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1.
Cancer ; 2024 Jun 12.
Artículo en Inglés | MEDLINE | ID: mdl-38865435

RESUMEN

BACKGROUND: The prevalence and characteristics of household material hardship (HMH) in families of children with advanced cancer and its association with parent distress are unknown and herein described. METHODS: Parents of children aged ≥2 years with advanced cancer at five cancer centers completed baseline surveys as part of the PediQUEST Response trial. HMH (housing, energy, and food) was operationalized as binary (≥1 HMH domains), ordinal (zero, one, or two or more HMH domains), and housing based (none, nonhousing [food and/or energy], only housing, or housing + other). Associations between HMH and parent distress measured by the State-Trait Anxiety Inventory-State and the 10-item Center for Epidemiologic Studies Depression Scale were estimated via linear models adjusting for confounders. RESULTS: Among 150 parents, 41% reported ≥1 HMH (housing, 28% [only housing, 8%; housing + other, 20%]; energy, 19%; food, 27%). HMH was more prevalent among Hispanic, other non-White race, Spanish-speaking, and single parents and those with lower education (associate degree or less) or who were uninsured/Medicaid-only insured. Parents endorsing HMH reported higher anxiety (mean difference [MD], 9.2 [95% CI, 3.7-14.7]) and depression (MD, 4.1 [95% CI, 1.7-6.5]) scores compared to those without HMH. Distress increased with the number of hardships, particularly housing insecurity. Specifically, parents experiencing housing hardship, alone or combined, reported higher distress (housing only: anxiety: MD, 10.2 [95% CI, 1.8-18.5]; depression: MD, 4.9 [95% CI, 1.3-8.6]; housing + other HMH: anxiety: MD, 12.0 [95% CI, 5.2-18.9]; depression: MD, 4.8 [95% CI, 1.8-7.8]). CONCLUSIONS: HMH is highly prevalent in pediatric advanced cancer, especially among historically marginalized families. Future research should investigate whether interventions targeting HMH, particularly housing stabilization efforts, can mitigate parent distress. PLAIN LANGUAGE SUMMARY: In our cohort of parents of children with advanced cancer, household material hardship (HMH) was highly prevalent and significantly associated with higher parent distress. Housing hardship was the primary driver of this association. Families of children with advanced cancer may benefit from systematic HMH screening as well as targeted HMH interventions, especially stabilizing housing.

2.
Pediatr Res ; 94(2): 581-587, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-36670160

RESUMEN

OBJECTIVE: To explore pediatric subspecialist distress and well-being during the pandemic, with a particular focus on relationships between compassion fatigue (CF), burnout (BO), and compassion satisfaction (CS), and physicians' perception of "feeling valued" by their institution. METHODS: The Compassion Fatigue and Satisfaction Self-Test and a questionnaire of personal/professional characteristics were distributed electronically to pediatric subspecialists. Content analysis was performed for responses to the question "How has your institution made you feel valued?" RESULTS: During the 16-month study period, CF and BO scores significantly increased, and CS scores decreased over time. By Epoch 3, 52% of respondents did not feel valued by their employing institution. When controlling for the effect of time, CF and BO scores remained higher, and CS scores lower, in participants who did not feel valued by their institution. Themes from the content analysis of "value" included expressions of gratitude, perks vs. penalties, safety, and leadership. The same overture from leadership provoked disparate responses in recipients, seemingly over the sincerity behind the offering, which may reflect underlying workplace culture. CONCLUSIONS: Increasingly, pediatric subspecialists are not feeling valued for their work. Institutional leadership must prioritize healthy workplace culture, and re-think emotional and mental health support within the health system. IMPACT: A total of 52% of our study population did not "feel valued" by their employing institution by late 2021, which is cause for concern. This is the first longitudinal analysis of distress and well-being in a national cohort of pediatric subspecialists during the COVID-19 pandemic. The same overture or messaging from leadership sparked disparate responses in recipients, seemingly over the sincerity behind the offering, which relates to the underlying workplace culture of the department or institution. Institutional leadership must prioritize a healthy workplace culture, and re-think and re-invent emotional and mental health support within the health system.


Asunto(s)
Agotamiento Profesional , COVID-19 , Desgaste por Empatía , Humanos , Niño , Desgaste por Empatía/epidemiología , Desgaste por Empatía/psicología , SARS-CoV-2 , Pandemias , COVID-19/epidemiología , Estudios Transversales , Agotamiento Profesional/epidemiología , Agotamiento Profesional/psicología , Lugar de Trabajo/psicología , Calidad de Vida/psicología , Encuestas y Cuestionarios , Percepción , Satisfacción en el Trabajo
3.
Pediatr Res ; 91(1): 143-148, 2022 01.
Artículo en Inglés | MEDLINE | ID: mdl-34211128

RESUMEN

BACKGROUND: The aim of this study was to explore factors contributing to compassion fatigue (CF), burnout (BO), and compassion satisfaction (CS) during the severe acute respiratory syndrome coronavirus-2 pandemic in pediatric subspecialists. METHODS: The Compassion Fatigue and Satisfaction Self-Test (CFST) and a questionnaire of personal/professional characteristics were distributed electronically to pediatric subspecialists. RESULTS: There were no significant differences in pre- and early-pandemic CF, BO, and CS scores. Nearly 40% of respondents felt their contributions to the pandemic were not valued by their institutions. Higher CF scores were significantly associated with: higher BO score; "I have put myself at increased risk through my work"; working in one's specialty >50% of time; distress about mental health and/or future uncertainty. Higher BO scores were significantly associated with: higher CF score; "Self-care is not a priority"; emotional depletion. Higher CS scores were significantly associated with: "My institution values my contribution to the COVID-19 crisis"; workplace debriefs; pet therapy. CONCLUSIONS: The pandemic has only increased the need for physicians to receive social/emotional support from their institution and to feel their workplace contributions are valued. Successful pre-pandemic workplace interventions may not adequately support physicians during the pandemic. Further study is needed to identify supports that best counter the pandemic's unprecedented challenges. IMPACT: The sentiment "My institution has valued my contribution to the Covid-19 crisis" was the only significant factor associated with lower BO scores and was also associated with higher CS scores in pediatric subspecialists. This study is the first comparison of pre- and early-pandemic CF, BO, and CS scores in a national cohort of pediatric subspecialists. When considering interventions to promote CS and mitigate CF and BO for pediatric subspecialists during and after the pandemic, institutional leadership must offer wellness programming focused on social/emotional supports and prioritize a culture that explicitly recognizes and values every physician's contributions.


Asunto(s)
Agotamiento Profesional , COVID-19/epidemiología , Desgaste por Empatía , Satisfacción en el Trabajo , Pandemias , Pediatras/psicología , SARS-CoV-2 , Adulto , COVID-19/psicología , COVID-19/terapia , Niño , Femenino , Humanos , Masculino , Persona de Mediana Edad , Pediatría/clasificación , Encuestas y Cuestionarios , Estados Unidos/epidemiología
4.
Pediatr Res ; 88(3): 398-403, 2020 09.
Artículo en Inglés | MEDLINE | ID: mdl-32054989

RESUMEN

BACKGROUND: While institution-sponsored wellness programs may be effective, little is known about their availability and utilization in pediatric subspecialists, and about programs physicians wish were available. METHODS: A survey of perceptions about, and availability and utilization of institutional wellness activities, was distributed electronically to pediatric subspecialists nationally. Bivariate analyses were performed using χ2 tests or independent t tests. Multivariable logistic regression models for categories of institution-sponsored programming as a function of potential predictors of program utilization were performed. Qualitative content analysis was performed for free-text survey answers. RESULTS: Approximately 60% of respondents participated in institution-sponsored wellness opportunities. Debriefs, Schwartz Center Rounds, mental health services, and team building events were the most available institution-sponsored wellness activities, whereas debriefs, team building, Schwartz Center Rounds, and pet therapy were most frequently utilized. Respondents desired greater social/emotional support, improved leadership, enhanced organizational support, and modifications to the physical work environment, with no significant differences across subspecialties for "wish list" items. CONCLUSIONS: Physician wellness requires more than a "one-size-fits-all" initiative. Our data highlight the importance of encouraging and normalizing self-care practices, and of listening to what physicians articulate about their needs. Pre-implementation needs assessment allows a "bottom-up" approach where physician voices can be heard.


Asunto(s)
Promoción de la Salud , Neonatología/organización & administración , Pediatras/psicología , Pediatría/organización & administración , Cuidados Críticos/organización & administración , Medicina de Emergencia/organización & administración , Femenino , Hematología/organización & administración , Humanos , Satisfacción en el Trabajo , Liderazgo , Masculino , Oncología Médica/organización & administración , Análisis Multivariante , Cuidados Paliativos/organización & administración , Percepción , Médicos/psicología , Proyectos Piloto , Autocuidado , Encuestas y Cuestionarios
5.
J Pediatr Hematol Oncol ; 42(1): e50-e55, 2020 01.
Artículo en Inglés | MEDLINE | ID: mdl-31259831

RESUMEN

Compassion fatigue (CF), burnout (BO), and compassion satisfaction (CS) are interrelated phenomena that impact personal and professional performance. The CF and Satisfaction Self-Test and a demographic questionnaire were distributed electronically to pediatric hematology-oncology physicians nationally. Linear regression models for CF, BO, and CS as a function of potential predictors were constructed. Survey response rate was 28%. Female sex, BO score, distress about a "clinical situation," and "teaching" were associated with higher CF scores. "Administrative activities" were associated with lower CF scores. CF score, and distress about "administrative burden/academic stress" and "coworkers" were associated with higher BO scores. CS score and "socializing" were associated with lower BO scores. "Exercise," "socializing," and "talking with partner" were associated with higher CS scores. CF and BO scores, emotional depletion, and distress about the "work environment" and "administrative/academic burden" were associated with lower CS scores. Our data highlights the importance of strong social connections at work and at home to decrease BO and enhance CS. Professional development in leadership, communication, and conflict resolution, as well as "team building" events may perpetuate coworker relationships. Education about the importance of connectedness and self-care should begin early in medical education to cultivate robust coping mechanisms in trainees.


Asunto(s)
Agotamiento Profesional , Desgaste por Empatía , Satisfacción en el Trabajo , Médicos , Encuestas y Cuestionarios , Adulto , Agotamiento Profesional/epidemiología , Agotamiento Profesional/psicología , Niño , Desgaste por Empatía/epidemiología , Desgaste por Empatía/psicología , Estudios Transversales , Femenino , Hematología , Humanos , Masculino , Oncología Médica , Persona de Mediana Edad , Pediatría , Estados Unidos/epidemiología
6.
Pediatr Crit Care Med ; 20(3): 213-222, 2019 03.
Artículo en Inglés | MEDLINE | ID: mdl-30418339

RESUMEN

OBJECTIVES: To determine the prevalence of compassion fatigue, burnout, and compassion satisfaction and identify potential personal and professional predictors of these phenomena in pediatric critical care providers. DESIGN: Cross-sectional, online survey. SETTING: Pediatric critical care practices in the United States. SUBJECTS: Pediatric critical care fellows and attending physicians. INTERVENTIONS: None. MEASUREMENT AND MAIN RESULTS: A modified Compassion Fatigue and Satisfaction Self-Test for Helpers and a questionnaire of personal and professional characteristics were distributed electronically to pediatric critical care physicians nationally. Prevalence of these phenomena was calculated. Hierarchical linear regression models for compassion fatigue, burnout, and compassion satisfaction as a function of potential risk factors were constructed. The survey response rate was 35.7%. The prevalence of compassion fatigue, burnout, and compassion satisfaction was 25.7%, 23.2%, 16.8%, respectively. Burnout score, emotional depletion, and distress about a patient and/or the physical work environment were each significant determinants of higher Compassion Fatigue scores. Preparing for didactics, Compassion Fatigue score, distress about administrative issues and/or coworkers, and "self-care is not a priority" were each significant determinants of higher burnout scores, whereas female sex, Compassion Satisfaction score, and distress about the physical work environment were each significant determinants of lower burnout scores. Prayer/meditation, talking with colleagues, senior faculty level, and student and/or chaplain involvement when delivering bad news were each significant predictors of higher Compassion Satisfaction scores, whereas female sex, burnout score, emotional depletion, and distress about coworkers were each significant predictors of lower Compassion Satisfaction scores. CONCLUSIONS: In our population, chronic exposure to distress in patients and families puts pediatric critical care physicians at risk for compassion fatigue and low compassion satisfaction. Awareness of compassion fatigue, burnout, and compassion satisfaction and their predictors may benefit providers both personally and professionally by allowing them to proactively manage their distress.


Asunto(s)
Agotamiento Profesional/epidemiología , Desgaste por Empatía/epidemiología , Cuidados Críticos/psicología , Satisfacción en el Trabajo , Cuerpo Médico de Hospitales/psicología , Adulto , Factores de Edad , Estudios Transversales , Empatía , Femenino , Humanos , Unidades de Cuidado Intensivo Pediátrico , Relaciones Interpersonales , Masculino , Persona de Mediana Edad , Calidad de Vida , Factores de Riesgo , Factores Sexuales , Estados Unidos , Lugar de Trabajo/psicología
7.
Palliat Support Care ; 17(3): 269-275, 2019 06.
Artículo en Inglés | MEDLINE | ID: mdl-29397055

RESUMEN

OBJECTIVE: Compassion fatigue (CF) is secondary traumatic distress experienced by providers from contact with patients' suffering. Burnout (BO) is job-related distress resulting from uncontrollable workplace factors that manifest in career dissatisfaction. Compassion satisfaction (CS) is emotional fulfillment derived from caring for others. The literature on BO in healthcare providers is extensive, whereas CF and CS have not been comprehensively studied. Because of ongoing exposure to patient and family distress, pediatric palliative care (PPC) providers may be at particular risk for CF. We conducted a cross-sectional pilot study of CF, BO, and CS among PPC providers across the United States. METHOD: The Compassion Fatigue and Satisfaction Self-Test for Helpers and a questionnaire of professional and personal characteristics were distributed electronically and anonymously to PPC physicians and nurses. Logistic and linear regression models for CF, BO, and CS as a function of potential risk factors were constructed. RESULTS: The survey response rate was 39%, primarily consisting of female, Caucasian providers. The prevalence of CF, BO, and CS was 18%, 12%, and 25%, respectively. Distress about a "clinical situation," physical exhaustion, and personal loss were identified as significant determinants of CF. Distress about "coworkers," emotional depletion, social isolation, and "recent involvement in a clinical situation in which life-prolonging activities were not introduced" were significant determinants of BO. Physical exhaustion, personal history of trauma, "recent involvement in a clinical situation in which life-prolonging activities were not introduced," and not discussing distressing issues were significant predictors of lower CS scores.Significance of resultsCF and BO directly influence the well-being and professional performance of PPC providers. To provide effective compassionate care to patients, PPC providers must be attentive to predictors of these phenomena. Further work is needed to explore additional causes of CF, BO, and CS in PPC providers as well as potential interventions.


Asunto(s)
Agotamiento Profesional/psicología , Desgaste por Empatía/psicología , Personal de Salud/psicología , Adulto , Agotamiento Profesional/prevención & control , Desgaste por Empatía/etiología , Estudios Transversales , Femenino , Personal de Salud/estadística & datos numéricos , Humanos , Satisfacción en el Trabajo , Masculino , Persona de Mediana Edad , Cuidados Paliativos/métodos , Cuidados Paliativos/psicología , Cuidados Paliativos/normas , Pediatría/métodos , Proyectos Piloto , Psicometría/instrumentación , Psicometría/métodos , Encuestas y Cuestionarios , Estados Unidos
9.
J Pediatr Hematol Oncol ; 38(1): 38-42, 2016 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-26670840

RESUMEN

INTRODUCTION: Ewing sarcoma (ES) is the second most common bone tumor in children. Current chemotherapeutic regimens include high-dose anthracyclines and alkylating agents with significant variation in treatment length. The Memorial Sloan Kettering Cancer Center P6 regimen (MSKCC P6) treatment protocol is a highly aggressive regimen given over 21 weeks only. We present the outcome of ES patients treated in our center with this protocol over the last 15 years. PROCEDURE: We retrospectively analyzed data on the presentation, patient characteristics, treatment, and outcome of all ES patients treated according to the MSKCC P6 regimen from 1999 to 2014. RESULTS: Of 48 patients, 37 (77%) presented with a nonmetastatic disease and 26 (54%) with tumor located in the extremities. The 5-year overall survival (OS) of the entire cohort was 55.9% ± 8%. Nonmetastatic disease conferred a better prognosis with a 5-year OS of 68.4% ± 8.5%. Patients with a nonmetastatic extremity tumor had the most favorable outcome with 5-year OS of 72.2% ± 9.8%. CONCLUSION: The outcome of ES patients after a short aggressive course of chemotherapy (the MSKCC P6 protocol), is comparable to that following other first-line treatment regimens in use, with potentially fewer long-term adverse events.


Asunto(s)
Protocolos de Quimioterapia Combinada Antineoplásica/uso terapéutico , Neoplasias Óseas/tratamiento farmacológico , Sarcoma de Ewing/tratamiento farmacológico , Adolescente , Neoplasias Óseas/mortalidad , Niño , Preescolar , Ciclofosfamida/uso terapéutico , Doxorrubicina/uso terapéutico , Etopósido/uso terapéutico , Femenino , Humanos , Ifosfamida/uso terapéutico , Estimación de Kaplan-Meier , Masculino , Pronóstico , Estudios Retrospectivos , Sarcoma de Ewing/mortalidad , Resultado del Tratamiento , Vincristina/uso terapéutico
11.
Isr Med Assoc J ; 16(1): 26-32, 2014 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-24575501

RESUMEN

BACKGROUND: In osteosarcoma the histological response, measured by the percentage of tumor necrosis, constitutes one of the most significant predictive factors, with better survival in patients whose tumor necrosis is > or = 90%. OBJECTIVES: To determine if the decrease rate of serum alkaline phosphatase (SAP) levels during the first month of neoadjuvant chemotherapy could serve as a predictive indicator of tumor necrosis and clinical outcome. METHODS: We analyzed the medical files of 53 osteosarcoma patients (19 females, 34 males) (median age 16 years, range 8-24); the disease was metastatic in 12 and localized in the other 41. RESULTS: The histological responses were good in 38 patients (71.7%) and poor in 15 (28.3%). At a median follow-up of 50 months, 34 patients (64.2%) had no evidence of disease and 19 (35.8%) had died from the disease. High levels of SAP at diagnosis correlated with worse survival (P = 0.002). There was no difference in overall survival between patients whose SAP decrease rate was > 25% and those with a rate < 25% (P = 0.14). Among female patients, "rapid" SAP responders had better survival than "slow" responders (P= 0.026). In patients with metastases the SAP decrease rate was positively correlated with survival (P = 0.042). CONCLUSIONS: There was no evidence that "rapid" SAP responders had a higher percentage of tumor necrosis than "slow" responders, although female "rapid" SAP responders had a better prognosis than "slow" responders. Patients with metastases at presentation and "rapid" SAP response had better prognoses.


Asunto(s)
Fosfatasa Alcalina/metabolismo , Antineoplásicos/uso terapéutico , Terapia Neoadyuvante/métodos , Osteosarcoma/patología , Adolescente , Niño , Femenino , Estudios de Seguimiento , Humanos , Masculino , Necrosis/patología , Metástasis de la Neoplasia , Osteosarcoma/tratamiento farmacológico , Pronóstico , Estudios Retrospectivos , Factores Sexuales , Tasa de Supervivencia , Resultado del Tratamiento , Adulto Joven
12.
Altern Ther Health Med ; 19(3): 21-4, 2013.
Artículo en Inglés | MEDLINE | ID: mdl-23709456

RESUMEN

BACKGROUND: Oral mucositis is a common complication of cancer therapy. Animal models suggest that curcumin may prevent oral mucositis. To date, no clinical studies have been reported. OBJECTIVE: The primary aim of this pilot study was to assess the tolerability of a curcumin mouthwash. The secondary aim was to describe oral mucositis in pediatric patients undergoing doxorubicin-containing chemotherapy who were using the curcumin mouthwash. METHOD: The research team had originally designed a placebo-controlled study, but gastrointestinal adverse events (nausea and vomiting) affected the compliance of the first three participants who entered the study. An independent researcher found that all three had received the placebo. Believing it unethical to continue using the study's original design, the research team discontinued the control group, and the resulting study is comparable to a case series. SETTING: The research team performed the study at Hadassah University Medical Center in Jerusalem, Israel. PARTICIPANTS: Participants were seven pediatric and young-adult oncology patients. INTERVENTION: In addition to standard, preventive oral care (chlorhexidine 0.2% mouthwash for 30 s twice per day), participants also used 10 drops of Curcumall twice per day in a mouthwash during treatment with highdose chemotherapy. PRIMARY OUTCOME MEASURES: Oral mucositis was assessed on days 0, 7, 10, 14, and 21. The World Health Organization (WHO) scale, the Oral Mucositis Assessment Scale (OMAS), and a Visual Analog pain scale (VAS; patient reporting scale of 0-10) were used. Adverse events were tracked. RESULTS: No oral adverse events were documented. No systemic adverse events that possibly could be related to the use of the curcumin mouthwash were observed. In the four patients who fulfilled the compliance criteria, the WHO, OMAS and VAS scores were lower than the severity of oral mucositis previously reported in the literature. Four out of the five participants developed OM, but the values were low, reflecting a relatively mild case. CONCLUSION: In this study, the research team suggested that curcumin mouthwash was safe and well-tolerated. More research is warranted about the efficacy of topical curcumin in the prevention of oral mucositis.


Asunto(s)
Curcumina/administración & dosificación , Doxorrubicina/efectos adversos , Mucosa Bucal/efectos de los fármacos , Estomatitis/inducido químicamente , Estomatitis/tratamiento farmacológico , Administración Tópica , Adolescente , Antibióticos Antineoplásicos/efectos adversos , Niño , Femenino , Humanos , Masculino , Dimensión del Dolor , Proyectos Piloto , Sarcoma/tratamiento farmacológico , Resultado del Tratamiento , Adulto Joven
13.
Pediatr Blood Cancer ; 59(1): 182-4, 2012 Jul 15.
Artículo en Inglés | MEDLINE | ID: mdl-22605456

RESUMEN

Infants with 4s neuroblastoma (NB) and massive hepatomegaly have a guarded prognosis and mortality approaches 30%. We report on eight patients with 4s NB and massive hepatomegaly treated with multiple modalities. One patient had spontaneous tumor regression. Three patients had progressive disease and responded to chemotherapy. Four patients progressed despite intravenous chemotherapy, of whom two died, and two were salvaged with hepatic intra-arterial chemoembolization. Treatment of infants with stage 4s NB with massive hepatomegaly should be individualized based on disease course. A sequential approach with observation, intravenous chemotherapy, and intra-arterial chemoembolization, may improve the outcome of these infants.


Asunto(s)
Algoritmos , Hepatomegalia/terapia , Neuroblastoma/terapia , Terapia Combinada/métodos , Femenino , Hepatomegalia/mortalidad , Hepatomegalia/patología , Humanos , Lactante , Recién Nacido , Masculino , Estadificación de Neoplasias , Neuroblastoma/mortalidad , Neuroblastoma/patología , Estudios Retrospectivos
14.
Ann Palliat Med ; 11(2): 918-926, 2022 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-34263644

RESUMEN

Care for pediatric patients with serious or potentially life-limiting illness involves the interplay of multiple medical and surgical teams within the hospital. Pediatric surgeons are capable of performing procedures that can improve the quality of life for children facing serious illness, but which also carry the potential for significant risk and burden. Patients and families are often faced with decisions about invasive surgical procedures and interventions, stressing the need for seamless collaboration between palliative care and surgical providers. Equally important is the need for clear and open-ended communication with patients and families by all medical teams to determine if potential surgical procedures and interventions align with their goals and to ensure that the perceived benefits of interventions outweigh any risks. Over the last two decades, pediatric palliative care has grown into a thriving medical subspecialty Despite the importance of collaborative care, there is lack of literature on the interaction of pediatric surgery and palliative care and the role of pediatric surgeons in providing primary palliative care. This review defines surgical pediatric palliative care, and provides an in-depth discussion of the unique complexities involved in caring for children with serious and potentially life-limiting illness, while highlighting specific challenges through detailed case presentations.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Niño , Comunicación , Humanos , Cuidados Paliativos/métodos , Calidad de Vida
15.
J Palliat Med ; 24(1): 40-45, 2021 01.
Artículo en Inglés | MEDLINE | ID: mdl-32552386

RESUMEN

Background: The experience of starting and growing a pediatric palliative care program (PPCP) has changed over the last 10 years as rapid increases of patient volume have amplified challenges related to staffing, funding, standards of practice, team resilience, moral injury, and burnout. These challenges have stretched new directors' leadership skills, yet, guidance in the literature on identifying and managing these challenges is limited. Methods: A convenience sample of 15 PPCP directors who assumed their duties within the last 10 years were first asked the following open-ended question: What do you wish you had known before starting or taking over leadership of a PPCP? Responses were grouped into themes based on similarity of content. Participants then ranked these themes based on importance, and an online discussion further elucidated the top ten themes. Results: Thirteen directors responded (86.7%; 69% female). The median age of their current-state PPCP was 5.1 years (range: 0.3-9.3), and the median number of covered pediatric-specific hospital beds was 283 (range: 170-630). Their responses generated 51 distinct items, grouped into 17 themes. Themes ranked as most important included "Learn how to manage, not just lead," "Negotiate everything before you sign anything," and "Balance patient volume with scope of practice." Conclusion: These themes regarding challenges and opportunities PPCP directors encountered in the current era of program growth can be used as a guide for program development, a self-assessment tool for program directors, a needs-assessment for program leadership, and a blueprint for educational offerings for PPCP directors.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Niño , Preescolar , Femenino , Humanos , Lactante , Liderazgo , Masculino , Evaluación de Necesidades , Desarrollo de Programa
16.
Pediatr Blood Cancer ; 54(2): 326-8, 2010 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-19890904

RESUMEN

We describe a 12-year-old boy male who presented with an expressive dysphasia after completion of treatment for unifocal Ewing sarcoma. CNS vasculitis was diagnosed by MRI/MRA and cerebral angiography. Extensive rheumatologic work-up failed to identify an underlying primary process. Restaging studies showed no evidence of tumor. Complete neurologic recovery was achieved on prednisone. Four months later the patient developed overt, extensive metastases, confirmed by biopsy to represent recurrent Ewing sarcoma. Despite intensive therapy the patient succumbed 6 months later. This case demonstrates the unique finding of isolated CNS vasculitis as a presenting sign of Ewing sarcoma.


Asunto(s)
Síndromes Paraneoplásicos del Sistema Nervioso/etiología , Sarcoma de Ewing/complicaciones , Vasculitis del Sistema Nervioso Central/etiología , Afasia/etiología , Angiografía Cerebral , Niño , Resultado Fatal , Humanos , Imagen por Resonancia Magnética , Masculino , Recurrencia , Sarcoma de Ewing/patología
17.
Pediatr Blood Cancer ; 54(7): 1048-9, 2010 Jul 01.
Artículo en Inglés | MEDLINE | ID: mdl-20108342

RESUMEN

Children with Down syndrome (DS) have a unique form of acute megakaryocytic leukemia (AMKL) characterized by the presence of mutations in the GATA1 gene leading to increased chemosensitivity and a favorable outcome. We describe an 8-month-old male with DS who was diagnosed with AMKL without a mutation in the GATA1 gene. The patient was treated according to the DS-AML-regimen but his disease progressed and he succumbed 9 months later. This rare case of DS AMKL without a GATA1 mutation with an unfavorable outcome suggests that GATA1 testing may play a useful role in initial stratification.


Asunto(s)
Síndrome de Down/complicaciones , Factor de Transcripción GATA1/genética , Leucemia Megacarioblástica Aguda/complicaciones , Antineoplásicos/uso terapéutico , Resistencia a Antineoplásicos , Resultado Fatal , Humanos , Lactante , Leucemia Megacarioblástica Aguda/tratamiento farmacológico , Masculino , Mutación
18.
Acad Emerg Med ; 26(7): 732-743, 2019 07.
Artículo en Inglés | MEDLINE | ID: mdl-31204794

RESUMEN

OBJECTIVES: The objective was to determine the prevalence of compassion fatigue (CF), burnout (BO), and compassion satisfaction (CS) and identify potential personal and professional predictors of these phenomena in pediatric emergency medicine (PEM) physicians. METHODS: A modified Compassion Fatigue and Satisfaction Self-Test for Helpers and a questionnaire of personal and professional characteristics were distributed electronically to PEM physicians nationally. The prevalence of these phenomena was calculated. Hierarchical linear regression models for CF, BO, and CS as a function of potential risk factors were constructed. RESULTS: The final analyzable survey rate represented 22.7% of the physicians invited to participate. The prevalences of CF, BO, and CS were 16.4, 21.5, and 18.5%, respectively. BO score, distress about a "clinical situation," "physical work environment," and engaging in prayer/meditation were each significant determinants of higher CF scores, whereas "socializing with family/friends" was significantly associated with lower CF scores. CF score, emotional depletion, and distress due to "coworkers" were each significant determinants of higher BO scores, whereas CS score and "talking with a family member" as a means of self-care were significantly associated with lower BO scores. Socializing with family/friends and >20 years as PEM provider were each significant determinants of higher CS scores, whereas BO score, emotional depletion, distress about the physical work environment and "administrative issues," 10% to 24% of time spent caring for pediatric patients, and "talking with life partner" about work-related distress were each significant determinants of lower CS scores. We acknowledge that the generalizability of our findings is limited by the sample size and by the fact that participants were largely female, Caucasian, and junior faculty and worked in academic medical centers. CONCLUSIONS: PEM physicians are at risk for developing CF, BO, and low CS. Proactive awareness of these phenomena and their predictors may allow providers to better manage the unique challenges and emotional stressors of the pediatric ED to enhance personal well-being and professional performance.


Asunto(s)
Agotamiento Profesional/epidemiología , Desgaste por Empatía/epidemiología , Medicina de Urgencia Pediátrica/estadística & datos numéricos , Adulto , Agotamiento Profesional/diagnóstico , Agotamiento Profesional/psicología , Niño , Desgaste por Empatía/diagnóstico , Desgaste por Empatía/psicología , Estudios Transversales , Empatía , Femenino , Humanos , Masculino , Persona de Mediana Edad , Satisfacción Personal , Prevalencia , Factores de Riesgo , Encuestas y Cuestionarios , Estados Unidos/epidemiología
19.
J Pain Symptom Manage ; 55(6): 1599-1608, 2018 06.
Artículo en Inglés | MEDLINE | ID: mdl-29428188

RESUMEN

CONTEXT: Supporting patients' spiritual needs is central to palliative care. Adolescents and young adults (AYAs) may be developing their spiritual identities; it is unclear how to navigate conversations concerning their spiritual needs. OBJECTIVES: To 1) describe spiritual narratives among AYAs based on their self-identification as religious, spiritual, both, or neither and 2) identify language to support AYAs' spiritual needs in keeping with their self-identities. METHODS: In this mixed-methods, prospective, longitudinal cohort study, AYAs (14-25 years old) with newly diagnosed cancer self-reported their "religiousness" and "spirituality." One-on-one, semistructured interviews were conducted at three time points (within 60 days of diagnosis, six to 12 months, and 12-18 months later) and included queries about spirituality, God/prayer, meaning from illness, and evolving self-identity. Post hoc directed content analysis informed a framework for approaching religious/spiritual discussions. RESULTS: Seventeen AYAs (mean age 17.1 years, SD = 2.7, 47% male) participated in 44 interviews. Of n = 16 with concurrent survey responses, five (31%) self-identified as both "religious and spiritual," five (31%) as "spiritual, not religious," one (6%) as "religious, not spiritual," and five (31%) as neither. Those who endorsed religiousness tended to cite faith as a source of strength, whereas many who declined this self-identity explicitly questioned their preexisting beliefs. Regardless of self-identified "religiousness" or "spirituality," most participants endorsed quests for meaning, purpose, and/or legacy, and all included constructs of hope in their narratives. CONCLUSION: AYA self-identities evolve during the illness experience. When words such as "religion" and "spirituality" do not fit, explicitly exploring hopes, worries, meaning, and changing life perspectives may be a promising alternative.


Asunto(s)
Comunicación , Esperanza , Neoplasias/psicología , Espiritualidad , Adolescente , Femenino , Humanos , Entrevistas como Asunto , Estudios Longitudinales , Masculino , Neoplasias/terapia , Cuidados Paliativos , Estudios Prospectivos , Calidad de Vida , Religión y Medicina , Estudios Retrospectivos , Autocontrol , Adulto Joven
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