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1.
Pediatr Cardiol ; 2024 May 03.
Artigo em Inglês | MEDLINE | ID: mdl-38700711

RESUMO

Parents of children in the pediatric cardiac intensive care unit (CICU) are often unprepared for family meetings (FM). Clinicians often do not follow best practices for communicating with families, adding to distress. An interprofessional team intervention for FM is feasible, acceptable, and positively impacts family preparation and conduct of FM in the CICU. We implemented a family- and team-support intervention for conducting FM and conducted a pretest-posttest study with parents of patients selected for a FM and clinicians. We measured feasibility, fidelity to intervention protocol, and parent acceptability via questionnaire and semi-structured interviews. Clinician behavior in meetings was assessed through semantic content analyses of meeting transcripts tracking elicitation of parental concerns, questions asked of parents, and responses to parental empathic opportunities. Logistic and ordinal logistic regression assessed intervention impact on clinician communication behaviors in meetings comparing pre- and post-intervention data. Sixty parents (95% of approached) were enrolled, with collection of 97% FM and 98% questionnaire data. We accomplished > 85% fidelity to intervention protocol. Most parents (80%) said the preparation worksheet had the right amount of information and felt positive about families receiving this worksheet. Clinicians were more likely to elicit parental concerns (adjusted odds ratio = 3.42; 95%CI [1.13, 11.0]) in post-intervention FM. There were no significant differences in remaining measures. Implementing an interprofessional team intervention to improve family preparation and conduct of FM is locally feasible, acceptable, and changes clinician behaviors. Future research should assess broader impact of training on clinicians, patients, and families.

2.
J Hosp Med ; 2024 Apr 10.
Artigo em Inglês | MEDLINE | ID: mdl-38598748

RESUMO

BACKGROUND: Scientific writing is a core component of academic hospital medicine, and yet finding time to engage in deeply focused writing is difficult in part due to the highly clinical, 24/7 nature of the specialty that can limit opportunities for writing-focused collaboration and mentorship. OBJECTIVE: Our objective was to develop and evaluate an academic writing retreat program. METHODS: We drafted a set of key retreat features to guide implementation of a 3-day, 2-night retreat program held within a 2 h radius of our hospital. Agendas included writing blocks ranging from 45 to 90 min interspersed with breaks and opportunities for feedback, exercise, and preparing meals together. After each retreat, we distributed an evaluation with multiple choice and free text response options to characterize retreat helpfulness and later gathered data on the status of each paper and grant worked on. RESULTS: We held 4 retreats between September 2022 and October 2023, engaging 18 faculty and fellows at a cost of $296 per attendee per retreat. In evaluations, nearly 80% reported that the retreat was extremely helpful, and comments praised the highly mentored environment, enriching community of colleagues, and release from commitments that get in the way of writing. Of the 24 papers attendees worked on, 12 have been accepted and 6 are under review. Of the 4 grant proposals, 2 are under review. CONCLUSIONS: We implemented a low-cost, productive writing retreat program that attendees reported was helpful in supporting deep work and represented a meaningful step toward building a community centered around academic writing.

3.
Pediatrics ; 153(5)2024 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-38572556

RESUMO

BACKGROUND AND OBJECTIVES: Parents and siblings of very low birth weight, premature infants are at risk for poor mental health outcomes with increased mental health care usage. Knowledge regarding mental health care use patterns could guide interventions. METHODS: This retrospective cohort study included US families with commercial insurance coverage from a single carrier. Neonates born at ≤30 weeks' gestational age or with a birth weight <1500 g were identified by insurance claim data between July 1, 2015, and June 30, 2016. Each case neonate family was matched with up to 4 control families. RESULTS: The study included 1209 case and 1884 control neonates (with 134 deaths among only the case neonates [11.1% of cases]); 2003 case and 3336 control parents (mean [SD] age, 34.6 [5.4] years; 2858 [53.5%] female); and 884 case and 1878 control siblings (mean [SD] age, 6.8 [5.5] years; 1375 [49.8%] female). Compared with controls, more case parents used mental health care over the first year after birth hospitalization discharge. Higher usage was observed for bereaved case parents soon after their child's death. A smaller proportion of bereaved case siblings received mental health care compared with controls. Although nonbereaved case parents returned toward the proportion of use observed in controls, nonbereaved case female siblings, bereaved case female and male siblings, and bereaved male parents experienced continued differences. CONCLUSIONS: Understanding and meeting the mental health care needs of parents and siblings of very low birth weight premature neonates can be guided by these findings, including elevated and prolonged needs of bereaved parents and siblings.


Assuntos
Recém-Nascido de muito Baixo Peso , Serviços de Saúde Mental , Pais , Irmãos , Humanos , Feminino , Masculino , Irmãos/psicologia , Recém-Nascido , Estudos Retrospectivos , Pais/psicologia , Adulto , Serviços de Saúde Mental/estatística & dados numéricos , Criança , Estudos de Casos e Controles , Pré-Escolar , Estudos de Coortes
4.
Pediatr Cardiol ; 45(5): 1064-1071, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38453700

RESUMO

Guidelines advocate for integrating palliative care into the management of heart failure (HF) and of children with life-limiting disease. The potential impact of palliative care integration into pediatric HF on patient-centered outcomes is poorly understood. The present study sought to assess the association of programmatic implementation of palliative care into the heart transplant evaluation process with hospital-free days (HFD) and end of life (EOL) treatment choices. The study included patients less than 19 years of age who underwent a heart transplant evaluation between February 2012 and April 2020 at a single center. Patients evaluated in the programmatic palliative care (PPC) era (January 2016-April 2020) were compared to patients evaluated in the pre-PPC era (February 2012-December 2015). The study included 188 patients, with 91 (48%) in the PPC era and 97 (52%) in the pre-PCC era. Children < 1 year of age at the time of the evaluation represented 32% of the cohort. 52% of patients had single ventricle physiology. PPC was not significantly associated with increased HFD (IRR 0.94 [95% CI 0.79-1.2]). PPC was however associated with intensity of EOL care with decreased mechanical ventilation (OR 0.12 [95% CI 0.02-0.789], p = 0.03) and decreased use of ionotropic support (OR 0.13 [95% CI 0.02-0.85], p =0.03). PPC in pediatric heart transplant evaluations may be associated with less invasive interventions at EOL.


Assuntos
Insuficiência Cardíaca , Transplante de Coração , Cuidados Paliativos , Encaminhamento e Consulta , Humanos , Masculino , Feminino , Pré-Escolar , Criança , Lactente , Insuficiência Cardíaca/terapia , Insuficiência Cardíaca/cirurgia , Adolescente , Estudos Retrospectivos , Assistência Terminal
5.
JAMA Netw Open ; 7(3): e241852, 2024 Mar 04.
Artigo em Inglês | MEDLINE | ID: mdl-38488795

RESUMO

Importance: Children requiring care in a pediatric intensive care unit (PICU) are known to have increased risk of subsequent mortality. Children with severe neurologic impairment (SNI)-who carry neurologic or genetic diagnoses with functional impairments and medical complexity-are frequently admitted to PICUs. Although recurrent PICU critical illness episodes (PICU-CIEs) are assumed to indicate a poor prognosis, the association between recurrent PICU-CIEs and mortality in this patient population is poorly understood. Objective: To assess the association between number of recent PICU-CIEs and survival among children with severe neurologic impairment. Design, Setting, and Participants: This population-based retrospective cohort study used health administrative data from April 1, 2002, to March 31, 2020, on 4774 children born between 2002 and 2019 with an SNI diagnosis code in an Ontario, Canada, hospital record before 16 years of age and a first PICU-CIE from 2002 to 2019. Data were analyzed from November 2021 to June 2023. Exposure: Pediatric intensive care unit critical illness episodes (excluding brief postoperative PICU admissions). Main Outcome and Measures: One-year survival conditioned on the number and severity (length of stay >15 days or use of invasive mechanical ventilation) of PICU-CIEs in the preceding year. Results: In Ontario, 4774 children with SNI (mean [SD] age, 2.1 [3.6] months; 2636 [55.2%] <1 year of age; 2613 boys [54.7%]) were discharged alive between 2002 and 2019 after their first PICU-CIE. Ten-year survival after the initial episode was 81% (95% CI, 79%-82%) for children younger than 1 year of age and 84% (95% CI, 82%-86%) for children 1 year of age or older; the age-stratified curves converged by 15 years after the initial episode at 79% survival (95% CI, 78%-81% for children <1 year and 95% CI, 75%-84% for children ≥1 year). Adjusted for age category and demographic factors, the presence of nonneurologic complex chronic conditions (adjusted hazard ratio [AHR], 1.70 [95% CI, 1.43-2.02]) and medical technology assistance (AHR, 2.32 [95% CI, 1.92-2.81]) were associated with increased mortality. Conditional 1-year mortality was less than 20% regardless of number or severity of recent PICU-CIEs. Among children with high-risk PICU-CIEs, 1-year conditional survival decreased from 90% (95% CI, 89%-91%) after the first PICU-CIE to 81% (95% CI, 77%-86%) after the fourth PICU-CIE. Conclusions and Relevance: This cohort study of children with SNI demonstrated a modest dose-dependent association between PICU-CIEs and short-term mortality. These data did not support the conventional wisdom that recurrent PICU admissions are associated with subsequent high mortality risk.


Assuntos
Estado Terminal , Doenças do Sistema Nervoso , Criança , Masculino , Humanos , Pré-Escolar , Estudos de Coortes , Estudos Retrospectivos , Cuidados Críticos , Ontário/epidemiologia
7.
Cardiol Young ; 34(2): 282-290, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37357911

RESUMO

INTRODUCTION: Understanding parents' communication preferences and how parental and child characteristics impact satisfaction with communication is vital to mitigate communication challenges in the cardiac ICU. METHODS: This cross-sectional survey was conducted from January 2019 to March 2020 in a paediatric cardiac ICU with parents of patients admitted for at least two weeks. Family satisfaction with communication with the medical team was measured using the Communication Assessment Tool for Team settings. Clinical characteristics were collected via Epic, Pediatric Cardiac Critical Care Consortium local entry and Society for Thoracic Surgeons Congenital Heart Surgery Databases. Associations between communication score and parental mood, stress, perceptions of clinical care, and demographic characteristics along with patient demographic and clinical characteristics were examined. Multivariable ordinal models were conducted with characteristics significant in bivariate analysis. RESULTS: In total, 93 parents of 84 patients (86% of approached) completed surveys. Parents were 63% female and 70% White. Seventy per cent of patients were <6 months old at admission, 25% had an extracardiac abnormality, and 80% had a cardiac surgery this admission. Parents of children with higher pre-surgical risk of mortality scores (OR 2.875; 95%CI 1.076-7.678), presence of surgical complications (72 [63.0, 75.0] vs. 64 [95%CI 54.6, 73] (p = 0.0247)), and greater satisfaction with care in the ICU (r = 0.93922; p < 0.0001) had significantly higher communication scores. CONCLUSION: These findings can prepare providers for scenarios with higher risk for communication challenges and demonstrate the need for further investigation into interventions that reduce parental anxiety and improve communication for patients with unexpected clinical trajectories.


Assuntos
Unidades de Terapia Intensiva Pediátrica , Satisfação Pessoal , Criança , Humanos , Feminino , Lactente , Masculino , Estudos Transversais , Comunicação , Pais
8.
J Pediatr Gastroenterol Nutr ; 77(6): 741-747, 2023 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-37755879

RESUMO

OBJECTIVES: Previous studies have shown increasing hospitalizations for pediatric cholelithiasis, but recent trends are unknown. We conducted a national study of pediatric cholelithiasis to characterize recent hospitalization rate trends. METHODS: Retrospective repeated cross-sectional analysis of pediatric (age < 18 years) cholelithiasis-associated hospitalizations combining data from the 2006 through 2019 Kids' Inpatient Database releases. The primary outcome of interest was the national hospitalization rate (per 100,000 children). We examined rates stratified by age group and sex and characterized hospitalization outcomes and characteristics for pediatric cholelithiasis. RESULTS: Twenty-nine thousand one hundred two hospital records representing 42,282 gallstone-associated hospitalizations were identified. The hospitalization rate declined from 12.9 [95% confidence interval (CI): 12.6-13.2] in 2006 to 9.1 (95% CI: 8.8-9.3) in 2019. Consistent with the literature, hospitalizations occurred most often among teenagers (71%) and individuals with female sex (72%). The proportion of hospitalizations at freestanding children's hospitals increased significantly (from 18.2% to 35.1%). Finally, the proportion of hospitalizations involving a potentially medical predisposing condition increased significantly. CONCLUSIONS: The estimated US hospitalization rate for pediatric cholelithiasis declined by 30% between 2006 and 2019. Female patients and teenagers had the largest decline, and hospitalizations increasingly occurred at freestanding children's hospitals. Potential explanations include potential changes in delivery of care as well as changes in population disease burden.


Assuntos
Cálculos Biliares , Hospitalização , Adolescente , Criança , Humanos , Feminino , Estados Unidos/epidemiologia , Lactente , Estudos Retrospectivos , Estudos Transversais , Hospitais Pediátricos
9.
JAMA ; 330(14): 1333-1334, 2023 Oct 10.
Artigo em Inglês | MEDLINE | ID: mdl-37728956

RESUMO

In this narrative medicine essay, a pediatrician-medical ethicist navigates the decision to honor his 87-year-old mother's wishes to refrain from cancer treatment and elects not to tell her of a mass in her liver discovered by a CT scan.

10.
Pediatrics ; 152(4)2023 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-37706240

RESUMO

The neonatology literature often refers to medical uncertainty and specifically the challenges of predicting morbidity for extremely premature infants, who can have widely varying outcomes. Less has been written about situations in which diagnoses are simply unknown or unattainable. This case highlights the importance of communication amidst uncertainty from a lack of knowledge about aspects of a patient's condition. Using epidemiologic and clinical reasoning, the authors challenge the assumption that diagnostic uncertainty must necessarily portend prognostic uncertainty. When physicians' quest for a diagnosis becomes burdensome and detrimental to the infant's quality of life, this should be abandoned and replaced by focusing on prognosis. The authors focus on the shift of the physician's role toward one of support, assisting the family in ascribing meaning to the dying experience. By focusing on prognosis and support, communication can proceed with more clarity, understanding, and empathy.


Assuntos
Neonatologia , Médicos , Humanos , Incerteza , Qualidade de Vida , Prognóstico
12.
J Hosp Med ; 18(8): 693-702, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37401165

RESUMO

BACKGROUND: Children hospitalized in medical hospitals are at risk of agitation. Physical restraint may be used to maintain patient and staff safety during de-escalation, but physical restraint use is associated with physical and psychological adverse events. OBJECTIVE: We sought to better understand which work system factors help clinicians prevent patient agitation, improve de-escalation, and avoid physical restraint. DESIGN, SETTING, AND PARTICIPANTS: We used directed content analysis to extend the Systems Engineering Initiative for Patient Safety model to clinicians working with children at risk for agitation at a freestanding children's hospital. INTERVENTION, MAIN OUTCOME, AND MEASURES: We conducted semistructured interviews to examine how five clinician work system factors affected patient agitation, de-escalation, and restraint: person, environment, tasks, technology and tools, and organization. Interviews were recorded, transcribed, and analyzed until saturation. RESULTS: Forty clinicians participated in this study, including 21 nurses, 15 psychiatric technicians, 2 pediatric physicians, 1 psychologist, and 1 behavior analyst. Work system factors that contributed to patient agitation were medical tasks like vital signs and the hospital environment including bright lights and neighboring patients' noises. Supports that helped clinicians de-escalate patients included adequate staffing and accessible toys and activities. Participants indicated that organizational factors were integral to team de-escalation, drawing connections between units' teamwork and communication cultures and their likelihood of successful de-escalation without the use of physical restraint. CONCLUSION: Clinicians perceived that medical tasks, hospital environmental factors, clinician attributes, and team communication influenced patients' agitation, de-escalation, and physical restraint. These work system factors provide opportunities for future multi-disciplinary interventions to reduce physical restraint use.


Assuntos
Segurança do Paciente , Restrição Física , Humanos , Criança , Restrição Física/efeitos adversos , Restrição Física/psicologia , Hospitais Pediátricos , Cognição , Agitação Psicomotora/diagnóstico , Agitação Psicomotora/etiologia
13.
J Perinatol ; 43(11): 1343-1348, 2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-37393398

RESUMO

The so called "Artificial Placenta" and "Artificial Womb" (EXTEND) technologies share a common goal of improving outcomes for extreme premature infants. Beyond that goal, they are very dissimilar and, in our view, differ sufficiently in their technology, intervention strategy, demonstrated physiology, and risk profiles that bundling them together for consideration of the ethical challenges in designing first in human trials is misguided. In this response to the commentary by Kukora and colleagues, we will provide our perspective on these differences, and how they impact ethical clinical study design for first-in-human trials of safety/feasibility, and subsequently efficacy of the two technologies.


Assuntos
Recém-Nascido Prematuro , Placenta , Gravidez , Recém-Nascido , Lactente , Feminino , Humanos , Útero , Tecnologia
14.
JAMA Pediatr ; 177(8): 800-807, 2023 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-37306979

RESUMO

Importance: While knowing the goals of care (GOCs) for children receiving pediatric palliative care (PPC) are crucial for guiding the care they receive, how parents prioritize these goals and how their priorities may change over time is not known. Objective: To determine parental prioritization of GOCs and patterns of change over time for parents of children receiving palliative care. Design, Setting, and Participants: A Pediatric Palliative Care Research Network's Shared Data and Research cohort study with data collected at 0, 2, 6, 12, 18, and 24 months in hospital, outpatient, or home settings from April 10, 2017, to February 15, 2022, at 7 PPC programs based at children's hospitals across the US. Participants included parents of patients, birth to 30 years of age, who received PPC services. Exposures: Analyses were adjusted for demographic characteristics, number of complex chronic conditions, and time enrolled in PPC. Main Outcomes: Parents' importance scores, as measured using a discrete choice experiment, of 5 preselected GOCs: seeking quality of life (QOL), health, comfort, disease modification, or life extension. Importance scores for the 5 GOCs summed to 100. Results: A total of 680 parents of 603 patients reported on GOCs. Median patient age was 4.4 (IQR, 0.8-13.2) years and 320 patients were male (53.1%). At baseline, parents scored QOL as the most important goal (mean score, 31.5 [SD, 8.4]), followed by health (26.3 [SD, 7.5]), comfort (22.4 [SD, 11.7]), disease modification (10.9 [SD, 9.2]), and life extension (8.9 [SD, 9.9]). Importantly, parents varied substantially in their baseline scores for each goal (IQRs more than 9.4), but across patients in different complex chronic conditions categories, the mean scores varied only slightly (means differ 8.7 or less). For each additional study month since PPC initiation, QOL was scored higher by 0.06 (95% CI, 0.04-0.08) and comfort scored higher by 0.3 (95% CI, 0-0.06), while the importance score for life extension decreased by 0.07 (95% CI, 0.04-0.09) and disease modification by 0.02 (95% CI, 0-0.04); health scores did not significantly differ from PPC initiation. Conclusions and Relevance: Parents of children receiving PPC placed the highest value on QOL, but with considerable individual-level variation and substantial change over time. These findings emphasize the importance of reassessing GOCs with parents to guide appropriate clinical intervention.


Assuntos
Cuidados Paliativos , Qualidade de Vida , Criança , Humanos , Masculino , Lactente , Pré-Escolar , Adolescente , Feminino , Estudos de Coortes , Pais , Planejamento de Assistência ao Paciente , Doença Crônica
15.
Pediatrics ; 151(6)2023 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-37153965

RESUMO

BACKGROUND AND OBJECTIVES: Pediatric residents are at high risk for moral distress, knowing the moral or ethically right thing to do but feeling unable to do it, which is associated with poor patient care and burnout. Researchers have proposed numerous interventions to reduce distress, but few (if any) have been supported by experimental evidence. In this study, we used an experimental method to provide proof-of-concept evidence regarding the effect of various simple supports on pediatric residents' reported degree of moral distress. METHODS: We conducted a study of pediatric residents using a split sample experimental design. The questionnaire contained 6 clinical vignettes describing scenarios expected to cause moral distress. For each case, participants were randomly assigned to see 1 of 2 versions that varied only regarding whether they included a supportive statement. After reading each of the 6 cases, participants reported their level of associated moral distress. RESULTS: Two hundred and twenty respondents from 5 residency programs completed the experiment. Cases were perceived to represent common scenarios that cause distress for pediatric residents. The addition of a supportive statement reduced moral distress in 4 of the 6 cases. CONCLUSIONS: In this proof-of-concept study, simple yet effective interventions provided support by offering the resident empathy and shared perspective or responsibility. Interventions that were purely informational were not effective in reducing moral distress.


Assuntos
Esgotamento Profissional , Humanos , Criança , Esgotamento Profissional/prevenção & controle , Inquéritos e Questionários , Princípios Morais
16.
J Pediatr ; 259: 113455, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37172804

RESUMO

OBJECTIVE: To assess which potential future outcomes are most important to parents of children with bronchopulmonary dysplasia, a disease that affects future respiratory, medical, and developmental outcomes for children born preterm. STUDY DESIGN: We recruited parents from 2 children's hospitals' neonatal follow-up clinics and elicited their importance rating for 20 different potential future outcomes associated with bronchopulmonary dysplasia. These outcomes were identified and selected through a literature review and discussions with panels of parents and clinician stakeholders, via a discrete choice experiment. RESULTS: One hundred and 5 parents participated. Overall, parents ranked "Will my child be more vulnerable to other problems because of having lung disease?" as the most important outcome, with other respiratory health related outcomes also highly ranked. Outcomes related to child development and effects on the family were among the lowest ranked. Individually, parents rated outcomes differently, resulting in a broad distribution of importance scores for many of the outcomes. CONCLUSIONS: The overall rankings suggest that parents prioritize future outcomes related to physical health and safety. Notably, for guiding research, some top-rated outcomes are not traditionally measured in outcome studies. For guiding individual counseling, the broad distribution of importance scores for many outcomes highlights the extent to which parents differ in their prioritization of outcomes.


Assuntos
Displasia Broncopulmonar , Recém-Nascido , Humanos , Criança , Displasia Broncopulmonar/terapia , Pais/psicologia , Desenvolvimento Infantil , Avaliação de Resultados em Cuidados de Saúde
17.
JAMA Netw Open ; 6(5): e2313503, 2023 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-37184834

RESUMO

Importance: Robust quality measures to benchmark end-of-life care for children with cancer do not currently exist; 28 candidate patient-centered quality measures were previously developed. Objective: To prioritize quality measures among parents who lost a child to cancer. Design, Setting, and Participants: This survey study was conducted using an electronic, cross-sectional discrete choice experiment (DCE) with maximum difference scaling from January to June 2021 in the US. In each of 21 questions in the DCE, participants were presented with a set of 4 quality measures and were asked to select the most and least important measures within each set. All 28 quality measures were presented an equal number of times in different permutations. In the volunteer sample, 69 eligible bereaved parents enrolled in the study; 61 parents completed the DCE (participation rate, 88.4%). Main Outcomes and Measures: Using choices participants made, a hierarchical bayesian multinomial logistic regression was fit to derive mean importance scores with 95% credible intervals (95% Crs) for each quality measure, representing the overall probability of a quality measure being selected as most important. Importance scores were rescaled proportionally from 0 to 100, with the sum of scores for all quality measures adding up to 100. This enabled interpretation of scores as the relative importance of quality measures. Results: Participants included 61 bereaved parents (median [range] age, 48 [24-74] years; 55 individuals self-identified as women [90.2%]; 1 American Indian or Alaska Native [1.6%], 1 Asian [1.6%], 2 Black or African American [3.3%], 1 Native Hawaiian or Pacific Islander, and 58 White [91.8%]; 58 not Hispanic or Latinx [95.1%]). Highest-priority quality measures by mean importance score included having a child's symptoms treated well (9.25 [95% Cr, 9.06-9.45]), feeling that a child's needs were heard by the health care team (8.39 [95% Cr, 8.05-8.73]), and having a goal-concordant end-of-life experience (7.45 [95% Cr, 6.84-8.05]). Lowest-priority quality measures included avoiding chemotherapy (0.33 [95% Cr, 0.21-0.45]), provision of psychosocial support for parents (1.01 [95% Cr, 0.57-1.45]), and avoiding the intensive care unit (1.09 [95% Cr, 0.74-1.43]). Rank-ordering measures by mean importance revealed that symptom management was 9 times more important to parents than psychosocial support for themselves. Conclusions and Relevance: This study found that bereaved parents prioritized end-of-life quality measures focused on symptom management and goal-concordant care while characterizing quality measures assessing their own psychosocial support and their child's hospital resource use as substantially less important. These findings suggest that future research should explore innovative strategies to measure care attributes that matter most to families of children with advanced cancer.


Assuntos
Neoplasias , Assistência Terminal , Criança , Humanos , Feminino , Pessoa de Meia-Idade , Estudos Transversais , Teorema de Bayes , Pais/psicologia , Assistência Terminal/psicologia , Morte , Neoplasias/terapia , Neoplasias/psicologia
18.
JAMA Pediatr ; 177(6): 557-558, 2023 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-37067812

RESUMO

This Viewpoint discusses ethical issues surrounding the use of artificial womb technology for extremely premature infants.


Assuntos
Recém-Nascido Prematuro , Sistemas de Manutenção da Vida , Humanos , Recém-Nascido
19.
Endocr Pract ; 29(7): 517-524, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-37088146

RESUMO

OBJECTIVE: Boys outnumber girls in short stature evaluations and growth hormone treatment despite absence of gender differences in short stature prevalence. Family views on short stature influence medical management, but gender-based analysis of these views is lacking. This study explored endocrine patients' and their parents' perceptions of short stature and its impact on quality of life by patient gender. METHODS: Patients aged 8 to 14 years undergoing provocative growth hormone testing and 1 parent each completed semistructured interviews. Clinical data were extracted by chart review. RESULTS: Twenty-four patient-parent dyads (6 female patients, 22 mothers; predominantly non-Hispanic White) participated. Six major themes emerged: (1) patients' perceptions of their short stature were similar by gender, (2) physical experiences of short stature were similar by gender, (3) social experiences of short stature were both similar and different by gender, (4) parental perceptions of short stature as a factor limiting their child's functionality were similar by gender, (5) concern about societal stigma related to short stature arose for both genders, and (6) patients' perceptions of parental messaging about the import of their short stature were similar by gender. CONCLUSION: Our data reveal more similarities than differences between genders in patient perceptions and patient and parent-reported experiences of short stature. Worry about stature-related stigma was noted for patients of both genders. Parental messaging about short stature emerged as an important area to explore further by patient gender. Our findings suggest that clinicians should be wary of making gender or stigma-based assumptions when evaluating children with short stature.


Assuntos
Nanismo , Hormônio do Crescimento Humano , Criança , Feminino , Humanos , Masculino , Nanismo/tratamento farmacológico , Nanismo/psicologia , Hormônio do Crescimento , Pais/psicologia , Qualidade de Vida , Estigma Social , Sexismo , Estatura
20.
Anesth Analg ; 136(6): 1133-1142, 2023 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-37014983

RESUMO

BACKGROUND: Neuromuscular/neurologic disease confers increased risk of perioperative mortality in children. Some patients require tracheostomy and/or feeding tubes to ameliorate upper airway obstruction or respiratory failure and reduce aspiration risk. Empiric differences between patients with and without these devices and their association with postoperative mortality have not been previously assessed. METHODS: This retrospective cohort study using the Pediatric Health Information System measured 3- and 30-day in-hospital postsurgical mortality among children 1 month to 18 years of age with neuromuscular/neurologic disease at 44 US children's hospitals, from April 2016 to October 2018. We summarized differences between patients presenting for surgery with and without these devices using standardized differences. Then, we calculated 3- and 30-day mortality among patients with tracheostomy, feeding tube, both, and neither device, overall and stratified by important exposures, using Fisher exact test to test whether differences were significant. RESULTS: There were 43,193 eligible patients. Unadjusted 3-day mortality was 1.3% (549/43,193); 30-day mortality was 2.7% (1168/43,193). Most (79.1%) used neither a feeding tube or tracheostomy, 1.2% had tracheostomy only, 15.5% had feeding tube only, and 4.2% used both devices. Compared to children with neither device, children using either or both devices were more likely to have multiple CCCs, dysphagia, chronic pulmonary disease, cerebral palsy, obstructive sleep apnea, or malnutrition, and a prolonged intensive care unit (ICU) stay within the previous year. They were less likely to present for high-risk surgeries (33% vs 57%). Having a feeding tube was associated with decreased 3-day mortality overall compared to having neither device (0.9% vs 1.3%, P = .003), and among children having low-risk surgery, and surgery during urgent or emergent hospitalizations. Having both devices was associated with decreased 3-day mortality among children having low-risk surgery (0.8% vs 1.9%; P = .013), and during urgent or emergent hospitalizations (1.6% vs 2.9%; P = .023). For 30-day mortality, having a feeding tube or both devices was associated with lower mortality when the data were stratified by the number of CCCs. CONCLUSIONS: Patients requiring tracheostomy, feeding tube, or both are generally sicker than patients without these devices. Despite this, having a feeding tube was associated with lower 3-day mortality overall and lower 30-day mortality when the data were stratified by the number of CCCs. Having both devices was associated with lower 3-day mortality in patients presenting for low-risk surgery, and surgery during urgent or emergent hospitalizations.


Assuntos
Hospitalização , Traqueostomia , Humanos , Criança , Traqueostomia/efeitos adversos , Estudos Retrospectivos , Nutrição Enteral/efeitos adversos , Hospitais
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