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CONTEXT: Parent-clinician communication is essential for high-quality end-of-life (EOL) care in children with cancer. However, it is unknown how parent-clinician communication affects parents' experience in the first two years after their child's death. OBJECTIVES: To examine the association between communication and prolonged grief among parents whose child died from cancer and to explore the mediation effect of preparation for EOL care. METHODS: We analyzed data from a cross-sectional survey of parents of children who died from cancer in the prior 6-24 months. We used multiple linear regression to examine the association between communication variables and prolonged grief symptoms. We also examined how preparation for EOL mediates these associations. RESULTS: Across N=124 parents, the mean age was 46 years, 82% were White, and 64% were mothers. The average PG-13 sum score was 32.7 ± 10.6 (range 11-55, with higher scores indicating greater symptom severity). Most parents reported "very good/excellent" communication with clinicians (80%), adequate prognostic information (64%), and high levels of trust (90%). Nearly 39% of parents reported feeling "not at all prepared" for their child's EOL. Compared to parents who wanted more prognostic information, parents who perceived prognostic information to be adequate had significantly lower PG-13 sum scores (36.4 ± 10.8 vs. 30.5 ± 10.1, F=9.26, p=0.003). Preparation for EOL fully mediated this association. CONCLUSION: Early bereaved parents report severe prolonged grief symptoms. Interventions focused on providing adequate prognostic information and improving preparation for EOL may mitigate parental prolonged grief symptoms in the first two years of their bereavement.
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BACKGROUND: Suffering at the end-of-life (EOL) can impact the perception of a "good death" and ultimately affect bereavement for families of children with cancer. Palliative radiation (pXRT) is a tool that can address pain, mitigate suffering and improve quality of life. METHODS: A retrospective medical record review of pediatric oncology patients who died over an 11-year period was completed. Descriptive analysis and non-parametric tests to compare groups were used. RESULTS: 2202 total deaths occurred during the study period; 167 patients met study criteria, reflecting a 7.6% incidence of pXRT use at the EOL. Most patients were white (68%) and male (59%), with a median age of 9 years. Solid tumors were most common (52%), followed by CNS tumors (38%), and leukemia (10%). pXRT was primarily used to treat pain (37%) and focused on sites including brain/spine (37%), head/neck (24%), and pelvis (12%). Mean radiation dose delivered was 23.8Gy (range: 1.8-55.8Gy) in a median of 7 fractions (range: 1-31). Side effects were rare and 58% of patients had a decrease in reported pain scores. Additionally, 87% received a pediatric palliative care (PPC) consultation which increased the likelihood for hospice referral, documented DNR preferences and decrease episodes of CPR on the day of death. CONCLUSIONS: There is underutilization and significant variability in the use of pXRT during EOL in pediatric oncology. Barriers to this tool may include physician perceptions, family/patient preferences, and logistical hardships. Guidelines to standardize pXRT, alongside earlier PPC integration, may guide clinician decision making and increase pXRT utilization.
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Background: We aimed to evaluate whether large prostate size, small lesion volume, or long lesion distance from the ultrasound probe tip would decrease cancer detection in transrectal magnetic resonance imaging (MRI)-targeted biopsies. Materials and methods: Patients who underwent MRI-targeted biopsy at our institution between May 2017 and August 2019 were enrolled in a prospective database. Three to 5 cores were obtained from ≥2 prostate imaging reporting and data system v2 lesions. A multivariable model was created that included needle distance to the lesion, prostate specific antigen, prostate imaging reporting and data system, lesion volume, and prostate volume. Results: A total of 377 patients with 533 lesions underwent a biopsy during the study period. A total of 233 (44%) lesions were positive for prostate cancer, and 173 (32%) lesions had clinically significant prostate cancer. The mean needle distance to the lesion was 11.7 mm (interquartile range, 7.6-15.5 mm). The likelihood of obtaining a positive core on biopsy decreased as the distance from the ultrasound probe increased for all prostate cancers and clinically significant prostate cancer (p = 0.018 and p = 0.004, respectively). Every 10 mm from the rectum, there was an 8%-10% decrease in the rate of cancer detection. Similarly, as the prostate volume increased, the odds of obtaining a positive core also decreased (p = 0.039). There was no significant association between the lesion size and amount of cancer obtained on biopsy. Conclusions: Our data showed that transrectal MRI-targeted biopsy cancer detection modestly decreased the lesion from the ultrasound probe and with a large prostate volume but could not prove that lesion volume was a significant predictor of the amount of cancer detected.
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PURPOSE: To examine if an ED interprofessional team ("ED1Team") could safely decrease hospital admissions among older persons. METHODS: This single-center, retrospective, propensity score matched study was performed at a single ED during a control (December 2/2018-March 31/2019) and intervention (December 2/2019-March 31/2020) period. The intervention was assessed by the ED1Team, which could include an occupational therapist, physiotherapist, and social worker. We compared admission rates between period in persons age ≥ 70 years. Next, we compared visits attended by the ED1Team to (a) control period visits, and (b) intervention period visits without ED1Team attendance. SECONDARY OUTCOMES: ED length-of-stay, 7-day subsequent hospital admission and mortality in discharged patients. RESULTS: There were 5496 and 4876 eligible ED visits during the control and intervention periods, respectively. In the latter group, 556 (11.4%) received ED1Team assessment. After matching, there was an absolute 2.3% (p = 0.07) reduction in the admission rate between control and intervention periods. After matching the 556 ED1Team attended visits to control period visits, and to intervention period visits without the intervention, admission rates decreased by 10.0% (p = 0.006) and 13.5% (p < 0.001), respectively. For discharged patients, median ED length-of-stay decreased by 1.0 h (p < 0.001) between control and intervention periods and increased by 2.3 h (p < 0.001) compared to intervention period without the intervention. For patients discharged by the ED1Team, subsequent readmissions after 7 days were slightly higher, but mortality was not significantly different. CONCLUSION: ED1Team consultation was associated with a decreased hospital admission rate in older ED patients. It was associated with a slightly longer ED length-of-stay and subsequent early hospitalizations. Given that even a small increase in freed hospital beds would release some of the pressure on an overextended healthcare system, these results suggest that upscaling of the intervention might procure systems-wide benefits.
RéSUMé: OBJECTIF: Examiner si une équipe interprofessionnelle de DE (« ED1Team ¼) pourrait réduire en toute sécurité les admissions à l'hôpital chez les personnes âgées. MéTHODES: Cette étude rétrospective, à un seul centre et correspondant au score de propension a été réalisée à un seul DE pendant une période de contrôle (2/2018-31 mars/2019) et d'intervention (2/2019-31 mars/2020). L'intervention était une évaluation par l'équipe de l'ED1, qui pouvait comprendre un ergothérapeute, un physiothérapeute et un travailleur social. Nous avons comparé les taux d'admission entre périodes chez des personnes âgées de 70 ans. Ensuite, nous avons comparé les visites auxquelles a assisté l'équipe de DE1 à des visites pendant la période de contrôle et b) des visites pendant la période d'intervention sans présence de l'équipe. Résultats secondaires Durée du séjour en salle d'opération, hospitalisation subséquente de 7 jours et mortalité chez les patients libérés. RéSULTATS: Il y a eu 5496 et 4876 visites admissibles à la DE pendant les périodes de contrôle et d'intervention, respectivement. Dans ce dernier groupe, 556 (11,4 %) ont reçu une évaluation de l'équipe ED1. Après appariement, il y a eu une réduction absolue de 2,3 % (p=0,07) du taux d'admission entre les périodes de contrôle et d'intervention. Après avoir comparé les 556 visites de l'équipe ED1P aux visites des périodes de contrôle et aux visites des périodes d'intervention sans intervention, les taux d'admission ont diminué de 10,0 % (p=0,006) et 13,5 % (p<0,001), respectivement. Chez les patients ayant reçu leur congé, la durée médiane de séjour en DE a diminué de 1,0 heure (p<0,001) entre les périodes de contrôle et d'intervention et a augmenté de 2,3 heures (p<0,001) par rapport à la période d'intervention sans l'intervention. Pour les patients libérés par l'équipe ED1, les réadmissions subséquentes après 7 jours étaient légèrement plus élevées, mais la mortalité n'était pas significativement différente. CONCLUSION: La consultation d'Ed1Team a été associée à une diminution du taux d'admission hospitalière chez les patients âgés atteints de DE. Elle était associée à une durée de séjour légèrement plus longue en salle d'opération et à des hospitalisations précoces subséquentes. Étant donné que même une petite augmentation du nombre de lits d'hôpitaux libérés allégerait en partie la pression exercée sur un système de soins de santé surdimensionné, ces résultats suggèrent qu'une mise à l'échelle de l'intervention pourrait procurer des avantages à l'échelle du système.
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CONTEXT: Children are a uniquely vulnerable patient population with restricted abilities for self-advocacy and autonomy, risking infringement upon their dignity. Yet the concept of dignity in pediatrics remains underexplored relative to the adult literature and other outcome measures. OBJECTIVES: To characterize how dignity is defined, evaluated, and/or measured in pediatrics. METHODS: We conducted a systematic review following PRISMA guidelines across the following databases: MEDLINE, Embase, Cumulative Index of Nursing and Allied Health, PsycINFO, Global Health, Social Science Premium Collection, and Dissertation and Theses. We included publications from database inception through April 2023, in English, involving children aged 0-18 years, and prioritizing dignity as a central theme with a focus on defining, evaluating, or measuring dignity. Study descriptions and pertinent characteristics were extracted and synthesized using a predefined form. RESULTS: Forty-four articles met inclusion criteria; fewer than half comprised original research (20/44, 45%). Most studies (38/44, 86%) included description of the meaning of dignity, with emergence of salient themes around respect, communication, agency/autonomy, and privacy. Less than half (19/44, 43%) included a measurement or evaluation of dignity; approximately one-third described dignity therapy. More than one-third of publications focused on dignity at end of life (17/44, 39%) and included discussions of palliative medicine and hospice (15/44, 34%). CONCLUSION: Relatively few published studies describe dignity in pediatrics. Opportunities exist to broaden scholarship on this topic in partnership with patients, families, and clinicians, with the goal of assessing and strengthening dignity-centered care across the illness course and at the end of life.
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BACKGROUND AND OBJECTIVES: Conversations about dignity are fundamental to person-centered care in pediatrics, yet practical language strategies to promote and support dignity remain understudied. To address this gap, we aimed to identify and characterize language used by pediatric oncologists to recognize and affirm dignity across advancing illness. METHODS: In this longitudinal prospective study, we audio-recorded serial disease reevaluation encounters between pediatric oncologists, children with cancer, and families across 24 months or until the child's death. Using a hybrid deductive-inductive qualitative approach, we defined dignity language a priori on the basis of existing descriptions of dignity in the literature and then conducted a content analysis to refine the definition specific to pediatric cancer care before coding serial medical encounters. Thematic frequencies were reported by using descriptive statistics. RESULTS: A total of 91 discussions at timepoints of disease progression were audio-recorded for 36 patients and their families. No dignity language was identified in nearly half (45%) of "bad news" encounters, and the time spent by the oncologist engaging in dignity language represented a minority (<7%) of overall recorded dialogue. Within coded dialogue, we characterized 3 key themes upholding dignity language (empowerment, autonomy, respect). CONCLUSIONS: Opportunities exist to improve dignity communication in childhood cancer, and the authors propose a conceptual model ("Lend an EAR") to guide dignity-based communication in pediatric cancer. Future research should emphasize patient and parent perspectives on language to support dignity for children with advanced cancer, with stakeholder-driven refinement of the Lend an EAR model before integration and testing in communication skills training programs.
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Neoplasias , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Criança , Estudos Prospectivos , Feminino , Masculino , Estudos Longitudinais , Relações Médico-Paciente , Pré-Escolar , Pessoalidade , Idioma , Adolescente , Respeito , Oncologia , ComunicaçãoRESUMO
This paper introduces a dataset of aerial imagery captured during the 2022 cocoa growing season in the central-western region of Côte d'Ivoire. The images were acquired using a multispectral camera mounted on a DJI Phantom 4 unmanned aerial vehicle (UAV). The agricultural land surveyed encompasses 10 different types of cocoa-based agroforestry systems, each ranging from 2.6 ha to 8.3 ha, totaling 7638 images and covering 30 ha. The UAV mission was conducted at an altitude of 80 m, with a side overlap of 70 % and a front overlap of 80 %. This configuration achieved ground sampling distances (GSD) ranging from 4.2 to 4.6 cm providing high-resolution detailed imagery of those lands. These high-resolution RGB and multispectral images can be used to characterize the structural complexity of the systems as well as the abundance, and the health of the trees in these cocoa-based systems. It can be a valuable resource for researchers in the fields of ecology, agriculture, and environmental monitoring. The dataset supports a wide range of applications, from precision agriculture to sustainable cocoa land use management, making it a pivotal tool for enhancing agricultural practices and ecosystem management in Ivorian regions facing environmental and economic challenges.
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BACKGROUND: The death of a child is one of the most devastating events a family can face, resulting in significant physical and psychosocial morbidity. Bereavement support programs have been developed in high-income contexts to address this need. However, little is known about implementing bereavement programs in low-and middle-income countries (LMICs). Here, we describe the implementation of a bereavement program for parents whose children died due to cancer or other catastrophic illnesses. METHODS: We conducted a retrospective analysis to describe the implementation of a hospital-based End of Life (EoL) care and bereavement program. This program was developed in several stages, including an assessment of bereaved families, development program guidelines, staff training, piloting of the program, refinement, and standardization. The program was developed between 2019 and 2021 in a nonprofit, teaching hospital and referral center for southwestern Colombia. RESULTS: Several tools were developed as key components of the bereavement program: a virtual bereavement course; guidance for EoL and bereavement communication and care, memory making, and follow-up calls; a condolence letter template, and group support workshops. A total of 956 healthcare professionals were trained, 258 follow-up calls to bereaved parents were made, 150 individual psychological follow-ups to parents with complicated grief occurred, 79 condolence letters were sent, and 10 support group workshops were carried out. Challenges were identified and overcome, such as limited resources and staff, and cultural perceptions of death. In 2021, this program received an award by the hospital as the Best Strategy to Humanize Healthcare. CONCLUSIONS: This study highlights the feasibility of developing and implementing EoL and bereavement care programs for parents and families within hospitals in LMICs. Lack of resources, staff, and training are some of the identified challenges to implementation. Utilizing methodological tools allows us to identify facilitator factors and deliverable outcomes of our EoL and bereavement program. This model provides a valuable framework for resource-limited settings.
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Luto , Assistência Terminal , Humanos , Assistência Terminal/métodos , Assistência Terminal/psicologia , Estudos Retrospectivos , Empatia , Colômbia , Feminino , Masculino , Países em DesenvolvimentoRESUMO
BACKGROUND: In 2020, the Ministry of Health (MoH) in Ontario, Canada, introduced a virtual urgent care (VUC) pilot program to provide alternative access to urgent care services and reduce the need for in-person emergency department (ED) visits for patients with low acuity health concerns. OBJECTIVE: This study aims to compare the 30-day costs associated with VUC and in-person ED encounters from an MoH perspective. METHODS: Using administrative data from Ontario (the most populous province of Canada), a population-based, matched cohort study of Ontarians who used VUC services from December 2020 to September 2021 was conducted. As it was expected that VUC and in-person ED users would be different, two cohorts of VUC users were defined: (1) those who were promptly referred to an ED by a VUC provider and subsequently presented to an ED within 72 hours (these patients were matched to in-person ED users with any discharge disposition) and (2) those seen by a VUC provider with no referral to an in-person ED (these patients were matched to patients who presented in-person to the ED and were discharged home by the ED physician). Bootstrap techniques were used to compare the 30-day mean costs of VUC (operational costs to set up the VUC program plus health care expenditures) versus in-person ED care (health care expenditures) from an MoH perspective. All costs are expressed in Canadian dollars (a currency exchange rate of CAD $1=US $0.76 is applicable). RESULTS: We matched 2129 patients who presented to an ED within 72 hours of VUC referral and 14,179 patients seen by a VUC provider without a referral to an ED. Our matched populations represented 99% (2129/2150) of eligible VUC patients referred to the ED by their VUC provider and 98% (14,179/14,498) of eligible VUC patients not referred to the ED by their VUC provider. Compared to matched in-person ED patients, 30-day costs per patient were significantly higher for the cohort of VUC patients who presented to an ED within 72 hours of VUC referral ($2805 vs $2299; difference of $506, 95% CI $139-$885) and significantly lower for the VUC cohort of patients who did not require ED referral ($907 vs $1270; difference of $362, 95% CI 284-$446). Overall, the absolute 30-day costs associated with the 2 VUC cohorts were $18.9 million (ie, $6.0 million + $12.9 million) versus $22.9 million ($4.9 million + $18.0 million) for the 2 in-person ED cohorts. CONCLUSIONS: This costing evaluation supports the use of VUC as most complaints were addressed without referral to ED. Future research should evaluate targeted applications of VUC (eg, VUC models led by nurse practitioners or physician assistants with support from ED physicians) to inform future resource allocation and policy decisions.
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Serviço Hospitalar de Emergência , Ontário , Humanos , Projetos Piloto , Estudos de Coortes , Feminino , Masculino , Serviço Hospitalar de Emergência/economia , Serviço Hospitalar de Emergência/estatística & dados numéricos , Pessoa de Meia-Idade , Adulto , Assistência Ambulatorial/economia , Idoso , Telemedicina/economia , Custos de Cuidados de Saúde/estatística & dados numéricosRESUMO
Clinical trials frequently include multiple end points that mature at different times. The initial report, typically based on the primary end point, may be published when key planned co-primary or secondary analyses are not yet available. Clinical Trial Updates provide an opportunity to disseminate additional results from studies, published in JCO or elsewhere, for which the primary end point has already been reported.Although the CNS activity of selpercatinib in patients with RET fusion-positive non-small cell lung cancer (NSCLC) has been previously described, the ability of potent RET inhibition to prevent new CNS metastases from developing has been challenging to measure without randomized data. Serial CNS scans were studied from LIBRETTO-431, a randomized phase III trial of selpercatinib versus platinum/pemetrexed ± pembrolizumab whose primary results have been previously disclosed. Intracranial outcomes were assessed by neuroradiologic blinded independent central review in patients with baseline and ≥1 postbaseline CNS scans. Of the 192 patients within the intention-to-treat pembrolizumab population with baseline CNS scans, 150 patients were without baseline CNS metastases. The cumulative incidence of CNS progression in these patients was reduced with selpercatinib versus chemotherapy + pembrolizumab (cause-specific hazard ratio [HR], 0.17 [95% CI, 0.04 to 0.69]). The HR for intracranial progression-free survival (PFS) was 0.46 (95% CI, 0.18 to 1.18). Among the 42 patients with baseline CNS metastases, similar trends were observed in the cumulative incidence of CNS progression (cause-specific HR, 0.61 [95% CI, 0.19 to 1.92]) and intracranial PFS (HR, 0.74 [95% CI, 0.28 to 1.97]). These data demonstrate that selpercatinib effectively treats existing CNS disease and prevents or delays the formation of new CNS metastases. These results reinforce the importance of identifying RET fusions in first-line patients with NSCLC and treating with selpercatinib.
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Carcinoma Pulmonar de Células não Pequenas , Neoplasias Pulmonares , Proteínas Proto-Oncogênicas c-ret , Pirazóis , Piridinas , Humanos , Carcinoma Pulmonar de Células não Pequenas/tratamento farmacológico , Carcinoma Pulmonar de Células não Pequenas/secundário , Neoplasias Pulmonares/tratamento farmacológico , Neoplasias Pulmonares/patologia , Proteínas Proto-Oncogênicas c-ret/genética , Pirazóis/uso terapêutico , Piridinas/uso terapêutico , Masculino , Feminino , Pessoa de Meia-Idade , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Idoso , Pemetrexede/uso terapêutico , Anticorpos Monoclonais Humanizados/uso terapêutico , Neoplasias do Sistema Nervoso Central/secundário , Neoplasias do Sistema Nervoso Central/tratamento farmacológico , Proteínas de Fusão Oncogênica/genética , Neoplasias Encefálicas/secundário , Neoplasias Encefálicas/tratamento farmacológico , Adulto , Intervalo Livre de ProgressãoRESUMO
Patients from equity-deserving populations, such as those who are from racialized communities, the 2SLGBTQI+ community, who are refugees or immigrants, and/or who have a disability, may experience a unique set of challenges accessing virtual models of care. The objective of this qualitative study was to describe the experiences of patients from equity-deserving communities and their family members who received care from a Virtual Emergency Department (ED) in Toronto, Canada. Forty-three participants (36 patients and 7 family caregivers) with different and intersecting identities who used the Virtual ED participated in the study. Semi-structured interviews were conducted to explore reasons for accessing the Virtual ED, barriers to access, and how the Virtual ED met their care needs and expectations, including ways their experience could have been improved. Thematic analysis was used to identify themes from the data. Patients from equity-deserving populations described negative past experiences with ED in-person care, which included recounts of discrimination or culturally insensitive care while waiting to see the ED physician or nurse. Conversely, participants found the Virtual ED to be a socially and culturally safe space since they could now by-pass the waiting room experience. However, virtual care could not replace in-person care for certain issues (e.g., physical exam), and there was a need for greater promotion of the service to specific communities that might benefit from having access to the Virtual ED. Targeted outreach to help raise awareness of the service to equity-deserving communities is an important future direction.
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Serviço Hospitalar de Emergência , Pesquisa Qualitativa , Humanos , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Acessibilidade aos Serviços de Saúde , Idoso , Adulto Jovem , CanadáRESUMO
Objective We completed a prospective human cadaveric study to determine the ability of a ball bearing (BB) pellet to penetrate the orbit and/or surrounding structures. Methods A single trained sergeant officer discharged an alloy steel air rifle to eight cadaver orbits from four adult human cadaver heads. Five BB pellets each were aimed at three locations (caruncle, upper eyelid, or lower eyelid) at 10 cm and 1 m, and then less specifically, at the orbital region for 3- and 5-m distances. Computed tomography (CT) of the cadaver heads was performed. Final locations of BB pellets are divided into three categories: intracranial, surrounding orbital structures including the pterygopalatine fossa and infratemporal fossa, and orbit. Results Of 40 BB pellets, 37 penetrated soft tissue and were visualized on CT: 19 (51%) rested in the intracranial space, 17 (46%) in surrounding orbital structures, and 1 (3%) within the orbit. The deepest position of a pellet was in the parietal lobe, and most superficial location anterior to the frontal bone. Pellets discharged from 1 m were more likely to rest in the intracranial space compared with those from 10 cm ( p < 0.001), 3 m ( p = 0.011), and 5 m ( p = 0.004). The distance of discharge was associated with final pellet location ( p = 0.001). Conclusion BB guns should be considered dangerous and potentially deadly when aimed at the orbit. Although the thick calvarium can protect the intracranial space from BB penetration, the orbit may be a vulnerable entry point with relatively low resistance, allowing penetration of the intracranial and periorbital spaces.
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Religion and spirituality often influence how people experience illness, death, and grief. The roles of religion and spirituality for parents who have lost a child to cancer remain underexplored. This study aimed to describe how cancer-bereaved parents talk about religion and spirituality when reflecting on their experiences. Participants whose children died of cancer one to six years prior to participation completed a one-on-one semi-structured interview. Interview transcripts underwent qualitative analysis. Content pertaining to religion and/or spirituality underwent subsequent in-depth analysis to identify themes. Of 30 interviews analyzed, 28 contained religion/spirituality content. Four themes arose: (1) life after death, (2) divine control, (3) evolution of faith after loss, and (4) religious and spiritual interactions within the medical community. The absence of supports for religious and spiritual needs represents a gap in bereavement care. Future work should clarify needs and explore potential interventions.
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Importance: Symptom burden and its characteristics among survivors of pediatric cancers aged 8 to 18 years remain understudied. Objective: To examine the prevalence of symptom burden among young childhood cancer survivors and identify associations with sociodemographic, clinical, and psychological resilience skills, and health-related quality of life (HRQOL). Design, Setting, and Participants: A cross-sectional analysis using data collected from November 1, 2017, to January 31, 2019, in a survivorship clinic at a US-based comprehensive cancer center was conducted. Participants included 302 dyads of children aged 8 to 18 years who survived at least 5 years beyond diagnosis and their primary caregivers. Data analysis was performed from March 13, 2023, to February 29, 2024. Exposures: Diagnosis, caregiver-reported family conflict, self-reported caregiver anxiety, neighborhood-level social vulnerability, and survivor-reported meaning and purpose. Main Outcomes and Measures: Novel symptom-level burden, integrating the attributes of severity and daily activity interference using the pediatric version of the Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events, global cumulative symptom burden, and HRQOL using the EuroQol-5D. Multinomial logistic regression identified characteristics associated with symptom burden; linear regression assessed symptom burden and HRQOL associations. Results: Among 302 survivors (mean [SD] age, 14.2 [2.9] years, mean [SD] time since diagnosis, 10.9 [2.9] years; 153 [50.7%] male), 186 (62.0%) had low, 77 (25.7%) moderate, and 37 (12.3%) high global cumulative symptom burden. Greater caregiver anxiety was associated with moderate (risk ratio [RR], 1.56; 95% CI, 1.09-2.24) global symptom burden. Greater neighborhood deprivation was associated with moderate global symptom burden (RR, 4.86; 95% CI, 1.29-18.26). Survivors with greater meaning/purpose were less likely to have moderate (RR, 0.42; 95% CI, 0.29-0.61) and high (RR, 0.27; 95% CI, 0.16-0.46) global symptom burden. The burden of individual symptoms displayed similar patterns. Low (Cohen d, -0.60; 95% CI, -0.87 to -0.32) and moderate/high (d, -0.98; 95% CI, -1.53 to -0.43) general pain, moderate/high numbness (d, -0.99; 95% CI, -1.69 to -0.29), and moderate/high worry (d, -0.55; 95% CI, -0.99 to -0.11) were associated with lower HRQOL. Conclusions and Relevance: In this cross-sectional study of young childhood cancer survivors, symptom burden was prevalent. Caregiver anxiety and disparity-related neighborhood factors were associated with greater symptom burden, whereas meaning and purpose was a protective factor. Greater specific symptom burden contributed to poorer HRQOL. The findings suggest that interventions targeting resilience and neighborhood adversity may alleviate symptom burden and improve HRQOL.
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Sobreviventes de Câncer , Neoplasias , Qualidade de Vida , Adolescente , Criança , Feminino , Humanos , Masculino , Ansiedade/epidemiologia , Ansiedade/psicologia , Ansiedade/etiologia , Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Cuidadores/psicologia , Estudos Transversais , Neoplasias/psicologia , Qualidade de Vida/psicologia , Resiliência Psicológica , Carga de SintomasRESUMO
Gene discovery reveals new biology, expands the utility of marker-assisted selection, and enables targeted mutagenesis. Still, such discoveries can take over a decade. We present a general strategy, "Agile Genetics," that uses nested, structured populations to overcome common limits on gene resolution. Extensive simulation work on realistic genetic architectures shows that, at population sizes of >5000 samples, single gene-resolution can be achieved using bulk segregant pools. At this scale, read depth and technical replication become major drivers of resolution. Emerging enrichment methods to address coverage are on the horizon; we describe one possibility - iterative depth sequencing (ID-seq). In addition, graph-based pangenomics in experimental populations will continue to maximize accuracy and improve interpretation. Based on this merger of agronomic scale with molecular and bioinformatic innovation, we predict a new age of rapid gene discovery.
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Biologia Computacional , Biologia Computacional/métodos , Genômica/métodos , Sequenciamento de Nucleotídeos em Larga Escala/métodos , Análise de Sequência de DNA/métodosRESUMO
PURPOSE: For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to developing an intervention to improve prognostic communication, we aimed to (1) characterize parent and oncologist perspectives on "best" approaches for prognostic communication, and (2) explore similarities and differences between parent and oncologist perspectives. METHODS: Children with poor-prognosis solid tumors, their parents, and oncologists were followed prospectively for 24 months or until death. Matched semi-structured interviews were conducted with parents and oncologists 0-7 days after medical encounters at timepoints of disease progression or relapse. Reflexive thematic analysis was conducted to describe parent and oncologist impressions of communication quality. RESULTS: A total of 68 interviews were conducted following serial disease reevaluation encounters involving 13 parents and five oncologists. Nine main themes were identified as "best" approaches: (1) speaking with honesty and clarity, (2) leaving room for hope, (3) leaning into a long-standing relationship, (4) personalizing language, (5) empowering the patient and family, (6) collaborating with the multidisciplinary team, (7) providing anticipatory guidance, (8) setting the scene, and (9) creating a therapeutic space. Parents and oncologists generally agreed on themes related to helpful communication approaches, while parents more explicitly described communication pitfalls. CONCLUSION: Parents and oncologists described clear recommendations for helpful communication strategies and pitfalls to avoid during difficult prognostic disclosure. Future work should integrate patient perspectives in the design and testing of an intervention to improve prognostic communication in advanced childhood cancer.
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Comunicação , Neoplasias , Oncologistas , Pais , Humanos , Neoplasias/psicologia , Feminino , Masculino , Criança , Prognóstico , Pais/psicologia , Oncologistas/psicologia , Adolescente , Estudos Prospectivos , Revelação da Verdade , Relações Profissional-Família , Pré-Escolar , Adulto , Relações Médico-Paciente , Pesquisa Qualitativa , Entrevistas como AssuntoRESUMO
BACKGROUND: Bereaved parents experience life-long grief after the death of their child from cancer. Parents who can integrate their grief and maintain their social functioning early in bereavement, even in the setting of concurrent psychosocial distress, have improved outcomes. Identifying the factors associated with bereaved parents' early social functioning can guide future supportive interventions. METHODS: The authors surveyed parents of children who died from cancer at two large centers 6-24 months after death, assessing bereavement experiences using validated and pilot tested tools. Univariable and multivariable logistical regression models were used to examine which family and child demographic, treatment, and end-of-life (EOL) factors were associated with maintained parental social functioning (T scores ≥40 on the Patient-Reported Outcomes Measurement Information System Ability to Participate in Social Roles and Activities-Short Form questionnaire). RESULTS: One hundred twenty-eight parents of 88 children participated (38% household response rate); most parents identified as female (63%) and White (88%). Parents' median age was 47 years (interquartile range, 10 years); and the median time from the child's death to survey completion was 13 months (interquartile range, 10 months). In multivariate modeling, parents without household material hardship and those who felt prepared for EOL circumstances had increased odds of maintained social functioning (odds ratio, 4.7 [95% confidence interval, 1.6-13.7; p < .004] and 5.5 [95% confidence interval, 1.9-15.9; p < .002], respectively). CONCLUSIONS: Parents who felt prepared for their child's EOL and those without household material hardship were more likely to have maintained social functioning in the first 2 years after their child's death. Interventions targeting EOL preparedness and alleviating household material hardship may improve bereavement outcomes.
Assuntos
Luto , Neoplasias , Pais , Humanos , Feminino , Masculino , Criança , Pais/psicologia , Neoplasias/psicologia , Pessoa de Meia-Idade , Adulto , Pré-Escolar , Características da Família , Adolescente , Lactente , Inquéritos e Questionários , Cuidado da Criança/psicologiaRESUMO
Introduction: Children with cancer experience significant pain and anxiety during needle-based procedures. Undertreated pain in children has long-lasting consequences and reduces the efficacy of subsequent analgesic efforts. A validated quality improvement (QI) intervention, known as the "Children's Comfort Promise", includes (1) topical anesthetics, (2) sucrose or breastfeeding for infants, (3) comfort positioning, and (4) distraction techniques, and has been shown to be highly effective in decreasing procedural pain and anxiety in children. However, there is limited data about the adoption, adaptation, and implementation of these interventions in low- and middle-income countries (LMICs). Methods: A QI pilot project utilizing the Model for Improvement of the "Global Comfort Promise" was implemented in four global pediatric cancer hospitals (Lima, Peru; Barretos, Brazil; Pietermaritzburg, South Africa; and Manila, Philippines). Between August 2021 and January 2023, the pilot sites identified a specific aim, co-designed the measurement strategy with St. Jude Children's Research Hospital, and adopted, adapted, and implemented the project at their individual sites. Results: A total of 2,185 different procedures were recorded in the first year of implementation. Most patients were less than 10 years old (60.5%) and solid tumors (37.9%) were the most common diagnosis. Overall, healthcare professionals (98.3%) were satisfied with the procedures. Parents and patients reported that only 33.7% of patients experienced pain during the procedure. All (100%) parents and patients felt the healthcare teams adequately addressed their child's pain. Median self-reported adherence to ≥2 interventions was 98.0%. Challenges to the implementation of the QI initiative included lack of training, turnover of the medical staff, maintaining staff enthusiasm, and access to topical anesthetics. Each site had unique change ideas to implement the initiative. Conclusions: This multi-site, multi-country QI initiative was feasible and was successfully adopted, adapted, and implemented in the LMIC context to improve procedural pain in children (Global Comfort Promise). Additionally, this intervention resulted in high satisfaction of both healthcare professionals and patients/families. Further work is needed to overcome the challenges of topical anesthetic access and education of the workforce. Additional plans include modifying the Global Comfort Promise to include high-quality communication and expanding to additional sites with further refinement of the implementation strategy.
RESUMO
BACKGROUND: Platelet concentrates (PCs) used for transfusion can be produced by apheresis or derived from whole blood (WB). The Reveos device is the first US Food and Drug Administration-approved automated blood processing system that can produce PCs. In this work, we evaluated the quality and function of Reveos-collected PCs stored for 7 days at room temperature. STUDY DESIGN AND METHODS: WB was collected from healthy donors and componentized on the day of collection (Fresh) or after an overnight hold (Overnight). PCs were produced (n = 7 Fresh; n = 6 Overnight), stored at room temperature in plasma, and evaluated on days 1 and 7 for quality metrics, platelet activation, clot formation, and aggregation response. RESULTS: Platelet count was comparable between Fresh and Overnight PCs. A drop in pH was reported in Fresh day 7 PCs (p < .001, vs. day 1) but not in Overnight. Overnight units displayed the lowest levels of P-selectin expression (p = .0008, vs. day 7 Fresh). Reduced clot strength and increased lysis were observed in both Fresh and Overnight units on day 7 (vs. day 1). Overnight-hold PCs resulted in the highest clot strength on day 7 (p = .0084, vs. Fresh). No differences in aggregation were reported between groups. CONCLUSION: Reveos-processed PCs produced from overnight-hold WB performed better in hemostatic function assays and displayed reduced activation compared to fresh WB-derived PCs, although both PC groups maintained platelet quality throughout storage. Utilization of overnight WB for PC preparation with Reveos holds promise as an alternative method of producing platelets for transfusion purposes.
Assuntos
Plaquetas , Preservação de Sangue , Temperatura , Humanos , Preservação de Sangue/métodos , Plaquetas/metabolismo , Plaquetas/citologia , Ativação Plaquetária/efeitos dos fármacos , Fatores de Tempo , Plaquetoferese/métodos , Contagem de Plaquetas , Transfusão de Plaquetas/métodosRESUMO
Thin-cap fibroatheroma (TCFA) is a prominent risk factor for plaque rupture. Intravascular optical coherence tomography (IVOCT) enables identification of fibrous cap (FC), measurement of FC thicknesses, and assessment of plaque vulnerability. We developed a fully-automated deep learning method for FC segmentation. This study included 32,531 images across 227 pullbacks from two registries (TRANSFORM-OCT and UHCMC). Images were semi-automatically labeled using our OCTOPUS with expert editing using established guidelines. We employed preprocessing including guidewire shadow detection, lumen segmentation, pixel-shifting, and Gaussian filtering on raw IVOCT (r,θ) images. Data were augmented in a natural way by changing θ in spiral acquisitions and by changing intensity and noise values. We used a modified SegResNet and comparison networks to segment FCs. We employed transfer learning from our existing much larger, fully-labeled calcification IVOCT dataset to reduce deep-learning training. Postprocessing with a morphological operation enhanced segmentation performance. Overall, our method consistently delivered better FC segmentation results (Dice: 0.837 ± 0.012) than other deep-learning methods. Transfer learning reduced training time by 84% and reduced the need for more training samples. Our method showed a high level of generalizability, evidenced by highly-consistent segmentations across five-fold cross-validation (sensitivity: 85.0 ± 0.3%, Dice: 0.846 ± 0.011) and the held-out test (sensitivity: 84.9%, Dice: 0.816) sets. In addition, we found excellent agreement of FC thickness with ground truth (2.95 ± 20.73 µm), giving clinically insignificant bias. There was excellent reproducibility in pre- and post-stenting pullbacks (average FC angle: 200.9 ± 128.0°/202.0 ± 121.1°). Our fully automated, deep-learning FC segmentation method demonstrated excellent performance, generalizability, and reproducibility on multi-center datasets. It will be useful for multiple research purposes and potentially for planning stent deployments that avoid placing a stent edge over an FC.