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In May of 2018, PulseNet, the national molecular subtyping network for enteric pathogens, detected a multistate cluster of illnesses caused by an uncommon molecular subtype of Salmonella serovar Mbandaka. A case was defined as an illness in a person infected with the outbreak strain of Salmonella Mbandaka with illness onset on or after 3 March 2018 and before 1 September 2018. One-hundred thirty-six cases from 36 states were identified; 35 hospitalisations and no deaths were reported. Ill people ranged in age from <1 year to 95 years (median: 57 years). When standardised questionnaires did not generate a strong hypothesis, opened-ended interviews were performed. Sixty-three of 84 (75%) ultimately reported consuming or possibly consuming a specific sweetened puffed wheat cereal in the week before illness onset. Environmental sampling performed at the cereal manufacturing facility yielded the outbreak strain. The outbreak strain was also isolated from open cereal samples from ill people's homes and from a sealed retail sample. Due to these findings, the brand owner of the product issued a voluntary recall of the cereal on 14 June 2018. Additional investigation of the manufacturing facility identified persistent environmental contamination with Salmonella Mbandaka that was closely genetically related to other isolates in the outbreak. This investigation highlights the ability of Salmonella to survive in low-moisture environments, and the potential for prolonged outbreaks linked to products with long shelf lives and large distribution areas.
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Intoxicação Alimentar por Salmonella , Infecções por Salmonella , Surtos de Doenças , Grão Comestível , Humanos , Lactente , Salmonella/genética , Intoxicação Alimentar por Salmonella/epidemiologia , Infecções por Salmonella/epidemiologia , Triticum , Estados Unidos/epidemiologiaRESUMO
OBJECTIVE: Because of COVID-19, higher education changed as institutions went remote and students' mental health was challenged. Rural universities were disproportionately affected because of limited Internet access. The purpose of this study was to investigate the psychological need satisfaction/frustration and mental health among rural college students during this pandemic. PARTICIPANTS: Six hundred ninety-eight students (Mage = 22.15 ± 2.55) at a rural South-eastern university were recruited. METHODS: Participants completed a survey examining stress, anxiety, need satisfaction/frustration and previous experience with online courses. RESULTS: Anxiety, autonomy and competence frustration were found to predict 60% of the variance of stress. Another regression analysis found stress, autonomy, competence, and relatedness frustration to predict 70% of the anxiety variance. CONCLUSIONS: Students are frustrated due to the lack of control and restrictions affecting their social interaction. Understanding the relationship between need satisfaction/frustration and mental health can aid university administration in developing interventions that address rural students' needs.
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Public health laboratories (PHLs) provide specialized testing services for programs focused on the prevention and control of communicable diseases, early detection of congenital disorders, testing for antimicrobial resistance, and identification of environmental contaminants, among other responsibilities. Although national public health programs and partners provide some funding support, training, and technical resources to PHLs, no dedicated funding is provided from federal programs to fully support comprehensive PHL services across the United States or the underlying infrastructure needed for PHLs to provide and ensure their core functions and capabilities. Public health laboratories have begun to rely on a "community of practice" approach to addressing various service needs by creating and formalizing regional consortia, which are organized groups of geographically clustered PHLs that share expertise, capacities, and capabilities to enhance PHL services. The number of states participating in these networks increased from 13 to 48 from 2015 to 2020, including participation by multiple local PHLs and a territorial PHL. These consortia have enabled strengthening of partnerships and collaboration among PHLs to address regional priorities and challenges. We explore the background and evolution of regional consortia, outline some of their practices and activities, review lessons learned from these successful collaborations, and discuss the positive effect they have on the national public health system.
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Doenças Transmissíveis , Laboratórios , Humanos , Saúde Pública , Estados Unidos , United States Public Health ServiceRESUMO
BACKGROUND: Substantial literature has highlighted the importance of patient-reported outcome and experience measures (PROMs and PREMs, respectively) to collect clinically relevant information to better understand and address what matters to patients. The purpose of this systematic review is to synthesize the evidence about how healthcare providers implement individual-level PROMs and PREMs data into daily practice. METHODS: This mixed methods systematic review protocol describes the design of our synthesis of the peer-reviewed research evidence (i.e., qualitative, quantitative, and mixed methods), systematic reviews, organizational implementation projects, expert opinion, and grey literature. Keyword synonyms for "PROMs," PREMs," and "implementation" will be used to search eight databases (i.e., MEDLINE, CINAHL, PsycINFO, Web of Science, Embase, SPORTDiscus, Evidence-based Medicine Reviews, and ProQuest (Dissertation and Theses)) with limiters of English from 2009 onwards. Study selection criteria include implementation at the point-of-care by healthcare providers in any practice setting. Eligible studies will be critically appraised using validated tools (e.g., Joanna Briggs Institute). Guided by the review questions, data extraction and synthesis will occur simultaneously to identify biographical information and methodological characteristics as well as classify study findings related to implementation processes and strategies. As part of the narrative synthesis approach, two frameworks will be utilized: (a) Consolidated Framework for Implementation Research (CFIR) to identify influential factors of PROMs and PREMs implementation and (b) Expert Recommendations for Implementing Change (ERIC) to illicit strategies. Data management will be undertaken using NVivo 12TM. DISCUSSION: Data from PROMs and PREMs are critical to adopt a person-centered approach to healthcare. Findings from this review will guide subsequent phases of a larger project that includes interviews and a consensus-building forum with end users to create guidelines for implementing PROMs and PREMs at the point of care. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42020182904 .
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Pessoal de Saúde , Medidas de Resultados Relatados pelo Paciente , Coleta de Dados , Atenção à Saúde , Humanos , Assistência Centrada no Paciente , Revisões Sistemáticas como AssuntoRESUMO
BACKGROUND: Adolescents commonly experience loss due to death, and perceived closeness to the deceased can often increase the intensity of bereavement. Adolescents and early young adult (AeYA) oncology patients may recall previous losses or experience new losses, possibly of other children with cancer, while coping with their own increased risk of mortality. The bereavement experiences of AeYA patients are not well described in the literature. METHODS AND FINDINGS: This analysis of bereavement sought to describe the prevalence and types of losses, the support following a death, and the impact of loss on AeYAs aged 13-21 years with malignant disease (or a hematologic disorder requiring allogeneic transplant). Participants were receiving active oncologic therapy or had completed therapy within the past 3 years. Participants completed a bereavement questionnaire and inventories on depression, anxiety, and somatization. The cross-sectional study enrolled 153 AeYAs (95% participation), most (88%) of whom had experienced a loss due to death. The most commonly reported losses were of a grandparent (58%) or friend (37%). Peer deaths were predominantly cancer related (66%). Many participants (39%) self-identified a loss as "very significant." As loss significance increased, AeYAs were more likely to report that it had changed their life "a lot/enormously" (P<0.0001), that they were grieving "slowly or never got over it" (P<0.0001), and that they felt a need for more professional help (P = 0.026). Peer loss was associated with increased risk of adverse psychological outcomes (P = 0.029), as was parental loss (P = 0.018). CONCLUSIONS: Most AeYAs with serious illness experience the grief process as slow or ongoing. Peer or parental loss was associated with increased risk of negative mental health outcomes. Given the high prevalence of peer loss, screening for bereavement problems is warranted in AeYAs with cancer, and further research on grief and bereavement is needed in AeYAs with serious illness.
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Luto , Neoplasias/psicologia , Pais/psicologia , Grupo Associado , Adolescente , Adulto , Feminino , Humanos , Masculino , Adulto JovemRESUMO
At the onset, the unfamiliarity of faith integration for nurse educators working within a faith-based university can be challenging. Two nurse educators describe the process they took to learn and navigate faith integration, while teaching undergraduate nursing students. Over the course of one year, various approaches toward faith integration with students were implemented, leading to an authentic relational interconnectedness.
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Cristianismo , Bacharelado em Enfermagem , Docentes de Enfermagem/psicologia , Currículo , Humanos , Modelos EducacionaisRESUMO
IMPORTANCE: Early palliative care integration for cancer patients is now touted as the optimal care model, yet significant barriers often prevent its implementation. A perceived barrier, especially for pediatric oncology patients, is the notion that patients and their families may not need or want palliative care involvement early in the disease trajectory. OBJECTIVE: To determine the perception of symptom burden early in treatment and assess attitudes toward early integration of palliative care in pediatric oncology patient-parent pairs. DESIGN, SETTING, AND PARTICIPANTS: Novel but pretested survey tools were administered to 129 patient-parent dyads of hospital-based pediatric oncology ambulatory clinics and inpatient units between September 2011 and January 2015. All patient participants were aged between 10 and 17 years and were diagnosed as having an oncologic condition 1 month to 1 year before enrollment. Both the patient and the parent in the dyad spoke English, and all participating parents provided written informed consent. A convenience sample was used for selection, with participants screened when otherwise presenting at a participating site. A total of 280 eligible participants were approached for study inclusion, 258 of whom were enrolled in the study (92.1% positive response-rate). MAIN OUTCOMES AND MEASURES: Degree of perceived suffering from early symptom-related causes, attitudes toward early palliative care integration, and patient-parent concordance. Statistical analysis included descriptive statistics, calculation of concordance, McNemar test results, and Cochran-Armitage trend test results. RESULTS: Of the 129 patients in the dyads, 68 were boys, and 61 girls; of the 129 parents, 15 were men, and 114 women. Patients reported the following symptoms in the first month of cancer therapy: nausea (n = 109; 84.5%), loss of appetite (n = 97; 75.2%), pain (n = 96; 74.4%), anxiety (n = 77; 59.7%), constipation (n = 69; 53.5%), depression (n = 64; 49.6%), and diarrhea (n = 52; 40.3%). A large proportion of those reporting suffering indicated substantial suffering severity from specific symptoms (ie, a great deal or a lot) including nausea, 52.3% (57 of 109), loss of appetite, 50.5% (49 of 97), constipation 30.4% (21 of 69), pain 30.2% (29 of 96), anxiety 28.6% (22 of 77), depression 28.1% (18 of 64), and diarrhea 23.1% (12 of 52). Few children and parents expressed opposition to early palliative care involvement (2 [1.6%] and 8 [6.2%]) or perceived any detrimental effects on their relationship with their oncologist (6 [4.7%] and 5 [3.9%]), loss of hope (3 [2.3%] and 10 [7.8%]), or therapy interference (3 [2.3%] and 2 [1.6%], respectively). Intradyad concordance was low overall: 26% to 29% for exact concordance and 40% to 69% for agreement within 1 response category. Significant differences in patient-parent attitudes toward aspects of early palliative care included child participants being more likely than their parents (40.3% [n = 52] vs 17.8% [n = 23]) to indicate that palliative care would have been helpful for treating their symptoms (P < .001). CONCLUSIONS AND RELEVANCE: Pediatric oncology patients experience a high degree of symptom-related suffering early in cancer therapy, and very few patients or parents in this study expressed negative attitudes toward early palliative care. Our findings suggest that pediatric oncology patients and families might benefit from, and are not a barrier to, early palliative care integration in oncology.
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Atitude , Neoplasias/complicações , Neoplasias/terapia , Cuidados Paliativos/psicologia , Pais/psicologia , Aceitação pelo Paciente de Cuidados de Saúde , Adolescente , Adulto , Idoso , Anorexia/etiologia , Anorexia/terapia , Ansiedade/etiologia , Ansiedade/terapia , Dor do Câncer/etiologia , Dor do Câncer/terapia , Criança , Constipação Intestinal/etiologia , Constipação Intestinal/terapia , Depressão/etiologia , Depressão/terapia , Diarreia/etiologia , Diarreia/terapia , Feminino , Humanos , Masculino , Oncologia , Pessoa de Meia-Idade , Náusea/etiologia , Náusea/terapia , Pediatria , Percepção , Inquéritos e Questionários , Avaliação de SintomasRESUMO
BACKGROUND: Adverse event (AE) reporting in oncology trials is required, but current practice does not directly integrate the child's voice. The Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) is being developed to assess symptomatic AEs via child/adolescent self-report or proxy-report. This qualitative study evaluates the child's/adolescent's understanding and ability to provide valid responses to the PRO-CTCAE to inform questionnaire refinements and confirm content validity. PROCEDURE: From seven pediatric research hospitals, children/adolescents ages 7-15 years who were diagnosed with cancer and receiving treatment were eligible, along with their parent-proxies. The Pediatric PRO-CTCAE includes 130 questions that assess 62 symptomatic AEs capturing symptom frequency, severity, interference, or presence. Cognitive interviews with retrospective probing were completed with children in the age groups of 7-8, 9-12, and 13-15 years. The children/adolescents and proxies were interviewed independently. RESULTS: Two rounds of interviews involved 81 children and adolescents and 74 parent-proxies. Fifteen of the 62 AE terms were revised after Round 1, including refinements to the questions assessing symptom severity. Most participants rated the PRO-CTCAE AE items as "very easy" or "somewhat easy" and were able to read, understand, and provide valid responses to questions. A few AE items assessing rare events were challenging to understand. CONCLUSIONS: The Pediatric and Proxy PRO-CTCAE performed well among children and adolescents and their proxies, supporting its content validity. Data from PRO-CTCAE may improve symptomatic AE reporting in clinical trials and enhance the quality of care that children receive.
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Sistemas de Notificação de Reações Adversas a Medicamentos/normas , Antineoplásicos/efeitos adversos , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Entrevista Psicológica/normas , Neoplasias/tratamento farmacológico , Medidas de Resultados Relatados pelo Paciente , Autorrelato , Adolescente , Criança , Cognição , Feminino , Seguimentos , Humanos , Masculino , Neoplasias/psicologia , Avaliação de Resultados da Assistência ao Paciente , Prognóstico , Estudos Retrospectivos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with patients and families at the end of a child's life and after death profoundly affects parental grief, offering a unique opportunity for the medical community to positively impact the bereavement experience. The current study was conducted to explore the role of the health care team and medical institutions in the grief journeys of parents whose child died a cancer-related death. METHODS: Eleven bereaved parents participated in 2 focus groups. Responses to each of the 3 main prompts were coded and analyzed independently using semantic content analysis techniques. RESULTS: Four main concepts were identified within the parental narratives, including the importance of strong and ongoing relationships between providers and bereaved families, the importance of high-quality communication, the effect of negative experiences between providers and families on parental grief, and the importance of the institution's role in the grief journeys of bereaved parents. CONCLUSIONS: Bereaved parents consistently identified the critical role played by medical staff and medical institutions throughout the grief journey. Key components of bereavement support identified by parents should serve to guide the actions of providers as well as provide a template for the development of a comprehensive bereavement program within an institution. Cancer 2016. © 2016 American Cancer Society. Cancer 2016;122:2757-2765. © 2016 American Cancer Society.
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Luto , Pesar , Avaliação das Necessidades , Neoplasias/psicologia , Enfermagem Oncológica , Pais/psicologia , Apoio Social , Atitude do Pessoal de Saúde , Atitude Frente a Morte , Criança , Comunicação , Feminino , Seguimentos , Pessoal de Saúde , Humanos , Masculino , Neoplasias/enfermagem , Equipe de Assistência ao Paciente , Relações Profissional-Família , Estresse Psicológico/prevenção & controle , Recursos HumanosRESUMO
BACKGROUND: The demonstrated benefit of integrating palliative care (PC) into cancer treatment has triggered an increased need for PC services. The trajectory of integrating PC in comprehensive cancer centers, particularly pediatric centers, is unknown. We describe our 8-year experience of initiating and establishing PC with the Quality of Life Service (QoLS) at St. Jude Children's Research Hospital. METHODS: We retrospectively reviewed records of patients seen by the QoLS (n=615) from March 2007 to December 2014. Variables analyzed for each year, using descriptive statistics, included diagnostic groups, QoLS encounters, goals of care, duration of survival, and location of death. RESULTS: Total QoLS patient encounters increased from 58 (2007) to 1,297 (2014), new consults increased from 17 (2007) to 115 (2014), and mean encounters per patient increased from 5.06 (2007) to 16.11 (2014). Goal of care at initial consultation shifted from primarily comfort to an increasing goal of cure. The median number of days from initial consult to death increased from 52 days (2008) to 223 days (2014). A trend toward increased outpatient location of death was noted with 42% outpatient deaths in 2007, increasing to a majority in each subsequent year (range, 51%-74%). Hospital-wide, patients receiving PC services before death increased from approximately 50% to nearly 100%. CONCLUSIONS: Since its inception, the QoLS experienced a dramatic increase in referrals and encounters per patient, increased use by all clinical services, a trend toward earlier consultation and longer term follow-up, increasing outpatient location of death, and near-universal PC involvement at the end-of-life. The successful integration of PC in a comprehensive cancer center, and the resulting potential for improved care provision over time, can serve as a model for other programs on a broad scale.
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Neoplasias/terapia , Cuidados Paliativos/métodos , Feminino , Humanos , Masculino , Neoplasias/patologia , Qualidade de Vida , Estudos RetrospectivosRESUMO
BACKGROUND: The death of a child is a devastating event that results in profound grief and significant psychosocial and physical morbidities in parents. The parental grief journey is a complex phenomenon necessitating the utilization of newer models of bereavement with a focus on relationships and exploration of parents' perceived meanings of the experience. OBJECTIVES: To further characterize the grief journey of parents whose child died from cancer in order to better identify parents who can benefit from additional bereavement support and design strategies to improve bereavement services for these parents. DESIGN: We conducted focus group sessions with 11 bereaved parents. The parents were given two prompts to describe their grief journey before and after their child's death, and their responses in a narrative form were audio-recorded. The responses were coded and studied independently by semantic content analysis. RESULTS: Collation and analysis of the coded responses to both prompts results in the emergence of four concepts from the parental narratives: (1) description of the grief trajectory and evolution of grief over time, (2) mechanisms of parental coping throughout the grief journey, (3) factors that exacerbate parental grief, and (4) sources of parental support throughout the grief journey. CONCLUSIONS: The narratives highlighted that parents whose child died of cancer experience a unique and evolving form of grief and they wish to continue their bond with the deceased child. We recommend that healthcare providers and institutions incorporate support systems into a comprehensive bereavement program for families of children who die from cancer.
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Pesar , Neoplasias/psicologia , Pais/psicologia , Adaptação Psicológica , Morte , Feminino , Humanos , MasculinoRESUMO
BACKGROUND: Adolescents with cancer cite the opinions of others and expected impact on others as formative for their care preferences and decisions. The current study first explores how the concepts of being a good child and being a good patient may exist for adolescents with cancer and determines how adolescents describe and apply these concepts. The study then investigates parental actions and clinician behaviors perceived by adolescents with cancer as supportive in helping them to achieve their defined good child and good patient roles. METHODS: In a prospective study conducted at 2 cancer treatment centers over the course of 10 months, 40 adolescents with cancer responded to 10 open-ended questions. Semantic content analysis was used. An adolescent focus group validated the findings. RESULTS: Of the 40 participants in the current study, 39 confirmed 1 or both concepts; the good patient responses yielded 112 codes and 5 themes: cooperation, adherence, communication, self-care, and care for others. The good child responses revealed 88 codes and 7 themes: cooperation and respect, positivity, lightening others' burdens, taking treatment seriously, recognizing mutual impact, communication, and acknowledging mortality. Of 589 interview phrases, 184 (31%) depicted themes of care for others and 58 (10%) spoke of tolerating treatment in the hope of a better future for one's self or others. The benefits and challenges of living up to these definitions were discussed. CONCLUSIONS: Clinicians may consider asking adolescents about their "good child" and "good patient" descriptions to learn more about the perceived roles carried by adolescents with cancer and how these roles may impact their decision making, medication adherence, and social interactions. Cancer 2016;122:2224-33. © 2016 American Cancer Society.
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Neoplasias/epidemiologia , Neoplasias/psicologia , Inquéritos e Questionários , Adolescente , Criança , Comunicação , Feminino , Humanos , Masculino , Cooperação do Paciente , Relações Médico-Paciente , Autocuidado , Adulto JovemRESUMO
BACKGROUND: The interaction of health care providers and hospital staff with patients and families at the end of life affects the parental grief experience. Both verbal and nonverbal communication are key components of this interaction. OBJECTIVE: The study objective was to explore the communication between hospital staff members and patients and families at the time of patients' health decline near the end of life. METHODS: Twelve bereaved parents participated in a focus group. Semantic content analysis was used to analyze the transcript. RESULTS: Parents' responses to the prompt about typical ways the medical team communicated yielded 109 codes, which were grouped into 12 themes. The most common themes were "patient inclusion" and "explanation of medical plan," both used in 17% of responses. Responses to the prompt about positive and negative aspects of communication generated 208 codes, yielding 15 different themes. The most common theme about positive communication was the "strong relationship between family and staff." The theme "variations in care with a negative impact" was used most frequently in describing negative communication. CONCLUSION: This study helps to identify techniques that should be used by clinicians as they work with children with cancer and their families, particularly including patients in treatment decisions, ongoing relationship building, communicating with caring and empathy, using an interdisciplinary team for additional support, and pairing bad news with a plan of action.
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Comunicação , Pesar , Pessoal de Saúde/psicologia , Neoplasias/psicologia , Pais/psicologia , Relações Profissional-Família , Assistência Terminal/psicologia , Adolescente , Adulto , Atitude do Pessoal de Saúde , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Neoplasias/enfermagem , Enfermagem Oncológica/métodos , Enfermagem Pediátrica/métodos , TennesseeRESUMO
Individuals living with serious mental illness who require acute and/or tertiary mental healthcare services represent one of the most complex patient groups in the healthcare service delivery system. Provincial mental health policy has been committed to providing services closer to home and in the community rather than an institution wherever possible for some time. This paper articulates the strategies used by one organization to ensure the successful transfer of beds and related ambulatory services to four separate communities. In addition a case study is also provided to describe in more detail the complex changes that took place in order to accomplish the divestments of beds and related ambulatory services to one of the partner hospitals.
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Instituições de Assistência Ambulatorial , Centros Comunitários de Saúde Mental , Acessibilidade aos Serviços de Saúde , Número de Leitos em Hospital , Assistência Centrada no Paciente , Hospitais Psiquiátricos , Humanos , Londres , Estudos de Casos Organizacionais , Política OrganizacionalRESUMO
BACKGROUND: This qualitative study investigated the medical decision-making preferences of adolescent oncology patients and the parental and clinician behaviors that adolescents report to be supportive of their preferred level of decision-making involvement. METHODS: Interviews were conducted with 40 adolescents between the ages of 12 and 18 years who were undergoing cancer treatment in Memphis, Tenn or Washington, DC. Role preferences were converted into a predetermined Likert scale decisional preference score. A semantic content analysis was used to analyze patient reports of parental behaviors, attitudes, knowledge levels, and relational interactions that facilitated their preferred level of involvement in decision making. Clinician behaviors described as supportive of decisional processes were also categorized thematically. A teen advisory council validated study findings. Data reporting followed strict adherence to Consolidated Criteria for Reporting Qualitative Research guidelines. RESULTS: Adolescents indicated a spectrum of preferred decisional roles, with the most common being an actively involved role (26 of 40 or 65%), although a shared decision-making approach was still valued. There was no statistically significant difference in the preferred decisional role with respect to demographic or medical characteristics, including the relapse status, although adolescents who preferred autonomous interview settings were more likely to prefer active decisional roles (P < .001). Adolescents recognized that situational and social contexts might shift their preferred level of involvement in medical decisions. Although adolescents wanted to be involved in decisions, they also expressed an appreciation of family insight, parental presence, and clinician guidance. CONCLUSIONS: Adolescents with cancer are able to retrospectively identify their preferences for inclusion in medical decision making, and even when preferring involvement, they value the input of trusted others.
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Neoplasias/terapia , Participação do Paciente , Preferência do Paciente , Adolescente , Criança , Comunicação , Tomada de Decisões , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Neoplasias/psicologia , Relações Médico-Paciente , Pesquisa QualitativaRESUMO
OBJECTIVE: To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda. STUDY DESIGN: A 4-round modified Delphi online survey was administered to PPC experts and to parents of children who had received PPC. In round 1, research priorities were generated spontaneously. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. In round 4, participants were asked to rank the research priorities that had reached at least 80% consensus. RESULTS: A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for round 2 ratings (n = 130; 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98; 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education. CONCLUSIONS: This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.
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Cuidados Paliativos , Pediatria , Pesquisa , Atitude do Pessoal de Saúde , Técnica Delphi , Humanos , Pais/psicologia , Estados UnidosRESUMO
CONTEXT: Pediatric patients with solid tumors can have a significant symptom burden that impacts quality of life (QoL) and end-of-life care needs. OBJECTIVES: We evaluated outcomes and symptoms in children with solid tumors and compared patterns of end-of-life care after implementation of a dedicated institutional pediatric palliative care (PC) service. METHODS: We performed a retrospective cohort study of children with solid tumors treated at St. Jude Children's Research Hospital, before and after implementation of the institutional QoL/PC service in January 2007. Patients who died between July 2001 and February 2005 (historical cohort; n = 134) were compared with those who died between January 2007 and January 2012 (QoL/PC cohort; n = 57). RESULTS: Median time to first QoL/PC consultation was 17.2 months (range 9-33). At consultation, 60% of children were not receiving or discontinued cancer-directed therapy. Within the QoL/PC cohort, 54 patients had documented symptoms, 94% required intervention for ≥3 symptoms, and 76% received intervention for ≥5 symptoms. Eighty-three percent achieved their preferred place of death. Compared with the historical cohort, the QoL/PC cohort had more end-of-life discussions per patient (median 12 vs. 3; P < 0.001), earlier end-of-life discussions, with longer times before do-not-resuscitate orders (median 195 vs. 2 days; P < 0.001), and greater hospice enrollment (71% vs. 46%, P = 0.002). CONCLUSION: Although children with solid tumor malignancies may have significant symptom burden toward the end of life, positive changes were documented in communication and in places of care and death after implementation of a pediatric PC service.
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Neoplasias/epidemiologia , Neoplasias/terapia , Cuidados Paliativos/métodos , Cuidados Paliativos/estatística & dados numéricos , Assistência Terminal/métodos , Assistência Terminal/estatística & dados numéricos , Adolescente , Criança , Comunicação , Morte , Feminino , Hospitais para Doentes Terminais/estatística & dados numéricos , Humanos , Masculino , Pediatria/métodos , Pediatria/estatística & dados numéricos , Qualidade de Vida , Ordens quanto à Conduta (Ética Médica) , Estudos Retrospectivos , Fatores de TempoRESUMO
In April, 2011, the Q fever bacterium Coxiella burnetii was identified at a Washington farm where an abortion storm took place among goats. Soon after, Q fever cases were reported among visitors to the farm from Washington and Montana. A cross-sectional investigation was conducted among humans and goats associated with the index farm or with 16 other farms that purchased goats from the index farm or housed goats at the index farm for breeding purposes. Questionnaire data were analyzed, along with human and goat specimens collected for evidence of C. burnetii infection. Twenty-one persons (19%) of the 109-person cohort from Washington and Montana met the outbreak case definition of an epidemiologic link to the index farm and a C. burnetii Phase II immunoglobulin G (IgG) titer ≥1:128 by immunofluorescence assay. Seventy-one percent of cases (15 of 21) were symptomatic, compared with approximately 50% during previous Q fever outbreaks. National Q fever surveillance reports increase in frequency with age, but 29% (6 of 21) of cases during this outbreak occurred in children aged <14 years. Goat-specific Q fever risk factors included direct contact with a newborn (prevalence ratio [PR] 10.7; confidence interval [CI] 1.5, 77.4), exposure to a newborn that died (PR 5.5; CI 1.7, 18.2), exposure to a weak newborn (PR 4.4; CI 1.7, 11.6), living on a property with goats (PR 4.2; CI 1.3, 13.9), and direct contact with birth/afterbirth products (PR 2.8; CI 1.1, 6.9). Evidence of C. burnetii infection was detected in all 17 goat herds sampled (13 Washington, 3 Montana, 1 Oregon) by PCR and/or enzyme-linked immunosorbent assay. Following this investigation, Washington and Montana implemented a herd management plan to encourage best-management practices among livestock owners, reduce the potential for future outbreaks, and promote continued communication between state public health and agricultural authorities.
Assuntos
Febre Q/epidemiologia , Febre Q/veterinária , Aborto Animal , Adolescente , Adulto , Fatores Etários , Animais , Criança , Pré-Escolar , Coxiella burnetii/isolamento & purificação , Surtos de Doenças , Feminino , Doenças das Cabras/epidemiologia , Cabras , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Montana , Oregon , Fatores de Risco , Washington , Adulto JovemRESUMO
BACKGROUND: The Veterans Aging Cohort Study (VACS) is a study of human immunodeficiency virus (HIV) infected and uninfected patients seen in infectious disease and general medical clinics. VACS includes the earlier 3 and 5 site studies (VACS 3 and VACS 5) as well as the ongoing 8 site study. OBJECTIVES: We sought to provide background and context for analyses based upon VACS data, including study design and rationale as well as its basic protocol and the baseline characteristics of the enrolled sample. RESEARCH DESIGN: We undertook a prospectively consented multisite observational study of veterans in care with and without HIV infection. MEASURES: Data were derived from patient and provider self report, telephone interviews, blood and DNA samples, focus groups, and full access to the national VA "paperless" electronic medical record system. RESULTS: More than 7200 veterans have been enrolled in at least one of the studies. The 8 site study (VACS) has enrolled 2979 HIV-infected and 3019 HIV-uninfected age-race-site matched comparators and has achieved stratified enrollment targets for race/ethnicity and age and 99% of its total target enrollment as of October 30, 2005. Participants in VACS are similar to other veterans receiving care within the VA. VACS participants are older and more predominantly black than those reported by the Centers for Disease Control. CONCLUSIONS: VACS has assembled a rich, in-depth, and representative sample of veterans in care with and without HIV infection to conduct longitudinal analyses of questions concerning the association between alcohol use and related comorbid and AIDS-defining conditions.