Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 124
Filtrar
Más filtros

Bases de datos
Tipo del documento
Intervalo de año de publicación
1.
J Pediatr ; 271: 114038, 2024 Mar 28.
Artículo en Inglés | MEDLINE | ID: mdl-38554745

RESUMEN

OBJECTIVE: To determine which groups of children with cancer for whom to apply the newly developed quality measures (QMs) for end-of-life (EOL) care. STUDY DESIGN: In a series of nominal groups, panelists answered the question: "Which children, diagnoses, conditions, or prognoses should be included when examining the quality of EOL care for children with cancer?" In each group, individual panelists proposed answers to the question. After collating individual responses, each panelist ranked their 5 top answers and points were assigned (5 pts for the best answer, 4 pts the second best, etc.). A team of pediatric oncology and palliative care clinician-scientists developed and applied a coding structure for responses and associated themes and subthemes for responses. RESULTS: We conducted 5 nominal groups with a total of 44 participants. Most participants identified as female (88%) and non-Hispanic White (86%). Seventy-nine percent were clinicians, mainly in pediatric palliative care, pediatric oncology, or hospice; 40% were researchers and 12% were bereaved parents. Responses fell into 5 themes: (1) poor prognosis cancer; (2) specific treatment scenarios; (3) certain populations; (4) certain symptoms; and (5) specific utilization scenarios. Poor prognosis cancer and specific treatment scenarios received the most points (320 pts [49%] and 147 pts [23%], respectively). CONCLUSIONS: Participants developed a framework to identify which children should be included in EOL QMs for children with cancer. The deliberate identification of the denominator for pediatric QMs serves as a potent tool for enhancing quality, conducting research, and developing clinical programs.

2.
Pediatr Blood Cancer ; 71(8): e31082, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38804869

RESUMEN

INTRODUCTION: Children, adolescents, and young adults (CAYAs) with Down syndrome (DS) and hematologic malignancies are particularly vulnerable to infections and related complications. There are limited data regarding COVID-19 infections in this group. We aimed to understand the clinical course of COVID-19 in this population. METHODS: This observational study leverages the de-identified clinical and sociodemographic data captured by the Pediatric Oncology COVID-19 Case Report Registry (POCC) regarding CAYAs with cancer and COVID-19. We evaluated CAYAs (≤21 years at COVID-19 infection) with hematologic malignancies and COVID-19 reported from April 1, 2020 to May 2, 2023, comparing those with and without DS. Using multivariable logistic regression, we examined rates of hospitalization, intensive care unit (ICU) admission, respiratory support, and changes in cancer-directed therapy. RESULTS: Among 1408 CAYAs with hematologic malignancies, 55 had DS (CAYA-DS). CAYA-DS had higher rates of hospitalization, ICU admission, and respiratory support (p < .001) than CAYAs without DS. Similarly, multivariable analyses found higher odds of hospitalization (odds ratio [OR] = 2.8, 95% confidence interval [CI]: 1.5-5.1), ICU admission (OR = 4.2, 95% CI: 1.9-9.1), and need for respiratory support (OR = 4.2, 95% CI: 2.0-8.8) among CAYA-DS. Modifications to cancer-directed therapy were more common among CAYA-DS when related to neutropenia (p = .001), but not when unrelated to neutropenia (p = .88); CAYA-DS did not have higher odds of changes to cancer-directed therapy (OR = 1.20, 95% CI: 0.7-2.1). CONCLUSIONS: We identify CAYA-DS with hematologic malignancies as a vulnerable subpopulation at greater risk for severe COVID-19 infection. This can inform conversations with patients and families regarding therapeutic and preventive measures, as well as the risks and benefits of modifying chemotherapy in the setting of COVID-19.


Asunto(s)
COVID-19 , Síndrome de Down , Neoplasias Hematológicas , Hospitalización , SARS-CoV-2 , Humanos , COVID-19/epidemiología , COVID-19/complicaciones , Neoplasias Hematológicas/epidemiología , Neoplasias Hematológicas/terapia , Neoplasias Hematológicas/complicaciones , Adolescente , Masculino , Síndrome de Down/complicaciones , Síndrome de Down/epidemiología , Femenino , Niño , Adulto Joven , Hospitalización/estadística & datos numéricos , Adulto , Preescolar , Lactante
3.
Environ Sci Technol ; 58(22): 9714-9722, 2024 Jun 04.
Artículo en Inglés | MEDLINE | ID: mdl-38780409

RESUMEN

Gold nanoparticles (Au-NPs) are used as catalysts for a diverse range of industrial applications. Currently, Au-NPs are synthesized chemically, but studies have shown that plants fed Au deposit, this element naturally as NPs within their tissues. The resulting plant material can be used to make biomass-derived catalysts. In vitro studies have shown that the addition of specific, short (∼10 amino acid) peptide/s to solutions can be used to control the NP size and shape, factors that can be used to optimize catalysts for different processes. Introducing these peptides into the model plant species, Arabidopsis thaliana (Arabidopsis), allows us to regulate the diameter of nanoparticles within the plant itself, consequently influencing the catalytic performance in the resulting pyrolyzed biomass. Furthermore, we show that overexpressing the copper and gold COPPER TRANSPORTER 2 (COPT2) in Arabidopsis increases the uptake of these metals. Adding value to the Au-rich biomass offers the potential to make plant-based remediation and stabilization of mine wastes financially feasible. Thus, this study represents a significant step toward engineering plants for the sustainable recovery of finite and valuable elements from our environment.


Asunto(s)
Arabidopsis , Oro , Nanopartículas del Metal , Oro/química , Nanopartículas del Metal/química , Arabidopsis/metabolismo , Catálisis , Biomasa , Tamaño de la Partícula , Cobre/química
4.
Nano Lett ; 23(22): 10633-10641, 2023 Nov 22.
Artículo en Inglés | MEDLINE | ID: mdl-37916770

RESUMEN

Fluorescence microscopy enables specific visualization of proteins in living cells and has played an important role in our understanding of the protein subcellular location and function. Some proteins, however, show altered localization or function when labeled using direct fusions to fluorescent proteins, making them difficult to study in live cells. Additionally, the resolution of fluorescence microscopy is limited to ∼200 nm, which is 2 orders of magnitude larger than the size of most proteins. To circumvent these challenges, we previously developed LIVE-PAINT, a live-cell super-resolution approach that takes advantage of short interacting peptides to transiently bind a fluorescent protein to the protein-of-interest. Here, we successfully use LIVE-PAINT to image yeast membrane proteins that do not tolerate the direct fusion of a fluorescent protein by using peptide tags as short as 5-residues. We also demonstrate that it is possible to resolve multiple proteins at the nanoscale concurrently using orthogonal peptide interaction pairs.


Asunto(s)
Péptidos , Proteínas , Diagnóstico por Imagen , Saccharomyces cerevisiae , Colorantes Fluorescentes/química
5.
Death Stud ; : 1-9, 2024 Jul 03.
Artículo en Inglés | MEDLINE | ID: mdl-38958178

RESUMEN

Parents experience lasting psychological distress after a child's death from cancer. Limited evidence exists regarding difficult life events, duration of psychosocial impacts, and associated risk factors among bereaved parents. Alex's Lemonade Stand Foundation surveyed self-selected, bereaved parents regarding difficult life events and psychosocial wellbeing (life satisfaction, unanswered questions, and missing the care team) through a public, cross-sectional survey. 176 bereaved parents (89% mothers) participated a median of 7 y after their child's death. The most difficult events were family vacations (80%), their child's birthday (80%), and anniversary of their child's death (76%). Only the latter did not improve with time. Greater life satisfaction was associated with male sex (ARR = 1.2, 95% CI:1.1-1.4) and being married/partnered (ARR = 1.2, 95% CI = 1.0-1.3). Having unanswered questions and missing the child's team were associated with annual income <$50,000 (ARR = 1.2, 95% CI:1.1-1.2; ARR = 1.2, 95% CI:1.0-1.3, respectively). Pediatric oncology programs need robust bereavement programs that include prolonged contact with families.

6.
Pediatr Blood Cancer ; 70(2): e30066, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-36510751

RESUMEN

BACKGROUND: Caregivers experience financial hardship during a child's cancer treatment and after their child's death. These bereaved caregivers also experience negative psychosocial outcomes following the death of a child, but the relationship between financial hardship and negative psychosocial outcomes is poorly understood in this population. METHODS: We surveyed self-selected bereaved caregivers as part of a publicly posted survey through Alex's Lemonade Stand Foundation in order to explore family experiences after losing a child to cancer. The survey contained questions regarding parent psychosocial and financial outcomes following their child's death. RESULTS: One-hundred seventy-six caregivers completed the survey a median of 7 years after their child's death. The majority were female (91%), non-Hispanic White (97%), and married or living with a domestic partner (76%). Overall, 31% of caregivers reported that their child's death significantly impacted the financial well-being of their family, 23% experienced a decrease in income following their child's death, and 14% were still paying medical expenses. Financial hardship that the caregiver attributed to the child's death was associated with feeling lonely and isolated (adjusted relative risk [ARR] = 1.7, 95% CI: 1.1-2.7) and living day to day (ARR = 1.8, 95% CI: 1.3-2.5), even after adjustment for household income and time since child's death. CONCLUSIONS: Caregivers experience multiple financial hardships following the death of a child to cancer, which endure for years after the child's death. These hardships are associated with negative psychosocial outcomes, demonstrating the need for both financial and psychosocial interventions for caregivers following the death of a child to cancer.


Asunto(s)
Estrés Financiero , Neoplasias , Niño , Humanos , Masculino , Femenino , Padres/psicología , Renta , Cuidadores/psicología , Encuestas y Cuestionarios , Neoplasias/terapia , Neoplasias/psicología
7.
Ann Pharmacother ; 57(7): 837-846, 2023 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-36314233

RESUMEN

OBJECTIVE: To provide pharmacists and other health care professionals with the knowledge required to minimize the risk of prolonged opioid use following total hip arthroplasty (THA) and total knee arthroplasty (TKA). DATA SOURCES: A literature search of PubMed and Embase was performed, and included the search terms: (opioid OR opiate OR opium) AND (risk factor OR predict*) AND (arthroplasty OR replacement) NOT shoulder. STUDY SELECTION AND DATA EXTRACTION: Randomized control trials, cohort studies (both prospective and retrospective), systematic reviews, and meta-analyses were included if risk ratios (RRs) or odds ratios (ORs) were reported and published within the last 5 years. DATA SYNTHESIS: ]Twenty studies met inclusion criteria, including 2 meta-analyses and 2 prospective studies. There were several risk factors that overlapped between studies and presented clinically significant risks for prolonged opioid use following THA and TKA surgery. Of these, age < 65 (RRs: 1.15-9.36), preoperative opioid use (RRs: 1.09-7.81), larger quantities of opioids prescribed at discharge (RRs: 1.26-8.81), and TKA surgery (RRs: 1.73-6.07) were the most significant. Several risk factors were recently described, including migraines (RRs: 1.14-5.11) and fibromyalgia (RRs: 1.1-2.3) that may be of interest for further research. RELEVANCE TO PATIENT CARE AND CLINICAL PRACTICE: This review presents a discussion of the factors associated with prolonged opioid use following THA and TKA surgeries, which are among the most common orthopedic surgeries. CONCLUSIONS: Prescribers should carefully consider patient-specific factors when prescribing opioids as there are several factors, including age, surgery type, and medical conditions that can predispose patients to prolonged opioid use.


Asunto(s)
Artroplastia de Reemplazo de Cadera , Artroplastia de Reemplazo de Rodilla , Trastornos Relacionados con Opioides , Humanos , Artroplastia de Reemplazo de Rodilla/efectos adversos , Artroplastia de Reemplazo de Cadera/efectos adversos , Analgésicos Opioides/efectos adversos , Estudios Prospectivos , Estudios Retrospectivos , Dolor Postoperatorio/tratamiento farmacológico , Trastornos Relacionados con Opioides/tratamiento farmacológico , Factores de Riesgo
8.
Nicotine Tob Res ; 25(2): 339-344, 2023 01 05.
Artículo en Inglés | MEDLINE | ID: mdl-36218530

RESUMEN

BACKGROUND: Existing evidence suggests that while the coronavirus disease 2019 (COVID-19) pandemic triggered quit attempts among many smokers, it led some to smoke more and others to relapse back to smoking. These diverse effects have the potential to have a long-term impact on individuals' smoking and vaping behaviors. AIMS AND METHODS: This study explored the effect of COVID-19 on smokers and vapers, vape shops (VS), and stop smoking services (SSS). A total of 39 semi-structured interviews were conducted with stop-smoking practitioners, tobacco control leads, smokers and/or vapers, and vape shop owners. Interviews were transcribed verbatim and analyzed thematically. RESULTS: Four themes were identified: Lockdown as a barrier to becoming or remaining smoke-free; COVID as a catalyst for quitting and remaining smoke-free; changes in vaping and challenges for vapers and VS; and changes and challenges for stop smoking support. Fear of COVID resulting in severe health implications for smokers facilitated behavior change; however, the boredom and monotony of lockdown and associated stress created difficulties in remaining a smoke free. Results showed that the enforced switch from face-to-face to the remote provision of SSS was beneficial for improving engagement, particularly for vulnerable groups such as pregnant women. Stop smoking professionals and vapers disagreed with the forced closure of VS because it created unnecessary difficulties for vapers to access supplies. CONCLUSIONS: COVID-19 was both a barrier and facilitator for smoking cessation. Remote provision of SSS implemented due to lockdown was beneficial for hard-to-reach groups; services should look to incorporate these changes into day-to-day practice. IMPLICATIONS: This study is one of the first to explore how the COVID-19 pandemic directly affected smokers, vapers, SSS, tobacco control leads, and VS. It provides evidence for the continued use of the remote provision of smoking cessation services to increase engagement among hard-to-reach groups and provides information on how pandemics can be a catalyst for health behavior change. This study is unique in that it incorporates the views of different stakeholders.


Asunto(s)
COVID-19 , Sistemas Electrónicos de Liberación de Nicotina , Cese del Hábito de Fumar , Vapeo , Embarazo , Humanos , Femenino , Pandemias , Vapeo/epidemiología , Cese del Hábito de Fumar/métodos , COVID-19/epidemiología , Control de Enfermedades Transmisibles , Reino Unido/epidemiología
9.
Wilderness Environ Med ; 34(3): 295-302, 2023 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-37211524

RESUMEN

INTRODUCTION: Ski patrols are tasked with substantial challenges: distance from definitive care, complex extrications, and winter environments. Rules for US ski patrols stipulate that ≥1 persons be trained in basic first aid, but no further regulations regarding the specifics of provided medical care exist. This project investigated patroller training, patient care, and medical direction of US ski patrols through a survey of ski patrol directors and medical directors. METHODS: Participants were contacted via email, phone, and personal contacts. After consultation with known ski patrol directors and medical directors for question guidance, 2 separate institutional review board-approved surveys were designed: 1 for ski patrol directors and 1 for ski patrol medical directors, containing 28 and 15 qualitative questions, respectively. The surveys were distributed with a link to the encrypted Qualtrics survey platform. After 2 reminders and 4 mo, results were downloaded from Qualtrics into an Excel spreadsheet. RESULTS: Twenty-two responses from patrol directors and 15 from medical directors were received. The response rate is unknown. Outdoor emergency care certification was the minimum medical training required by 77% of the study participants. Twenty-seven percent of surveyed patrols belonged to an emergency medical service agency. Fifty percent of 11 surveyed ski patrols had a medical director, 6 of whom were board certified in emergency medicine. All surveyed medical directors stated that they assisted with patroller education, and 93% assisted with protocol development. CONCLUSIONS: The surveys demonstrated variability in patroller training, protocols, and medical directorship. The authors questioned whether ski patrols would benefit from increased standardization of care and training, quality improvement programs, and medical directorship.


Asunto(s)
Servicios Médicos de Urgencia , Humanos , Estados Unidos , Encuestas y Cuestionarios , Primeros Auxilios , Atención al Paciente
10.
Cancer ; 128(2): 391-400, 2022 01 15.
Artículo en Inglés | MEDLINE | ID: mdl-34614197

RESUMEN

BACKGROUND: Regional studies show that children with cancer receive medically intense end-of-life (EOL) care, but EOL care patterns, including palliative care utilization in Alabama, remain unknown. METHODS: This was a retrospective study of 233 children (0-19 years) who received cancer-directed therapy at Children's of Alabama and died from 2010 through 2019. Rates and disparities in palliative care utilization and the association between palliative care and intense EOL care, death location, and hospice were examined. RESULTS: The median death age was 11 years; 62% were non-Hispanic White. Forty-one percent had a non-central nervous system (CNS) solid tumor. Fifty-eight percent received palliative care, and 36% received early palliative care (≥30 days before death). Children without relapsed/refractory disease were less likely to receive palliative care than those who had relapsed/refractory disease (adjusted odds ratio [aOR], 0.2; 95% confidence interval [CI], 0.1-0.7). Children with CNS tumors and hematologic malignancies were less likely to have early palliative care (aOR for CNS tumors, 0.4; 95% CI, 0.2-0.7; aOR for hematologic malignancies, 0.3; 95% CI, 0.2-0.7) than children with non-CNS solid tumors. Late palliative care (vs none) was associated with more medically intense care (aOR, 3.3; 95% CI, 1.4-7.8) and hospital death (aOR, 4.8; 95% CI, 1.9-11.6). Early palliative care (vs none) was associated with more hospice enrollment (aOR, 3.4; 95% CI, 1.5-7.6) but not medically intense care (aOR, 1.3; 95% CI, 0.6-2.9) or hospital death (aOR, 1.8; 95% CI, 0.8-3.7). CONCLUSIONS: Fifty-eight percent of children dying of cancer in Alabama receive palliative care, but EOL care varies with the receipt and timing (early vs late) of palliative care. Whether this variation reflects differences in child and family preferences or systemic factors (eg, hospice access) remains unknown.


Asunto(s)
Cuidados Paliativos al Final de la Vida , Neoplasias , Cuidado Terminal , Alabama/epidemiología , Niño , Humanos , Neoplasias/terapia , Cuidados Paliativos , Estudios Retrospectivos
11.
Pediatr Blood Cancer ; 69(8): e29521, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-34962704

RESUMEN

BACKGROUND: Disparities in end-of-life (EOL) care for children with cancer remain understudied. We addressed this gap by examining patterns of EOL care, with a focus on location of death and hospice utilization. METHODS: We used MarketScan - a nationally representative dataset with Medicaid and commercial claims to conduct a retrospective observational study of children with cancer who died between 2011 and 2017 at age ≤21 years. We examined rates of (a) home death, (b) hospice utilization, (c) and medically intense interventions in the last 30 days (e.g., intubation). RESULTS: Of the 1492 children in the cohort, 44% had Medicaid and 56% commercial insurance; 71% carried a solid tumor diagnosis, and 37% were between the ages of 15 and 21 years at the time of death. Forty percent died at home; children with Medicaid were less likely to die at home (relative risk [RR] = 0.82, 95% confidence interval [CI]: 0.73-0.92; reference: commercial). Forty-five percent enrolled in hospice, for a median of 2 days. Hospice enrollment rates did not vary with insurance. However, children with Medicaid spent less time enrolled (incidence rate ratio [IRR] = 0.22, 95% CI: 0.17-0.27). Among children with Medicaid, Black children were less likely to die at home (RR = 0.69, 95% CI: 0.52-0.92) and enroll on hospice (RR = 0.71, 95% CI: 0.55-0.91) than non-Hispanic White children. Medically intense interventions did not vary with insurance or race. CONCLUSION: Only 40% of children with cancer die at home, and the duration of hospice enrollment is short. EOL care varies significantly with insurance. It is imperative that we determine if these patterns and disparities represent EOL preferences, provider biases, or differences in quality or availability of hospice.


Asunto(s)
Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Neoplasias , Cuidado Terminal , Adolescente , Adulto , Niño , Humanos , Seguro de Salud , Neoplasias/terapia , Estudios Retrospectivos , Estados Unidos , Adulto Joven
12.
Pediatr Blood Cancer ; 69(6): e29443, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-34786824

RESUMEN

OBJECTIVE: To explore willingness/hesitancy to vaccinate self and children against severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) among caregivers of childhood cancer survivors (CCS). METHODS: A 19-question survey was sent to caregivers of CCS and completed between February 25 and April 13, 2021. Logistic regression was used to investigate relationships between willingness/hesitancy to vaccinate (a) self and (b) CCS, and demographic variables, confidence in the government and medical community's responses to coronavirus disease 2019 (COVID-19), and factors specific to the CCS community (e.g., previous participation in an investigational therapeutic trial). RESULTS: Caregivers (6% male) from 130 unique families completed the survey. Mean CCS age at survey was 15 years (SD 6.4). Mean CCS age at diagnosis was 4.3 years (SD 4.3). Mean time from CCS diagnosis to survey completion was 10 years (SD 6.2). Twenty-one percent of caregivers expressed hesitancy to vaccinate themselves and 29% expressed hesitancy to vaccinate their CCS. Caregivers expressing confidence in the federal government's response to COVID-19 were six-fold likelier to express willingness to self-vaccinate (p < .001) and were three-fold likelier to express willingness to vaccinate their CCS (p = .011). Qualitative analysis of free-text responses revealed three general themes, including (a) confidence in science, medicine, and vaccination as a strategy for health promotion, (b) confidence in SARS-CoV-2 vaccination and belief that CCS are at greater risk of COVID-19 complications, and (c) concerns about the swiftness of COVID-19 vaccine development and insufficient safety/efficacy data in children and CCS. CONCLUSIONS: Results underscore the need for COVID-19 vaccination education and outreach, even among families highly engaged with the medical community, and emphasize the importance of updating these families as relevant data emerge from vaccine trials and registries.


Asunto(s)
COVID-19 , Supervivientes de Cáncer , Neoplasias , COVID-19/epidemiología , COVID-19/prevención & control , Vacunas contra la COVID-19 , Cuidadores , Niño , Estudios Transversales , Femenino , Humanos , Masculino , Neoplasias/terapia , SARS-CoV-2 , Vacunación
13.
Curr Oncol Rep ; 24(3): 295-302, 2022 03.
Artículo en Inglés | MEDLINE | ID: mdl-35113354

RESUMEN

PURPOSE OF REVIEW: This study aims to describe what is currently known about how children with cancer have been affected by the COVID-19 pandemic, including morbidity and mortality, interruptions in cancer care and delays in diagnosis, and psychosocial effects. Here we summarize the literature on how this patient population has fared during the pandemic, reviewing multiple smaller reports along with two large registries. RECENT FINDINGS: Although children with cancer generally have better outcomes with COVID-19 infection than adults with cancer, their risks of hospitalization, ICU admission, and death are greatly increased compared to the general pediatric population. There are socioeconomic and ethnic disparities present in these effects. Children with cancer experience significant risks from the COVID-19 pandemic. It has yet to be seen how delays and interruptions of cancer treatment and direct organ toxicities caused by the virus itself may affect long-term outcomes in these patients.


Asunto(s)
COVID-19/epidemiología , Neoplasias/epidemiología , COVID-19/complicaciones , COVID-19/prevención & control , COVID-19/terapia , Niño , Familia/psicología , Disparidades en el Estado de Salud , Humanos , Neoplasias/diagnóstico , Neoplasias/psicología , Neoplasias/terapia , SARS-CoV-2 , Índice de Severidad de la Enfermedad
14.
Pediatr Cardiol ; 43(4): 744-755, 2022 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-34854941

RESUMEN

Children with heart disease often experience symptoms and medically intense end-of-life care. Our study explored bereaved parents' perceptions of a "good death" via a mail survey to 128 parents of children with heart disease who died in two centers. Parental perceptions of end-of-life circumstances were assessed by closed-ended questions including level of agreement with the question: "would you say your child experienced a good death?" and open-ended comments were contributed. Medical therapies at end-of-life and mode of death were retrieved through chart review. Of 50 responding parents, 44 (response rate: 34%) responded to the "good death" question; 16 (36%) agreed strongly, 15 (34%) agreed somewhat, and 30% disagreed (somewhat: 7, 16%; strongly: 6, 14%). Half the children were on mechanical support and 84% intubated at death. Of children with cardiopulmonary resuscitation (CPR) at end-of-life, 71% of parents disagreed with the "good death" question compared with 22% of parents whose child died following discontinuation of life-sustaining therapy or comfort measures (OR 9.1, 95% CI 1.3, 48.9, p < 0.01). Parent-reported circumstances associated with disagreement with the "good death" question included cure-oriented goals-of-care (OR 16.6, 95% CI 3.0, 87.8, p < 0.001), lack of advance care planning (ACP) (OR 12.4 95% CI 2.1, 65.3 p < 0.002), surprise regarding timing of death (OR 11.7, 95% CI 2.6, 53.4 p < 0.002), and experience of pain (OR 42.1, 95% CI 2.3, 773.7 p < 0.02). Despite high medical intensity, many bereaved parents of children with cardiac disease agree a "good death" was experienced. A "good death" was associated with greater preparedness, ACP, non-cure-oriented goals-of-care, pain control, and CPR avoidance.


Asunto(s)
Cardiopatías , Cuidado Terminal , Niño , Muerte , Humanos , Dolor , Padres
15.
Cancer ; 127(14): 2571-2578, 2021 07 15.
Artículo en Inglés | MEDLINE | ID: mdl-33784408

RESUMEN

BACKGROUND: The quality of adult end-of-life (EOL) cancer care has benefited from quality measures, but corresponding pediatric measures are lacking. Therefore, the authors used a validated expert panel method to recommend EOL quality measures for pediatric oncology. METHODS: The authors used the modified Delphi method to assess potential quality measures. Panelists were selected on the basis of professional organization nominations and expert qualifications. Pediatric and adult oncology, pediatric palliative care, social work, nursing, and hospice were represented. The authors provided the panel with a literature review on 20 proposed measures derived from adult measures and bereaved family interviews. The panel first scored the importance of each measure on a 9-point scale and then discussed the measures via a conference call. The panel then rescored the measures. According to a priori standards, measures with median scores ≥ 7 with at least 7 of 9 experts ranking it as ≥4 were endorsed. RESULTS: The 16 endorsed measures included measures related to avoidance of medically intense care (eg, intensive care unit death and intubation in the last 14 days of life), death location (eg, death in the preferred location), hospital policies/programs (eg, the removal of visitor restrictions at EOL and the presence of a bereavement program), and supportive care services (eg, pediatric palliative care involvement and sibling needs assessment). Unendorsed measures included avoidance of chemotherapy at EOL and home death. CONCLUSIONS: Expert panel-endorsed quality measures have been developed for EOL care in pediatric oncology. The measures need validation with bereaved families and further refinement before they are ready for real-world application as a tool for standardizing EOL care in pediatric oncology. LAY SUMMARY: Quality measures for end-of-life care for children with cancer lag behind adult quality measures. Therefore, the authors have conducted an expert panel to develop an endorsed list of quality measures for end-of-life care for children with cancer. The 16 endorsed measures include measures related to avoidance of medically intense care (eg, intensive care unit death and intubation in the last 14 days of life), location of death (eg, death in the preferred location), hospital policies/programs (eg, the removal of visitor restrictions at the end of life and the presence of a bereavement program), and supportive care services (eg, pediatric palliative care involvement and sibling needs assessment).


Asunto(s)
Cuidados Paliativos al Final de la Vida , Neoplasias , Cuidado Terminal , Adulto , Niño , Cuidados Paliativos al Final de la Vida/métodos , Humanos , Neoplasias/terapia , Cuidados Paliativos/métodos , Indicadores de Calidad de la Atención de Salud , Cuidado Terminal/métodos
16.
Pediatr Blood Cancer ; 68(4): e28943, 2021 04.
Artículo en Inglés | MEDLINE | ID: mdl-33565259

RESUMEN

PURPOSE: We sought to assess the impact of disruptions due to coronavirus disease 2019 (COVID-19) on caregivers of childhood cancer survivors. METHODS: A 13-question survey containing multiple-choice, Likert-type, and free-text questions on experiences, behaviors, and attitudes during the COVID-19 outbreak was sent to childhood cancer caregivers and completed between April 13 and May 17, 2020. Ordered logistic regression was used to investigate relationships between demographics, COVID-related experiences, and caregiver well-being. RESULTS: Caregivers from 321 unique families completed the survey, including 175 with children under active surveillance/follow-up care and 146 with children no longer receiving oncology care. Overall, caregivers expressed exceptional resiliency, highlighting commonalities between caring for a child with cancer and adopting COVID-19 prophylactic measures. However, respondents reported delayed/canceled appointments (50%) and delayed/canceled imaging (19%). Eleven percent of caregivers reported struggling to pay for basic needs, which was associated with greater disruption to daily life, greater feelings of anxiety, poorer sleep, and less access to social support (p < .05). Caregivers who were self-isolating reported greater feelings of anxiety and poorer sleep (p < .05). Respondents who expressed confidence in the government response to COVID-19 reported less disruption to their daily life, decreased feelings of depression and anxiety, better sleep, and greater hopefulness (p < .001) CONCLUSIONS: Caregivers are experiencing changes to medical care, financial disruptions, and emotional distress due to COVID-19. To better serve caregivers and medically at-risk children, clinicians must evaluate financial toxicity and feelings of isolation in families affected by childhood cancer, and work to provide reliable information on how COVID-19 may differentially impact their children.


Asunto(s)
COVID-19/psicología , Supervivientes de Cáncer/psicología , Cuidadores/psicología , Neoplasias/psicología , Apoyo Social , Adaptación Psicológica , Adulto , Ansiedad/psicología , Niño , Femenino , Humanos , Masculino , Neoplasias/enfermería , Relaciones Padres-Hijo , Padres/psicología , Estrés Psicológico/psicología
17.
Pediatr Blood Cancer ; 68(7): e28998, 2021 07.
Artículo en Inglés | MEDLINE | ID: mdl-33720485

RESUMEN

BACKGROUND: Ewing sarcoma (EWS) and osteosarcoma (OS) require multidisciplinary treatment. Care at specialized cancer centers (SCC: Children's Oncology Group affiliated and/or National Cancer Institute-designated cancer center) has been found to improve outcomes in patients with leukemia, but studies have not considered location of care and outcomes in EWS and OS patients, an ideal group to evaluate given their specialized multidisciplinary treatment needs. METHODS: Patients hospitalized with primary EWS and OS (2000-2014) were identified using the California Cancer Registry linked with hospitalization data. Patients were divided into age groups (0-18, 19-39, ≥40 years), and classified on whether they received all versus part/none of their inpatient treatment at a SCC within 1 year of diagnosis. Multivariable Cox proportional hazards regression identified factors associated with survival. RESULTS: There were 531 ES and 959 OS patients. Five-year overall survival was better for patients with EWS (all: 63% vs. part/none: 42%) and OS (all: 64% vs. part/none: 47%) who received all of their treatment at a SCC. After adjusting for sociodemographic and clinical factors, receiving all inpatient cancer treatment at a SCC was associated with superior overall survival (EWS HR: 0.49, CI 0.37-0.67; OS HR: 0.78, CI 0.63-0.97). CONCLUSION: Our results suggest that treatment for EWS and OS at a SCC is associated with significantly improved survival even after adjustment for known prognostic factors. The superior survival among those treated at SCCs may be due to having greater access to clinical trials and services at SCCs.


Asunto(s)
Neoplasias Óseas , Osteosarcoma , Sarcoma de Ewing , Adolescente , Adulto , Neoplasias Óseas/terapia , Niño , Preescolar , Hospitalización , Humanos , Lactante , Recién Nacido , Pacientes Internos , Tumores Neuroectodérmicos Periféricos Primitivos , Osteosarcoma/terapia , Sarcoma de Ewing/terapia , Adulto Joven
18.
Cancer ; 126(14): 3352-3359, 2020 07 15.
Artículo en Inglés | MEDLINE | ID: mdl-32383817

RESUMEN

BACKGROUND: End-of-life (EOL) quality markers in adult oncology include home death and intensive care unit avoidance. Corresponding markers are lacking in pediatric oncology. This study was aimed at describing bereaved parents' perspectives of high-quality EOL care in pediatric oncology. METHODS: This study enrolled a convenience sample of 28 bereaved parents (English- or Spanish-speaking) whose children (0-21 years old) had died of cancer ≥6 months before. Semistructured interviews were conducted to elicit parental perceptions of medically intense/quality EOL care. Interviews were recorded and transcribed verbatim (30 hours), and study team consensus and content analyses identified themes related to EOL quality markers. Related quotes were scored on a 5-point Likert scale ranging from 1 (supported comfort care) to 5 (supported medically aggressive care). RESULTS: The children died in 1998-2017 at a mean age of 10 years (SD, 5.2 years); 50% had a solid tumor, and 46% were Spanish-speaking. Themes included 1) home death preference (unless home support was inadequate; median score, 1.6), nonaggressive care (median score, 2.4), and continued anticancer therapy (median score, 3.2); 2) programs/policies that could alleviate barriers limiting a family's time with a dying child (visiting restrictions and financial strains); 3) the need to prepare the family for death (eg, what would happen to the child's body), and 4) perceived abandonment. CONCLUSIONS: This is the first qualitative study to identify quality makers for children dying of cancer from bereaved parents' perspectives. Natural death is generally preferred, and quality measures that address barriers to parents' spending time with their children, a lack of preparation for the events surrounding death, and feelings of abandonment are critical. Future studies need to validate these findings and develop targeted interventions.


Asunto(s)
Aflicción , Salud Infantil , Neoplasias/mortalidad , Neoplasias/terapia , Padres/psicología , Calidad de la Atención de Salud , Cuidado Terminal/métodos , Adolescente , California/epidemiología , Niño , Preescolar , Femenino , Humanos , Lactante , Recién Nacido , Unidades de Cuidado Intensivo Pediátrico , Masculino , Neoplasias/epidemiología , Cuidados Paliativos , Investigación Cualitativa , Calidad de Vida , Adulto Joven
19.
Yeast ; 37(1): 27-44, 2020 01.
Artículo en Inglés | MEDLINE | ID: mdl-31800968

RESUMEN

Yeast strains have been used extensively as robust microbial cell factories for the production of bulk and fine chemicals, including biofuels (bioethanol), complex pharmaceuticals (antimalarial drug artemisinin and opioid pain killers), flavours, and fragrances (vanillin, nootkatone, and resveratrol). In many cases, it is of benefit to suppress or modify ergosterol biosynthesis during strain engineering, for example, to increase thermotolerance or to increase metabolic flux through an alternate pathway. However, the impact of modifying ergosterol biosynthesis on engineered strains is discussed sparsely in literature, and little attention has been paid to the implications of these modifications on the general health and well-being of yeast. Importantly, yeast with modified sterol content exhibit a wide range of phenotypes, including altered organization and dynamics of plasma membrane, altered susceptibility to chemical treatment, increased tolerance to high temperatures, and reduced tolerance to other stresses such as high ethanol, salt, and solute concentrations. Here, we review the wide-ranging phenotypes of viable Saccharomyces cerevisiae strains with altered sterol content and discuss the implications of these for yeast as microbial cell factories.


Asunto(s)
Ergosterol/biosíntesis , Ingeniería Metabólica , Mutación , Saccharomyces cerevisiae/genética , Saccharomyces cerevisiae/metabolismo , Biocombustibles , Fermentación , Fenotipo , Esteroles/análisis
20.
Am J Public Health ; 110(7): 1039-1045, 2020 07.
Artículo en Inglés | MEDLINE | ID: mdl-32437276

RESUMEN

Objectives. To describe perceptions of access to abortion among women of reproductive age and their associations with state abortion policy contexts.Methods. We used data from the 2018 Survey of Family Planning and Women's Lives, a probability-based sample of 2115 adult women aged 18 to 44 years in US households.Results. We found that 27.6% of women (95% confidence interval [CI] = 23.3%, 32.7%) believed that access to medical abortion was difficult and 30.1% of women (95% CI = 25.6%, 35.1%) believed that access to surgical abortion was difficult. Adjusted for covariates, women were significantly more likely to perceive access to both surgical and medical abortions as difficult when they lived in states with 4 or more restrictive abortion policies compared with states with fewer restrictions (surgical adjusted odds ratio [AORsurgical] = 1.60, 95% CI = 1.15, 2.21; AORmedical = 1.65, 95% CI = 1.04, 1.95). Specific restrictive abortion policies (e.g., public funding restrictions, mandatory counseling or waiting periods, and targeted regulation of abortion providers) were also associated with greater perceived difficulty accessing both surgical and medical abortions.Conclusions. State policies restricting abortion access are associated with perceptions of reduced access to both medical and surgical abortions among women of reproductive age.


Asunto(s)
Aborto Legal/legislación & jurisprudencia , Accesibilidad a los Servicios de Salud/legislación & jurisprudencia , Política Pública , Aborto Legal/economía , Adulto , Femenino , Accesibilidad a los Servicios de Salud/economía , Humanos , Percepción , Embarazo , Gobierno Estatal , Encuestas y Cuestionarios , Estados Unidos
SELECCIÓN DE REFERENCIAS
DETALLE DE LA BÚSQUEDA