção à Saúde/estatística & dados numéricos , Grupos Minoritários , Cuidados Paliativos , Recusa de Participação , Adolescente , População Negra , Criança , Pré-Escolar , Feminino , Financiamento Governamental , Florida , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Hispânico ou Latino , Humanos , Lactente , Masculino , Pais/psicologia , Pediatria , Recusa de Participação/etnologia , Recusa de Participação/estatística & dados numéricos , Projetos de Pesquisa , Telefone/provisão & distribuição , Adulto Jovem
15.
Palliat Med ; 24(2): 175-82, 2010 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-20007819

RESUMO

Annually, about 500,000 children are coping with life-limiting illnesses in the USA. Integrated pediatric palliative care program could benefit some of these children by improving their health-related quality of life (HRQOL). To measure the effect of pediatric palliative care programs on HRQOL, a valid and reliable tool must be identified. This study aimed to validate the psychometric properties of a generic HRQOL instrument, the Pediatric Quality of Life 4.0, for children with life-limiting illnesses. Analyses were conducted using telephone survey data collected from 266 parents whose Medicaid-enrolled children had life-limiting illnesses. Results of the analyses suggest the Pediatric Quality of Life 4.0 does not have valid psychometric properties for measuring HRQOL within this population. Our study documents several challenges in using the generic instrument to measure HRQOL in pediatric palliative care setting. We point out future directions to refine or develop HRQOL instruments for this population of vulnerable children.


Assuntos
Cuidados Paliativos/normas , Pediatria/normas , Psicometria/instrumentação , Garantia da Qualidade dos Cuidados de Saúde/normas , Qualidade de Vida , Adolescente , Criança , Pré-Escolar , Feminino , Nível de Saúde , Humanos , Masculino , Cuidados Paliativos/psicologia , Pais/psicologia , Psicometria/métodos , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Estados Unidos
16.
Matern Child Health J ; 14(5): 742-750, 2010 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-19644743

RESUMO

Partnering between families and their children's providers is a cornerstone of family-centered care. This study aimed to identify factors associated with family-provider partnership and determine the association between partnership and other outcome measures for children with special health care needs (CSHCN). Descriptive, bivariate, and multivariate analyses were conducted using data from the 2005-2006 National Survey of Children with Special Health Care Needs. Multivariate models showed that CSHCN who are White non-Hispanic, younger than 12, reside in households with incomes above 400% of the federal poverty level, and have a usual source of care were associated with family-provider partnership. Multivariate models showed that family-provider partnership was significantly associated with adequate insurance, early and continual screening, organized health care services, and transition preparedness. Family-provider partnership was associated with 20% fewer emergency department visits and 9% fewer school days missed. This study suggests that policies aimed at promoting family-provider partnership could increase health outcomes for CSHCN.


Assuntos
Serviços de Saúde da Criança/estatística & dados numéricos , Crianças com Deficiência/estatística & dados numéricos , Relações Médico-Paciente , Relações Profissional-Família , Adolescente , Criança , Pré-Escolar , Tomada de Decisões , Características da Família , Feminino , Pesquisas sobre Atenção à Saúde , Acessibilidade aos Serviços de Saúde , Humanos , Lactente , Recém-Nascido , Cobertura do Seguro , Masculino , Fatores Socioeconômicos , Estados Unidos
17.
Int J Palliat Nurs ; 16(11): 542-7, 2010 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-21135787

RESUMO

UNLABELLED: Palliative care programmes have the potential to affect several health outcomes for children and families, including reducing decisional conflict. METHOD: A telephone survey was conducted with 140 parents of children with life-limiting illnesses enrolled in Florida's publicly funded paediatric palliative care programme (Partners in Care: Together for Kids). RESULTS: Multivariate results suggest that parents with less than a high school education had decisional conflict scores (DCS) that were 13 points higher (p<0.05) than parents with some college education. In addition, parents who indicated that they had recently made a decision for their children had DCS scores that were 7 points higher (p<0.05) than parents who indicated they had not. DISCUSSION: Our findings suggest that paediatric palliative care programmes should treat parents with lower educational levels as being particularly vulnerable and should consider allocating additional resources to them when a decision for their children is imminent.


Assuntos
Conflito Psicológico , Tomada de Decisões , Avaliação das Necessidades , Cuidados Paliativos , Pais , Apoio Social , Adolescente , Adulto , Criança , Pré-Escolar , Escolaridade , Feminino , Florida , Humanos , Lactente , Masculino , Medicaid , Pessoa de Meia-Idade , Análise Multivariada , Estados Unidos , Adulto Jovem
18.
J Am Geriatr Soc ; 68(10): 2365-2372, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32748393

RESUMO

BACKGROUND/OBJECTIVES: Specialty palliative care for hospitalized patients with dementia is widely recommended and may improve outcomes, yet rates of consultation remain low. We sought to describe hospitalists' decision-making regarding palliative care consultation for patients with dementia. DESIGN: Descriptive qualitative study. SETTING: Seven hospitals within a national nonprofit health system. PARTICIPANTS: Hospitalist physicians. MEASUREMENTS: Individual semistructured interviews. We used thematic analysis to explore factors that influence hospitalists' decision to consult palliative care for patients with dementia. RESULTS: A total of 171 hospitalists were eligible to participate, and 28 (16%) were interviewed; 17 (61%) were male, 16 (57%) were white, and 18 (64%) were in practice less than 10 years. Overall, hospitalists' decisions to consult palliative care for patients with dementia were influenced by multiple factors across four themes: patient, family caregiver, hospitalist, and organization. Consultation was typically only considered for patients with advanced disease, particularly those receiving aggressive care or with family communication needs (navigating conflicts around goals of care and improving disease and prognostic understanding). Hospitalists' limited time and, for some, a lack of confidence in palliative care skills were strong drivers of consultation. Palliative care needs notwithstanding, most hospitalists would not request consultation if they perceived families would be resistant to it or had limited availability or involvement in caregiving. Additional barriers to referral at the organization level included a hospital culture that conflated palliative and end-of-life care and busy palliative care teams at some hospitals. CONCLUSION: Hospitalists described a complex consultation decision process for involving palliative care specialists in the care of patients with dementia. Systematic identification of hospitalized patients with dementia most likely to benefit from palliative care consultation and strategies to overcome modifiable family and organization barriers are needed. J Am Geriatr Soc 68:2365-2372, 2020.


Assuntos
Atitude do Pessoal de Saúde , Demência , Médicos Hospitalares/psicologia , Cuidados Paliativos/psicologia , Encaminhamento e Consulta , Adulto , Tomada de Decisão Clínica , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
19.
Med Decis Making ; 40(5): 633-643, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32532169

RESUMO

Background. Patients may find clinical prediction models more useful if those models accounted for preferences for false-positive and false-negative predictive errors and for other model characteristics. Methods. We conducted a discrete choice experiment to compare preferences for characteristics of a hypothetical mortality prediction model among community-dwelling patients with chronic lung disease recruited from 3 clinics in Philadelphia. This design was chosen to allow us to quantify "exchange rates" between different characteristics of a prediction model. We provided previously validated educational modules to explain model attributes of sensitivity, specificity, confidence intervals (CI), and time horizons. Patients reported their interest in using prediction models themselves or having their physicians use them. Patients then chose between 2 hypothetical prediction models each containing varying levels of the 4 attributes across 12 tasks. Results. We completed interviews with 200 patients, among whom 95% correctly chose a strictly dominant model in an internal validity check. Patients' interest in predictive information was high for use by themselves (n = 169, 85%) and by their physicians (n = 184, 92%). Interest in maximizing sensitivity and specificity were similar (0.88 percentage points of specificity equivalent to 1 point of sensitivity, 95% CI 0.72 to 1.05). Patients were willing to accept a reduction of 6.10 months (95% CI 3.66 to 8.54) in the predictive time horizon for a 1% increase in specificity. Discussion. Patients with chronic lung disease can articulate their preferences for the characteristics of hypothetical mortality prediction models and are highly interested in using such models as part of their care. Just as clinical care should become more patient centered, so should the characteristics of predictive models used to guide that care.


Assuntos
Comportamento de Escolha , Comportamento do Consumidor , Doenças Respiratórias/psicologia , Adulto , Doença Crônica/psicologia , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Doenças Respiratórias/complicações , Inquéritos e Questionários
20.
J Palliat Care ; 25(2): 132-6, 2009.
Artigo em Inglês | MEDLINE | ID: mdl-19678466

RESUMO

Over the past three decades, pediatric palliative care programs have been developed and refined throughout the world. The purpose of this study was to provide information on experiences from four of those programs, yet we acknowledge that there are many other innovative programs that deserve recognition for the services they provide to children and families. This study is limited in that it is unable to compare outcomes from the four programs, such as patient-reported quality of life, that might help to better understand the impact of pediatric palliative care. Nonetheless, information sharing can inspire and educate others with the overarching goal of globally advancing pediatric palliative care.


Assuntos
Serviços de Saúde da Criança/organização & administração , Cuidados Paliativos/métodos , Cuidados Paliativos/organização & administração , Austrália , Criança , Hospitais para Doentes Terminais , Hospitais Pediátricos , Humanos , África do Sul , Reino Unido , Estados Unidos
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