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1.
J Pediatr Intensive Care ; 12(1): 63-70, 2023 Mar.
Article in English | MEDLINE | ID: mdl-36742256

ABSTRACT

Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC referral at the time of heart disease diagnosis provides early involvement in the disease trajectory, allowing PPC teams to longitudinally support patients and families with symptom management, complex medical decision-making, and advanced care planning. We analyzed 113 hospitalized pediatric patients with a primary diagnosis of heart disease and a PPC consult to identify timing of first PPC consultation in relation to diagnosis, complex chronic conditions (CCC), and death. The median age of heart disease diagnosis was 0 days with a median of two CCCs while PPC consultation did not occur until a median age of 77 days with a median of four CCCs. Median time between PPC consult and death was 33 days (interquartile range: 7-128). Death often occurred in the intensive care unit ( n = 36, 67%), and the most common mode was withdrawal of life-sustaining therapies ( n = 31, 57%). PPC referral often occurred in the context of medical complexity and prolonged hospitalization. Referral close to the time of heart disease diagnosis would allow patients and families to fully utilize PPC benefits that exist outside of end-of-life care and may influence the mode and location of death. PPC consultation should be considered at the time of heart disease diagnosis, especially in neonates and infants with CCCs.

2.
J Child Health Care ; : 13674935231154829, 2023 Feb 07.
Article in English | MEDLINE | ID: mdl-36749657

ABSTRACT

Critical illness resulting in a pediatric intensive care unit (PICU) admission is a profoundly stressful experience for a child and their family. Increasing evidence for emotional and behavioral sequelae post-PICU emphasizes a need to provide better support for families throughout this period of care and recovery. The aim of this qualitative investigation was to identify salient and modifiable aspects of a critical care experience that can be addressed to better support families of critically ill children. Individual semi-structured interviews were conducted with 26 caregivers of children who survived a PICU admission. Interviews were audio-recorded and transcribed verbatim; themes were identified via thematic analysis. Caregivers were enrolled using convenience sampling from seven tertiary care PICUs in the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. Themes from caregiver interviews were identified within two overarching categories containing three themes each. Advice for future PICU families: (1) Be intentional about caring for your own well-being, (2) speak up, ask questions, and challenge decisions you're not comfortable with, and (3) continue to engage with your child. Characteristics of a satisfactory PICU experience: (1) A caregiver-provider relationship of mutual trust established through clear communication and respectful collaboration, (2) hospital environments that provide physical and social supports to maintain humanity in healthcare, and (3) preparing families for care transitions. Targeted, interdisciplinary approaches to partner with families during critical care may improve their PICU experience and contribute to improved long-term outcomes for PICU survivors.

3.
J Pain Symptom Manage ; 65(2): 73-80, 2023 02.
Article in English | MEDLINE | ID: mdl-36384179

ABSTRACT

CONTEXT: Children with medical complexity (CMC) are often cared for by both complex care and palliative care pediatric teams. No prior research has investigated the relationship between these two disciplines. OBJECTIVES: The purpose of this article is to investigate challenges that complex care programs face in caring for children with medical complexity (CMC), as well as to explore whether identified challenges could be met through collaboration with pediatric palliative care or additional training for complex care teams. METHODS: Medical providers who self-identified as providing clinical care to children with medical complexity were asked to complete an online anonymous survey. Subjects were recruited through a Complex Care listerv. Data were analyzed using descriptive statistics. RESULTS: 85 subjects completed the survey, of whom 87.1% (n=74) were physicians, and 12.0% (n=11) were nurse practitioners. Subjects reported several challenges in caring for CMC, including symptom management, establishing goals of care, advance care planning, and coordination of care. A majority of subjects reported benefitting from palliative care consultative assistance in each subject area. Most subjects described their relationship with palliative care as a close partnership with frequent overlap. CONCLUSIONS: The evolving field of pediatric complex care is associated with an array of challenges in caring for CMC. Many of these challenges include competency areas where palliative care providers receive concerted training. Our research suggests greater palliative care involvement in the CMC population can benefit complex care teams and patients, given the expertise palliative providers can bring to the population and the discipline of complex care.


Subject(s)
Hospice and Palliative Care Nursing , Physicians , Child , Humans , Palliative Care , Needs Assessment , Surveys and Questionnaires
4.
Cardiol Young ; 33(10): 1846-1852, 2023 Oct.
Article in English | MEDLINE | ID: mdl-36278475

ABSTRACT

OBJECTIVES: Compare rates, clinical characteristics, and outcomes of paediatric palliative care consultation in children supported on extracorporeal membrane oxygenation admitted to a single-centre 16-bed cardiac or a 28-bed paediatric ICU. METHODS: Retrospective review of clinical characteristics and outcomes of children (aged 0-21 years) supported on extracorporeal membrane oxygenation between January, 2017 and December, 2019 compared by palliative care consultation. MEASUREMENTS AND RESULTS: One hundred children (N = 100) were supported with extracorporeal membrane oxygenation; 19% received a palliative care consult. Compared to non-consulted children, consulted children had higher disease severity measured by higher complex chronic conditions at the end of extracorporeal membrane oxygenation hospitalisation (5 versus. 3; p < 0.001), longer hospital length of stay (92 days versus 19 days; p < 0.001), and higher use of life-sustaining therapies after decannulation (79% versus 23%; p < 0.001). Consultations occurred mainly for longitudinal psychosocial-spiritual support after patient survived device deployment with a median of 27 days after cannulation. Most children died in the ICU after withdrawal of life-sustaining therapies regardless of consultation status. Over two-thirds of the 44 deaths (84%; n = 37) occurred during extracorporeal membrane oxygenation hospitalisation. CONCLUSIONS: Palliative care consultation was rare showing that palliative care consultation was not viewed as an acute need and only considered when the clinical course became protracted. As a result, there are missed opportunities to involve palliative care earlier and more frequently in the care of extracorporeal membrane survivors and non-survivors and their families.


Subject(s)
Extracorporeal Membrane Oxygenation , Child , Humans , Palliative Care , Intensive Care Units, Pediatric , Heart , Hospitalization , Retrospective Studies
5.
J Neuroophthalmol ; 42(4): 524-529, 2022 12 01.
Article in English | MEDLINE | ID: mdl-36166802

ABSTRACT

BACKGROUND: Sharp edge eye syndrome (SEES), sometimes known as visual looming syndrome, is a condition in which the patient experiences ocular pain or discomfort when viewing or mentally picturing sharp objects and edges. Patients may present for medical care because they perceive the condition to represent an ophthalmic problem or a sign of a more serious underlying condition. An individual case report of SEES is included to aid in illustrating syndrome characteristics. Our aim is to describe the syndrome, vision-related quality of life (VRQOL), and psychosocial characteristics in patients with self-identified SEES. METHODS: A cross-sectional web-based survey was made available on social media webpages dedicated to SEES. The study included 22 questions developed by the research team, demographic questions, and 4 standardized questionnaires [ID Migraine, the National Eye Institute's Visual Function Questionnaire (NEI-VFQ-25), General Anxiety Disorder-2 (GAD-2), and Patient Health Questionnaire (depression) Scale-2]. RESULTS: Seventy-seven respondents had an average age of 29 and were 57% male. 92% reported symptoms before age 18. The main site of pain or discomfort was the eyes, with onset resulting from viewing or thinking of sharp objects and edges. Symptoms lasted from seconds to hours and could be prolonged even after closing eyes or avoiding viewing the trigger. The composite and subscale scores on the NEI-VFQ-25 were low, with a mean composite score of 78 and selected subscores of general health (61), general vision (73), ocular pain (68), driving (79), mental health (61), and role difficulties (72). Anxiety was reported in 58% of participants, and depression in 57%. Migraine or headache was reported in 46% of participants. Participants reported Alice in Wonderland syndrome, visual snow, obsessive-compulsive disorder, attention deficit hyperactivity disorder, stripe-induced visual discomfort, and synesthesia. CONCLUSION: From this survey, we have the beginnings of an understanding of the characteristics of SEES, as well as VRQOL impacts. These survey responses lead us to postulate that SEES may be a distinct visual phenomenon and to propose SEES criteria. Systematic studies of this condition's clinical features and treatment responses will be additional steps toward improving patient care.


Subject(s)
Migraine Disorders , Quality of Life , Humans , Male , Adult , Adolescent , Female , Cross-Sectional Studies , Surveys and Questionnaires , Eye Pain/diagnosis , Pain
6.
Pediatr Crit Care Med ; 23(11): 893-907, 2022 11 01.
Article in English | MEDLINE | ID: mdl-36040097

ABSTRACT

OBJECTIVES: To identify a PICU Core Outcome Measurement Set (PICU COMS), a set of measures that can be used to evaluate the PICU Core Outcome Set (PICU COS) domains in PICU patients and their families. DESIGN: A modified Delphi consensus process. SETTING: Four webinars attended by PICU physicians and nurses, pediatric surgeons, rehabilitation physicians, and scientists with expertise in PICU clinical care or research ( n = 35). Attendees were from eight countries and convened from the Pediatric Acute Lung Injury and Sepsis Investigators Pediatric Outcomes STudies after PICU Investigators and the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network PICU COS Investigators. SUBJECTS: Measures to assess outcome domains of the PICU COS are as follows: cognitive, emotional, overall (including health-related quality of life), physical, and family health. Measures evaluating social health were also considered. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Measures were classified as general or additional based on generalizability across PICU populations, feasibility, and relevance to specific COS domains. Measures with high consensus, defined as 80% agreement for inclusion, were selected for the PICU COMS. Among 140 candidate measures, 24 were delineated as general (broadly applicable) and, of these, 10 achieved consensus for inclusion in the COMS (7 patient-oriented and 3 family-oriented). Six of the seven patient measures were applicable to the broadest range of patients, diagnoses, and developmental abilities. All were validated in pediatric populations and have normative pediatric data. Twenty additional measures focusing on specific populations or in-depth evaluation of a COS subdomain also met consensus for inclusion as COMS additional measures. CONCLUSIONS: The PICU COMS delineates measures to evaluate domains in the PICU COS and facilitates comparability across future research studies to characterize PICU survivorship and enable interventional studies to target long-term outcomes after critical illness.


Subject(s)
Critical Care , Quality of Life , Child , Humans , Outcome Assessment, Health Care , Consensus , Critical Illness , Delphi Technique
7.
J Palliat Med ; 25(6): 952-957, 2022 06.
Article in English | MEDLINE | ID: mdl-35319287

ABSTRACT

Background: Pediatric palliative care (PPC) consultation is infrequent among children on extracorporeal membrane oxygenation (ECMO). Objective: Investigate intensive care unit (ICU) team members' perceptions of automatic PPC consultation for children on ECMO in an ICU in the United States. Methods: Cross-sectional survey assessing benefits, barriers to PPC, and consultation processes. Results: Of 291 eligible respondents, 48% (n = 140) completed the survey and 16% (n = 47) answered an open-ended question. Benefits included support in decision-making (n = 98; 70%) and identification of goals of care (n = 89; 64%). Barriers included perception of giving up on families (n = 59; 42%) and poor acceptability by other team members (n = 58; 41%). Respondents endorsed communication with the primary ICU team before (n = 122; 87%) and after (n = 129; 92%) consultation. Open-ended responses showed more positive (79% vs. 13%) than negative statements. Positive statements reflected on expanding PPC to other critically-ill children where negative statements revealed unrecognized value in PPC. Conclusions: Results demonstrate opportunities for education about the scope of PPC and improvements in PPC delivery.


Subject(s)
Extracorporeal Membrane Oxygenation , Palliative Care , Child , Cross-Sectional Studies , Female , Humans , Palliative Care/methods , Referral and Consultation , Surveys and Questionnaires , United States
8.
J Acad Ophthalmol (2017) ; 14(1): e18-e22, 2022 Jan.
Article in English | MEDLINE | ID: mdl-37388475

ABSTRACT

Purpose The aim of this study was to assess efficacy of a virtual, double-flipped clinical rotation in ophthalmology for medical students during the coronavirus disease 2019 (COVID-19) pandemic. Methods We instituted a virtual, reverse-classroom clinical elective for eight medical students interested in ophthalmology as a career. The course included required prework, interactive case-based discussions, and follow-up quizzes (first flip) entirely prepared and delivered by the students as teachers (second flip). After completion of the course, we surveyed students on five domains: (1) Autonomy and Leadership, (2) Self-Efficacy, (3) Impact on Career Selection, (4) Quality of Educational Experience, and (5) Clear Goals and Feedback using a Likert scale of 1-5 (5 being the most positive). We also asked open-ended questions regarding the overall experience, that is, strengths, weaknesses, and future recommendations for the course. Due to the small N and exploratory nature of the study, no formal statistical inference was performed. Results Seven students responded to the survey. Aggregated mean survey scores for each domain are represented in parentheses. Responses were very positive in regard to "Autonomy and Leadership" (4.5), "Impact on Career Selection" (4.1), "Quality of Educational Experience" (5.0), and "Clear Goals and Feedback" (4.4). "Self-Efficacy," which had an emphasis on ability to perform an eye exam and basic knowledge of ophthalmology, had a lower mean (3.4). The subjective responses were also very positive, but similarly alluded to the limitation of learning examination skills virtually. Conclusions A medical school clinical elective can be successfully executed in a virtual format with an emphasis on student-directed learning. The novel "double-flipped" approach was highly rated by our small sample size. However, there remained a glaring limitation in the ability to transfer clinical skills in the virtual format. In the context of limited in-person contact due to the COVID-19 pandemic, we believe that the double-flipped, virtual format was a viable replacement for a traditional clinical rotation.

9.
Prehosp Emerg Care ; 26(4): 503-510, 2022.
Article in English | MEDLINE | ID: mdl-34142919

ABSTRACT

Objectives: Treating pediatric patients often invokes discomfort and anxiety among emergency medical service (EMS) personnel. As part of the process to improve pediatric care in the prehospital system, the Health Resources and Services Administration (HRSA) Emergency Services for Children (EMSC) Program implemented two prehospital performance measures -access to a designated pediatric care coordinator (PECC) and skill evaluation using pediatric equipment-along with a multi-year plan to aid states in achieving the measures. Baseline data from a survey conducted in 2017 showed that less than 25% of EMS agencies had access to PECC and 47% performed skills evaluation using pediatric equipment at least twice a year. To evaluate change over time, the survey was again conducted in 2020, and agencies that participated in both years are compared. Methods: A web-based survey was sent to EMS agency administrators in 58 states and territories from January to March 2020. Descriptive statistics, odds ratios, and 95% confidence intervals were conducted. Results: The response rate was 56%. A total of 5,221 agencies participated in both survey periods representing over 250,000 providers. The percentage of agencies reporting the presence of a PECC increased from 24% to 34% (p= <0.001). However, some agencies reported that they no longer had a PECC, while others reported having a PECC for the first time. Fifty percent (50%) of agencies conduct pediatric psychomotor skills evaluation at least twice/year, a 2% increase over time (p = 0.041); however, a third (34%) evaluate skills using pediatric equipment less than once a year. The presence of a PECC continues to be the variable associated with the highest odds (AOR 2.15, 95% CI 1.91-2.43) of conducting at least semiannual skills evaluation.Conclusions: There is an increase in the presence of pediatric care coordination and the frequency of pediatric psychomotor skills evaluation among national EMS agencies over time. Continued efforts to increase and sustain PECC presence should be an ongoing focus to improve pediatric readiness in the prehospital system.


Subject(s)
Emergency Medical Services , Child , Humans , Surveys and Questionnaires
10.
BMC Med Res Methodol ; 21(1): 233, 2021 10 27.
Article in English | MEDLINE | ID: mdl-34706653

ABSTRACT

BACKGROUND: Retaining participants over time is a frequent challenge in research studies evaluating long-term health outcomes. This study's objective was to compare the impact of prepaid and postpaid incentives on response to a six-month follow-up survey. METHODS: We conducted an experiment to compare response between participants randomized to receive either prepaid or postpaid cash card incentives within a multisite study of children under 15 years in age who were hospitalized for a serious, severe, or critical injury. Participants were parents or guardians of enrolled children. The primary outcome was survey response. We also examined whether demographic characteristics were associated with response and if incentive timing influenced the relationship between demographic characteristics and response. We evaluated whether incentive timing was associated with the number of calls needed for contact. RESULTS: The study enrolled 427 children, and parents of 420 children were included in this analysis. Follow-up survey response did not differ according to the assigned treatment arm, with the percentage of parents responding to the survey being 68.1% for the prepaid incentive and 66.7% with the postpaid incentive. Likelihood of response varied by demographics. Spanish-speaking parents and parents with lower income and lower educational attainment were less likely to respond. Parents of Hispanic/Latino children and children with Medicaid insurance were also less likely to respond. We found no relationship between the assigned incentive treatment and the demographics of respondents compared to non-respondents. CONCLUSIONS: Prepaid and postpaid incentives can obtain similar participation in longitudinal pediatric critical care outcomes research. Incentives alone do not ensure retention of all demographic subgroups. Strategies for improving representation of hard-to-reach populations are needed to address health disparities and ensure the generalizability of studies using these results.


Subject(s)
Motivation , Parents , Child , Follow-Up Studies , Humans , Prospective Studies , Surveys and Questionnaires
11.
Eval Health Prof ; 44(3): 260-267, 2021 09.
Article in English | MEDLINE | ID: mdl-34328040

ABSTRACT

Survey response is higher when the request comes from a familiar entity compared to an unknown sender. Little is known about how sender influences response to surveys of organizations. We assessed whether familiarity of the sender influences response outcomes in a survey of emergency medical services agencies. Emergency medical services agencies in one U.S. state were randomly assigned to receive survey emails from either a familiar or unfamiliar sender. Both deployment approaches were subsequently used nationwide, with each state selecting one of the two contact methods. Experimental results showed that requests from the familiar sender achieved higher survey response (54.3%) compared to requests from the unfamiliar sender (36.9%; OR: 2.03; 95% CI: 1.23, 3.33). Similar results were observed in the subsequent nationwide survey; in states where the familiar sender deployed the survey, 62.0% of agencies responded, compared to 51.0% when the survey was sent by the unfamiliar sender (OR: 1.57; 95% CI: 1.47, 1.67). The response difference resulted in nearly 60 additional hours of staff time needed to perform telephone follow-up to nonrespondents. When surveying healthcare organizations, surveyors should recognize that it is more challenging to obtain responses without a pre-established relationship with the organizations.


Subject(s)
Emergency Medical Services , Humans , Surveys and Questionnaires
12.
JAMA Pediatr ; 175(9): 947-956, 2021 09 01.
Article in English | MEDLINE | ID: mdl-34096991

ABSTRACT

Importance: The National Pediatric Readiness Project is a US initiative to improve emergency department (ED) readiness to care for acutely ill and injured children. However, it is unclear whether high ED pediatric readiness is associated with improved survival in US trauma centers. Objective: To evaluate the association between ED pediatric readiness, in-hospital mortality, and in-hospital complications among injured children presenting to US trauma centers. Design, Setting, and Participants: A retrospective cohort study of 832 EDs in US trauma centers in 50 states and the District of Columbia was conducted using data from January 1, 2012, through December 31, 2017. Injured children younger than 18 years who were admitted, transferred, or with injury-related death in a participating trauma center were included in the analysis. Subgroups included children with an Injury Severity Score (ISS) of 16 or above, indicating overall seriously injured (accounting for all injuries); any Abbreviated Injury Scale (AIS) score of 3 or above, indicating at least 1 serious injury; a head AIS score of 3 or above, indicating serious brain injury; and need for early use of critical resources. Exposures: Emergency department pediatric readiness for the initial ED visit, measured through the weighted Pediatric Readiness Score (range, 0-100) from the 2013 National Pediatric Readiness Project ED pediatric readiness assessment. Main Outcomes and Measures: In-hospital mortality, with a secondary composite outcome of in-hospital mortality or complication. For the primary measurement tools used, the possible range of the AIS is 0 to 6, with 3 or higher indicating a serious injury; the possible range of the ISS is 0 to 75, with 16 or higher indicating serious overall injury. The weighted Pediatric Readiness Score examines and scores 6 domains; in this study, the lowest quartile included scores of 29 to 62 and the highest quartile included scores of 93 to 100. Results: There were 372 004 injured children (239 273 [64.3%] boys; median age, 10 years [interquartile range, 4-15 years]), including 5700 (1.5%) who died in-hospital and 5018 (1.3%) who developed in-hospital complications. Subgroups included 50 440 children (13.6%) with an ISS of 16 or higher, 124 507 (33.5%) with any AIS score of 3 or higher, 57 368 (15.4%) with a head AIS score of 3 or higher, and 32 671 (8.8%) requiring early use of critical resources. Compared with EDs in the lowest weighted Pediatric Readiness Score quartile, children cared for in the highest ED quartile had lower in-hospital mortality (adjusted odds ratio [aOR], 0.58; 95% CI, 0.45-0.75), but not fewer complications (aOR for the composite outcome 0.88; 95% CI, 0.74-1.04). These findings were consistent across subgroups, strata, and multiple sensitivity analyses. If all children cared for in the lowest-readiness quartiles (1-3) were treated in an ED in the highest quartile of readiness, an additional 126 lives (95% CI, 97-154 lives) might be saved each year in these trauma centers. Conclusions and Relevance: In this cohort study, injured children treated in high-readiness EDs had lower mortality compared with similar children in low-readiness EDs, but not fewer complications. These findings support national efforts to increase ED pediatric readiness in US trauma centers that care for children.


Subject(s)
Emergency Service, Hospital/standards , Outcome Assessment, Health Care/statistics & numerical data , Pediatrics/standards , Adolescent , Child , Child, Preschool , Civil Defense/standards , Civil Defense/statistics & numerical data , Cohort Studies , Emergency Service, Hospital/organization & administration , Emergency Service, Hospital/statistics & numerical data , Female , Humans , Male , Outcome Assessment, Health Care/methods , Pediatrics/methods , Pediatrics/statistics & numerical data , Retrospective Studies , Trauma Centers/organization & administration , Trauma Centers/standards , Trauma Centers/statistics & numerical data , United States
13.
Thromb Res ; 204: 95-100, 2021 08.
Article in English | MEDLINE | ID: mdl-34153650

ABSTRACT

INTRODUCTION: Concomitant antifibrinolytic agents and combined hormonal contraceptives (CHC) have been anecdotally used to manage refractory heavy menstrual bleeding (HMB). Yet, there remains uncertainty among clinicians regarding the safety of this therapeutic option as concomitant CHC is listed as a contraindication to tranexamic acid use in the United States. AIM: To describe current treatment practices and physician-reported safety and effectiveness of concomitant antifibrinolytics and CHCs. METHODS: We surveyed clinician members of the Hemostasis and Thrombosis Research Society and the Foundation of Women and Girls with Blood Disorders using a web-based survey. We also shared the survey link on Twitter. RESULTS: Of the 224 respondents who completed the survey, 214 treated women of reproductive age with HMB. Of the 214 respondents, 138 (64%) had treated at least 1 woman with concomitant antifibrinolytic agents and CHCs in the past 12 months. Over half of these respondents (n = 77, 57%) reported that at least 50% of women had resolution of refractory HMB. One respondent reported an arterial or venous thrombotic event that occurred in 1 woman. CONCLUSION: We found that the use of concomitant CHCs and antifibrinolytic agent for refractory HMB is prevalent, appears to be efficacious and is relatively safe. Further research is warranted.


Subject(s)
Antifibrinolytic Agents , Menorrhagia , Tranexamic Acid , Antifibrinolytic Agents/therapeutic use , Contraceptives, Oral, Hormonal , Female , Humans , Menorrhagia/drug therapy , Surveys and Questionnaires , Tranexamic Acid/therapeutic use
14.
Cardiol Young ; 31(9): 1458-1464, 2021 Sep.
Article in English | MEDLINE | ID: mdl-33597068

ABSTRACT

OBJECTIVE: Retrospectively apply criteria from Center to Advance Palliative Care to a cohort of children treated in a cardiac ICU and compare children who received a palliative care consultation to those who were eligible for but did not receive one. METHODS: Medical records of children admitted to a cardiac ICU between January 2014 and June 2017 were reviewed. Selected criteria include cardiac ICU length of stay >14 days and/or ≥ 3 hospitalisations within a 6-month period. MEASUREMENTS AND RESULTS: A consultation occurred in 17% (n = 48) of 288 eligible children. Children who received a consult had longer cardiac ICU (27 days versus 17 days; p < 0.001) and hospital (91 days versus 35 days; p < 0.001) lengths of stay, more complex chronic conditions at the end of first hospitalisation (3 versus1; p < 0.001) and the end of the study (4 vs.2; p < 0.001), and higher mortality (42% versus 7%; p < 0.001) when compared with the non-consulted group. Of the 142 pre-natally diagnosed children, only one received a pre-natal consult and 23 received it post-natally. Children who received a consultation (n = 48) were almost 2 months of age at the time of the consult. CONCLUSIONS: Less than a quarter of eligible children received a consultation. The consultation usually occurred in the context of medical complexity, high risk of mortality, and at an older age, suggesting potential opportunities for more and earlier paediatric palliative care involvement in the cardiac ICU. Screening criteria to identify patients for a consultation may increase the use of palliative care services in the cardiac ICU.


Subject(s)
Intensive Care Units , Palliative Care , Aged , Child , Humans , Intensive Care Units, Pediatric , Length of Stay , Prevalence , Referral and Consultation , Retrospective Studies
15.
Fam Med ; 53(2): 133-138, 2021 Feb.
Article in English | MEDLINE | ID: mdl-33566349

ABSTRACT

BACKGROUND AND OBJECTIVES: Because of the importance of and increasing competition for unpaid community faculty's time, we qualitatively evaluated the adjunct community faculty experience in order to identify mechanisms to improve the recruitment, training, and retention of these faculty members. METHODS: The authors captured community faculty and key stakeholder opinion through interviews, focus groups, and a survey to elucidate their perspective of roles, responsibilities, facilitators, and barriers for providing quality teaching and learning experiences. After evaluating the data, we created an impact/effort matrix to guide suggested changes. RESULTS: Key medical education stakeholders reported adjunct community faculty members were critical to delivery of the medical school curriculum and shared methods and barriers for retaining members. Adjunct community faculty focus groups revealed two major themes: (1) personal experience and motivation, and (2) individual advantages and institutional barriers that influence being a faculty member. The survey and impact/effort matrix led to interventions including an Office of Community Faculty to implement recruitment and retention programs and provide more comprehensive oversight, a clinical scheduling hub, improved access to specialists for community faculty, and awards to recognize the critical contributions of community faculty members. CONCLUSIONS: As competition for community placements increases, including community faculty voices to inform action is an effective investment that enables an institution to direct resources towards interventions that maximize their support and engagement. Including community faculty perspectives also increases faculty's ability to participate in training the next generation of physicians.


Subject(s)
Education, Medical , Faculty , Faculty, Medical , Humans , Learning , Motivation , Volunteers
16.
J Interpers Violence ; 36(3-4): NP1193-1204NP, 2021 02.
Article in English | MEDLINE | ID: mdl-29366398

ABSTRACT

Children exposed to intimate partner violence (IPV) are at increased risk for health problems. The moment that a mother seeks services for or safety from IPV may be a window of opportunity to offer needed health care for her children. The objective of the study is to describe the perceptions of child health conditions and needs among mothers seeking services for or safety from IPV, and to compare the results in shelter- versus community-based samples. A cross-sectional survey of women with at least one child of age 3 to 11 years seeking services at an urban YWCA, which supports a residential IPV shelter and a community-based family justice center, was done between fall 2013 and winter 2014. Child health conditions were captured using the Children With Special Health Care Needs survey and the Strengths and Difficulties Questionnaire. Prevalence of health conditions among IPV-exposed children was compared with population norms. Perceived child health and health needs in the residential versus community settings were compared. Women (n = 48) completed surveys related to 91 children. Special health care needs (25%) and behavioral health (52%) problems were significantly higher in our sample than in general populations. Almost one quarter (24%) of children had a current need for general medical care and almost one half (44%) had a current need for behavioral health care. No significant differences in child health conditions or needs between residential and community settings were observed. These findings extend prior research describing the health problems faced by children exposed to IPV by describing maternal perceptions of child health and need for health care in a critical moment of seeking help for IPV. Community agencies may use this window of opportunity to support child health and household safety.


Subject(s)
Intimate Partner Violence , Child , Child, Preschool , Cross-Sectional Studies , Female , Humans , Mothers , Prevalence , Surveys and Questionnaires
17.
Pediatr Emerg Care ; 37(12): e1116-e1121, 2021 Dec 01.
Article in English | MEDLINE | ID: mdl-31738300

ABSTRACT

OBJECTIVES: The majority of US children do not have access to an emergency department (ED) with a pediatric mental health care policy in place. Our objective was to understand factors associated with whether US EDs have a pediatric mental health care policy. METHODS: We analyzed data from the National Pediatric Readiness Project, a nationally representative cross-sectional survey of US EDs. Nurse managers reported whether their hospitals had a policy to care for children with social/mental health concerns (n = 3612). We calculated prevalence estimates, prevalence ratios (PRs), and confidence intervals (CIs) for regional and ED characteristics (eg, rurality and types of personnel) by whether EDs had a pediatric mental health care policy. RESULTS: Overall, 46.2% (n = 1668/3612) of EDs had a pediatric mental health care policy. Emergency departments located in remote areas were 60% less likely to have such a policy compared with EDs in urban areas (PR, 0.4; CI, 0.3-0.5). Emergency department characteristics associated with having a pediatric mental health care policy included having a policy to transfer children with social/mental health concerns (PR, 5.4; CI, 4.7-6.2), having a policy to address maltreatment (PR, 3.4; CI, 2.6-4.4), and having nurse and physician pediatric emergency care coordinators (PR, 1.6; CI, 1.5-1.8). CONCLUSIONS: Lower prevalence of pediatric mental health policies in rural EDs is concerning considering EDs are often the first point of contact for pediatric patients. This work highlights the importance of pediatric emergency care coordinators in fostering ED capacity to meet children's mental health needs.


Subject(s)
Emergency Medical Services , Mental Health , Child , Cross-Sectional Studies , Emergency Service, Hospital , Health Policy , Humans
18.
Crit Care Med ; 48(12): e1313-e1321, 2020 12.
Article in English | MEDLINE | ID: mdl-33009099

ABSTRACT

OBJECTIVES: Assessing outcomes after pediatric critical illness is imperative to evaluate practice and improve recovery of patients and their families. We conducted a scoping review of the literature to identify domains and instruments previously used to evaluate these outcomes. DESIGN: Scoping review. SETTING: We queried PubMed, EMBASE, PsycINFO, Cumulative Index of Nursing and Allied Health Literature, and the Cochrane Central Register of Controlled Trials Registry for studies evaluating pediatric critical care survivors or their families published between 1970 and 2017. We identified articles using key words related to pediatric critical illness and outcome domains. We excluded articles if the majority of patients were greater than 18 years old or less than 1 month old, mortality was the sole outcome, or only instrument psychometrics or procedural outcomes were reported. We used dual review for article selection and data extraction and categorized outcomes by domain (overall health, emotional, physical, cognitive, health-related quality of life, social, family). SUBJECTS: Manuscripts evaluating outcomes after pediatric critical illness. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Of 60,349 citations, 407 articles met inclusion criteria; 87% were published after 2000. Study designs included observational (85%), interventional (7%), qualitative (5%), and mixed methods (3%). Populations most frequently evaluated were traumatic brain injury (n = 96), general pediatric critical illness (n = 87), and congenital heart disease (n = 72). Family members were evaluated in 74 studies (18%). Studies used a median of 2 instruments (interquartile range 1-4 instruments) and evaluated a median of 2 domains (interquartile range 2-3 domains). Social (n = 223), cognitive (n = 183), and overall health (n = 161) domains were most frequently studied. Across studies, 366 unique instruments were used, most frequently the Wechsler and Glasgow Outcome Scales. Individual domains were evaluated using a median of 77 instruments (interquartile range 39-87 instruments). CONCLUSIONS: A comprehensive, generalizable understanding of outcomes after pediatric critical illness is limited by heterogeneity in methodology, populations, domains, and instruments. Developing assessment standards may improve understanding of postdischarge outcomes and support development of interventions after pediatric critical illness.


Subject(s)
Critical Care/methods , Outcome Assessment, Health Care/methods , Child , Critical Care/standards , Critical Illness/therapy , Humans , Outcome Assessment, Health Care/standards , Patient Discharge , Treatment Outcome
19.
Crit Care Med ; 48(12): 1819-1828, 2020 12.
Article in English | MEDLINE | ID: mdl-33048905

ABSTRACT

OBJECTIVES: More children are surviving critical illness but are at risk of residual or new health conditions. An evidence-informed and stakeholder-recommended core outcome set is lacking for pediatric critical care outcomes. Our objective was to create a multinational, multistakeholder-recommended pediatric critical care core outcome set for inclusion in clinical and research programs. DESIGN: A two-round modified Delphi electronic survey was conducted with 333 invited research, clinical, and family/advocate stakeholders. Stakeholders completing the first round were invited to participate in the second. Outcomes scoring greater than 69% "critical" and less than 15% "not important" advanced to round 2 with write-in outcomes considered. The Steering Committee held a virtual consensus conference to determine the final components. SETTING: Multinational survey. PATIENTS: Stakeholder participants from six continents representing clinicians, researchers, and family/advocates. MEASUREMENTS AND MAIN RESULTS: Overall response rates were 75% and 82% for each round. Participants voted on seven Global Domains and 45 Specific Outcomes in round 1, and six Global Domains and 30 Specific Outcomes in round 2. Using overall (three stakeholder groups combined) results, consensus was defined as outcomes scoring greater than 90% "critical" and less than 15% "not important" and were included in the final PICU core outcome set: four Global Domains (Cognitive, Emotional, Physical, and Overall Health) and four Specific Outcomes (Child Health-Related Quality of Life, Pain, Survival, and Communication). Families (n = 21) suggested additional critically important outcomes that did not meet consensus, which were included in the PICU core outcome set-extended. CONCLUSIONS: The PICU core outcome set and PICU core outcome set-extended are multistakeholder-recommended resources for clinical and research programs that seek to improve outcomes for children with critical illness and their families.


Subject(s)
Critical Care/standards , Intensive Care Units, Pediatric/standards , Adult , Aged , Child , Child Health/standards , Critical Illness/psychology , Critical Illness/therapy , Delphi Technique , Female , Humans , Male , Middle Aged , Stakeholder Participation , Treatment Outcome , Young Adult
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