Aggressiveness of care at the end of life in children with cancer: A nationwide cohort study
quality of life; Cause of Death; Child; Prevalence; Cohort Studies; Palliative Care; Aggression; cancer staging; major clinical study; cohort analysis; Quality of Life; Only Child; school child; developmental stage; Portugal; Icd-9; multicenter study; human; child; female; male; hospitalization; palliative therapy; resuscitation; morbidity; prevalence; intensive care unit; total parenteral nutrition; aggressiveness; immunotherapy; vascular access
Background: Cancer remains the leading medical cause of death in children. Ensuring quality of life should be a priority, but it may be difficult to stop treatments, particularly in settings where palliative care is scarce. Little is known about how many children dying from cancer experience aggressive care near the end of life (ACCEoL) in such settings (the most common worldwide). Our study aims to determine time trends in the prevalence of ACCEoL in this population. Methods: Cohort study of children (0-17yo)who died with ICD-9-CMdiagnosis of cancer in public hospitals in mainland Portugal (Jan'10 toDec'15), identified fromthe Hospital Morbidity database. Based on previous studies and clinical experience, measures of ACCEoL comprised: in last 14 days of life: a) intravenous chemo/immunotherapy; in last 30 days of life: b)>14 days spent in hospital, c)>1 hospitalization, d) intensive care unit (ICU) admission, e) advanced life support (e.g. cardiopulmonary resuscitation), f) insertion of devices (e.g. central vascular access, CVA), g) total parenteral nutrition (TPN).We calculated prevalences and tested for time trends using chi2 for trend. Results: The study included 300 patients (median age 9 yo, IQR 4-14, 58.7%male). The prevalence of ACCEoL was stable over time, with 87.8%of the children experiencing at least one ACCEoLmeasure (85.2%in 2010, 88.4%in 2015; p=0.816)). Themost prevalent individual ACCEoL measures were>14 days spent in hospital (51.0%) and>1 hospitalization (43.3%). Most measures showed no statistically significant time trend. Conclusions: In a setting in early stages of pediatric palliative care development, we found that eight in ten children dying from cancer experience ACcEoL in their last month of life. This estimate is higher than those found in countries in more advanced developmental stages and may indicate a need to increase paediatric palliative care availability. The findings also prompt healthcare professionals to reflect on their current practice, balancing treatments and hospitalisations with patients' quality of life in the days they have to live.
Cardoso A; Martins BD; Lacerda A; Gomes B; Lopes S
Annals of Oncology
2017
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
Influence of Palliative Care on Medical Treatment of Pediatric Patients with Complex Chronic Diseases at Cook Children's Medical Center
Data Analysis Software; Human; Electronic Health Records; Length of Stay; Child; Hospitalization; Patient Care; Texas; Descriptive Statistics; Chi Square Test; Chronic Disease -- Therapy -- In Infancy and Childhood; Drug Administration; Hospitals Pediatric -- Texas; Medical Orders; Palliative Care -- Utilization; Wilcoxon Rank Sum Test
Background: Literature in adult palliative care (PC) boasts fewer invasive procedures, shorter lengths of stay, and decreased cost of care. Benefits of pediatric PC are under-researched and are important to identify to optimize care. Objective: Our aim was to estimate the influence and utilization of PC on pediatric patient care. Design: We evaluated the electronic medical record of 43 patients at Cook Children's Medical Center (CCMC) with complex chronic conditions, who died between January 1, 2013, and December 31, 2014, comparing the length and frequency of hospitalizations, number of medications administered and procedures performed, and established limits of resuscitation between patients who received PC and those who did not. Measurements: Data analyses were performed using SAS Enterprise (version 6.1; SAS Institute, Inc., Cary, NC). Continuous variables were described as medians and ranges and analyzed with Wilcoxon rank-sum test for ordinal data. Categorical variables were described as percentages and analyzed with chi-square test of independence. Repeated-measures analyses were performed utilizing multilevel linear modeling, which examined the data at the level of the 236 visits rather than the 43 patients. Results: Twelve (28%) eligible patients were seen by PC. PC patients had more hospitalizations, longer lengths of stay, and fewer medications and procedures than those patients without PC services. PC patients were also more likely to have a medical orders for scope of treatment in place. Conclusion: These data demonstrate that PC services at CCMC are underutilized and support the need for PC services by decreased medications and procedures and identified family wishes for medical treatment.
Seddighzadeh RP; Lawrence K; Hamby T; Hoeft A
Journal of Palliative Medicine
2018
<a href="http://doi.org/10.1089/jpm.2018.0079" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0079</a>
Modes of Death Within a Children's Hospital
Human; Length of Stay; Child; Hospitalization; Intensive Care Units Pediatric; Treatment Failure; Referral and Consultation; Palliative Care; Hospitals Pediatric; Intensive Care Units Neonatal; Resuscitation; Confidence Intervals; Odds Ratio; Qualitative Studies; Descriptive Statistics; Race Factors; Retrospective Design; Whites; Blacks; Hospital Mortality -- In Infancy and Childhood; Multiple Logistic Regression
BACKGROUND: Knowledge about how children die in pediatric hospitals is limited, and this hinders improvement in hospital-based end-of-life care. METHODS: We conducted a retrospective chart review of all the patients who died in a children's hospital between July 2011 and June 2014, collecting demographic and diagnostic information, hospital length of stay, location of death, and palliative care consultation. A qualitative review of provider notes and resuscitation records was used to create 5 mutually exclusive modes of death, which were then assigned to each patient. Analysis included the calculation of descriptive statistics and multinomial logistic regression modeling. RESULTS: We identified 579 patients who were deceased; 61% were <1 year of age. The ICU was the most common location of death (NICU 29.7%; PICU 27.8%; cardiac ICU 16.6%). Among the 5 modes of death, the most common was the withdrawal of life-sustaining technology (40.2%), followed by nonescalation (25.6%), failed resuscitation (22.8%), code then withdrawal (6.0%), and death by neurologic criteria (5.3%). After adjustment, patients who received a palliative care consultation were less likely to experience a code death (odds ratio 0.31; 95% confidence interval 0.13--0.75), although African American patients were more likely than white patients to experience a code death (odds ratio 2.46; 95% confidence interval 1.05--5.73), mostly because of code events occurring in the first 24 hours of hospitalization. CONCLUSIONS: Most deaths in a children's hospital occur in ICUs after the withdrawal of life-sustaining technology. Race and palliative care involvement may influence the manner of a child's death.
Trowbridge A; Walter JK; McConathey E; Morrison W; Feudtner C
Pediatrics
2018
<a href="http://doi.org/10.1542/peds.2017-4182" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-4182</a>
End-of-Life Care for Hispanic Children: A Study of California Medicaid Beneficiaries
Emergency Service; Hispanic Americans; Hospice Care/ut [Utilization]; Hospices/ut [Utilization]; Hospitalization; Palliative Care/ut [Utilization]; Terminal Care/mt [Methods]; Adolescent; California; Cardiovascular Diseases/mo [Mortality]; Child; Congenital Abnormalities/mo [Mortality]; Delivery of Health Care; Female; Health Services Accessibility; Hospital/ut [Utilization]; Humans; Infant; Male; Medicaid; Neoplasms/mo [Mortality]; Policy; Preschool; United States; Young Adult
INTRODUCTION: More than 8,000 Hispanic children die annually in the United States; yet little is known about the end-of-life care utilized. The purpose of this study was to examine the children and family characteristics associated with end-of-life care for Hispanic children. METHOD: A sample of 370 Hispanic children was created, using the 2009-2010 California Medicaid data. The relationship between child and family characteristics and end-of-life care utilization (i.e., hospice enrollment, emergency room utilization, hospital admissions) was analyzed using multivariate regression. RESULTS: Pediatric hospice accessibility (p < .05), palliative care policy (p < .01), congenital anomalies (p < .01), and cardiovascular conditions (p < .01) were related to hospice enrollment. Usual source of care (p < .001), functional status (p < .001), palliative care policy (p < .01), and private insurance (p < .01) were associated with emergency room utilization, while usual source of care (p < .001), cancer (p < .001), and disability status (p < .01) corresponded with hospital admissions. CONCLUSION: Nursing practices aimed at engaging Hispanic families in their community are critical to end-of-life care utilization for Hispanic children.
Lindley LC; Trujillo LV
Hispanic Health Care International
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1177/1540415316670900" target="_blank" rel="noreferrer noopener">10.1177/1540415316670900</a>
Transitions to and from the Acute Inpatient Care Setting for Children with Life-Threatening Illness
Hospitalization; Children; transition; Life Threatening illness
Children with life-threatening illnesses (LTIs) are hospitalized more often and spend more days in the hospital than children without LTIs. Hospitalizations may be associated with changes in health status of children with LTIs and thus alter their care needs significantly. Transitional care is particularly relevant for this population. Pediatric palliative care clinicians and teams are well-positioned to improve transitional care of children with LTIs by facilitating communication between clinicians and educating clinicians about issues related to children with LTIs.
2014-08
Nageswaran S; Radulovic A; Anania A
Pediatric Clinics Of North America
2014
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Journal Article
<a href="http://doi.org/10.1016/j.pcl.2014.04.008" target="_blank" rel="noreferrer">10.1016/j.pcl.2014.04.008</a>
Pediatric Hospital Care for Children with Life-threatening Illness and the Role of Palliative Care
Hospitalization; Chronic disease; Health care reform; Life Threatening illness; Hospital care
Under increasing pressure to contain costs, hospitals are challenged to provide high-quality care to an increasingly complex group of children with life-threatening illness (LTI) that often worsen over time. Pediatric palliative care is an essential component of optimal hospital care delivery for these children and their families. This article describes (1) the current landscape of pediatric hospital care for children with LTI, (2) the connection between palliative care and hospital care for such children, and (3) the relationship between health care reform and palliative care for children with LTI.
2014-08
Bogetz JF; Ullrich CK; Berry JG
Pediatric Clinics Of North America
2014
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Journal Article
<a href="http://doi.org/10.1016/j.pcl.2014.05.002" target="_blank" rel="noreferrer">10.1016/j.pcl.2014.05.002</a>
Exposure to home-based pediatric palliative and hospice care and its impact on hospital and emergency care charges at a single institution
adolescent; Child; Female; Hospitalization; Humans; infant; Male; retrospective studies; Young Adult; Palliative Care; hospice care; Length of Stay; Hospitals; Hospital Charges; Emergency Service; quality of life; Pediatric; Preschool; Hospital
BACKGROUND: Pediatric palliative care (PPC) aims to promote quality of life for children and their families through prevention and relief of physical and psychosocial symptoms. Little is known about how PPC/hospice services impact health care resource utilization in an uncertain financial landscape. OBJECTIVE: The study objective was to compare pediatric hospital health care resource utilization before and after enrollment in a home PPC/hospice program. DESIGN: The study was a retrospective administrative data analysis. SETTING/SUBJECTS: The study took place in a pediatric multispecialty hospital. Data were analyzed for 425 children ages 1-21 years who received home-based PPC/hospice services between 2000 and 2010. MEASUREMENTS: Hospitalization and emergency room (ER) administrative data were examined to determine whether or not there were changes in total number of hospital admissions, length of stay (LOS), and hospital billed charges before compared to after PPC/hospice exposure. RESULTS: There was no change in average total number of admissions pre-/post-PPC/hospice exposure; however, we found a significant increase in hospital/ER admissions for children with cancer diagnoses with longer exposure to PPC/hospice services. There were statistically significant reductions in LOS and total charges for hospital-based care; reductions were more pronounced in the noncancer group. Noncancer patients with at least six months of PPC exposure showed a significant decrease in total LOS from pre- to post-program admission by an average of 38 days, and an average decrease in total hospital charges of nearly $275,000. CONCLUSION: Enrollment in home-based PPC/hospice was associated with lower hospital and ER LOS and total hospital charges as compared with the period prior to enrollment for children with noncancer diagnoses.
2014-02
Postier A; Chrastek J; Nugent S; Osenga K; Friedrichsdorf SJ
Journal Of Palliative Medicine
2014
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Journal Article
<a href="http://doi.org/10.1089/jpm.2013.0287" target="_blank" rel="noreferrer">10.1089/jpm.2013.0287</a>
Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis
Hospitalization; Humans; retrospective studies; Palliative Care; patient care team; Cohort Studies; Hospital Mortality; Community Health Services; Specialization; Emergency Service; Hospital
OBJECTIVE: To determine the pooled effect of exposure to one of 11 specialist palliative care teams providing services in patients' homes. DESIGN: Pooled analysis of a retrospective cohort study. SETTING: Ontario, Canada. PARTICIPANTS: 3109 patients who received care from specialist palliative care teams in 2009-11 (exposed) matched by propensity score to 3109 patients who received usual care (unexposed). INTERVENTION: The palliative care teams studied served different geographies and varied in team composition and size but had the same core team members and role: a core group of palliative care physicians, nurses, and family physicians who provide integrated palliative care to patients in their homes. The teams' role was to manage symptoms, provide education and care, coordinate services, and be available without interruption regardless of time or day. MAIN OUTCOME MEASURES: Patients (a) being in hospital in the last two weeks of life; (b) having an emergency department visit in the last two weeks of life; or (c) dying in hospital. RESULTS: In both exposed and unexposed groups, about 80% had cancer and 78% received end of life homecare services for the same average duration. Across all palliative care teams, 970 (31.2%) of the exposed group were in hospital and 896 (28.9%) had an emergency department visit in the last two weeks of life respectively, compared with 1219 (39.3%) and 1070 (34.5%) of the unexposed group (P<0.001). The pooled relative risks of being in hospital and having an emergency department visit in late life comparing exposed versus unexposed were 0.68 (95% confidence interval 0.61 to 0.76) and 0.77 (0.69 to 0.86) respectively. Fewer exposed than unexposed patients died in hospital (503 (16.2%) v 887 (28.6%), P<0.001), and the pooled relative risk of dying in hospital was 0.46 (0.40 to 0.52). CONCLUSIONS: Community based specialist palliative care teams, despite variation in team composition and geographies, were effective at reducing acute care use and hospital deaths at the end of life.
2014
Seow H; Brazil K; Sussman J; Pereira JL; Marshall D; Austin PC; Husain A; Rangrej J; Barbera L
Bmj (clinical Research Ed.)
2014
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Journal Article
<a href="http://doi.org/10.1136/bmj.g3496" target="_blank" rel="noreferrer">10.1136/bmj.g3496</a>
Videoconferencing to reduce stress among hospitalized children
Child; Female; Hospitalization; Humans; Male; Parents; Prospective Studies; Videoconferencing; Stress; Psychological; Hospitalized; Propensity Score
OBJECTIVES: Family-Link is a videoconferencing program that allows hospitalized children and their parents to virtually visit family members and friends using laptops, webcams, and a secure Wi-Fi connection. We evaluated the association of Family-Link use on the reduction in stress experienced by children during hospitalization. METHODS: We offered Family-Link to pediatric patients who had an expected length of hospitalization equal to or greater than 4 days. We measured the stress levels of hospitalized children at admission and discharge using the previously published Parental Stress Survey. We used propensity score matching and multivariable linear regression methods to evaluate the relationship between the use of Family-Link and stress experienced by children during hospitalization. RESULTS: We included a total of 367 children in the study: 232 Family-Link users and 135 non-Family-Link users. Using the propensity score matching method, we found that the use of Family-Link was significantly associated with a greater reduction in overall mean stress compared with non-Family-Link users among the cohort of patients who lived closer to the hospital and had shorter lengths of hospitalization (β = 0.23; 95% confidence interval, 0.03 to 0.43; P < .05). In this cohort, the reduction in overall mean stress was 37% greater among Family-Link users than non-Family-Link users. CONCLUSIONS: The use of videoconferencing by some hospitalized children and families to conduct virtual visits with family and friends outside of the hospital was associated with a greater reduction in stress during hospitalization than those who did not use videoconferencing.
2014-07
Yang NH; Dharmar M; Hojman NM; Sadorra CK; Sundberg D; Wold GL; Parsapour K; Marcin JP
Pediatrics
2014
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Journal Article
<a href="http://doi.org/10.1542/peds.2013-3912" target="_blank" rel="noreferrer">10.1542/peds.2013-3912</a>
Integrating oncology and palliative home care in Italy: the experience of the "L'Aquila per la Vita" Home Care Unit
adolescent; Child; Delivery of Health Care; Female; Hospitalization; Humans; Male; retrospective studies; Death; Palliative Care; patient care team; Neoplasms; home care services; Adult; Aged; Middle Aged; Interdisciplinary Communication; Length of Stay; Program Evaluation; Italy; Patient Preference; Medical Records; Chi-Square Distribution; Palliative Care; 80 and over; Integrated; Emergencies
AIM: To evaluate the efficacy of a home care program, closely integrated with a medical oncology department. PATIENTS AND METHODS: The charts, prospectively recorded, of all the patients treated at home by the "L'Aquila per la Vita" Home Care Unit from August 2006 to December 2011, were reviewed. The number of patients, home accesses, length of the home care, hospital admission, emergency calls, and the place of death were recorded. Data were analyzed considering the origin of the patients (medical oncology department or other). RESULTS: A total of 461 patients was followed at home for a total of 10,503 home accesses (median accesses/patient, 20; range, 1-159). The median length of home care was 76 days (range, 2-643 days). The median was 101 days for patients coming from the medical oncology department and 53 days for patients coming from other origins (P <0.0005). There were 428 emergency calls (4.1% of all the home accesses). Emergency calls accounted for 253 of 7,364 home accesses (3.4%) among patients coming from the medical oncology department and for 175 of 3,139 home accesses (5.6%) among patients coming from other origins (P = 0.00005). Eighty of 461 patients (17.3%) required one in-hospital admission and 19/461 patients (4.1%) more than one. Fifty-nine of 259 (17.8%) patients coming from the medical oncology department and 40 of 186 (26.9%) coming from other origins required in-hospital admissions (P = 0.04). A total of 311 patients died (163 coming from the medical oncology department and 148 from other origins). Twenty-eight of 163 (17.1%) coming from the medical oncology department and 52 of 148 (35.1%) coming from other origins died in the hospital (P = 0.0002). CONCLUSIONS: A multidisciplinary and expert team, closely integrated with the hospital, can guarantee a long length of home care, avoiding hospitalization and closing the gap between the patients' preferences and the services offered regarding the place of death.
2013-04
Porzio G; Aielli F; Verna L; Martella F; Aloisi P; Ficorella C
Tumori
2013
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Journal Article
<a href="http://doi.org/10.1700/1283.14196" target="_blank" rel="noreferrer">10.1700/1283.14196</a>
Enhancing resilience in hospitalized children and adolescents
hospitalized child; Anxiety; biofeedback; California; Child; clinical psychology; Comorbidity; complication; distress syndrome; Female; Hospitalization; Human; Male; Mental Health; music; pain; Palliative therapy; pet therapy; PostTraumatic Stress Disorder; psychiatrist; psychosocial care; Socialization; wellbeing
Objectives: This presentation will describe a collaborative intervention that can enhance resilience in hospitalized patients when they are struggling with the emotional sequelae of their medical illness. The presentation will discuss the specialty services at the University of California, San Francisco, Benioff Children's Hospital (UCSF BCH) that work cooperatively to support salutogenesis (the origin of health), in contrast to pathogenesis. The efficacy of our multidisciplinary approach will be demonstrated through descriptions of changes in patients' mental status and subjective reports of distress from patients and parents. Methods: This seminar will present our multidisciplinary approach to enhancing well-being and supporting resilience. The presentation will describe the collaboration of several complementary specialties. Primary source material and anecdotal reports from clinical cases will be presented from these medical, psychological, and psychosocial disciplines. Results: At UCSF BCH, specialists play complementary roles in the effort to support the emotional well-being of hospitalized patients. The child and adolescent consultation-liaison psychiatrist provides insight into psychiatric comorbidities that may be contributing to distress and interfere with coping. Pharmacologic interventions target the symptoms of these comorbid illnesses. Pediatric palliative care physicians address the physiologic symptoms endured by children with serious medical illnesses. Clinical psychologists help to identify the feedback loop between anxiety and pain and enhance a sense of safety through empirically validated interventions for anxiety and traumatic stress. The Child Life Specialist's role includes preparation for procedures; creating and implementing a coping plan for individual procedures and overall hospitalization through art and music; and providing psychosocial support through socialization, medical play, pet therapy, and biofeedback. Conclusions: Diverse disciplines can work collaboratively to support the overall well-being of the hospitalized child and his/her family members by effectively promoting coping. This multidisciplinary approach to enhancing resilience enables children to thrive even if their illnesses are life-limiting.
2017
Ihle EC
Journal Of The American Academy Of Child And Adolescent Psychiatry
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jaac.2017.07.064" target="_blank" rel="noreferrer">10.1016/j.jaac.2017.07.064</a>
Toward family-centered inpatient medical care: The role of parents as participants in medical decisions.
Child; Female; Hospitalization; Humans; Male; Adult; Data Collection; Logistic Models; Middle Aged; Self Efficacy; Longitudinal Studies; Multivariate Analysis; Consumer Participation; Family Nursing; adolescent; decision making; Parents/psychology
OBJECTIVES: To determine parental participation in medical decision-making (MDM) during hospitalization and its association with parental self-efficacy and to explore other factors associated with participation. STUDY DESIGN: We surveyed parents of children admitted to a pediatric medical unit to measure parental report of participation in MDM during hospitalization and self-efficacy with physician interactions (categorized into tertiles). We performed multivariate logistic regression to evaluate the association between self-efficacy and parental participation, controlling for potential confounders. RESULTS: One hundred thirty of 278 eligible parents completed surveys and 86% reported participating in MDM about their child's care. After adjusting for covariates, parents with scores in the middle and highest self-efficacy tertiles had higher odds of participating in MDM compared with parents in the lowest tertile. Younger parents and parents of previously hospitalized children were also more likely to participate although parents with a high school education or less were less likely. CONCLUSIONS: Self-efficacy was significantly associated with parental participation in MDM during hospitalization after adjusting for confounding factors. Interventions to increase self-efficacy may also improve parental participation in MDM.
2007
Tarini BA; Christakis DA; Lozano P
The Journal Of Pediatrics
2007
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Journal Article
<a href="http://doi.org/10.1016/j.jpeds.2007.05.022" target="_blank" rel="noreferrer">10.1016/j.jpeds.2007.05.022</a>
Impact of an inpatient palliative care team: a randomized control trial.
Humans; Survival Rate; Prospective Studies; Aged; Cooperative Behavior; Patient Satisfaction; DNAR; DNAR Outcomes; Quality of Life/psychology; Critical Illness/psychology; patient care team; Hospice Care/utilization; Hospitalization; Palliative Care/mt [Methods]; patient care team; Advance Directives/sn [Statistics & Numerical Data]; Advance Directives/statistics & numerical data; Critical Illness/ep [Epidemiology]; Critical Illness/epidemiology; Critical Illness/px [Psychology]; Critical Illness/rehabilitation; Critical Illness/rh [Rehabilitation]; Hospice Care/ut [Utilization]; Hospitalization/statistics & numerical data; Hospitalization/statistics & numerical data; Palliative Care/methods; Quality of Life/px [Psychology]
BACKGROUND: Palliative care improves care and reduces costs for hospitalized patients with life-limiting illnesses. There have been no multicenter randomized trials examining impact on patient satisfaction, clinical outcomes, and subsequent health care costs., OBJECTIVE: Measure the impact of an interdisciplinary palliative care service (IPCS) on patient satisfaction, clinical outcomes, and cost of care for 6 months posthospital discharge., METHODS: Multicenter, randomized, controlled trial. IPCS provided consultative, interdisciplinary, palliative care to intervention patients. Controls received usual hospital care (UC)., SETTING AND SAMPLE: Five hundred seventeen patients with life-limiting illnesses from a hospital in Denver, Portland, and San Francisco enrolled June 2002 to December 2003., MEASURES: Modified City of Hope Patient Questionnaire, total health care costs, hospice utilization, and survival., RESULTS: IPCS reported higher scores for the Care Experience scale (IPCS: 6.9 versus UC: 6.6, p = 0.04) and for the Doctors, Nurses/Other Care Providers Communication scale (IPCS: 8.3 versus UC: 7.5, p = 0.0004). IPCS patients had fewer intensive care admissions (ICU) on hospital readmission (12 versus 21, p = 0.04), and lower 6-month net cost savings of $4,855 per patient (p = 0.001). IPCS had longer median hospice stays (24 days versus 12 days, p = 0.04). There were no differences in survival or symptom control., CONCLUSIONS: IPCS patients reported greater satisfaction with their care experience and providers' communication, had fewer ICU admissions on readmission, and lower total health care costs following hospital discharge.
2008
Gade G; Venohr I; Conner D; McGrady K; Beane J; Richardson RH; Williams MP; Liberson M; Blum M; Della PR
Journal Of Palliative Medicine
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/jpm.2007.0055" target="_blank" rel="noreferrer">10.1089/jpm.2007.0055</a>
Hospital care for parents after perinatal death
Female; Hospitalization; Humans; infant; Male; Fetal Death; Pregnancy; Adult; Parent-Child Relations; Infant Mortality; Autopsy; Choice Behavior; Funeral Rites; Adaptation; Psychological; patient care team; bereavement; Newborn; Parents/psychology; Photography; Pregnancy Trimester; Second; Stillbirth/psychology; Third
OBJECTIVE: To systematically review parent experiences with hospital care after perinatal death. DATA SOURCES: An evaluation of more than 1,100 articles from 1966 to 2006 was performed to identify studies of fetal death in the second or third trimester and neonatal death in the first month of life. METHODS OF STUDY SELECTION: Studies were limited to those that were in English, evaluated care in U.S. hospitals, and contained direct parent data or opinions. TABULATION, INTEGRATION, AND RESULTS: Results were compiled on five aspects of recommended care: 1) obtaining photographs and memorabilia of the deceased infant, 2) seeing and holding the infant, 3) labor and delivery of the child, 4) autopsies, and 5) options for funerals or memorial services. Sixty eligible studies with over 6,200 patients were reviewed. In general, parents reported appreciating time and contact with their deceased infant, being given options about labor, delivery, and burial, receiving photographs and memorabilia, and having appropriate hospital follow-up after autopsy. CONCLUSION: Although care after perinatal death often adheres to published guidelines, substantial room for improvement is apparent. Parents with perinatal losses report few choices during labor and delivery and inadequate communication about burial options and autopsy results. Hospitals, nurses, and doctors should increase parental choice about timing and location of delivery and postpartum care, encourage parental contact with the deceased infant, and facilitate provision of photos and memorabilia.
2007
Gold KJ; Dalton VK; Schwenk TL
Obstetrics And Gynecology
2007
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/01.AOG.0000259317.55726.df" target="_blank" rel="noreferrer">10.1097/01.AOG.0000259317.55726.df</a>
First documented rhythm and clinical outcome from in-hospital cardiac arrest among children and adults
Child; Female; Hospitalization; Humans; Male; Adult; Hospital Mortality; Prospective Studies; Aged; Middle Aged; Survival Analysis; adolescent; Preschool; 80 and over; infant; cardiopulmonary resuscitation; Heart Arrest/mortality/physiopathology/therapy; Tachycardia; Ventricular Fibrillation/physiopathology; Ventricular/physiopathology
CONTEXT: Cardiac arrests in adults are often due to ventricular fibrillation (VF) or pulseless ventricular tachycardia (VT), which are associated with better outcomes than asystole or pulseless electrical activity (PEA). Cardiac arrests in children are typically asystole or PEA. OBJECTIVE: To test the hypothesis that children have relatively fewer in-hospital cardiac arrests associated with VF or pulseless VT compared with adults and, therefore, worse survival outcomes. DESIGN, SETTING, AND PATIENTS: A prospective observational study from a multicenter registry (National Registry of Cardiopulmonary Resuscitation) of cardiac arrests in 253 US and Canadian hospitals between January 1, 2000, and March 30, 2004. A total of 36,902 adults (> or =18 years) and 880 children (<18 years) with pulseless cardiac arrests requiring chest compressions, defibrillation, or both were assessed. Cardiac arrests occurring in the delivery department, neonatal intensive care unit, and in the out-of-hospital setting were excluded. MAIN OUTCOME MEASURE: Survival to hospital discharge. RESULTS: The rate of survival to hospital discharge following pulseless cardiac arrest was higher in children than adults (27% [236/880] vs 18% [6485/36,902]; adjusted odds ratio [OR], 2.29; 95% confidence interval [CI], 1.95-2.68). Of these survivors, 65% (154/236) of children and 73% (4737/6485) of adults had good neurological outcome. The prevalence of VF or pulseless VT as the first documented pulseless rhythm was 14% (120/880) in children and 23% (8361/36,902) in adults (OR, 0.54; 95% CI, 0.44-0.65; P<.001). The prevalence of asystole was 40% (350) in children and 35% (13 024) in adults (OR, 1.20; 95% CI, 1.10-1.40; P = .006), whereas the prevalence of PEA was 24% (213) in children and 32% (11,963) in adults (OR, 0.67; 95% CI, 0.57-0.78; P<.001). After adjustment for differences in preexisting conditions, interventions in place at time of arrest, witnessed and/or monitored status, time to defibrillation of VF or pulseless VT, intensive care unit location of arrest, and duration of cardiopulmonary resuscitation, only first documented pulseless arrest rhythm remained significantly associated with differential survival to discharge (24% [135/563] in children vs 11% [2719/24,987] in adults with asystole and PEA; adjusted OR, 2.73; 95% CI, 2.23-3.32). CONCLUSIONS: In this multicenter registry of in-hospital cardiac arrest, the first documented pulseless arrest rhythm was typically asystole or PEA in both children and adults. Because of better survival after asystole and PEA, children had better outcomes than adults despite fewer cardiac arrests due to VF or pulseless VT.
2006
Nadkarni VM; Larkin GL; Peberdy MA; Carey SM; Kaye W; Mancini ME; Nichol G; Lane-Truitt T; Potts J; Ornato JP; Berg RA; National Registry of Cardiopulmonary Resuscitation Investigators
Jama
2006
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Journal Article
<a href="http://doi.org/10.1001/jama.295.1.50" target="_blank" rel="noreferrer">10.1001/jama.295.1.50</a>
Factors associated with location of death of children with cancer in palliative care
Child; Female; Hospitalization; Humans; Male; Palliative Care; Terminal Care; Home Nursing; Adult; Logistic Models; Prospective Studies; Multivariate Analysis; Brazil; adolescent; Preschool; decision making; infant; Neoplasms; location of death
OBJECTIVE: The aim of this study was to identify factors associated with location of death of patients receiving palliative care in a pediatric oncology unit. METHODS: A palliative care program was developed in the pediatric department in order to provide specialized attention to the patient and family in end-of-life. The program is coordinated by a nurse, delivering a simultaneous interdisciplinary team approach with focus on identification and training of a family care provider as well as local resources supplemented by support of a social worker and the community. All 87 patients in palliative care were followed by the team. The factors associated with the location of death (home or hospital) were evaluated for the 71 patients who died prior to analysis. RESULTS: Forty-two (59%) patients died at home. Factors significantly associated with dying at home were: male with an Odds Ratio (OR) = 3.80, 95% Confidence Interval (CI) = 1.26-11.76; public health insurance (OR) = 4.95, 95%[CI] = 1.03-26.75, low educational level of the caregiver (OR) = 11.11 95%[CI] = 1.65-94.66 and low educational level of the mother (OR) = 7.07 95%[CI] = 1.37-40.14. Gender was the only independent factor associated with location of death: a boy had a higher risk of dying at home, (OR) = 4.25, 95%[CI] = 1.37-13.21 when compared to a girl. SIGNIFICANCE OF RESULTS: In our society we are still not able to provide hospice care or home care for all children, although increasing emphasis has been placed on utilizing local resources. Even though we had increased the number of desired home deaths, it is still a challenge to meet patients and families' requests. A team approach, the recognition of the factors involved, and adequate health and community support have helped us to meet the child and family's needs.
2005
Kurashima AY; Latorre MR; Teixeira SA; De Camargo B
Palliative & Supportive Care
2005
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Journal Article
<a href="http://doi.org/10.1017/s1478951505050194" target="_blank" rel="noreferrer">10.1017/s1478951505050194</a>
Changing geographies of care: employing the concept of therapeutic landscapes as a framework in examining home space
Female; Hospitalization; Humans; Aged; Self Concept; Patient-Centered Care; Cost-Benefit Analysis; Social Environment; Geography; Psychology; Non-U.S. Gov't; Research Support; Caregivers/psychology; Home Nursing/economics/psychology; Delivery of Health Care/trends; Social; Social Change; Social Responsibility; Women/psychology
Changes in health care service delivery have resulted in the transfer of care from formal spaces such as hospitals and institutions towards informal settings such as home. Due to the degree of this transfer, it is increasingly important for geographers to explore the experience and meaning of these changing geographies of care in order to reveal and understand the impact and effect on particular individuals and places. Recognizing that the home environment not only designates a dwelling but also represents a multitude of meanings (such as personal identity, security and privacy) that likely vary according to class, ethnicity and family size (among other socio-demographic variables), it presents a complex site for study. This paper suggests research directions to further understand the role of caregiving in contributing to the experience and meaning of the home environment by informal caregivers, the majority of which are women. Using a political economy approach, this paper first reviews the reorganization of health care services and discusses how this is reshaping the experience of informal caregivers at home. A review of the place identity literature contextualizes the specific discussion of the literature on the meaning of home, both of which are then critically examined. Next, the concept of therapeutic landscapes is discussed as an idealized framework to explore the health-promoting properties of home on informal caregivers. Questions for research are outlined before conclusions highlight how research on home space can allow a better understanding of the impact and effect of caregiving on family caregivers and the places where they live. Such research can inform the changes and trends in health care service policy.
2002
Williams A
Social Science & Medicine
2002
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Journal Article
<a href="http://doi.org/10.1016/s0277-9536(01)00209-x" target="_blank" rel="noreferrer">10.1016/s0277-9536(01)00209-x</a>
Changes in mothers' basic beliefs following a child's bone marrow transplantation: the role of prior trauma and negative life events
Child; Female; Hospitalization; Humans; Male; Adult; Attitude to Health; Mother-Child Relations; Health Status; Longitudinal Studies; Mental Health; P.H.S.; Research Support; U.S. Gov't; Adaptation; Psychological; Psychological; Stress; Bone Marrow Transplantation/psychology; Wounds and Injuries/psychology
This longitudinal study examined the relation between life stress and basic beliefs about self-worth and the benevolence and meaningfulness of the world among mothers of children undergoing bone marrow transplantation (BMT). One hundred mothers completed study measures during the child's hospitalization for BMT and 1 year later. Prior trauma and recent negative events were associated with basic beliefs during hospitalization and also with changes in basic beliefs in the subsequent year, with distress mediating some of these relations. Findings also demonstrated relations between basic beliefs and physical and mental functioning. However, each basic belief exhibited different relations with study variables, suggesting the need to investigate them separately.
Rini C; Manne S; DuHamel KN; Austin J; Ostroff J; Boulad F; Parsons SK; Martini R; Williams S; Mee L; Sexson S; Redd WH
Journal Of Traumatic Stress
2004
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Journal Article
<a href="http://doi.org/10.1023/B:JOTS.0000038481.17167.0d" target="_blank" rel="noreferrer">10.1023/B:JOTS.0000038481.17167.0d</a>
Driscoll Children's Hospital respiratory syncytial virus database: risk factors, treatment and hospital course in 3308 infants and young children, 1991 to 2002
Hospitalization; Humans; infant; Intensive Care Units; Pediatrics; Length of Stay; Severity of Illness Index; Risk Factors; Medical Records; infant; Newborn; Premature; Human; Databases; Factual; Mechanical; Ventilators; Antiviral Agents/therapeutic use; Respiratory Syncytial Virus; Respiratory Syncytial Virus Infections/drug therapy/physiopathology/virology; Respiratory Tract Infections/drug therapy/physiopathology/virology; Ribavirin/therapeutic use
BACKGROUND: Treatment of respiratory syncytial virus (RSV) lower respiratory tract infection has historically been one of the most frequent reasons for admission to Driscoll Children's Hospital. OBJECTIVE: The objective of this study was to examine the relationship of risk factors for a severe and complicated disease course to the treatment and hospital length of stay. METHODS: Subjects were identified through a retrospective review of the medical records of all patients discharged with a diagnosis of RSV lower respiratory tract infection during 9 of the 11 RSV seasons between July 1, 1991 and June 30, 2002. The RSV seasons from 1991-1992 to 1994-1995 were compared with the RSV seasons from 1995-1996 to 2001-2002 with regard to treatment and hospital course. RESULTS: There were a total of 3308 admissions. Compared with patients with no risk factors, higher percentages of patients with age <6 weeks, history of prematurity, congenital heart disease and neurologic disease were admitted to the pediatric intensive care unit (PICU) and required mechanical ventilation (P < 0.001). Also the hospital length of stay was longer for patients with each of these individual risk factors (P < 0.001). The hospital length of stay and the percentages of patients admitted to the PICU and requiring on mechanical ventilation increased as the number of risk factors increased from zero to 3 or more (P < 0.001). Of patients with 3 or more risk factors, the average hospital length of stay was 13.5 days; 67% were admitted to the PICU, and 47% required mechanical ventilation. Ribavirin use decreased in patients with each of the individual risk factors (P < 0.001) as well as in patients with one or more risk factors (P < 0.001). At the same time the PICU admission rate increased from 6.1% to 11.2% (P < 0.001). CONCLUSIONS: Patients with three or more risk factors were at very high risk for having a severe or complicated disease course associated with admission to the PICU, placement on mechanical ventilation and a longer hospital length of stay.
2004
Purcell K; Fergie J
The Pediatric Infectious Disease Journal
2004
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Journal Article
<a href="http://doi.org/10.1097/01.inf.0000126273.27123.33" target="_blank" rel="noreferrer">10.1097/01.inf.0000126273.27123.33</a>
The use of a modified Delphi procedure for the determination of 26 prognostic factors in the sub-acute stage of stroke
Hospitalization; Humans; Patient Discharge; Prognosis; Research Design; Activities of Daily Living; Residence Characteristics; Delphi Technique; Disability Evaluation; Non-U.S. Gov't; Research Support; social support; Recovery of Function; Cerebrovascular Accident/rehabilitation; Subacute Care/organization & administration
The aim of this study was to reach consensus about the prognostic factors when deciding the discharge destination from a hospital stroke unit, and to construct a prognostic conceptual framework. To realise an optimal integration of knowledge from research findings and from clinical experience by expert opinions we used a 'modified Delphi Technique', which is the most commonly used method for the production of clinical guidelines. The process yielded 26 prognostic factors, which were arranged in clinical and social sub-domains. The sub-domains and the factors within each sub-domain were prioritised according to their assumed predictive value for the decision process. The order of importance of the prognostic factors in the clinical domain was: (1) disabilities, (2) pre-morbid disabilities, (3) impairments and (4) disease/biology; and the order of importance of the factors in the social domain was: (1) home front, (2) social situation and (3) residence. The Delphi procedure is an excellent instrument to determine and prioritise prognostic factors. With this procedure research-based and consensus-based knowledge can be combined. For a valid procedure it is mandatory to state explicitly in advance how the scores will be judged, and to explain the scientific level of the evidence during the whole procedure.
2003
Meijer R; Ihnenfeldt D; Vermeulen M; De Haan R; Van Limbeek J
International Journal Of Rehabilitation Research
2003
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Journal Article
<a href="http://doi.org/10.1097/01.mrr.0000102660.02099.8f" target="_blank" rel="noreferrer">10.1097/01.mrr.0000102660.02099.8f</a>
Relationship between three palliative care outcome scales
Female; Hospitalization; Humans; Male; Adult; England; Questionnaires; Aged; Middle Aged; Socioeconomic Factors; Psychometrics; Sickness Impact Profile; 80 and over; Adaptation; Psychological; Caregivers/psychology; Family/psychology; Palliative Care/psychology; Quality of Life/psychology; home care services; Neoplasms/physiopathology/psychology/therapy; Outcome Assessment (Health Care)/methods
BACKGROUND: Various scales have been used to assess palliative outcomes. But measurement can still be problematic and core components of measures have not been identified. This study aimed to determine the relationships between, and factorial structure of, three widely used scales among advanced cancer patients. METHODS: Patients were recruited who received home or hospital palliative care services in the south of England. Hope, quality of life and palliative outcomes were assessed by patients in face to face interviews, using three previously established scales - a generic measure (EQoL), a palliative care specific measure (POS) and a measure of hope (Herth Hope Index). Analysis comprised: exploratory factor analysis of each individual scale, and all scales combined, and confirmatory factor analysis for model building and validation. RESULTS: Of 171 patients identified, 140 (81%) consented and completed first interviews; mean age was 71 years, 54% were women, 132 had cancer. In exploratory analysis of individual means, three out of the five factors in the EQoL explained 75% of its variability, four out of the 10 factors in POS explained 63% of its variability, and in the Hope Index, nine out of the 12 items explained 69% of its variability. When exploring the relative factorial structure of all three scales, five factors explained 56% of total combined variability. Confirmatory analysis reduced this to a model with four factors - self-sufficiency, positivity, symptoms and spiritual. Removal of the spiritual factor left a model with an improved goodness of fit and a measure with 11 items. CONCLUSION: We identified three factors which are important outcomes and would be simple to measure in clinical practice and research.
2004
Higginson IJ; Donaldson N
Health And Quality Of Life Outcomes
2004
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Journal Article
<a href="http://doi.org/10.1186/1477-7525-2-68" target="_blank" rel="noreferrer">10.1186/1477-7525-2-68</a>
Mothers' perceptions of benefit following pediatric stem cell transplantation: a longitudinal investigation of the roles of optimism, medical risk, and sociodemographic resources
Child; Female; Hospitalization; Humans; Male; Adult; Mother-Child Relations; Attitude; Longitudinal Studies; Risk Factors; Social Class; Regression Analysis; Perception; adolescent; Preschool; P.H.S.; Research Support; U.S. Gov't; Adaptation; Psychological; infant; Psychological; Stress; social support; Hematopoietic stem cell transplantation
BACKGROUND: This longitudinal study investigated the course and predictors of benefit finding among 144 mothers of children undergoing hematopoietic stem cell transplantation (HSCT), a severely stressful and life-threatening medical procedure. PURPOSE: Children's medical risk and mothers' dispositional optimism and sociodemographic resources were examined as predictors of benefit finding. The association between benefit finding and mothers' psychosocial adaptation was also investigated. METHODS: Assessments occurred during hospitalization for HSCT (Time 1 [T1]) and 6 months later (Time 2 [T2]). RESULTS: Hierarchial multiple regression analyses revealed that predictors of benefit finding differed systematically across assessments, with optimism and medical risk predicting benefit finding at both time points but sociodemographic resources predicting only T2 benefit findings. Benefit finding did not predict psychosocial adaptation until optimism was considered as a moderator of their relation: T1 benefit finding was positively associated with T2 adaptation only for mothers high in optimism. CONCLUSION: The need for longitudinal research on posttrauma adaptation and the utility of considering the natural history of the trauma are discussed.
Rini C; Manne S; DuHamel KN; Austin J; Ostroff J; Boulad F; Parsons SK; Martini R; Williams SE; Mee L; Sexson S; Redd WH
Annals Of Behavioral Medicine: A Publication Of The Society Of Behavioral Medicine
2004
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Journal Article
<a href="http://doi.org/10.1207/s15324796abm2802_9" target="_blank" rel="noreferrer">10.1207/s15324796abm2802_9</a>
Circumstances surrounding the deaths of hospitalized children: opportunities for pediatric palliative care.
Child; Female; Hospitalization; Humans; infant; Male; Palliative Care; Terminal Care; Terminally Ill; Withholding Treatment; Hospital Mortality; Length of Stay; Longitudinal Studies; Academic Medical Centers; adolescent; Preschool; Non-U.S. Gov't; Research Support; infant; Newborn; retrospective studies; Hospitalized; Pain/diagnosis/drug therapy
OBJECTIVES: Little is known regarding the assessment and treatment of symptoms during end-of-life (EOL) care for children. This study was conducted to describe the circumstances surrounding the deaths of hospitalized terminally ill children, especially pain and symptom management by the multidisciplinary pediatric care team. DESIGN: Patients in the neonatal intensive care unit, pediatric critical care unit, or general pediatric units of Vanderbilt Children's Hospital who were hospitalized at the time of death, between July 1, 2000, and June 30, 2001, were identified. Children eligible for the survey had received inpatient EOL care at the hospital for at least 24 hours before death. A retrospective medical record review was completed to describe documentation of care for these children and their families during the last 72 hours of life. RESULTS: Records of children who had received inpatient EOL care were identified (n = 105). A majority (87%) of children were in an intensive care setting at the time of death. Most deaths occurred in the pediatric critical care unit (56%), followed by the neonatal intensive care unit (31%). Pain medication was received by 90% of the children in the last 72 hours of life, and 55% received additional comfort care measures. The presence of symptoms other than pain was infrequently documented. CONCLUSIONS: The duration of hospitalization for most children dying in this inpatient setting was sufficient for provision of interdisciplinary pediatric palliative care. Management of pain and other symptoms was accomplished for many children. The documentation of pain and symptom assessment and management can be improved but requires new tools.
2004
Carter BS; Howenstein M; Gilmer MJ; et al
Pediatrics
2004
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Journal Article
<a href="http://doi.org/10.1542/peds.2003-0654-f" target="_blank" rel="noreferrer">10.1542/peds.2003-0654-f</a>
Discussing do-not-resuscitate orders in the hospital setting: Part 1
Hospitalization; Communication; decision making; Human; Resuscitation Orders; Terminal Care; Patient Education; Patient Participation
2002
von Gunten CF; Weissman DE
Journal Of Palliative Medicine
2002
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Journal Article
Death of a child at home or in the hospital: subsequent psychological adjustment of the family
Child; Female; Hospitalization; Humans; Male; Grief; Family; Adult; Middle Aged; Death; Personality Inventory; Non-U.S. Gov't; P.H.S.; Research Support; U.S. Gov't; Adaptation; Psychological; Comparative Study; Neoplasms/therapy; location of death; Interview; home care services; MMPI; Terminal Care/methods
Twenty-four families who had participated in a Home Care Program for children terminally ill with cancer and 13 families of similar children who had died in the hospital completed inventories on parent and sibling personality as well as family functioning three to 29 months after the child's death. Parents of patients who received terminal care in the hospital were more anxious, depressed, and defensive and had greater tendencies toward somatic and interpersonal problems than parents of patients in the Home Care Program. Siblings of patients who received terminal care in the hospital were more emotionally inhibited, withdrawn, and fearful than their counterparts in the Home Care Program. Although some group differences in parental personality may have antedated terminal care, these results confirm parental reports of more adequate family adjustment following participation in a structured Home Care Program.
Mulhern RK; Lauer ME; Hoffmann RG
Pediatrics
1983
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Journal Article
<a href="http://doi.org/10.1016/s0002-7138(09)61529-6" target="_blank" rel="noreferrer">10.1016/s0002-7138(09)61529-6</a>
Use of health services by chronically ill and disabled children
Child; Hospitalization; Humans; Socioeconomic Factors; Disabled Persons; School Nursing; adolescent; Preschool; Chronic disease; Statistics as Topic; Process Mapping; Child Health Services/utilization; Ohio; Dental Health Services/utilization; Mental Health Services/utilization; Occupational Therapy/utilization; Physical Therapy Modalities/utilization; Physicians/utilization; Social Work/utilization; Speech Therapy/utilization
Hospitalization and use of outpatient health care services during a 1-year period by 369 pediatric patients with cystic fibrosis, cerebral palsy, myelodysplasia, or multiple physical handicaps and 456 randomly selected children without congenital conditions from the Cleveland area were examined. Use of hospitalization and outpatient services by the average chronically ill or disabled child was 10 times that of the average comparison child. Physician specialists, occupational and physical therapists, and school nurses were the major outpatient categories used disproportionately by children with chronic illnesses or disabilities. The major share of health care used by children with chronic conditions was attributable to a small subset of children: All hospital care was accounted for by one third of the children, and three quarters of all outpatient care was accounted for by one quarter of that sample. Hospital care was used at similar rates by the four diagnostic groups. However, amount and type of outpatient care varied by diagnosis, level of functional impairment, race, and income. Estimated average expenditure for health services used by the chronically ill or disabled sample was 10 times that of the comparison sample. Relative distribution of estimated expenditures across types of services differed for the two samples as well as among diagnostic categories.
1984
Smyth-Staruch K; Breslau N; Weitzman M; Gortmaker S
Medical Care
1984
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Journal Article
<a href="http://doi.org/10.1097/00005650-198404000-00003" target="_blank" rel="noreferrer">10.1097/00005650-198404000-00003</a>
Continuity of care: an approach to measurement
Hospitalization; Humans; Questionnaires; Follow-Up Studies; Prospective Studies; Communication; Psychotherapy; Comprehensive Health Care; Medical Records; Ambulatory Care; Models; referral and consultation; Theoretical; Community Mental Health Services; Evaluation Studies as Topic; Community Psychiatry; Day Care; Mental Disorders/therapy; Transfer Agreement
1972
Bass RD; Windle C
The American Journal Of Psychiatry
1972
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Journal Article
<a href="http://doi.org/10.1176/ajp.129.2.196" target="_blank" rel="noreferrer">10.1176/ajp.129.2.196</a>
An alternative in terminal care: results of the National Hospice Study
Female; Hospitalization; Male; United States; Adult; Aged; Health Services Research; Cancer Care Facilities; Outcome and Process Assessment (Health Care); quality of life; Non-U.S. Gov't; U.S. Gov't; Comparative Study; Models; Costs and Cost Analysis; Health; Insurance; Medicare/economics; Human; Theoretical; Support; Middle Age; home care services; Non-P.H.S.; Neoplasms/physiopathology/psychology/therapy; Hospices/classification/economics/organization & administration; Terminal Care/economics/organization & administration; Pain/epidemiology; Reimbursement/economics
Hospice is a program of supportive services for terminally ill patients and their families, provided either at home or in designated inpatient settings, which is purported to improve patient and family quality of life at lower cost than conventional terminal care. The National Hospice Study was a multi-site, quasi-experimental study to compare the experiences of terminal cancer patients and their families in hospices with those of similar patients and families receiving conventional terminal care. The results indicate that, although care is different in hospices, e.g. lesser utilization of aggressive interventional therapy and diagnostic testing, patients' quality of life is similar in the hospice and conventional care systems with the exception of pain and symptom control, which may be better in the inpatient hospice setting. Hospice patients are more likely to die at home and their families are satisfied with that outcome. Otherwise, no consistent superiority of family outcome was associated with the hospice approach. The cost of hospice care is less than that of conventional terminal care for patients in hospices without inpatient facilities, but the cost of hospice appears to be equivalent to conventional care for patients in hospices having beds.
1986
Greer DS; Mor V; Morris JN; Sherwood S; Kidder D; Birnbaum H
Journal Of Chronic Diseases
1986
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Journal Article
Hospital care of patients with dementia.
Hospitalization; Humans; Palliative Care; Advance Directives; Prognosis; Acute Disease; Double Effect Principle; advance care planning; Dementia/co [Complications]; Dementia/mo [Mortality]; Hip Fractures/co [Complications]; Hip Fractures/th [Therapy]; Patient Care; Pneumonia/co [Complications]; Pneumonia/th [Therapy]; DNAR
2000
Riesenberg D
Jama
2000
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Journal Article
<a href="http://doi.org/10.1001/jama.284.1.87" target="_blank" rel="noreferrer">10.1001/jama.284.1.87</a>
Methadone is safe for treating hospitalized patients with severe pain
Child; Female; Hospitalization; Humans; Male; Adult; Analgesics; Aged; Middle Aged; Analgesia; adolescent; Preschool; infant; Administration; Oral; retrospective studies; Pain/drug therapy; Pain Measurement/drug effects; Epidural; Methadone/administration & dosage/adverse effects/therapeutic use; Monitoring; Opioid/administration & dosage/adverse effects/therapeutic use; Physiologic
PURPOSE: Methadone is still regarded as a second line opioid for patients suffering from severe pain, and is rarely used in hospitalized patients. The infrequent use of methadone is probably due to its long plasma half-life that could lead to accumulation and toxicity. In the present study we report that clinically effective analgesic doses of methadone, given either epidurally or orally, can be used safely for prolonged treatment in hospitalized patients. Clinical features: Over a five-year period we administered methadone at Hadassah Hospital in Jerusalem to 3,954 in-patients with severe pain, 12% of whom were younger than 17 yr. Satisfactory pain relief was recorded in more than 85% of the patients. None of the patients treated with oral methadone developed serious side effects. Three patients, treated with epidural methadone (0.09%), developed a clinically significant respiratory depression. In all three cases, epidural pump failure or pump misprogramming resulted in methadone overdose. None of the children or adults treated with methadone developed addiction during hospitalization. CONCLUSION: Based on its analgesic properties and marked safety profile, we suggest that methadone could be added to the analgesic armamentarium of in-hospital health-care providers. Moreover, methadone could serve as the opioid of first choice in some in-patient populations.
2001
Shir Y; Rosen G; Zeldin A; Davidson EM
Canadian Journal Of Anaesthesia
2001
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Journal Article
<a href="http://doi.org/10.1007/bf03020377" target="_blank" rel="noreferrer">10.1007/bf03020377</a>
Oral methadone for the treatment of severe pain in hospitalized children: a report of five cases
Child; Female; Male; Analgesics; Parents; Treatment Outcome; Analgesia; Preschool; Administration; Oral; Neoplasms/therapy; Human; Case Report; Opioid/therapeutic use; Patient-Controlled; Wounds; Hospitalization; Palliative Care/methods; Burns/therapy; Methadone/therapeutic use; Nonpenetrating/therapy; Osteopetrosis/therapy; Pain/physiopathology
OBJECTIVE: Pain relief is still inadequate in many hospitalized patients, especially children in whom suboptimal use of analgesic drugs is still common. In the past 2 years, oral methadone has been used extensively in our institution for treating children with persistent pain from cancer, burns, or trauma who were capable of oral intake and whose pain was not relieved by nonopioid medications. SETTING: Tertiary university hospital. PATIENTS: Of the 70 children treated thus far with oral methadone, five are described in the present report. MAIN OUTCOME MEASURE: Pain relief, acceptability, and side effects of oral methadone in children with pain. RESULTS: Treatment with oral methadone (0.1% in 10% glucose, dose range of 0.2-0.6 mg/kg/day) for time periods of up to 6 weeks resulted in a rapid onset and stable pain relief, with no major side effects. No adverse responses were encountered after discontinuation of treatment. In three of the children, a parent-controlled analgesia regimen was successfully employed. CONCLUSIONS: Oral methadone can be recommended for babies and children who have severe pain that is not alleviated by nonopioid medications and who are capable of oral intake.
1998
Shir Y; Shenkman Z; Shavelson V; Davidson EM; Rosen G
Clinical Journal Of Pain
1998
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/00002508-199812000-00013" target="_blank" rel="noreferrer">10.1097/00002508-199812000-00013</a>
Prospective study of symptom control in 133 cases of palliative care inpatients in Shatin Hospital
Female; Hospitalization; Male; Adult; Prospective Studies; Aged; quality of life; 80 and over; Human; Palliative Care; Neoplasms/th [Therapy]; Middle Age; Health Care; Quality Assurance; Hong Kong/ep [Epidemiology]; Neoplasms/ep [Epidemiology]
We report a prospective study assessing the prevalence and severity of physical and nonphysical symptoms, and the benefits from treatment and intervention, in advanced cancer patients presenting to a local palliative care unit in Hong Kong. Patients were assessed by a modified version of the support team assessment schedule (STAS). The study highlighted some symptoms which needed better control, and also reinforced the team morale by demonstrating aspects where there was definite improvement. In general, the STAS was found to be practicable and acceptable by our patients and staff. The most important benefit gained from the study was the successful dissemination of the concept of audit and quality assurance throughout the unit, which is essential for continuous improvement in the future.
1999
Lo RS; Ding A; Chung TK; Woo J
Palliative Medicine
1999
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1191/026921699677451150" target="_blank" rel="noreferrer">10.1191/026921699677451150</a>
Lessons learned and not learned from the SUPPORT project
Hospitalization; Adult; Euthanasia; Health Care Costs; quality of life; Randomized Controlled Trials; Human; decision making; Terminally Ill; Passive
1999
Teno JM
Palliative Medicine
1999
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
Pediatric palliative care patients: a prospective multicenter cohort study
adolescent; Child; Female; Hospitalization; Humans; infant; Male; United States; Young Adult; Palliative Care; Prevalence; Chronic disease; Eligibility Determination; Follow-Up Studies; Medical Audit; Prospective Studies; adolescent; Preschool; Palliative Care/organization & administration; infant; Newborn; PEDI Study; United States/epidemiology; Chronic Disease/epidemiology/therapy; Eligibility Determination/methods; Hospitalization/trends; Medical Audit/organization & administration
OBJECTIVE: To describe demographic and clinical characteristics and outcomes of patients who received hospital-based pediatric palliative care (PPC) consultations. DESIGN, SETTING, AND PATIENTS: Prospective observational cohort study of all patients served by 6 hospital-based PPC teams in the United States and Canada from January to March 2008. RESULTS: There were 515 new (35.7%) or established (64.3%) patients who received care from the 6 programs during the 3-month enrollment interval. Of these, 54.0% were male, and 69.5% were identified as white and 8.1% as Hispanic. Patient age ranged from less than one month (4.7%) to 19 years or older (15.5%). Of the patients, 60.4% lived with both parents, and 72.6% had siblings. The predominant primary clinical conditions were genetic/congenital (40.8%), neuromuscular (39.2%), cancer (19.8%), respiratory (12.8%), and gastrointestinal (10.7%). Most patients had chronic use of some form of medical technology, with gastrostomy tubes (48.5%) being the most common. At the time of consultation, 47.2% of the patients had cognitive impairment; 30.9% of the cohort experienced pain. Patients were receiving many medications (mean: 9.1). During the 12-month follow-up, 30.3% of the cohort died; the median time from consult to death was 107 days. Patients who died within 30 days of cohort entry were more likely to be infants and have cancer or cardiovascular conditions. CONCLUSIONS: PPC teams currently serve a diverse cohort of children and young adults with life-threatening conditions. In contrast to the reported experience of adult-oriented palliative care teams, most PPC patients are alive for more than a year after initiating PPC.
Feudtner C; Kang T; Hexem KR; Friedrichsdorf SJ; Osenga K; Siden H; Friebert SE; Hays Ross M; Dussel V; Wolfe J
Pediatrics
2011
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Journal Article
<a href="http://doi.org/10.1542/peds.2010-3225" target="_blank" rel="noreferrer">10.1542/peds.2010-3225</a>
Half of older Americans seen in emergency department in last month of life; most admitted to hospital, and many die there
Female; Hospitalization; Humans; Male; United States; Terminal Care; Terminally Ill; Hospital Mortality; Aged; Emergency Service; 80 and over; Hospital; Insurance Claim Review
Emergency department use contributes to high end-of-life costs and is potentially burdensome for patients and family members. We examined emergency department use in the last months of life for patients age sixty-five or older who died while enrolled in a longitudinal study of older adults in the period 1992-2006. We found that 51 percent of the 4,158 [corrected] decedents visited the emergency department in the last month of life, and 75 percent in the last six months of life. Repeat visits were common. A total of 77 percent of the patients seen in the emergency department in the last month of life were admitted to the hospital, and 68 percent of those who were admitted died there. In contrast, patients who enrolled in hospice at least one month before death rarely visited the emergency department in the last month of life. Policies that encourage the preparation of patients and families for death and early enrollment in hospice may prevent emergency department visits at the end of life.
Smith AK; McCarthy E; Weber E; Cenzer IS; Boscardin J; Fisher J; Covinsky K
Health Affairs
2012
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Journal Article
<a href="http://doi.org/10.1377/hlthaff.2011.0922" target="_blank" rel="noreferrer">10.1377/hlthaff.2011.0922</a>
Advanced care planning in cystic fibrosis
cystic fibrosis; 7782-44-7 (oxygen); chest tube; Child; Clinical Article; comfort; durable power of attorney; Female; Forced Expiratory Volume; hemoptysis; Hospitalization; Human; lifespan; living will; Male; outpatient; oxygen; Palliative therapy; Pilot study; pneumothorax; practice guideline; school child; thinking
Background: Advanced care planning (ACP) is recommended for people with cystic fibrosis (CF). To date, a CF-specific consensus statement that would help CF care teams incorporate ACP into clinical practice has not been developed. Additional research on ACP topics and preferences for optimal implementation is needed to support evidence-based incorporation into routine CF care. Objective: To assess ACP experiences and preferences among individuals with CF in order to inform future interventions aimed at improving ACP in CF. Methods: We surveyed 41 patients with CF aged >=12 years participating in a pilot study of a primary palliative care intervention (Coping, goal Assessment, and Relief from Evolving CF Symptoms [CF-CARES]). We assessed 4 domains of ACP: prior thoughts about ACP, comfort with ACP, preferences for ACP, and prior completion of ACP. We also evaluated the impact of disease severity on certain measures. Severe disease was defined as: Forced Expiratory Volume in 1 second (FEV<inf>1</inf>) <30%, >=4 CF hospitalizations in past year, ever had pneumothorax requiring chest tube placement, ever had massive hemoptysis/hemoptysis requiring hospitalization, or current home oxygen use. Results: We found that most participants worry about ACP topics: 92% worry about the impact of CF on their lifespan and 84% worry about what living with CF would be like if they were to get sicker. The majority (52%) had thought at least "somewhat" about what their important goals and wishes would be if their health situation were to worsen. Only 37% had specific wishes about the types of medical treatment they would or wouldn't want at end of life. The vast majority of participants reported feeling very comfortable talking with CF providers about ACP topics. However, only 5% reported previously talking to a CF team member about the care they would want if they became too ill to make decisions on their own. Few participants (11%) had completed a durable power of attorney for health care or living will. Participants overall preferred to have ACP discussions initiated by any member of the CF team who knows them well, during a period of stability when generally healthy but meeting a certain threshold (e.g. >=4 hospitalizations per year or FEV<inf>1</inf> <40%), and in the outpatient setting. Severe disease was not statistically associated with subjects' worry about getting sicker, comfort talking to CF providers about ACP, or setting preferences for ACP. Conclusions: Our results support the need for a consistent approach to ACP for CF patients earlier in the illness course when patients are still generally healthy. People with CF appear to worry about ACP topics, but need more support from the CF team to understand and document their ACP choices. Future guidelines on ACP in CF, as well as CF-specific ACP materials for patients, may help ensure that all individuals with CF benefit from ACP..
Linnemann RW; Friedman D; Altstein L; Georgiopoulos A; Islam S; Bach K; St John A; Moskowitz SM; Yonker LM
Pediatric Pulmonology
2017
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<a href="http://doi.org/10.1002/ppul.23840" target="_blank" rel="noreferrer">10.1002/ppul.23840</a>
End-of-Life Intensity for Adolescents and Young Adults With Cancer: A Californian Population-Based Study That Shows Disparities
Adolescence; Adult; Age Factors; California; Childhood Neoplasms -- Therapy -- California; Confidence Intervals; Death Certificates; Descriptive Statistics; Healthcare Disparities -- California; Hematologic Neoplasms -- Therapy -- California; Hispanics; Hospitalization; Hospital Mortality; Human; Intensive Care Units; Intubation; Minority Groups; Neoplasms -- Therapy -- California; Odds Ratio; Oncologic Care -- California; Race Factors; Readmission; Retrospective Design; Socioeconomic Factors; Terminal Care -- California; Whites; Young Adult
Purpose Cancer is the leading cause of nonaccidental death among adolescents and young adults (AYAs). High-intensity end-of-life care is expensive and may not be consistent with patient goals. However,the intensity of end-of-life care forAYAdecedents with cancer--especially the effect of care received at specialty versus nonspecialty centers--remains understudied.
Johnston EE; Alvarez E; Saynina O; Sanders L; Bhatia S; Chamberlain LJ
Journal Of Oncology Practice
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1200/jop.2016.020586" target="_blank" rel="noreferrer">10.1200/jop.2016.020586</a>
Pediatric chronic patients at outpatient clinics: A study in a Latin American University Hospital
Chronic Patient; Emergency Ward; Hospital Admission; Hospitalization; Outpatient; University Hospital; Adolescent; Adult; Cardiology; Child; Controlled Study; Cross Sectional Study; Death; Emergency Health Service; Endocrinology; Female; Hematology; Human; Intensive Care Unit; Kidney Transplantation; Major Clinical Study; Male; Nephrology; Neurology; Oncology; Pain; Physician; Psychiatry; Rheumatology
Objective: To describe the characteristics of children and adolescentes with chronic diseases of outpatient clinics at a tertiary university hospital. Methods: A cross-sectional study was performed with 16,237 patients with chronic diseases followed-up in one year. The data were collected through the electronic system, according to the number of physician appointments in 23 pediatric specialties. Patients were divided in two groups: children (0-9 years) and adolescents (10-19 years). Early (10-14 years) and late (15-19 years) adolescent groups were also analyzed. Results: Of the total sample, 56% were children and 46% were adolescents. The frequencies of following pediatric specialties were significantly higher in adolescents when compared with children: cardiology, endocrinology, hematology, nephrology/renal transplantation, neurology, nutrology, oncology, palliative and pain care, psychiatry, and rheumatology (p <. 0.05). The frequencies of emergency service visits (30% vs. 17%, p <. 0.001), hospitalizations (23% vs. 11%, p <. 0.001), intensive care unit admissions (6% vs. 2%, p <. 0.001), and deaths (1% vs. 0.6%, p = 0.002) were significantly lower in adolescents than in children. However, the number of physician appointments (>=13) per patient was also higher in the adolescent group (5% vs. 6%, p = 0.018). Further analysis comparison between early and late adolescents revealed that the first group had significantly more physician appointments (35% vs. 32%, p = 0.025), and required more than two pediatric specialties (22% vs. 21%, p = 0.047). Likewise, the frequencies of emergency service visits (19% vs. 14%, p <. 0.001) and hospitalizations (12% vs. 10%, p = 0.035) were higher in early adolescents. Conclusions: This study evaluated a large population in a Latin American hospital and suggested that early adolescents with chronic diseases required many appointments, multiple specialties and hospital admissions.
Alveno RA; Miranda CV; Passone CG; Waetge AR; Hojo ES; Farhat SCL; Odone-Filho V; Tannuri U; Carvalho WB; Carneiro-Sampaio M; Silva CA
Jornal De Pediatria.
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jped.2017.07.014" target="_blank" rel="noreferrer">10.1016/j.jped.2017.07.014</a>
Children with Down syndrome: Clinical course and mortality-associated factors in a French medical paediatric intensive care unit
Hospitalization; Intensive Care Units Pediatric; Adolescent; Child; Child Preschool; Critical Illness/ Mortality; Critically Ill Children; Down Syndrome; Down Syndrome/ Complications/ Mortality; Female; Hospital Mortality; Humans; Infant; Male; Mortality; Retrospective Studies
AIM: To investigate clinical course and mortality-associated factors in children with Down syndrome (DS) managed in a medical paediatric intensive care unit. METHODS: A single-centre, retrospective study conducted between 2001 and 2010 in DS children aged 1 month to 16 years. RESULTS: Sixty-six patients with a median age of 24 months (1-192) and a male/female ratio of 1.5 were analysed. Patients presented with history of congenital heart disease (n = 52, 78.8%), mechanical ventilation (n = 40, 60.6%) and chronic upper airway obstruction (n = 10, 15.1%). The primary reason for admission was respiratory failure (n = 56, 84.8%). Pulmonary arterial hypertension (PAH) (n = 19, 28.8%), acute respiratory distress syndrome (ARDS) (n = 18, 27.2%) and sepsis (n = 14, 21.2%) were observed during their clinical course. Twenty-six patients died (39.4%). Mortality-associated factors included the following: (i) baseline characteristics: history of mechanical ventilation, chronic upper airway obstruction and congenital heart disease; (ii) clinical course during paediatric intensive care unit stay: sepsis, catecholamine support, ARDS, PAH and nosocomial infection. In multivariate logistic analysis, history of mechanical ventilation, ARDS and PAH remained independently associated with death. CONCLUSIONS: The mortality rate in critically ill DS children admitted for medical reasons is high and is predominantly associated with respiratory conditions.
Joffre C; Lesage F; Bustarret O; Hubert P; Oualha M
Journal Of Paediatrics And Child Health
2016
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<a href="https://doi.org/10.1111/jpc.13214" target="_blank" rel="noreferrer">10.1111/jpc.13214</a>
Mortality, length of stay, bloodstream and respiratory viral infections in a pediatric intensive care unit
Length Of Stay; Asthma; Bacterial Coinfection; Child; Child Health Services; Child Preschool; Critical Care; Female; Hong Kong/epidemiology; Hospitalization; Humans; Infant; Intensive Care Units Pediatric; Leukemia; Logistic Models; Lymphoma; Male; Odds Ratio; Pediatric Intensive Care; Respiratory Tract Infections/complications/ Epidemiology/microbiology/mortality; Respiratory Virus; Retrospective Studies; Risk Factors; Sepsis/complications/ Epidemiology/microbiology/mortality; Survival Analysis
OBJECTIVES: We investigated whether diagnostic categories and presence of infections were associated with increased mortality or length of stay (LOS) in patients admitted to a pediatric intensive care unit (PICU). METHODS: A retrospective study of all PICU admissions between October 2002 and April 2016 was performed. Oncologic vs nononcologic, trauma/injuries vs nontraumatic, infectious (gram-positive, gram-negative, fungal bloodstream infections, common respiratory viruses) vs noninfectious diagnoses were evaluated for survival and LOS. RESULTS: Pediatric intensive care unit admissions (n = 2211) were associated with a mortality of 5.3%. Backward binary logistic regression showed that nonsurvival was associated with leukemia (odds ratio [OR], 4.81; 95% confidence interval [CI], 2.2-10.10; P < .0005), lymphoma (OR, 21.34; 95% CI, 3.89-117.16; P < .0005), carditis/myocarditis (OR, 7.91; 95% CI, 1.98-31.54; P = .003), encephalitis (OR, 6.93; 95% CI, 3.27-14.67; P < .0005), bloodstream infections with gram-positive organisms (OR, 5.32; 95% CI, 2.67-10.60; P < .0005), gram-negative organisms (OR, 8.23; 95% CI, 4.10-16.53; P < .0005), fungi (OR, 3.93; 95% CI, 1.07-14.42; P = .039), and pneumococcal disease (OR, 3.26; 95% CI, 1.21-8.75; P = .019). Stepwise linear regression revealed that LOS of survivors was associated with bloodstream gram-positive infection (B = 98.2; 95% CI, 75.7-120.7; P < .0005). CONCLUSIONS: Patients with diagnoses of leukemia, lymphoma, cardiomyopathy/myocarditits, encephalitis, and comorbidity of bloodstream infections and pneumococcal disease were significantly at risk of PICU mortality. Length of stay of survivors was associated with bloodstream gram-positive infection. The highest odds for death were among patients with leukemia/lymphoma and bloodstream coinfection. As early diagnosis of these childhood malignancies is desirable but not always possible, adequate and early antimicrobial coverage for gram-positive and gram-negative bacteria might be the only feasible option to reduce PICU mortality in these patients. In Hong Kong, a subtropical Asian city, none of the common respiratory viruses were associated with increased mortality or LOS in PICU.
Hon KL; Luk MP; Fung WM; Li CY; Yeung HL; Liu PK; Li S; Tsang KY; Li CK; Chan PK; Cheung KL; Leung TF; Koh PL
Journal of Critical Care
2017
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10.1016/j.jcrc.2016.09.019