Defining palliative opportunities in pediatric patients with bone and soft tissue tumors
adolescent; bone marrow; bone tumor; cancer patient; cancer recurrence; child; conference abstract; controlled study; death; disease exacerbation; do not resuscitate order; female; hospice; hospital admission; human; intensive care; major clinical study; male; palliative therapy; pediatric patient; phase 1 clinical trial; relapse; retrospective study; soft tissue tumor; solid malignant neoplasm; statistics
Background: Pediatric patients with cancer have many opportunities for increased primary or specialty palliative care (PC). This is particularly true for patients with solid tumors who often have higher symptom burden and worse outcomes. However, how many opportunities, when they occur, and if these opportunities are correlated with disease or demographic variables are unknown. Objective(s): To define palliative opportunities within pediatric cancer, and explore howthese occur in patients with solid tumors. Design/Method: A priori, nine palliative opportunity categories were defined (disease progression and relapse, hospital admission for symptoms or social concerns, intensive care or marrow transplant admission, phase 1 trial or hospice enrollment, DNR status). A single-center retrospective review was conducted on patients aged 0-17 years at diagnosis with bone/soft tissue tumors who died from 1/1/12- 11/30/17. Demographic, disease, and treatment data was collected, and descriptive statistics were performed. Timing of opportunities was evaluated over quartiles from diagnosis to death. Result(s): Patients (n = 60) had a mean of nine (SD = 4) palliative opportunities. Number or type of opportunities did not differ by primary diagnosis or demographic variables. PC consulted on 18 patients (30%) a median of 14.0 months (IQR 25.0) after diagnosis, and 2.6 months (IQR 11.5) prior to death. Likelihood of PC consult did not differ by diagnosis or total opportunities. The opportunities that preceded PC consultwere progression/relapse (9/18), escalated hospital level of care (4/18), symptom admission (3/18), and end-oflife concerns (2/18). Hospicewas involved for 72% of patients. The majority of opportunities occurred in the last quartile of the disease course (median 5.0, IQR 5.0). Conclusion(s): Patients with solid tumors incur many events warranting psychosocial or palliative support, which increase toward the end-of-life. Mean reported opportunities is likely a minimum due to stringent collection methods. No palliative opportunity or demographic variable was associated with PC consultation. Defining palliative opportunities provides an additional framework to assess the disease trajectory for patients suffering from oncologic diseases. Additional work is needed to further refine what qualifies as a palliative opportunity, how to fully capture opportunities, and how those may differ across different cancers.
Ebelhar J; Allen K; Wasilewski-Masker K; Brock K
Pediatric Blood and Cancer
2019
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/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</a>
Pediatric Resident Experience Caring for Children at the End of Life in a Children's Hospital
death; article; child; female; human; major clinical study; male; palliative therapy; retrospective study; controlled study; terminal care; resuscitation; education; medical record review; statistics; burnout; drug withdrawal; Burnout; End-of-Life Care; life sustaining treatment; Palliative Care; postgraduate student; resident; Resident Education
OBJECTIVES: Pediatric residents are expected to be competent in end of life (EOL) care. We aimed to quantify pediatric resident exposure to patient deaths, and the context of these exposures. METHOD(S): Retrospective chart review of all deceased patients at one children's hospital over three years collected patient demographics, time and location of death. Mode of death was determined after chart review. Each death was cross-referenced with pediatric resident call schedules to determine residents involved within 48 hours of death. Descriptive statistics are presented. RESULT(S): Of 579 patients who died during the study period, 46% had resident involvement. Most deaths occurred in the NICU (30% of all deaths) however, resident exposure to EOL care most commonly occurred in the PICU (52% of resident exposures) and were after withdrawals of life-sustaining therapy (41%), followed by non-escalation (31%) and failed resuscitation (15%). During their post-graduate year (PGY)-1, <1% of residents encountered a patient death. During PGY-2 and PGY-3, 96% and 78%, respectively, of residents encountered at least one death. During PGY-2, residents encountered a mean of 3.5 patient deaths (range 0-12); during PGY-3, residents encountered a mean of 1.4 deaths (range 0-5). Residents observed for their full 3-year residency encountered a mean of 5.6 deaths (range 2-10). CONCLUSION(S): Pediatric residents have limited but variable exposure to EOL care, with most exposures in the ICU after withdrawal of life-sustaining technology. Educators should consider how to optimize EOL education with limited clinical exposure, and design resident support and education with these variable exposures in mind. Copyright © 2019. Published by Elsevier Inc.
Trowbridge A; Bamat T; Griffis H; McConathey E; Feudtner C; Walter J K
Academic pediatrics.
2019
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.acap.2019.07.008" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2019.07.008</a>
Decision-making at the limit of viability: The Austrian neonatal choice context
article; human; palliative therapy; controlled study; shared decision making; systematic review; nervous system malformation; newborn; statistics; Austria; Choice context; Communication strategies; Decision-making; ethicist; framing bias; head; high income country; Limit of viability; neonatologist; neonatology; Neonatology; nicu; pregnancy; prematurity; semi structured interview
Background: We aimed to explore the shared decision-making context at the limit of viability (weeks 22-25 of gestation) through analyzing neonatologist's communication strategies with parents and their possible impact on survival and neurodevelopmental impairment (NDI) outcomes. Method(s): A mixed methods approach was applied where a systematic literature search and in-depth semi-structured interviews with five heads of neonatology departments and one clinical ethicist from the Austrian context were integrated into a literature review. The aim was to identify decision practice models and the choice context specific to Austria. Result(s): Professional biases, parental understanding, and the process of information giving were identified as aspects possibly influencing survival and NDI outcomes. Institutions create self-fulfilling prophecies by recommending intensive/palliative care based upon their institutional statistics, yet those vary considerably among high-income countries. Labelling an extremely preterm (EP) infant by the gestational week was shown to skew the estimates for survival while the process of information giving was shown to be subject to framing effect and other cognitive biases. Conclusion(s): Communication strategies of choice options to parents may have an impact on the way parents decide and hence also on the outcomes of EP infants. Copyright � 2019 The Author(s).
Stanak M; Hawlik K
BMC Pediatrics
2019
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/10.1186/s12887-019-1569-5" target="_blank" rel="noreferrer noopener">10.1186/s12887-019-1569-5</a>
Differences in Advance Care Planning and Circumstances of Death for Pediatric Patients Who Do and Do Not Receive Palliative Care Consults: A Single-Center Retrospective Review of All Pediatric Deaths from 2012 to 2016
article; child; female; human; major clinical study; male; controlled study; hospice; medical record review; do not resuscitate order; palliative therapy; advance care planning; life sustaining treatment; pediatric patient; physician; retrospective study; time of death; statistics; tertiary care center
Background: Growing evidence suggests that pediatric palliative care (PPC) teams influence the care received by children and young adults with chronic, life-limiting illnesses. Little is known about how PPC involvement affects advance care planning (ACP) and circumstances of death in pediatric populations with a wide range of diagnoses. Objective: To determine the relationship between PPC involvement, ACP, and circumstances of death for pediatric patients. Design: A retrospective chart review of 558 pediatric patients who died between January 1, 2012 and December 31, 2016 was conducted. Descriptive statistics were used to characterize the sample. A multivariable logistic regression was used to obtain associations between PPC involvement and ACP. Setting: Large, multidisciplinary tertiary care center in a rural state. Measurements: Data abstracted for each patient included the following: demographic information, diagnosis, location of primary unit, hospice involvement, goals of care (GOC), code status, Physician Orders for Life-Sustaining Treatment (POLST) completion, and location of death. Results: Patients with PPC involvement were more likely to have had ACP addressed before death. After adjusting for covariates in the model, patients with PPC were more likely to have their GOC documented (odds ratio [OR] = 96.93), completion of POLST (OR = 24.06), do-not-resuscitate code status (OR = 7.71), and hospice involvement at the time of death (OR = 11.70) compared with those who did not receive PPC. Conclusions: Pediatric patients are more likely to have ACP addressed if they have PPC involvement. Patients with chronic complex conditions are most likely to receive palliative care.
Harmoney K; Mobley EM; Gilbertson-White S; Brogden NK; Benson RJ
Journal of Palliative Medicine
2019
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/10.1089/jpm.2019.0111" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0111</a>
The use of a theatre workshop in developing effective communication in paediatric end of life care
child; human; terminal care; statistics; article; perception; quantitative analysis; bereavement support; communication skill; convenience sample; human experiment; questionnaire; clinical practice; registration; nursing student; learning; teaching
Being able to communicate effectively is an essential skill for all nurses. Communication in paediatric end of life care can be challenging for both the student and lecturer as it is a rare experience and challenging to teach. Innovative approaches to teaching communication skills such as role play, simulation and drama have been used; however there is a dearth of literature examining the use of drama in this specialist context. The aim of this study was to explore the effectiveness of a novel workshop in teaching transferable knowledge and skills in palliative, end of life and bereavement care communication to a convenience sample of first year pre-registration nursing students undertaking clinical skills training at a UK university. Qualitative and quantitative data were obtained from pre and post intervention questionnaires exploring student's perception of communication skills. Qualitative data were analysed thematically and quantitative data presented as standard descriptive statistics. The novel communication workshop facilitated students' exploration of how good and poor communication looks and feels and introduced aids to inform communication in clinical practice. Exposure to different learning approaches provided opportunities to both gain confidence in engaging in new learning activities and develop knowledge and skills through purposeful engagement.
Neilson S J; Reeves A
Nurse Education in Practice
2019
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.nepr.2019.02.014" target="_blank" rel="noreferrer noopener">10.1016/j.nepr.2019.02.014</a>
Access to Pediatric Palliative Care in the Neonatal Intensive Care Unit by Minorities and Rural-Dwellers in the Deep South: Patterns of Care from 2009-2017 (S816)
infant; hospice; mortality; Mississippi; Alabama; palliative therapy; major clinical study; retrospective study; Caucasian; neonatal intensive care unit; prematurity; time of death; conference abstract; medical record review; human; child; female; male; controlled study; hospitalization; resuscitation; statistics; medicaid; data analysis software; Louisiana; African American; hospitalized infant; travel
Objectives: 1. Describe patterns of pediatric palliative care and care disparities in neonatal intensive care unit (NICU) patients and families hospitalized in the Deep South (Alabama, Louisiana, and Mississippi). 2. Describe implications for practice related to current trends of pediatric palliative care use in the NICU and implications for future research. Original Research Background: Pediatric mortality is the highest in the first year of life. In 2013, 23,446 infants died in the U.S. Access to timely pediatric palliative care (PPC) services are limited for seriously ill infants and their families in the U. S. Deep South. Patterns of PPC in the neonatal intensive care unit (NICU) and the extent of PPC disparities in the Deep South are unknown. Research Objectives: Examine racial and geographical differences in pediatric palliative care (PPC) consultation for seriously ill infants in the neonatal intensive care unit.
Currie E; Wolfe J; Boss R; Ejem D; Perna S; Dionne-Odom J; Buckingham S; McKillip K; Bakitas M
Journal of Pain and Symptom Management
2019
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.jpainsymman.2018.12.269" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.269</a>
Social worker and chaplain activities with parents of critically ill children with cancer
pediatric intensive care unit; content analysis; mortality; cancer patient; clergy; critically ill patient; social worker; human; child; female; male; interview; clinical article; palliative therapy; statistics; self care; audio recording; cancer stem cell; human cell
Learning Objectives: Social workers (SWs) and chaplains (Cs) support families of PICU cancer patients. Few data describe the activities and impact of SWs and Cs (SWs/Cs) in the PICU. This study examined the activities of SWs/Cs caring for PICU cancer or stem cell transplant (hereafter 'cancer') patients, and parents' report about their experiences with SWs/Cs. Methods: Parents of complicated PICU cancer patients (expected PICU stay > 72hours, palliative care involvement, a previous PICU admission, or a pediatric index of mortality score >=4) completed a survey at PICU admission and discharge. SWs/Cs caring for these families were invited to participate by audio recording information about their family encounters (who was present, the kinds of supports provided, and the discussion topics) and/or completing an audio recorded interview after the patient's PICU discharge. Descriptive statistics were used to analyze survey data. Recordings were analyzed using content analysis. Results: 24 parents of 18 patients provided complete survey data. Of the 67% (16/24) of parents who indicated they had met with a SW, 94% (15/16) described the SW as helpful and 81% (13/15) would ask to speak with a SW again. Of the 75% (18/24) of parents who indicated they had met with a C, 72% (13/18) described the C as helpful and 94% (17/18) would ask to speak with a C again. 3 SWs of 7 patients and 2 chaplains of 13 patients were interviewed. 3 SWs and 3 Cs submitted recordings about 34 encounters with families of 9 patients. Categories of activities included: assessing parent needs and wishes; providing emotional support; providing faith-based support; providing logistical support (e.g. obtaining meal tickets or parking passes); supporting parent self-care; and supporting parent communication with the healthcare team. Conclusions: Most parents reported positive experiences with SWs/Cs. Not all parents met with a SW or C during their child's PICU admission. SWs/Cs provided emotional, spiritual, practical, and communication support in the PICU. Future work will identify barriers and facilitators to efforts by SWs/Cs caring for PICU cancer patients and examine the impact of SW/C care on parent and patient outcomes.
Lentini N; Martinez E; Arenson M; Heap N; Michelson K
Critical Care Medicine
2018
<a href="http://doi.org/%2010.1097/01.ccm.0000528879.00148.5a" target="_blank" rel="noreferrer noopener">10.1097/01.ccm.0000528879.00148.5a</a>
Neonatal Palliative Care in the United States Deep South: Exploration of Patterns of Care and Health Disparities
infant; newborn; Mississippi; terminal care; palliative therapy; major clinical study; neonatal intensive care unit; conference abstract; medical record review; human; child; female; male; controlled study; resuscitation; statistics; chi square test; Alabama; health disparity; Louisiana; race
Background: In 2013, 23,446 infants died in the U.S.. For infants hospitalized in the neonatal intensive care unit (NICU), advances in medicine have prolonged the lives of many infants who would not have previously survived, resulting in complex clinical scenarios that would benefit from the integration of pediatric palliative care (PPC). PPC is an interdisciplinary specialty that aims to provide the best possible quality of life for seriously ill infants and their families and involves comprehensive treatment of suffering. However, PPC is often underutilized in the NICU, integrated too late in the illness for the patient and family to fully benefit from PPC, or avoided completely. Access to palliative care in the U.S. varies across regions, with limited access to PPC in the Deep South. However, patterns of neonatal palliative care and the extent of disparities within neonatal PPC throughout the Deep South is unknown.
Currie E; Boss R; Wolfe J; Dionne-Odom JN; Ejem D; Bakitas M
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.417" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.417</a>
Challenges in assessing the need for beds in palliative care-The example of inpatient hospice care for children, adolescents and young adults
human; child; female; male; palliative therapy; diagnosis; death; Likert scale; psychosocial care; adult; home care; major clinical study; conference abstract; young adult; artificial ventilation; Germany; occupation; semi structured interview; long term care; resident; quantitative analysis; disabled person; funding; hospital patient; mortality; statistics; prevalence; hospice care; calculation; length of stay; politics
Background: Inpatient hospice care (IHC) for adults in Germany is used in the last weeks of life. Children, adolescents and young adults (ACA) with life-limiting diseases are entitled to 28 days/year of IHC during their lifetime. We explored various data to assess the need for IHC for ACA in North Rhine-Westphalia (NRW; 17.6 million inhabitants). Methods: Quantitative: All local hospices (n=5; 52 beds) and the single palliative care unit (PCU) for ACA were asked to contribute data on service provision, e.g. patient numbers and characteristics, occupation rate (OcR), length of stay. All local specialist palliative home care teams (n=6) (SAPV) for ACA were asked to estimate the percentage of ACA for whom they arranged IHC and in which timely manner (6-point Likert scale). Qualitative semi-structured interviews (hospices; SAPV; PCU) covering aspects such as access, barriers to access, needs coverage, impact of newly implemented SAPV on need, unmet demand for other services, funding politics and networking. Further data (reference year 2015): a) mortality statistics-% of all ACA in NRW dying from cancer (< 20 years)/non-cancer diseases according to the 4 ACT disease groups (< 25 years); b) prevalence estimates. Results: The 4 responding hospices had cared for 81-127 patients; average stay: 8-10 days, OcR: 60-90%. Cancer accounted for 1-20% of admissions, severe multi-handicapped ACA were 29-80%, 0-15% had no clear diagnosis. Hospices, SAPV and PCU teams saw no need for further hospice beds for ACA in NRW. They reported a lack of short and long-term care facilities for ACA in need of intensive medical care (and/or invasive ventilation) as well as of ambulatory psychosocial care and care management. Of the 1383 deaths (0-24 years) 47.1% were >1 year old, 62.3% of those < 20 years and 33.4% of those from 20-24 years had diseases according to the ACT groups and were probably in need of IHC. Different calculation models for prevalence will be discussed. Conclusion: Estimating the need for hospice beds for ACA remains difficult for various reasons: a) lack of valid prevalence statistics of relevant diseases, b) mortality statistics underestimate palliative care need, c) data protection regulations prohibit data exchange between hospices, d) local data do not capture the fact that residents from all German States are entitled to use IHC in NRW, and e) therefore an estimation would have to triangulate data from all relevant services for ACA across Germany.
Jaspers B; Jansky M; Nauck F
Palliative Medicine
2018
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/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</a>
Identifying the Types of Support Needed by Interprofessional Teams Providing Pediatric End-of-Life Care: A Thematic Analysis
death; terminal care; thematic analysis; article; child; education; female; human; human relation; institutional care; major clinical study; male; staff; statistics; United States; work environment
Background: Despite the number of interprofessional team members caring for children at the end of life, little evidence exists on how institutions can support their staff in providing care in these situations. Objective: We sought to evaluate which aspects of the hospital work environment were most helpful for multidisciplinary team members who care for patients at the end of life and identify areas for improvement to better address staff needs. Design: Qualitative thematic analysis was completed of free-text comments from a survey distributed to interprofessional staff members involved in the care of a recently deceased pediatric patient. A total of 2701 surveys were sent; 890 completed. Free-text responses were provided by 306 interprofessional team members. Setting/Subjects: Interprofessional team members involved in the care of a child who died at a 348 bed academic children's hospital in the Midwestern United States. Measurements: Realist thematic analysis of free-text responses was completed in Dedoose using a deductive and inductive approach with line-by-line coding. Descriptive statistics of demographic information was completed using Excel. Results: Thematic analysis of the 306 free-text responses identified three main support-related themes. Interprofessional team members desire to have (1) support through educational efforts such as workshops, (2) support from colleagues, and (3) support through institutional practices. Conclusions: Providers who participate in end-of-life work benefit from ongoing support through education, interpersonal relationships, and institutional practices. Addressing these areas from an interprofessional perspective enables staff to provide the optimal care for patients, patients' families, and themselves.
Riotte CO; Kukora S K; Keefer P M; Firn J I
Journal of Palliative Medicine
2018
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/10.1089/jpm.2017.0331" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0331</a>
Neurological palliative care in children
palliative therapy; adolescent; Adult; Child; chromosome aberration; Controlled Study; Female; Home Care; hospice; Human; Icd-10; infant; major clinical study; Male; metabolic disorder; mortality; neoplasm; nervous system malformation; neurology; preschool child; retrospective study; Statistics
Background: The Centre for Pediatric Palliative Care at the Medical Center of the University of Munich is one of the largest in Germany. Care is provided yearly to 90-100 children with advanced lifelimiting diseases living at home (at a distance of up to 150 km from the Center) and since 2016 also on a dedicated 8-beds palliative care inpatient unit, the first at a German University Hospital. Objective: Clinical experience suggests an important role of neurological disorders and neurological symptoms in pediatric palliative care. Patients and Methods/Material and Methods: We conducted a retrospective survey of 212 patients (median age 5.7 years, interquartile range [IR] 10.9) followed between 2009-2015 by the specialized pediatric palliative home care (SPPHC) team of the Center. Results * The main ICD-10 groups were nervous system, congenital abnormalities, neoplasia and metabolic disease, reflecting the German mortality statistics for patients 1-20 years. * The cumulative duration of SPPHC was 3.5 months (IR: 7.7). * Seventy-five percent of patients (N=160/212) suffered from neurological problems including neuromuscular conditions (n=17, 8%). Primary neurologic diseases were present in 70 patients. Neurological involvement, often severe, was seen in 96% of patients with metabolic diseases (n=24/25), 60% of patients with congenital/ chromosomal abnormalities (n=39/65), and 53% of tumor patients (n=25/47). * Eighty-four percent of patients died at home, 12% in hospital and 4% in a hospice, with 96% dying at their preferred place. Conclusion This data shows the pivotal importance of neurological diseases and symptoms in pediatric palliative care. Child neurology expertise should therefore be an integral part of any pediatric palliative care team. More research is needed in this area.
2017
Fuhrer M
Journal Of The Neurological Sciences
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.jns.2017.08.093" target="_blank" rel="noreferrer">10.1016/j.jns.2017.08.093</a>
Neonatologist training to guide family decision making for critically ill infants
Humans; infant; United States; Critical Illness; Attitude of Health Personnel; Education; Questionnaires; Professional-Family Relations; Communication; Clinical Competence; Linear Models; Fellowships and Scholarships; Internet; Medical; decision making; infant; Newborn; Premature; Neonatology/education; Graduate; Nonparametric; Statistics
OBJECTIVES: To assess neonatology fellow training in guiding family decision making for high-risk newborns and in several critical communication skills for physicians in these scenarios. DESIGN: A Web-based national survey. SETTING: Neonatal-perinatal training programs in the United States. PARTICIPANTS: Graduating fellows in their final month of fellowship. MAIN OUTCOME MEASURES: Fellows' perceived training and preparedness to communicate with families about decision making. RESULTS: The response rate was 72%, representing 83% of accredited training programs. Fellows had a great deal of training in the medical management of extremely premature and dying infants. However, they reported much less training to communicate and make collaborative decisions with the families of these infants. More than 40% of fellows reported no communication training in the form of didactic sessions, role play, or simulated patient scenarios and no clinical communication skills training in the form of supervision and feedback of fellow-led family meetings. Fellows felt least trained to discuss palliative care, families' religious and spiritual needs, and managing conflicts of opinion between families and staff or among staff. Fellows perceived communication skills training to be of a higher priority to them than to faculty, and 93% of fellows feel that training in this area should be improved. CONCLUSIONS: Graduating neonatology fellows are highly trained in the technical skills necessary to care for critically ill and dying neonates but are inadequately trained in the communication skills that families identify as critically important when facing end-of-life decisions.
2009
Boss RD; Hutton N; Donohue PK; Arnold RM
Archives Of Pediatrics & Adolescent Medicine
2009
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Journal Article
<a href="http://doi.org/10.1001/archpediatrics.2009.155" target="_blank" rel="noreferrer">10.1001/archpediatrics.2009.155</a>
Childhood idiopathic thrombocytopenic purpura in the Nordic countries: epidemiology and predictors of chronic disease
Child; Female; Humans; infant; Male; Prognosis; Prospective Studies; Risk Factors; Incidence; adolescent; Preschool; infant; Newborn; Nonparametric; Statistics; Purpura; Thrombocytopenic; Chronic Disease/epidemiology; Finland/epidemiology; Scandinavia/epidemiology; Acute Disease/epidemiology; Hemorrhage/epidemiology/etiology; Iceland/epidemiology; Idiopathic/complications/diagnosis/epidemiology
AIM: To describe the epidemiology of idiopathic thrombocytopenic purpura (ITP) in the Nordic countries, to define clinical subgroups and to investigate factors predicting chronic disease. METHODS: A prospective registration was done from 1998 to 2000, including all children with newly diagnosed ITP aged 0-14 y and at least one platelet count <30 x 10(9)/l. RESULTS: 506 children were registered and 423 followed for 6 mo. The incidence was 4.8/10(5) per year. Most children were aged 0-7 y (78%), with a predominance of boys, while patients aged 8-14 y had equal representation of the two sexes. There were seasonal variations determined by variations in postinfectious cases with sudden onset. The platelet count was <10 x 10(9)/l in 58%, but bleeding manifestations were mild or moderate in 97%. The insidious form (symptoms for more than 2 wk) was more frequent in older children and girls, showed little seasonal variation, had milder manifestations and ran a chronic course in more than half the cases. Intracranial haemorrhages did not occur in the first 6 mo after diagnosis. Chronic ITP developed in 25%. The strongest predictor of chronic disease was insidious onset of symptoms (OR 5.97). CONCLUSION: In the Nordic countries, ITP mainly affects children aged 0-7 y, with a winter bulk of postinfectious cases superimposed on a steady occurrence of non-infectious cases. Clinically, it may be useful to distinguish between children with sudden versus insidious onset of symptoms rather than between different age groups.
2005
Zeller B; Rajantie J; Hedlund-Treutiger I; Tedgard U; Wesenberg F; Jonsson OG; Henter JI; NOPHO ITP
Acta Paediatrica
2005
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Journal Article
<a href="http://doi.org/10.1111/j.1651-2227.2005.tb01887.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.2005.tb01887.x</a>
"The worst journey of our lives": parents' experiences of a specialised paediatric retrieval service
Child; Humans; Intensive Care Units; Pediatric; retrospective studies; Nonparametric; Statistics; ICU Decision Making; Parents/psychology; London; Consumer Satisfaction/statistics & numerical data; Transportation of Patients/standards
In this retrospective study, a sample of 233 parents were surveyed, by means of a postal questionnaire, about their experience of a specialised paediatric retrieval service (median time interval after child's retrieval=10 months). Although all parents were routinely provided with written information about the retrieval service, only 46% remember receiving it. Also, although generally high, satisfaction ratings relating to the period of the child's transit were significantly lower (P<0.005) than those relating to the other stages of the transfer. Two main reasons were given by parents for their dissatisfaction: distress at being separated from their critically ill child and logistic problems locating and parking at the new hospital. Implications for future service provision are considered.
2003
Colville G; Orr F; Gracey D
Intensive and Critical Care Nursing
2003
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Journal Article
<a href="http://doi.org/10.1016/s0964-3397(03)00022-3" target="_blank" rel="noreferrer">10.1016/s0964-3397(03)00022-3</a>
Physical therapy and cognitive-behavioral treatment for complex regional pain syndromes
Child; Female; Humans; Male; Prospective Studies; adolescent; P.H.S.; Research Support; U.S. Gov't; Nonparametric; Statistics; Cognitive Therapy; Complex Regional Pain Syndromes/psychology/rehabilitation; Physical Therapy Modalities
Complex regional pain syndromes (CRPS; type 1, reflex sympathetic dystrophy, and type 2, causalgia) involve persistent pain, allodynia, and vasomotor signs. We conducted a prospective, randomized, single-blind trial of physical therapy (PT) and cognitive-behavioral treatment for children and adolescents with CRPS. Children 8 to 17 years of age (n = 28) were randomly assigned to either group A (PT once per week for 6 weeks) or group B (PT 3 times per week for 6 weeks). Both groups received 6 sessions of cognitive-behavioral treatment. Assessments of pain and function were repeated at two follow-up time periods. Outcomes were compared at the three time points through the use of parametric or nonparametric analysis of variance and post hoc tests. All five measures of pain and function improved significantly in both groups after treatment, with sustained benefit evident in the majority of patients at long-term follow-up. Recurrent episodes were reported in 50% of patients, and 10 patients eventually received sympathetic blockade. Most children with CRPS showed reduced pain and improved function with a noninvasive rehabilitative treatment approach. Long-term functional outcomes were also very good.
2002
Lee BH; Scharff L; Sethna NF; McCarthy CF; Scott-Sutherland J; Shea AM; Sullivan P; Meier P; Zurakowski D; Masek BJ; Berde CB
The Journal Of Pediatrics
2002
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/10.1067/mpd.2002.124380" target="_blank" rel="noreferrer">10.1067/mpd.2002.124380</a>
Decreased proopiomelanocortin mRNA in lymphocytes of chronic alcoholics after intravenous human corticotropin releasing factor injection
Female; Humans; Male; Adult; Aged; Middle Aged; Biomarkers of Pain; Nonparametric; Statistics; RNA; Corticotropin-Releasing Hormone/pharmacology; Alcoholism/blood/metabolism; Lymphocytes/drug effects/metabolism; Messenger/biosynthesis/genetics; Pro-Opiomelanocortin/biosynthesis/genetics
BACKGROUND: Alcohol abuse may involve an altered neuroendocrine response that mediates lymphocyte-derived proopiomelanocortin (POMC) production and inflammation. We investigated POMC messenger RNA (mRNA) expression in human lymphocytes ex vivo and their relation to plasma ACTH and immunoreactive beta-endorphin (IR-beta-EP) after intravenous injection of human corticotropin releasing factor (hCRF) in chronic alcoholics (n = 12) and nonalcoholics (n = 12) before surgery. Lipopolysaccharide-stimulated interleukin (IL)-1 receptor antagonist (IL-1 Ra) as a marker for chronic inflammation was determined. METHODS: Chronic alcohol abuse was diagnosed according to DSM-IV criteria and alcohol consumption >60 g/day. A reverse transcription-polymerase chain reaction method with total RNA and subsequent solid phase minisequencing was used to quantify lymphocytic POMC mRNA after intravenous hCRF injection. Plasma ACTH, cortisol, and lipopolysaccharide-stimulated IL-1 Ra of monocytes were measured by enzyme-linked immunosorbent assay, and plasma IR-beta-EP was measured by using radioimmunoassay. RESULTS: Baseline values of POMC mRNA content in lymphocytes and IL-1 Ra of chronic alcoholics were significantly increased compared with nonalcoholics (p < 0.01). Thirty minutes after intravenous hCRF injection, a significant increase of lymphocytic POMC mRNA was measured (p < 0.05) in nonalcoholics, whereas in chronic alcoholics a significant decrease was observed (p < 0.05). CONCLUSIONS: Chronic alcoholic patients had an altered neuroendocrine immune axis before intravenous hCRF administration and were not able to adjust to intravenous CRF injection by increasing lymphocytic POMC mRNA expression.
2003
Rosenberger P; Muhlbauer E; Weissmuller T; Rommelspacher H; Sinha P; Wernecke KD; Finckh U; Rettig J; Kox WJ; Spies CD
Alcoholism, Clinical And Experimental Research
2003
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Journal Article
<a href="http://doi.org/10.1097/01.ALC.0000095636.44770.55" target="_blank" rel="noreferrer">10.1097/01.ALC.0000095636.44770.55</a>
Decision making and satisfaction with care in the pediatric intensive care unit: findings from a controlled clinical trial
Child; Female; Humans; Male; Intensive Care Units; Prospective Studies; Professional-Family Relations; Boston; Life Support Care; Conflict (Psychology); Consumer Satisfaction; Counseling; Pediatric; decision making; Nonparametric; Statistics; ICU Decision Making
OBJECTIVE: To facilitate critical decision making and improve satisfaction with care among families of patients in a pediatric intensive care unit. DESIGN: Prospective observational study followed by a nonrandomized controlled trial of a clinical intervention to identify conflicts and facilitate communication between families and the clinical team. SETTING: The pediatric intensive care unit of a Boston teaching hospital. PATIENTS: A total of 127 patients receiving care in the pediatric intensive care unit in 1998-1999 and their families. INTERVENTIONS: Interviews were conducted with surrogates and decisionally capable older children concerning the adequacy of information provided, understanding, communication, and perceived decisional conflicts. Findings were relayed to the clinical team, who then developed tailored follow-up recommendations. MEASUREMENTS AND MAIN RESULTS: A survey administered to surrogates at baseline and day 7 or intensive care unit discharge measured satisfaction with care. Information on patient acuity and hospital stay were extracted from medical records and hospital databases. Wilcoxon rank-sum tests and incidence rate comparisons were used to assess the impact of the intervention on satisfaction and sentinel decision making, respectively. Incidence rates of care plan decision making, including decisions to adopt a comfort-care-only plan and decisions to forego resuscitation, were lower among families who received the intervention. The intervention did not significantly affect satisfaction with care. CONCLUSIONS: Prospectively screening for and intervening to mitigate potential conflict did not increase decision making or parental satisfaction with the care provided in this pediatric intensive care unit.
2004
Mello MM; Burns JP; Truog RD; Studdert DM; Puopolo AL; Brennan T
Pediatric Critical Care Medicine
2004
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Journal Article
<a href="http://doi.org/10.1097/01.PCC.0000102413.32891.E5" target="_blank" rel="noreferrer">10.1097/01.PCC.0000102413.32891.E5</a>
Congenital neurodevelopmental diagnoses and an intensive care unit: defining a population
Child; Female; Humans; Male; Intensive Care Units; Cohort Studies; Critical Illness; Hospitals; Chi-Square Distribution; Pediatric; adolescent; Preschool; infant; Chronic disease; Nonparametric; Statistics; ICU Decision Making; Pediatric/statistics & numerical data; Length of Stay/statistics & numerical data; Boston/epidemiology; Developmental Disabilities/classification/epidemiology
OBJECTIVE: To identify and describe the population of children with congenital or perinatally acquired neurodevelopmental diagnoses in a pediatric intensive care unit and to assess the nature and extent of their utilization of critical care resources. DESIGN: Twelve-month, inception cohort study. SETTING: Intensive care unit at an urban, tertiary care pediatric hospital. PATIENTS AND METHODS: All pediatric intensive care unit admissions were screened for preexisting neurodevelopmental diagnoses. Computerized and chart-based medical records were reviewed for demographic, clinical, and outcome data. RESULTS: A total of 309 children with congenital neurodevelopmental diagnoses accounted for 427 pediatric intensive care unit admissions. This represented 23% of the total 1,820 admissions in 1 yr. Trisomy 21 was the most identifiable developmental abnormality (n = 25, 8%). Eighty-five percent of the children were cared for at home before hospitalization. A total of 220 of the admissions (52%) demonstrated a preexisting technology dependence. Fewer children admitted from the home-care setting had tracheostomies or were ventilator dependent. The majority of admissions were scheduled surgical admissions (45%) or for management of acute respiratory illness (26%). Of the patients with preexisting tracheostomy, nonrespiratory conditions accounted for 70% of acute admitting diagnoses. Two hundred twenty-three of the admissions (52%) required noninvasive or transtracheal ventilatory support, yet the length of stay and mortality rate were consistent with those reported in other general pediatric intensive care unit populations. The average and median length of stay were 5.4 and 2.0 days, respectively. Mortality rate was 3%. Technology support needs at discharge increased significantly from admission for enterostomy support (p =.008) and mechanical ventilation (p =.008). CONCLUSIONS: Children with congenital or perinatally acquired neurodevelopmental diagnoses represented nearly one quarter of all pediatric intensive care unit admissions at a tertiary academic center. This population has substantial ongoing medical needs, requiring utilization of intensive care resources. More rigorous investigations are needed to determine the effect of this burgeoning population in pediatric critical care, to optimize their care, and to meet the comprehensive needs of their families.
2004
Graham RJ; Dumas HM; O'Brien JE; Burns JP
Pediatric Critical Care Medicine
2004
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Journal Article
<a href="http://doi.org/10.1097/01.pcc.0000128892.38431.2b" target="_blank" rel="noreferrer">10.1097/01.pcc.0000128892.38431.2b</a>
Activation of peripheral NMDA receptors contributes to human pain and rat afferent discharges evoked by injection of glutamate into the masseter muscle
Female; Humans; Male; Adult; Analysis of Variance; Animals; Double-Blind Method; Cross-Over Studies; Rats; Non-U.S. Gov't; Research Support; Nonparametric; Statistics; Dose-Response Relationship; Drug; Receptors; Sprague-Dawley; Afferent Pathways/drug effects/physiology; Glutamic Acid/pharmacology; Masseter Muscle/drug effects/physiology; N-Methyl-D-Aspartate/agonists/antagonists & inhibitors/metabolism; Pain/chemically induced/physiopathology
Peripheral N-methyl-d-aspartate (NMDA) receptors are found in deep tissues and may play a role in deep tissue pain. Injection of the endogenous NMDA receptor agonist glutamate into the masseter muscle excites deep craniofacial afferent fibers in rats and evokes pain in human subjects. It is not clear whether peripheral NMDA receptors play a role in these effects of glutamate. Accordingly, the effect of NMDA on afferent activity as well as the effect of locally administered NMDA receptor antagonists on glutamate-evoked afferent discharges in acutely anesthetized rats and muscle pain in human subjects was examined. Injection of NMDA into the masseter muscle evoked afferent discharges in a concentration-related manner. It was found that the NMDA receptor antagonists 2-amino-5-phosphonvalerate (APV, 10 mM), ketamine (10 mM), and dextromethorphan (40 mM) significantly decreased glutamate-evoked afferent discharges. The effects of APV and ketamine, but not dextromethorphan, were selective for glutamate-evoked afferent discharges and did not affect hypertonic saline-evoked afferent discharges. In human experiments, it was found that 10 mM ketamine decreased glutamate-evoked muscle pain but had no effect on hypertonic saline-evoked muscle pain. These results indicate that injection of glutamate into the masseter muscle evokes afferent discharges in rats and muscle pain in humans in part through activation of peripheral NMDA receptors. It is conceivable that activation of peripheral NMDA receptors may contribute to masticatory muscle pain and that peripherally acting NMDA receptor antagonists could prove to be effective analgesics for this type of pain.
2003
Cairns BE; Svensson P; Wang K; Hupfeld S; Graven-Nielsen T; Sessle BJ; Berde CB; Arendt-Nielsen L
Journal Of Neurophysiology
2003
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Journal Article
<a href="http://doi.org/10.1152/jn.00353.2003" target="_blank" rel="noreferrer">10.1152/jn.00353.2003</a>
Neuroanatomy of holoprosencephaly as predictor of function: beyond the face predicting the brain
Child; Female; Humans; Male; Adult; Prospective Studies; Magnetic Resonance Imaging; Linear Models; Chi-Square Distribution; Forecasting; adolescent; Preschool; infant; Q3 Literature Search; Nonparametric; Statistics; Tomography; Brain/pathology; X-Ray Computed; Face/pathology; Holoprosencephaly/pathology/physiopathology; Seizures/pathology/physiopathology
BACKGROUND: Despite advances in neuroimaging and molecular genetics of holoprosencephaly (HPE), the clinical spectrum of HPE has remained inadequately described. OBJECTIVE: To better characterize the clinical features of HPE and identify specific neuroanatomic abnormalities that may be useful predictors of neurodevelopmental function. METHODS: The authors evaluated 68 children with HPE in a multicenter, prospective study. Neuroimaging studies were assessed for the grade of HPE (lobar, semilobar, and alobar), the degree of nonseparation of the deep gray nuclei, and presence of dorsal cyst or cortical malformation. RESULTS: In general, the severity of clinical problems and neurologic dysfunctions correlated with the degree of hemispheric nonseparation (grade of HPE). Nearly three-quarters of the patients had endocrinopathies, with all having at least diabetes insipidus. The severity of endocrine abnormalities correlated with the degree of hypothalamic nonseparation (p = 0.029). Seizures occurred in approximately half of the children with HPE. The presence of cortical malformations was associated with difficult-to-control seizures. The presence and degree of dystonia correlated with the degree of nonseparation of the caudate and lentiform nuclei and the grade of HPE (p < 0.05). Hypotonia correlated with the grade of HPE (p < 0.05). Mobility, upper extremity function, and language correlated with the degree of nonseparation of the caudate, lentiform and thalamic nuclei, and grade of HPE (p < 0.01). CONCLUSIONS: Patients with HPE manifest a wide spectrum of clinical problems and neurologic dysfunction. The nature and severity of many of these problems can be predicted by specific neuroanatomic abnormalities found in HPE.
2002
Plawner LL; Delgado MR; Miller VS; Levey EB; Kinsman SL; Barkovich AJ; Simon EM; Clegg NJ; Sweet VT; Stashinko EE; Hahn JS
Neurology
2002
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Journal Article
<a href="http://doi.org/10.1212/wnl.59.7.1058" target="_blank" rel="noreferrer">10.1212/wnl.59.7.1058</a>
Relationship of illness severity and length of stay to functional outcomes in the pediatric intensive care unit: a multi-institutional study
Child; Humans; United States; Intensive Care Units; Cohort Studies; Logistic Models; Prospective Studies; Severity of Illness Index; Observer Variation; Nonparametric; Statistics; ICU Decision Making; Pediatric/statistics & numerical data; Length of Stay/statistics & numerical data; Outcome and Process Assessment (Health Care)/statistics & numerical data
OBJECTIVE: The purpose of this study was to establish relationships between illness severity, length of stay, and functional outcomes in the pediatric intensive care unit (PICU) by using multi-institutional data. We hypothesized that a positive relationship exists between functional outcome scores, severity of illness, and length of stay. DESIGN: The study used a prospective multicentered inception cohort design. SETTING: The study was conducted in 16 PICUs across the United States that were member institutions of the Pediatric Critical Care Study Group of the Society of Critical Care Medicine. PATIENTS: In total, 11,106 patients were assessed, representing all admissions to these intensive care units for 12 consecutive months. MEASUREMENTS: Functional outcomes were measured by the Pediatric Overall Performance Category (POPC) and Pediatric Cerebral Performance Category (PCPC) scales. Both scales were assessed at baseline and discharge from the PICU. Delta scores were formed by subtracting baseline scores from discharge scores. Other measurements included admission Pediatric Risk of Mortality scores, age, operative status, length of stay in the PICU, and diagnoses. Interrater reliability was assessed by using a set of ten standardized cases on two occasions 6 months apart. MAIN RESULTS: Baseline, discharge, and delta POPC and PCPC outcome scores were associated with length of stay in the PICU and with predicted risk of mortality (p < .01). Incorporation of baseline functional status in multivariate length of stay analyses improved measured fit. Mild baseline cerebral deficits in children were associated with 18% longer PICU stays after controlling for other patient and institutional characteristics. Moderate and severe baseline deficits for both the POPC and PCPC score predict increased length of stay of between 30% and 40%. On the standardized cases, interrater consensus was achieved on 82% of scores with agreement to within one neighboring class for 99.7% of scores. CONCLUSIONS: These data establish current relationships for the POPC and PCPC outcome scales based on multi-institutional data. The reported relationships can be used as reference values for evaluating clinical programs or for clinical outcomes research.
2000
Fiser DH; Tilford JM; Roberson PK
Critical Care Medicine
2000
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Journal Article
<a href="http://doi.org/10.1097/00003246-200004000-00043" target="_blank" rel="noreferrer">10.1097/00003246-200004000-00043</a>
Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity
Female; Humans; Male; Intensive Care Units; Prevalence; Logistic Models; Questionnaires; Prospective Studies; Euthanasia; Multivariate Analysis; Ethics; Medical; decision making; Family/psychology; Nonparametric; Statistics; Life Support Care/utilization; Passive; Critical Illness/therapy; Anxiety/epidemiology/etiology; Depressive Disorder/epidemiology/etiology; France/epidemiology
OBJECTIVE: Anxiety and depression may have a major impact on a person's ability to make decisions. Characterization of symptoms that reflect anxiety and depression in family members visiting intensive care patients should be of major relevance to the ethics of involving family members in decision-making, particularly about end-of-life issues. DESIGN: Prospective multicenter study. SETTING: Forty-three French intensive care units (37 adult and six pediatric); each unit included 15 patients admitted for longer than 2 days. PATIENTS: Six hundred thirty-seven patients and 920 family members. INTERVENTIONS: Intensive care unit characteristics and data on the patient and family members were collected. Family members completed the Hospital Anxiety and Depression Scale to allow evaluation of the prevalence and potential factors associated with symptoms of anxiety and depression. MEASUREMENTS AND MAIN RESULTS: Of 920 Hospital Anxiety and Depression Scale questionnaires that were completed by family members, all items were completed in 836 questionnaires, which formed the basis for this study. The prevalence of symptoms of anxiety and depression in family members was 69.1% and 35.4%, respectively. Symptoms of anxiety or depression were present in 72.7% of family members and 84% of spouses. Factors associated with symptoms of anxiety in a multivariate model included patient-related factors (absence of chronic disease), family-related factors (spouse, female gender, desire for professional psychological help, help being received by general practitioner), and caregiver-related factors (absence of regular physician and nurse meetings, absence of a room used only for meetings with family members). The multivariate model also identified three groups of factors associated with symptoms of depression: patient-related (age), family-related (spouse, female gender, not of French descent), and caregiver-related (no waiting room, perceived contradictions in the information provided by caregivers). CONCLUSIONS: More than two-thirds of family members visiting patients in the intensive care unit suffer from symptoms of anxiety or depression. Involvement of anxious or depressed family members in end-of-life decisions should be carefully discussed.
2001
Pochard F; Azoulay E; Chevret S; Lemaire F; Hubert P; Canoui P; Grassin M; Zittoun R; LeGall JR; Dhainaut JF; Schlemmer B; Group French FAMIREA
Critical Care Medicine
2001
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Journal Article
<a href="http://doi.org/10.1097/00003246-200110000-00007" target="_blank" rel="noreferrer">10.1097/00003246-200110000-00007</a>
Measurement of the validity of utility elicitations performed by computerized interview
Humans; Adult; Aged; Middle Aged; Choice Behavior; Patient Satisfaction; Reproducibility of Results; adolescent; Non-U.S. Gov't; P.H.S.; Research Support; U.S. Gov't; Nonparametric; Statistics; Akathisia; Drug-Induced/etiology; Antipsychotic Agents/adverse effects; Dyskinesia; Interviews/standards; Multimedia/standards; Parkinson Disease; Schizophrenia/drug therapy; Schizophrenic Psychology; Secondary/chemically induced
OBJECTIVES: The authors evaluate a measure of the validity of utility elicitations and study the potential effects of invalid elicitations on population utility values. METHODS: The authors used a computerized survey to describe and measure preferences for three common side-effects of anti-psychotic drugs (tardive dyskinesia [TD], akathesia [AKA], pseudo-parkinsonism). The authors compared the validity of elicitations in 41 healthy volunteers to 22 schizophrenic patients. Preferences were measured using visual analog scale (VAS), pair-wise comparison (PWC), and the Standard Gamble (SG) methods. To assess the validity of each groups' responses, the authors compared the consistency of subjects' rank-order of the desirability of states across methods of preferences assessment (CAMPA). RESULTS: All healthy volunteers and 82% of patients completed the computer survey; of these subjects, 97% of healthy volunteers and 70% of patients indicated they thought they understood the task required of them. However, only 78% of healthy subjects and 44% of patients had a consistent rank ordering of preferences among VAS and PWC ratings; only 80% and 61%, respectively, had a consistent rank ordering preferences among SG and PWC ratings. For two of the three health states, inconsistent subjects had statistically higher SG utilities (for TD, 0.94 versus 0.87, and for AKA 0.92 versus 0.86; P < 0.05). CONCLUSIONS: The CAMPA test can identify potentially invalid preference ratings. Potentially invalid preference ratings may bias the "population" utilities for health states.
1997
Lenert LA; Morss S; Goldstein MK; Bergen MR; Faustman WO; Garber AM
Medical Care
1997
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Journal Article
<a href="http://doi.org/10.1097/00005650-199709000-00004" target="_blank" rel="noreferrer">10.1097/00005650-199709000-00004</a>
Re-examining perceived ease of use and usefulness: a confirmatory factor analysis
Evaluation Studies; Models; Statistics; Theoretical
Adams et al. (1992) presented the results of 2 studies designed to replicate previous work by Davis (1989) regarding perceived usefulness, ease of use, and their influence on the usage of information technology. To measure the influence of usefulness and ease of use on reported levels of usage, Adams et al. employed structural equation modeling. This technique allows the researchers to analyze a set of latent constructs much like independent and dependent variables in regression analysis. Unfortunately, in this part of the analysis, less-than-satisfactory model fit was observed. Further, inconsistencies within and across the 2 studies regarding the strength of causal influence of Davis' constructs on usage seem to suggest that these relationships may be more complex than previously thought. It as suggested that further analysis of these scales be undertaken to better establish their measurement properties, underlying structure, and stability over various technologies. Such an analysis is presented to provide important information to researchers seeking to statistically test relationships among these variables through structural equation modeling.
1993
Segars A; Grover V
Management Information Systems Quarterly
1993
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Journal Article
<a href="http://doi.org/10.2307/249590" target="_blank" rel="noreferrer">10.2307/249590</a>
Population pharmacokinetics of oral morphine and its glucuronides in children receiving morphine as immediate-release liquid or sustained-release tablets for cancer pain
Child; Analgesics; Age Factors; Linear Models; Case-Control Studies; adolescent; Preschool; Non-U.S. Gov't; infant; Comparative Study; Nonparametric; Statistics; Dose-Response Relationship; Drug; Delayed-Action Preparations; Human; Support; Neoplasms/complications; Morphine Derivatives/administration & dosage/blood/pharmacokinetics; Morphine/administration & dosage/blood/pharmacokinetics; Opioid/administration & dosage/blood/pharmacokinetics; Pain/drug therapy/etiology
OBJECTIVES: (1) To determine the pharmacokinetics of morphine, morphine-6-glucuronide (M6G), and morphine-3-glucuronide (M3G) in children with cancer receiving morphine as immediate-release morphine liquid or sustained-release tablets. (2) To determine differences with age within the group and from adults. (3) To explore relationships between plasma concentration and pain measurements. STUDY DESIGN: Blood samples were collected and plasma analyzed by high-performance liquid chromatography with electrochemical and fluorescence detection. Population pharmacokinetic parameters were derived with the program P-PHARM. RESULTS: Forty children with a median age of 11.4 years (range 1.7 to 18.7 years) received a median dose of 1.4 mg/kg/d (range 0.4 to 24.6 mg/kg/d). A median of 4 blood samples per child was collected. Plasma clearance of morphine was 23.1 mL/min per kg body weight. The volume of distribution was 5.2 L/kg. Molar ratios of M3G/morphine, M6G/morphine, and M3G/M6G were 21.1, 4.7, and 4.2, respectively. Children 12 ng/mL in children with cancer pain unrelieved by mild to moderate strength analgesia.
1999
Hunt A; Joel S; Dick G; Goldman A
Journal Of Pediatrics
1999
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Journal Article
Statistics for social data analysis
Statistics; SOCIAL sciences
Knoke D; Bohrnstedt G
1994
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Book/Book Section
Palliative radiation therapy for pediatric patients: Parental perceptions
Perception; Analgesia; Brain; Breathing; Cancer Staging; Child; Comfort; Disease Course; Expectation; Female; Human; Institutional Review; Male; Palliative Therapy; Prevention; Prospective Study; Quality Of Life; Questionnaire; Radiotherapy; Spinal Cord Compression; Statistics
Purpose/Objective(s): Palliative radiation therapy (pRT) for pediatric cancer patients is often used to treat pain, neurologic symptoms, and other conditions from progressive cancer that affects quality of life. However, though the doses used are generally lower than those used for curative treatment, pRT may still introduce undesirable side effects. A parent's decision to pursue additional anti-cancer therapy towards the end of their child's life may be challenging, as the perceived risk-versus-benefit ratio may be altered depending on their knowledge and expectations for the pRT. As anti-cancer directed treatment continues to be offered, the line between curing and palliation may become blurred. The goal of this study was to explore parental perceptions of pRT with regards to its purpose and expected outcome. Purpose/Objective(s): Forty-five children referred for pRT were enrolled in a prospective institutional review board-approved study. At the time of initial consultation, parents were counseled regarding the indication for pRT and the expected outcomes of treatment. At one to three months after treatment completion, a questionnaire was given to parents to assess their understanding of the role of pRT for their child. They were asked to specify the reasons for pRT as well as their expectations of the treatment outcome. Descriptive statistics were used to analyze the results of the questionnaire. Results: The main indications for pRT in this cohort were pain (44%), spinal cord compression (3%), neurologic symptoms from brain mass (18%), leptomeningeal involvement (3%), asymptomatic radiologic progression (18%), and other indications (13%). When asked about the reasons for pRT in their child, parents reported the following: pain relief (51%), addressing new disease such as radiologic progression (40%), prevention of damage to spinal cord (11%), and help with breathing (2%). 49% listed additional reasons, including control of existing tumors or prevention of pain (as opposed to pain control). When asked about their expectations for the pRT, 76% of parents marked improvement in quality of life. An equal proportion (76%) also expected prolongation of their child's life. 53% included pain relief as one of their expectations. Interestingly, 40% of parents expected the pRT to also cure their child's malignant disease. Conclusion: Radiation therapy is an important modality in palliative care for children with end-stage cancer. Improved quality of life through pRT sometimes blurs the distinction between palliative and curative intent of the treatment. In this study, we found that a large proportion of parents perceived pRT to play a curative role for their child's malignancy, despite having been informed initially that the treatment was palliative. Thus, many parents seem to derive hope and comfort from having their child continue to receive some active treatment. Studies are ongoing to determine parents' assessment of whether pRT did achieve what they had hoped for their child.
Lee BKY; Apkon D; Wolfe J; Marcus KJ
International Journal Of Radiation Oncology Biology Physics
2017
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<a href="http://doi.org/10.1016/j.ijrobp.2017.06.208" target="_blank" rel="noreferrer">10.1016/j.ijrobp.2017.06.208</a>