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Background: Historically, many organs from deceased donors with hepatitis C virus (HCV) were discarded. The advent of highly curative direct-acting antiviral (DAA) therapies motivated transplant centers to conduct trials of transplanting HCV-viremic organs (nucleic acid amplification test positive) into HCV-negative recipients, followed by DAA treatment. However, the factors that influence candidates' decisions regarding acceptance of transplant with HCV-viremic organs are not well understood. Methods: To explore patient-level perceptions, influences, and experiences that inform candidate decision-making regarding transplant with organs from HCV-viremic donors, we conducted a qualitative semistructured interview study embedded within 3 clinical trials investigating the safety and efficacy of transplanting lungs and kidneys from HCV-viremic donors into HCV-negative recipients. The study was conducted from June 2019 to March 2021. Results: Among 44 HCV-negative patients listed for organ transplant who were approached for enrollment in the applicable clinical trial, 3 approaches to decision-making emerged: positivist, risk analyses, and instinctual response. Perceptions of risk contributed to conceptualizations of factors influencing decisions. Moreover, most participants relied on multiple decision-making approaches, either simultaneously or sequentially. Conclusions: Understanding how different decisional models influence patients' choices regarding transplant with organs from HCV-viremic donors may promote shared decision-making among transplant patients and providers.
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OBJECTIVES: We developed a tool, Serial Neurologic Assessment in Pediatrics, to screen for neurologic changes in patients, including those who are intubated, are sedated, and/or have developmental disabilities. Our aims were to: 1) determine protocol adherence when performing Serial Neurologic Assessment in Pediatrics, 2) determine the interrater reliability between nurses, and 3) assess the feasibility and acceptability of using Serial Neurologic Assessment in Pediatrics compared with the Glasgow Coma Scale. DESIGN: Mixed-methods, observational cohort. SETTING: Pediatric and neonatal ICUs. SUBJECTS: Critical care nurses and patients. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Serial Neurologic Assessment in Pediatrics assesses Mental Status, Cranial Nerves, Communication, and Motor Function, with scales for children less than 6 months, greater than or equal to 6 months to less than 2 years, and greater than or equal to 2 years old. We assessed protocol adherence with standardized observations. We assessed the interrater reliability of independent Serial Neurologic Assessment in Pediatrics assessments between pairs of trained nurses by percent- and bias- adjusted kappa and percent agreement. Semistructured interviews with nurses evaluated acceptability and feasibility after nurses used Serial Neurologic Assessment in Pediatrics concurrently with Glasgow Coma Scale during routine care. Ninety-eight percent of nurses (43/44) had 100% protocol adherence on the standardized checklist. Forty-three nurses performed 387 paired Serial Neurologic Assessment in Pediatrics assessments (149 < 6 mo; 91 ≥ 6 mo to < 2 yr, and 147 ≥ 2 yr) on 299 patients. Interrater reliability was substantial to near-perfect across all components for each age-based Serial Neurologic Assessment in Pediatrics scale. Percent agreement was independent of developmental disabilities for all Serial Neurologic Assessment in Pediatrics components except Mental Status and lower extremity Motor Function for patients deemed "Able to Participate" with the assessment. Nurses reported that they felt Serial Neurologic Assessment in Pediatrics, compared with Glasgow Coma Scale, was easier to use and clearer in describing the neurologic status of patients who were intubated, were sedated, and/or had developmental disabilities. About 92% of nurses preferred to use Serial Neurologic Assessment in Pediatrics over Glasgow Coma Scale. CONCLUSIONS: When used by critical care nurses, Serial Neurologic Assessment in Pediatrics has excellent protocol adherence, substantial to near-perfect interrater reliability, and is feasible to implement. Further work will determine the sensitivity and specificity for detecting clinically meaningful neurologic decline.
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Estado Terminal , Pediatria , Criança , Escala de Coma de Glasgow , Humanos , Recém-Nascido , Exame Neurológico , Reprodutibilidade dos TestesRESUMO
OBJECTIVE: We sought to elicit patients', caregivers', and health care providers' perceptions of home recovery to inform care personalization in the learning health system. SUMMARY BACKGROUND DATA: Postsurgical care has shifted from the hospital into the home. Daily care responsibilities fall to patients and their caregivers, yet stakeholder concerns in these heterogeneous environments, especially as they relate to racial inequities, are poorly understood. METHODS: Surgical oncology patients, caregivers, and clinicians participated in freelisting; an open-ended interviewing technique used to identify essential elements of a domain. Within 2 weeks after discharge, participants were queried on 5 domains: home independence, social support, pain control, immediate, and overall surgical impact. Salience indices, measures of the most important words of interest, were calculated using Anthropac by domain and group. RESULTS: Forty patients [20 whites and 20 African-Americans (AAs)], 30 caregivers (17 whites and 13 AAs), and 20 providers (8 residents, 4 nurses, 4 nurse practitioners, and 4 attending surgeons) were interviewed. Patients and caregivers attended to the personal recovery experience, whereas providers described activities and individuals associated with recovery. All groups defined surgery as life-changing, with providers and caregivers discussing financial and mortality concerns. Patients shared similar thoughts about social support and self-care ability by race, whereas AA patients described heterogeneous pain management and more hopeful recovery perceptions. AA caregivers expressed more positive responses than white caregivers. CONCLUSIONS: Patients live the day-to-day of recovery, whereas caregivers and clinicians also contemplate more expansive concerns. Incorporating relevant perceptions into traditional clinical outcomes and concepts could enhance the surgical experience for all stakeholders.
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Assistência ao Convalescente/métodos , Cuidadores/psicologia , Alta do Paciente/tendências , Pacientes/psicologia , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Apoio Social , Inquéritos e Questionários , Adulto JovemRESUMO
PURPOSE: New oncology care delivery models that avoid preventable acute care are needed, yet it is unclear which interventions best meet the needs of patients and caregivers. Perspectives from patients who experienced unplanned acute care events may inform the successful development and implementation of care delivery models. METHODS: We performed a qualitative interview study of patients with solid tumors on active treatment who experienced the following 3 types of unplanned acute care events: emergency department visits, first hospitalizations, and multiple hospitalizations. Patients were prospectively recruited within a large academic health system from August 2018 to January 2019. Interviews followed a semi-structured guide developed from the Consolidated Framework for Implementation Research. The constant comparative approach was used to identify themes. RESULTS: Forty-nine patients were interviewed; 51% were men, 75% were non-Hispanic White, and the mean age was 57.4 years (standard deviation, 1.9 years). Fifty-five percent of patients had metastatic disease, and 33% had an Eastern Cooperative Oncology Group performance status of 3-4. We identified the following key themes: drivers of the decision to seek acute care, patients' emotional concerns that influence interactions with the oncology team, and strategies used to avoid acute care. Patients' recommendations for interventions included anticipatory guidance, peer support, improved triage methods, and enhanced symptom management. Patients preferred options for virtual and home-based outpatient care. CONCLUSION: Patient-centered care models should focus on early delivery of supportive interventions that help patients and caregivers navigate the unexpected issues that come with cancer treatment. Patients advocate for proactive, multidisciplinary supportive interventions that enable home-based care and are led by the primary oncology team.
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Neoplasias , Serviço Hospitalar de Emergência , Humanos , Masculino , Oncologia , Pessoa de Meia-Idade , Neoplasias/terapia , Cuidados Paliativos , Aceitação pelo Paciente de Cuidados de SaúdeRESUMO
OBJECTIVE: To assess the effectiveness of standardizing operating room (OR) to intensive care unit (ICU) handoffs in a mixed surgical population. SUMMARY OF BACKGROUND DATA: Standardizing OR to ICU handoffs improves information transfer after cardiac surgery, but there is limited evidence in other surgical contexts. METHODS: This prospective interventional cohort study (NCT02267174) was conducted in 2 surgical ICUs in 2 affiliated hospitals. From 2014 to 2016, we developed, implemented, and assessed the effectiveness of a new standardized handoff protocol requiring bedside clinician communication using an information template. The primary study outcome was number of information omissions out of 13 possible topics, recorded by trained observers. Data were analyzed using descriptive statistics, bivariate analyses, and multivariable regression. RESULTS: We observed 165 patient transfers (68 pre-, 97 postintervention). Before standardization, observed handoffs had a mean 4.7â±â2.9 information omissions each. After standardization, information omissions decreased 21.3% to 3.7â±â1.9 (P = 0.023). In a pre-specified subanalysis, information omissions for new ICU patients decreased 36.2% from 4.7â±â3.1 to 3.0â±â1.6 (P = 0.008, interaction term P = 0.008). The decrement in information omissions was linearly associated with the number of protocol steps followed (P < 0.001). After controlling for patient stability, the intervention was still associated with reduced omissions. Handoff duration increased after standardization from 4.1â±â3.3 to 8.0â±â3.9âminutes (P < 0.001). ICU mortality and length of stay did not change postimplementation. CONCLUSION: Standardizing OR to ICU handoffs significantly improved information exchange in 2 mixed surgical ICUs, with a concomitant increase in handoff duration. Additional research is needed to identify barriers to and facilitators of handoff protocol adherence.
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Cuidados Críticos/normas , Unidades de Terapia Intensiva/normas , Comunicação Interdisciplinar , Salas Cirúrgicas/normas , Transferência da Responsabilidade pelo Paciente/normas , Transferência de Pacientes/normas , Teoria Fundamentada , Humanos , Pennsylvania , Período Pós-Operatório , Estudos Prospectivos , Pesquisa Qualitativa , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: Our study completes the development and estimates the psychometric properties of a novel, ventral hernia-specific patient reported outcomes (PRO) tool-the Abdominal Hernia-Q (AHQ). SUMMARY BACKGROUND DATA: A standardized method for measuring hernia-related PRO has not been identified. There remains a need for a broadly applicable, hernia-specific tool that incorporates patient viewpoints and offers pre- and postoperative forms. METHODS: Concept elicitation interviews, focus groups, and cognitive debriefing interviews were completed to define content. The preoperative AHQ was administered to patients scheduled to have a ventral hernia repair (VHR). The postoperative AHQ was administered to patients within 24 months post-VHR. The SF-12 and HerQLes were concurrently administered. Psychometric evaluation was performed. Subsequently, the AHQ (pre: 8 items; post: 16 items) underwent prospective testing. RESULTS: Cross-sectional evaluations of patient responses to the AHQ (pre n = 104; post n = 261) demonstrated high internal consistency (Cronbach α pre = 0.86; post = 0.90) and moderate disattenuated correlations with the HerQLes (pre râ=â-0.71 and post râ=â-0.70) and the SF-12 domains (pre and post râ≥â0.5 for 7 of 8 domains). Principal components analyses produced 2 factors preoperatively and 3 factors postoperatively. In prospective testing (n = 67), the AHQ scores replicated the cross-sectional psychometric results and suggested sensitivity to clinical outcomes. CONCLUSIONS: Through patient involvement and rigorous, iterative psychometric evaluation, we have produced substantial data to suggest the validity and reliability of AHQ scores in measuring hernia-specific PRO. The AHQ advances the clinical management and treatment of patients with abdominal hernias by providing a more complete understanding of patient-defined outcomes.
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Hérnia Ventral/cirurgia , Medidas de Resultados Relatados pelo Paciente , Psicometria/métodos , Adulto , Idoso , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pennsylvania , Análise de Componente Principal , Reprodutibilidade dos TestesRESUMO
BACKGROUND: Indigenous persons living in Latin America suffer from a higher prevalence of type 2 diabetes compared to their non-indigenous counterparts. This difference has been attributed to a wide range of factors. Future interventions could be influenced by a deeper understanding of the challenges that impact care in rural regions and in other low-income settings. METHODS: This study was conducted using a modified grounded theory approach. Extended observations and fifteen interviews were performed with adult male and female residents of three rural Mayan towns in Sololá Department, Guatemala using purposive sampling. Questions focused on the perceptions of individuals living with type 2 diabetes and their caregivers regarding disease and treatment. RESULTS: Across interviews the most common themes that emerged included mistreatment by healthcare providers, mental health comorbidity, and medication affordability. These perceptions were in part influenced by indigeneity, poverty, and/or gender. CONCLUSIONS: Both structural and cultural barriers continue to impact diabetes care for indigenous communities in rural Guatemala. The interviews in this study suggest that indigenous people experience mistrust in the health care system, unreliable access to care, and mental health comorbidity in the context of type 2 diabetes care. These experiences are shaped by the complex relationship among poverty, gender, and indigeneity in this region. Targeted interventions that are conscious of these factors may increase their chances of success when attempting to address similar health disparities in comparable populations.
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Diabetes Mellitus Tipo 2/terapia , Acessibilidade aos Serviços de Saúde , Grupos Populacionais/psicologia , População Rural , Adulto , Idoso , Feminino , Guatemala , Humanos , Masculino , Pessoa de Meia-Idade , Observação , Grupos Populacionais/estatística & dados numéricos , Pobreza , Pesquisa Qualitativa , População Rural/estatística & dados numéricos , Adulto JovemRESUMO
PURPOSE: AYAs with KTs experience high rates of premature allograft loss during the HCT. There is a critical need to identify protective factors associated with stable HCT. Resilience-the ability to adapt and thrive in the setting of adversity-has known positive impact on health outcomes. This study explored the novel role of resilience constructs as protective factors in securing stable HCT among AYA with KT. METHODS: We conducted semi-structured interviews of adolescents and young adults who transitioned from a single pediatric transplant center to multiple adult nephrology centers between 2010 and 2017. Interviews explored the role of key resilience constructs in participants' lives around the time of HCT. Participants were stratified into stable or unstable HCT groups based on biological markers of allograft function and clinical data from chart review. Content analyses of interview transcripts were reviewed and compared among HCT groups. RESULTS: Thirty-two participants enrolled (17 stable; 15 unstable). Key resilience constructs more salient in the stable versus unstable HCT group were confidence in and connection to one's healthcare team. Reports of healthcare self-management competencies were similar across both HCT groups. CONCLUSIONS: Confidence in and connection to one's healthcare team appear to be linked with a stable HCT among AYA with KT. This suggests that interdependence, the ability to foster connections with and elicit support from healthcare providers, as opposed to complete independence or autonomy, which is often advised in the HCT process, is a critical component of resilience linked to stable HCT.
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Transplante de Rim , Resiliência Psicológica , Transição para Assistência do Adulto , Transplantados , Adolescente , Adulto , Aloenxertos , Comunicação , Continuidade da Assistência ao Paciente , Feminino , Humanos , Masculino , Nefrologia/organização & administração , Avaliação de Resultados em Cuidados de Saúde , Relações Médico-Paciente , Pesquisa Qualitativa , Classe Social , Adulto JovemRESUMO
OBJECTIVE: This qualitative study examines surgical consultation as a social process and assesses its alignment with assumptions of the shared decision-making (SDM) model. SUMMARY OF BACKGROUND DATA: SDM stresses the importance of patient preferences and rigorous discussion of therapeutic risks/benefits based on these preferences. However, empirical studies have highlighted discrepancies between SDM and realities of surgical decision making. Qualitative research can inform understanding of the decision-making process and allow for granular assessment of the nature and causes of these discrepancies. METHODS: We observed consultations between 3 general surgeons and 45 patients considering undergoing 1 of 2 preference-sensitive elective operations: (1) hernia repair, or (2) cholecystectomy. These patients and surgeons also participated in semi-structured interviews. RESULTS: By the time of the consultation, patients and surgeons were predisposed toward certain decisions by preceding events occurring elsewhere. During the visit, surgeons had differential ability to arbitrate surgical intervention and construct the severity of patients' conditions. These upstream dynamics frequently displaced the centrality of the risk/benefit-based consent discussion. CONCLUSION: The influence of events preceding consultation suggests that decision-making models should account for broader spatiotemporal spans. Given surgeons' authority to define patients' conditions and control service provision, SDM may be premised on an overestimation of patients' power to alter the course of decision making once in a specialist's office. Considering the subordinate role of the risk/benefit discussion in many surgical decisions, it will be important to study if and how the social process of decision making is altered by SDM-oriented decision aids that foreground this discussion.
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Tomada de Decisão Compartilhada , Cirurgia Geral , Participação do Paciente/psicologia , Relações Médico-Paciente , Encaminhamento e Consulta , Comportamento Social , Cirurgiões/psicologia , Adulto , Idoso , Colecistectomia/métodos , Colecistectomia/psicologia , Procedimentos Cirúrgicos Eletivos/métodos , Procedimentos Cirúrgicos Eletivos/psicologia , Feminino , Herniorrafia/métodos , Herniorrafia/psicologia , Humanos , Consentimento Livre e Esclarecido/psicologia , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Modelos Teóricos , Preferência do Paciente , Pesquisa QualitativaRESUMO
Retinopathy of prematurity (ROP) is a largely avoidable cause of blindness in children worldwide, requiring high-quality neonatal care, early detection and treatment. In middle-income countries throughout Latin America, Eastern Europe and South Asia, there has been a rise in ROP blindness due to a combination of increased survival of preterm infants, resource-scarce medical environments and lack of policies, training and human resources. However, Argentina is an example of country where rates of ROP blindness have declined and ROP programmes have been successfully and effectively embedded within the health and legal system. The purpose of this study is to describe the activities and stakeholders, including Ministry of Health (MoH) and UNICEF, involved in the process, from recognition of an epidemic of ROP blindness to the development of national guidelines, policies and legislation for control. Using a retrospective mixed methods case study design, data on rates of severe ROP was collected from 13 neonatal intensive care units from 1999 to 2012, and on the proportion of children blind from ROP in nine blind schools in seven provinces. Legislative document review, focus group discussions and key informant interviews were conducted with neonatologists, ophthalmologists, neonatal nurses, parents, MoH officials, clinical societies, legislators and UNICEF officials in seven provinces. Results are presented combining the stages heuristic policy framework and Shiffman including: agenda setting, policy formulation, implementation and evaluation. By 2012, ROP had declined as a cause of blindness in children in schools for the blind as had rates of severe ROP needing treatment in the NICUs visited. Multiple factors played a role in reducing blindness from ROP in Argentina and successfully coordinating its control including national advocacy, leadership, legislation and international collaboration. Lessons learned in Argentina can potentially be scaled to other LMICs in Latin America and beyond with further context-specific research.
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Cegueira/prevenção & controle , Defesa da Criança e do Adolescente , Comportamento Cooperativo , Implementação de Plano de Saúde , Política de Saúde , Retinopatia da Prematuridade/epidemiologia , Argentina/epidemiologia , Grupos Focais , Humanos , Lactente , Recém-Nascido , Estudos RetrospectivosRESUMO
The purpose of this study was to explore perceptions among people with type 2 diabetes about foot ulcers and lower extremity amputations. This was a qualitative observational study utilizing open-ended, semistructured interviews of 39 people with diabetes who were purposively selected because they had either a foot ulcer (n = 19) or a lower extremity amputation (n = 20). Interviews were audio-recorded, deidentified, and entered into NVivo 10.0 for coding and analysis. Our integrated analytic approach combined inductively and deductively derived codes that were applied to all transcripts. Coded data were summarized and examined for patterns. Participants' description of the relationship between diabetes and their foot ulcer or amputation revealed a limited understanding of the disease process. Disruption and loss of independence was expressed whether the person had a foot ulcer or an amputation. Treatment recommendations for foot ulcers were viewed by most as extremely difficult. Amputation was a feared outcome, but some learned to adapt and, at times felt that the amputation enhanced their quality of life. Clinicians have assumed that a focus on limb salvage is preferred over a major amputation. However, because of the complexity of care requiring frequent healthcare provider visits, the frequency of care failure, the frequency of recurrence, and mortality associated with having had a foot ulcer, it may be more appropriate for clinicians to prioritize quality-of-life salvage. Foot ulcer treatment failure may be due to a lack of providers' understanding of the impact of treatment on a patient's life.
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Amputação Cirúrgica/estatística & dados numéricos , Diabetes Mellitus Tipo 2/complicações , Pé Diabético/cirurgia , Extremidade Inferior/cirurgia , Garantia da Qualidade dos Cuidados de Saúde , Qualidade de Vida , Cicatrização , Pé Diabético/epidemiologia , Pé Diabético/etiologia , Feminino , Humanos , Incidência , Salvamento de Membro , Masculino , Pessoa de Meia-Idade , Philadelphia/epidemiologia , Inquéritos e QuestionáriosRESUMO
Population health outcomes are directly related to robust public health programs, access to basic health services, and a well-trained health-care workforce. Effective health services need to systematically identify solutions, scientifically test these solutions, and share generated knowledge. The World Health Organization (WHO)'s Global Healthcare Workforce Alliance states that the capacity to perform research is an essential factor for well-functioning public health systems. Low- and middle-income countries have greater health-care worker shortages and lower research capacity than higher-income countries. International global health partnerships between higher-income countries and low-middle-income countries aim to directly address such inequalities through capacity building, a process by which human and institutional resources are strengthened and developed, allowing them to perform high-level functions, solve complex problems, and achieve important objectives. The Guatemala-Penn Partners (GPP) is a collaboration among academic centers in Guatemala and the University of Pennsylvania (Penn), in Philadelphia, Pennsylvania that echoes the vision of the WHO's Global Healthcare Workforce Alliance. This article describes the historical development and present organization of the GPP according to its three guiding principles: university-to-university connections, dual autonomies with locally led capacity building, and mutually beneficial exchanges. It describes the GPP activities within the domains of science, health-care education, and public health, emphasizing implementation factors, such as sustainability and scalability, in relation to the guiding principles. Successes and limitations of this innovative model are also analyzed in the hope that the lessons learned may be applied to similar partnerships across the globe.
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OBJECTIVE: To explore how characteristics of medical decisions influence parents' preferences for control over decisions for their seriously ill infants. STUDY DESIGN: In qualitative interviews, parents of infants in the neonatal intensive care unit (NICU) were asked to consider all medical decisions they could recall, and were prompted with decisions commonly encountered in the NICU. For each decision, parents were asked detailed questions about who made each decision, whom they would have preferred to make the decision, and why. Using standard qualitative methods, responses were coded and organized such that decision-level characteristics could be analyzed according to preferred decision-making role. RESULTS: Parents identified 2 factors that were associated with a preference to delegate decisions to the medical team (high degree of urgency, high level of required medical expertise) and 4 factors associated with a preference to retain parental control (high perceived risk, high personal experience with the decision, involvement of foreign bodily fluids, and similarity to decisions that they perceived as part of the normal parental role). CONCLUSIONS: Characteristics of decisions influence preferences for control over medical decisions among parents of patients in the NICU. These insights may guide improvements in physician-parent communication and consent.
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Tomada de Decisões , Terapia Intensiva Neonatal , Pais , Adulto , Feminino , Humanos , Recém-Nascido , Unidades de Terapia Intensiva Neonatal , Masculino , Modelos Teóricos , Preferência do Paciente , Adulto JovemRESUMO
BACKGROUND: The quality of life (QOL) of caregivers of patients with LVAD-DT (Left Ventricular Assist Device as Destination Therapy) has not been well explored. METHODS: We used a concurrent mixed methods design. Caregivers (n = 42; average 60 years old, 82% female, 75% white) of patients (n = 39; average 68.3 years old, 83% male, 90% white) and providers (n = 27) from 6 LVAD-DT programs were recruited. We used the City of Hope Quality of Life Family Caregiver instrument, modified for LVAD-DT. Lower scores indicate poorer QOL. We analyzed open-ended questions with the use of Nvivo 10.0, using a modified grounded theory approach. RESULTS: The Psychologic subscale had the lowest average QOL score, followed by Social, Spiritual, and then Physical subscales. The composite mean average QOL score across the subscales was highest in caregivers <40 years of age and ≥70 years of age. There was a nonsignificant trend toward better QOL in male caregivers (P = .06). We sorted QOL items into tertiles based on the percentage of responses <5 (10-point Likert scale). Scores <5 in the 2nd tertile (items from Social and Spiritual subscales) were reported by many fewer respondents than the 1st tertile (items from the Psychologic subscale). In the 3rd tertile, <10% of respondents scored <5 on 15 of the items. In qualitative interviews psychologic and social themes predominated in discussing requisites for competent caregivers, stress in pre-implantation decision making, lack of psychologic preparation, impact on freedom/independence, daily worry about pump performance, and value of psychologic and social support. CONCLUSION: Support interventions for caregivers of patients with LVAD-DT should address the psychologic and social aspects that lead to poor QOL.
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Cuidadores/psicologia , Insuficiência Cardíaca/psicologia , Insuficiência Cardíaca/terapia , Coração Auxiliar/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários , Adulto , Idoso , Cuidadores/tendências , Feminino , Insuficiência Cardíaca/epidemiologia , Ventrículos do Coração , Coração Auxiliar/tendências , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
OBJECTIVE: In preparation for the development of a curriculum on health care costs and value for pediatricians, the goal of this study was to assess pediatricians' baseline perceptions about the concepts of "cost" and "value" in health care, and topics that should be included in a curriculum that teaches about costs and value in pediatrics. METHODS: Physicians in the Department of Pediatrics at The Children's Hospital of Philadelphia received an online freelisting survey asking them to generate lists of words that come to mind when thinking about "costs" in health care, "value" in health care, and topics to include in a curriculum on costs and value in pediatrics. AnthroPac software generated salience scores, indicating the relative importance of each term. RESULTS: A total of 207 surveys were completed for a 40% response rate. For the "cost" prompt, the most salient responses were "excessive," "waste," and "insurance." For the "value" prompt, the most salient responses were "outcomes" and "quality." For elements to include in a curriculum, the most salient responses were "insurance" and "costs." Analyzing responses based on years in practice, percentage clinical time, and division resulted in slightly different lists and salience scores. CONCLUSIONS: In this freelisting exercise, there was general agreement that health care costs are "excessive," that "outcomes" and "quality" are integral to value, and that there is a need for education in these areas, especially around "insurance." Differences based on years in practice, percentage clinical time, or division can inform the development of targeted curricula that consider the needs, knowledge, and interests of these groups.
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Atitude do Pessoal de Saúde , Custos de Cuidados de Saúde , Corpo Clínico Hospitalar , Pediatria/educação , Qualidade da Assistência à Saúde , Currículo , Humanos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Nonrandom sampling of populations in developing nations has limitations and can inaccurately estimate health phenomena, especially among hard-to-reach populations such as rural residents. However, random sampling of rural populations in developing nations can be challenged by incomplete enumeration of the base population. METHODS: We describe a stratified random sampling method using geographical information system (GIS) software and global positioning system (GPS) technology for application in a health survey in a rural region of Guatemala, as well as a qualitative study of the enumeration process. RESULTS: This method offers an alternative sampling technique that could reduce opportunities for bias in household selection compared to cluster methods. However, its use is subject to issues surrounding survey preparation, technological limitations and in-the-field household selection. Application of this method in remote areas will raise challenges surrounding the boundary delineation process, use and translation of satellite imagery between GIS and GPS, and household selection at each survey point in varying field conditions. This method favors household selection in denser urban areas and in new residential developments. CONCLUSIONS: Random spatial sampling methodology can be used to survey a random sample of population in a remote region of a developing nation. Although this method should be further validated and compared with more established methods to determine its utility in social survey applications, it shows promise for use in developing nations with resource-challenged environments where detailed geographic and human census data are less available.
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Países em Desenvolvimento , Inquéritos Epidemiológicos/métodos , População Rural , Estudos de Amostragem , Viés , Censos , Sistemas de Informação Geográfica , Guatemala , Humanos , Pesquisa QualitativaRESUMO
STUDY OBJECTIVE: An increase in prescriptions for opioid pain medications has coincided with increasing opioid overdose deaths. Guidelines designed to optimize opioid prescriptions written in the emergency department have been implemented, with substantial controversy. Little is known about how physicians perceive and apply these guidelines. We seek to identify key themes about emergency physicians' definition, awareness, use, and opinions of opioid-prescribing guidelines. METHODS: We conducted semistructured qualitative interviews with a convenience sample of 61 emergency physicians attending the American College of Emergency Physicians Scientific Assembly (October 2012, Denver, CO). Participants varied with respect to age, sex, geographic region, practice setting, and years of practice experience. We analyzed the interview content with modified grounded theory, an iterative coding process to identify patterns of responses and derive key themes. The study team examined discrepancies in the coding process to ensure reliability and establish consensus. RESULTS: When aware of opioid-prescribing guidelines, emergency physicians often defined them as policies developed by individual hospitals that sometimes reflected guidelines at the state or national level. Guidelines were primarily used by physicians to communicate decisions to limit prescriptions to patients on discharge rather than as tools for decisionmaking. Attitudes toward guidelines varied with regard to general attitudes toward opioid medications, as well as the perceived effects of guidelines on physician autonomy, public health, liability, and patient diversion. CONCLUSION: These exploratory findings suggest that hospital-based opioid guidelines complement and occasionally supersede state and national guidelines and that emergency physicians apply guidelines primarily as communication tools. The perspectives of providers should inform future policy actions that seek to address the problem of opioid abuse and overdose through practice guidelines.
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Analgésicos Opioides/uso terapêutico , Serviço Hospitalar de Emergência , Fidelidade a Diretrizes , Padrões de Prática Médica , Adulto , Serviço Hospitalar de Emergência/normas , Serviço Hospitalar de Emergência/estatística & dados numéricos , Feminino , Fidelidade a Diretrizes/estatística & dados numéricos , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Manejo da Dor/métodos , Manejo da Dor/normas , Guias de Prática Clínica como Assunto , Padrões de Prática Médica/estatística & dados numéricos , Pesquisa Qualitativa , Estados Unidos/epidemiologiaRESUMO
STUDY OBJECTIVES: Adolescents with obstructive sleep apnea syndrome (OSAS) represent an important but understudied subgroup of long-term continuous positive airway pressure (CPAP) users. The purpose of this qualitative study was to identify factors related to adherence from the perspective of adolescents and their caregivers. METHODS: Individual open-ended, semi-structured interviews were conducted with adolescents (n = 21) and caregivers (n = 20). Objective adherence data from the adolescents' CPAP machines during the previous month was obtained. Adolescents with different adherence levels and their caregivers were asked their views on CPAP. Using a modified grounded theory approach, we identified themes and developed theories that explained the adolescents' adherence patterns. RESULTS: Adolescent participants (n = 21) were aged 12-18 years, predominantly male (n = 15), African American (n = 16), users of CPAP for at least one month. Caregivers were mainly mothers (n = 17). Seven adolescents had high use (mean use 381 ± 80 min per night), 7 had low use (mean use 30 ± 24 min per night), and 7 had no use during the month prior to being interviewed. Degree of structure in the home, social reactions, mode of communication among family members, and perception of benefits were issues that played a role in CPAP adherence. CONCLUSIONS: Understanding the adolescent and family experience of using CPAP may be key to increasing adolescent CPAP adherence. As a result of our findings, we speculate that health education, peer support groups, and developmentally appropriate individualized support strategies may be important in promoting adherence. Future studies should examine these theories of CPAP adherence.
Assuntos
Comportamento do Adolescente/psicologia , Pressão Positiva Contínua nas Vias Aéreas/estatística & dados numéricos , Conhecimentos, Atitudes e Prática em Saúde , Cooperação do Paciente/psicologia , Cooperação do Paciente/estatística & dados numéricos , Apneia Obstrutiva do Sono/terapia , Adolescente , Comportamento do Adolescente/fisiologia , Criança , Pressão Positiva Contínua nas Vias Aéreas/métodos , Pressão Positiva Contínua nas Vias Aéreas/psicologia , Família/psicologia , Feminino , Humanos , Entrevistas como Assunto/métodos , Masculino , Apneia Obstrutiva do Sono/psicologiaRESUMO
OBJECTIVES: The objective was to identify adolescent preferences for emergency department (ED)-based education about emergency contraception. METHODS: This was a cross-sectional computerized survey, using adaptive conjoint analysis (ACA). Patients were eligible if they were females ages 14 through 19 years old and were seeking care in one of two urban EDs. Patients were excluded if they were too ill to participate in the survey or if they were non-English speaking. Participants completed a computerized survey that used ACA, a technique that can be used to assess patients' relative preferences for services. ACA uses the individual's answers to update and refine questions through trade-off comparisons, so that each respondent answers a customized set of questions. The survey assessed preferences for the following attributes of emergency contraception education: who should deliver the education, if anyone (e.g., nurse, doctor); how the education should be delivered (e.g., by a person or via video); how often the education should be offered if patients were to frequent the ED (e.g., every time or only when asking for it); length (e.g., 5 minutes, 10 minutes); and chief complaint that would trigger the education (e.g., headache or stomach pain). RESULTS: A total of 223 patients were enrolled (37.2% at Hospital 1 and 62.8% at Hospital 2). The mean (±SD) age of the participants was 16.1 (±1.3) years. Just over half (55%) reported a history of sexual activity; 8% reported a history of pregnancy. Overall, the participants preferred education that was delivered by a person, specifically a doctor or nurse. They preferred a slightly longer education session and preferred education directed at patients seeking care in the ED for complaints potentially related to sexual activity. CONCLUSIONS: Adolescents have specific preferences for how education about emergency contraception would best serve their needs. This information can inform clinicians as they work to improve adolescents' knowledge about pregnancy prevention and emergency contraception in particular.
Assuntos
Anticoncepção Pós-Coito , Serviço Hospitalar de Emergência/organização & administração , Preferência do Paciente , Educação Sexual/métodos , Adolescente , Estudos Transversais , Feminino , Hospitais Urbanos , Humanos , Gravidez , Comportamento Sexual/estatística & dados numéricos , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVES: The objective was to identify the correlates of willingness to pay for ambulance transports from a rural city to a regional hospital in Guatemala. METHODS: An innovative methodology that utilizes a novel randomization technique and satellite imagery was used to select a sample of homes in Santiago Atitlán, Guatemala. The respondents were surveyed at these homes about their willingness to pay for ambulance transport to a regional hospital. A price ladder was used to elicit respondents' willingness to pay for ambulance transport, depending on the level of severity of three types of emergencies: life-threatening emergencies, disability-causing emergencies, and simple emergencies. Simple and multiple linear regression modeling was used to identify the social and economic correlates of respondents' willingness to pay for ambulance transport and to predict demand for ambulance transport at a variety of price levels. Beta coefficients (ß) expressed as percentages with 95% confidence intervals (CIs) were estimated. RESULTS: The authors surveyed 134 respondents (response rate=3.3%). In the multivariable regression models, three variables correlated with willingness to pay: household income, location of residence (rural district vs. urban district), and respondents' education levels. Correlates for ambulance transport in life-threatening emergencies included greater household daily income (ß=1.32%, 95% CI=0.63% to 2.56%), rural location of residence (ß=-37.3%, 95% CI=-51.1% to -137.5%), and higher educational levels (ß=4.41%, 95% CI=1.00% to 6.36%). Correlates of willingness to pay in disability-causing emergencies included greater household daily income (ß=1.59%, 95% CI=0.81% to 3.19%) and rural location of residence (ß=-19.4%, 95% CI=-35.7% to -89.4%). Correlates of willingness to pay in simple emergencies included rural location of residence (ß=59.4%, 95% CI=37.9% to 133.7%) and higher educational levels (ß=7.96%, 95% CI=1.96% to 11.8%). At all price levels, more individuals were willing to pay for transport for a life-threatening emergency than a disability-causing emergency. Respondents' willingness to pay was more responsive to price changes for transport during disability-causing emergencies than for transport during life-threatening emergencies. CONCLUSIONS: The primary correlates of willingness to pay for ambulance transport in Santiago Atitlán, Guatemala, are household income, location of residence (rural district vs. urban district), and respondents' education levels. Furthermore, severity of emergency significantly appears to influence how much individuals are willing to pay for ambulance transport. Willingness-to-pay information may help public health planners in resource-poor settings develop price scales for health services and achieve economically efficient allocations of subsidies for referral ambulance transport.