Cultural Influences in Pediatric Cancer from Diagnosis to Cure/End of Life
Adaptation; Caregivers/px [psychology]; Cultural Characteristics; Neoplasms/px [psychology]; Patients/px [psychology]; Survivors/px [psychology]; Adolescent; Adult; Child; Humans; Infant; Middle Aged; Newborn; Preschool; Psychological
OBJECTIVE: To review the literature on cultural factors influencing clinical care and family management of pediatric cancer. METHODS: A literature review including 72 articles related to cultural issues in pediatric cancer was conducted. Information was organized around several clinically driven themes. RESULTS: Cultural factors influenced many aspects of the cancer experience including illness representations, reaction to diagnosis, illness disclosure patterns, complementary and alternative medicine use, management of medical procedures, coping strategies, and end of life issues. CONCLUSION: Increased awareness of cultural factors is needed to improve clinical care and reduce health disparities. Specific strategies to approach cultural differences are provided to enhance patient and family care from diagnosis to cure/end of life.
Gray WN; Szulczewski LJ; Regan SMP; Williams JA; Pai AL
Journal Of Pediatric Oncology Nursing
2014
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<a href="http://doi.org/10.1177/1043454214529022" target="_blank" rel="noreferrer noopener">10.1177/1043454214529022</a>
Feasibility of Conducting a Palliative Care Randomized Controlled Trial in Children With Advanced Cancer: Assessment of the PediQUEST Study
Neoplasms/th [therapy]; Palliative Care; Adolescent; Child; Feasibility Studies; Female; Humans; Longitudinal Studies; Male; Palliative Care/mt [methods]; Patient Dropouts; Patient Selection; Pilot Projects; Preschool; Terminal Care
CONTEXT: Pediatric palliative care randomized controlled trials (PPC-RCTs) are uncommon. OBJECTIVES: To evaluate the feasibility of conducting a PPC-RCT in pediatric cancer patients. METHODS: This was a cohort study embedded in the Pediatric Quality of Life and Evaluation of Symptoms Technology Study (NCT01838564). This multicenter PPC-RCT evaluated an electronic patient-reported outcomes system. Children aged two years and older, with advanced cancer, and potentially eligible for the study were included. Outcomes included: pre-inclusion attrition (patients not approached, refusals); post-inclusion attrition (drop-out, elimination, death, and intermittent attrition (IA; missing surveys) over nine months of follow-up); child/teenager self-report rates; and, reasons to enroll/participate. RESULTS: Over five years, of the 339 identified patients, 231 were eligible (in 22, we could not verify eligibility); 84 eligible patients were not approached and 43 declined participation. Patients not approached were more likely to die or have brain tumors. We enrolled 104 patients. Average enrollment rate was one patient per site per month; shortening follow-up from nine to three months (with optional re-enrollment) increased recruitment by 20%. A total of 87 patients completed the study (24 died) and 17 dropped out. Median IA was 41% in the first 20 weeks of follow-up and more than 60% in the eight weeks preceding death. Child/teenager self-report was 94%. Helping others, low burden procedures, incentives, and staff attitude were frequent reasons to enroll/participate. CONCLUSION: A PPC-RCT in children with advanced cancer was feasible, post-inclusion retention adequate; many families participated for altruistic reasons. Strategies that may further PPC-RCT feasibility include: increasing target population through large multicenter studies, approaching sicker patients, preventing exclusion of certain patient groups, and improving data collection at end of life. Copyright _ 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Dussel V; Orellana L; Soto N; Chen K; Ullrich C; Kang TI; Geyer JR; Feudtner C; Wolfe J
Journal Of Pain & Symptom Management
2015
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<a href="http://doi.org/10.1016/j.jpainsymman.2014.12.010" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2014.12.010</a>
Race does not influence do-not-resuscitate status or the number or timing of end-of-life care discussions at a pediatric oncology referral center
African Continental Ancestry Group; Cancer Care Facilities; Decision Making; European Continental Ancestry Group; Pediatrics; Resuscitation Orders; Terminal Care; Adolescent; Child; Female; Humans; Infant; Male; Medical Audit; Preschool; United States
BACKGROUND: End-of-life care (EOLC) discussions and decisions are common in pediatric oncology. Interracial differences have been identified in adult EOLC preferences, but the relation of race to EOLC in pediatric oncology has not been reported. We assessed whether race (white, black) was associated with the frequency of do-not-resuscitate (DNR) orders, the number and timing of EOLC discussions, or the timing of EOLC decisions among patients treated at our institution who died. METHODS: We reviewed the records of 380 patients who died between July 1, 2001 and February 28, 2005. Chi(2) and Wilcoxon rank-sum tests were used to test the association of race with the number and timing of EOLC discussions, the number of DNR changes, the timing of EOLC decisions (i.e., DNR order, hospice referral), and the presence of a DNR order at the time of death. These analyses were limited to the 345 patients who self-identified as black or white. RESULTS: We found no association between race and DNR status at the time of death (p = 0.57), the proportion of patients with DNR order changes (p = 0.82), the median time from DNR order to death (p = 0.51), the time from first EOLC discussion to DNR order (p = 0.12), the time from first EOLC discussion to death (p = 0.33), the proportion of patients who enrolled in hospice (p = 0.64), the time from hospice enrollment to death (p = 0.2) or the number of EOLC discussions before a DNR decision (p = 0.48). CONCLUSION: When equal access to specialized pediatric cancer care is provided, race is not a significant factor in the presence or timing of a DNR order, enrollment in or timing of enrollment in hospice, or the number or timing of EOLC discussions before death.
Baker JN; Rai S; Liu W; Srivastava K; Kane JR; Zawistowski CA; Burghen EA; Gattuso JS; West N; Althoff J; Funk A; Hinds PS
Journal Of Palliative Medicine
2009
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<a href="http://doi.org/10.1089/jpm.2008.0172" target="_blank" rel="noreferrer">10.1089/jpm.2008.0172</a>
The Outcome of Critically Ill Pediatric Cancer Patients Admitted to the Pediatric Intensive Care Unit in a Tertiary University Oncology Center in a Developing Country: A 5-Year Experience
Developing Countries; Intensive Care Units; Academic Medical Centers; Adolescent; Cancer Care Facilities; Child; Critical Illness; Female; Hematologic Neoplasms/complications/ Mortality/therapy; Humans; Infant; Male; Multiple Organ Failure/etiology; Pediatric; Preschool; Prognosis; Respiratory Insufficiency/etiology; Retrospective Studies; Sepsis/etiology; Tertiary Care Centers; Treatment Outcome
INTRODUCTION: Cancer remains a major cause of death in children, but recent advances in supportive care and progress in the use of chemotherapy have considerably improved the prognosis. The need for intensive care management in pediatric oncology patients is increasing. However, studies demonstrating their outcome in the literature are still deficient, especially in developing countries. Here, we aim to report our experience in managing patients admitted to the pediatric intensive care unit (PICU) at South Egypt Cancer Institute, a tertiary university oncology center in a developing country. PATIENTS AND METHODS: A review of all cancer patients admitted to the PICU at South Egypt Cancer Institute between January 2007 and December 2011 and an evaluation of prognostic factors that may correlate to their short-term outcome were performed. RESULTS: A total of 550 pediatric oncology patients were admitted to the PICU on 757 occasions. Hematological malignancies represented 73.6% of the cases. The median duration of PICU stay was 5 days. Sepsis and respiratory failure were the most frequent indications for PICU admission. The overall survival at the time of discharge from the PICU was 60%. Several factors were found to significantly affect the outcome of patients admitted to the PICU, including the underlying disease, the reason for admission, the intervention used, and the number of failing organs at the time of admission to the PICU. CONCLUSIONS: The prognosis of patients admitted to the PICU in developing countries is still behind those in developed ones. Late referral, especially of patients presenting with respiratory failure, sepsis, and multiorgan failure usually, requires urgent intervention with inotropic support, oxygen therapy, and mechanical ventilation and is significantly associated with poor outcomes, especially in patients with hematological malignancies.
Ali AM; Sayed HA; Mohammed MM
Journal Of Pediatric Hematology/oncology
2016
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<a href="http://doi.org/10.1097/mph.0000000000000523" target="_blank" rel="noreferrer">10.1097/mph.0000000000000523</a>
Cause of Death in Children With Mitochondrial Diseases
Age of Onset; cause of death; Child; Children; Female; Follow-Up Studies; Humans; Male; mitochondrial disease; Mitochondrial Diseases; Mitochondrial Diseases/ mortality; mortality; Only Child; Pediatric; Preschool; risk factor
BACKGROUND: We investigated the clinical characteristics that represent risk factors for death in pediatric patients with mitochondrial diseases. METHODS: The medical records of mitochondrial disease pediatric patients attended between 2006 and 2015 (n = 221) were reviewed for clinical characteristics, diagnosis, hospitalization, follow-up, survival, and cause of death. RESULTS: The global mortality rate in the cohort was 14% (average age at death, six years). By syndromic diagnosis, the mortality rates were as follows: Leigh syndrome, 17% (15 of 88); mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes, 50% (two of four); and nonspecific mitochondrial disease, 11% (14 of 129). Data regarding 31 patients (17 males) were included in the analysis of cause of death. The age at symptom onset, lead time to diagnosis, duration of illness, and duration of life were 1.8 +/- 2.0, 1.7 +/- 1.5, 4.3 +/- 2.7, and 6.1 +/- 2.9 years, respectively. The most common causes of death were sepsis, pneumonia, disseminated intravascular coagulation, and sudden unexpected death (55%, 42%, 29%, and 29%, respectively). Early death (age six years or younger) was associated with lesions in the thalamus, number of organs involved, and Leigh syndrome. CONCLUSIONS: Careful monitoring of the medical condition and early intervention are key to improving survival in pediatric patients with mitochondrial disease.
Eom S; Lee HN; Lee S; Kang HC; Lee JS; Kim HD; Lee YM
Pediatric Neurology
2017
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<a href="http://doi.org/10.1016/j.pediatrneurol.2016.10.006" target="_blank" rel="noreferrer">10.1016/j.pediatrneurol.2016.10.006</a>
The Need for a Shared Understanding: Domains of Care and Composition of Team in Pediatric Palliative Care Guidelines
Adolescence; Child; CINAHL Database; Health; Human; infant; In Infancy and Childhood; Nomenclature; Palliative Care; Practice Guidelines; Preschool; PsycINFO; PubMed; Reference Databases; Search Engines; spiritual care; systematic review
Conceptual confusion is a primary barrier to providing quality palliative care. This study aimed to analyze pediatric palliative care (PPC) guidelines from a conceptual perspective to facilitate a shared understanding of palliative care in pediatrics. Five online databases were searched systematically, in addition to a Google search. Analysis focused on the language used to determine the domains of PPC and on the composition of the PPC team. Guidelines express consensus on 4 core domains: physical, psychological, social, and spiritual care. However, conceptual vagueness exists with respect to the latter 3 because terminology is used inconsistently both within and across guidelines. An inconsistent use of terminology affects the quality of PPC nursing in various ways. Therefore, a shared understanding and unambiguous language must be envisaged. Furthermore, although guidelines agree on the most prominent team members, they do not clearly indicate how these occupational groups should collaborate.
Rost M; De Clercq E; Wangmo Tenzin; Elger BS
Journal Of Hospice & Palliative Nursing
2017
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<a href="http://doi.org/10.1097/NJH.0000000000000387" target="_blank" rel="noreferrer">10.1097/NJH.0000000000000387</a>
Supporting the family after the death of a child.
adolescent; Child; Humans; infant; Pediatrics; Parents; mortality; Chronic disease; Siblings; Professional-Family Relations; disabled children; Death; social support; Guidelines as Topic; Physician's Role; Counseling; Suicide; Preschool; Premature; AIM; IM; Grief; sibling bereavement; Sudden; Sudden Infant Death; parenting; Substance-Related Disorders; Guilt
The death of a child can have a devastating effect on the family. The pediatrician has an important role to play in supporting the parents and any siblings still in his or her practice after such a death. Pediatricians may be poorly prepared to provide this support. Also, because of the pain of confronting the grief of family members, they may be reluctant to become involved. This statement gives guidelines to help the pediatrician provide such support. It describes the grief reactions that can be expected in family members after the death of a child. Ways of supporting family members are suggested, and other helpful resources in the community are described. The goal of this guidance is to prevent outcomes that may impair the health and development of affected parents and children.
Wender E; HEALTH COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY
Pediatrics
2012
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Journal Article
<a href="http://doi.org/10.1542/peds.2012-2772" target="_blank" rel="noreferrer">10.1542/peds.2012-2772</a>
Rising national prevalence of life-limiting conditions in children in England.
Child; Female; Humans; infant; Male; Young Adult; Palliative Care; Adult; Prevalence; adolescent; Preschool; infant; Newborn; retrospective studies; England/epidemiology; Critical Illness/epidemiology; Terminally Ill/statistics & numerical data
BACKGROUND: Life-limiting conditions (LLCs) describe diseases with no reasonable hope of cure that will ultimately be fatal. For children with these diseases, palliative care services should be available but few data are available to estimate the burden of these conditions. METHODS: Children (0-19 years) with LLCs were identified within an English Hospital Episode Statistics dataset (2000/2001-2009/2010) by applying a customized coding framework of the International Classification of Diseases, 10th Revision, disease codes. Prevalence per 10 000 population (0-19 years) was calculated by age, diagnostic group, ethnicity, deprivation, and region for each year. RESULTS: The Hospital Episode Statistics extract contained 175 286 individuals with 1 or more LLCs of which congenital anomalies were the most common (31%). Prevalence increased over 10 years from 25 to 32 per 10 000 population. Prevalence in the South Asian (48 per 10 000); black (42 per 10 000); and Chinese, mixed, and "other" (31 per 10 000) populations were statistically significantly higher compared with the white population (27 per 10 000). Prevalence shows an inverse J-shaped relationship with 5 categories of deprivation, with the highest prevalence in the most deprived areas and the lowest in the second least deprived. CONCLUSIONS: In 2010, the prevalence of LLCs in children in England was double the previously reported estimates and had increased annually in all areas over the past decade. This clearly identifies an escalating need for specialist pediatric palliative care services. When planning services for these increasing needs, the excess prevalence in ethnic minority groups, especially in deprived areas, needs to be considered.
Fraser LK; Miller M; Hain R; Norman P; Aldridge J; McKinney PA; Parslow RC
Pediatrics
2012
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Journal Article
<a href="http://doi.org/10.1542/peds.2011-2846" target="_blank" rel="noreferrer">10.1542/peds.2011-2846</a>
A cohort study of children and young people with progressive neuromuscular disorders: clinical and demographic profiles and changing patterns of referral for palliative care
Child; Female; Humans; Male; Cohort Studies; Prevalence; Disease Progression; Multivariate Analysis; Poverty Areas; adolescent; Preschool; infant; retrospective studies; Palliative Care/statistics & numerical data; Disease Specific; Great Britain/epidemiology; Muscular Dystrophy; Duchenne/epidemiology/mortality; Neuromuscular Diseases/epidemiology/mortality; Referral and Consultation/trends; Spinal Muscular Atrophies of Childhood/epidemiology/mortality
BACKGROUND: Progressive neuromuscular disease in children is life limiting and these children and young people would benefit from palliative care services, but data are limited on the number and demography of these children. AIM: To describe the clinical and demographic profile of children referred to a Children's hospice in the UK with progressive neuromuscular disease. SETTING/PARTICIPANTS: All children and young people with progressive neuromuscular disorders referred to Martin House Children's Hospice between 1987 and 2010. DESIGN: Retrospective cohort study. RESULTS: 300 children with progressive neuromuscular disease were referred to the hospice. Seventy percent (210) of these children had Duchenne Muscular Dystrophy, 22% (67) had Spinal Muscular Atrophy (34 with Type I) and 8% had other neuromuscular diseases. Numbers of referrals have not significantly increased over the last 15 years, although an increasing number come from a South Asian background (from 4% to 32%) and a higher number of children have conditions other than Duchenne Muscular Dystrophy. A total of 55.3% (166) of all referrals came from areas of the highest deprivation. Survival patterns varied by diagnostic group, but ethnicity and deprivation were not associated with survival in these children. CONCLUSIONS: The profile of children with progressive neuromuscular conditions who were referred for palliative care has changed over the last 20 years, with a different spectrum of underlying diagnoses and a greater number from a South Asian background. The higher than expected proportion of children living in areas of high deprivation has been consistent over time.
Fraser LK; Childs AM; Miller M; Aldridge J; Manning S; McKinney PA; Parslow RC
Palliative Medicine
2012
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Journal Article
<a href="http://doi.org/10.1177/0269216311419989" target="_blank" rel="noreferrer">10.1177/0269216311419989</a>
Challenging symptoms in children with rare life-limiting conditions: findings from a prospective diary and interview study with families
Child; Female; Humans; Male; Young Adult; Interviews as Topic; Prospective Studies; Disease Progression; Medical Records; Family Health; adolescent; Preschool; Charting the Territory; Psychological; Stress; Mucopolysaccharidoses/diagnosis/psychology/therapy; Mucopolysaccharidosis I/diagnosis/therapy; Mucopolysaccharidosis III/diagnosis/therapy; Neuronal Ceroid-Lipofuscinoses/diagnosis/psychology/therapy
Malcolm C; Hain R; Gibson F; Adams S; Anderson G; Forbat L
Acta Paediatrica
2012
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Journal Article
<a href="http://doi.org/10.1111/j.1651-2227.2012.02680.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.2012.02680.x</a>
Research participation experiences of parents of children with cancer who were asked about their child's prognosis
adolescent; Child; Female; Humans; infant; Male; Neoplasms; Adult; Parents; Prognosis; Massachusetts; Hospitals; Research; Pediatric; Preschool; Surveys and Questionnaires
BACKGROUND: In questionnaire-based research, human subject protection committees must assess the emotional impact of the study on participants. Without clear data about the risks and benefits of participating in such studies, however, review board members must use personal judgment to assess emotional harm. OBJECTIVE: To examine experiences of distress and value of participation in a study of prognosis communication among parents of children with cancer, and to identify factors associated with predominantly distressing research experiences. METHODS: We surveyed 194 parents of children with cancer (overall response rate, 70%), treated at the Dana-Farber Cancer Institute and Children's Hospital, Boston, Mass, in the first year after the child's cancer diagnosis. The survey focused on the child's prognosis and parent-physician communication; at the end, we asked parents how distressing and how useful completing the survey had been to them personally. RESULTS: Only 1% of parents found research participation to be "very" distressing. The majority of parents were "not at all" distressed by participating (62%), and most reported that the questionnaire was at least "a little" useful to them personally (69%). Overall, 18% of parents gave higher ratings for distress than for utility. Parents were more likely to experience research participation as predominantly distressing when they found prognostic information to be upsetting (odds ratio [OR] 5.38, p=0.005). CONCLUSION: Most participating parents were able to respond to questions about their child's prognosis with little or no distress. Even when distress was present, it was often accompanied by a perception that participating was of value.
Olcese ME; Mack JW
Journal Of Palliative Medicine
2012
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Journal Article
<a href="http://doi.org/10.1089/jpm.2011.0304" target="_blank" rel="noreferrer">10.1089/jpm.2011.0304</a>
A revision of the intensity of treatment rating scale: classifying the intensity of pediatric cancer treatment
Child; Female; Humans; Male; Questionnaires; adolescent; Preschool; Antineoplastic Combined Chemotherapy Protocols/classification/therapeutic use; Disease Specific; Neoplasms/drug therapy
Kazak AE; Hocking MC; Ittenbach RF; Meadows AT; Hobbie W; DeRosa BW; Leahey A; Kersun L; Reilly A
Pediatric Blood & Cancer
2012
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Journal Article
<a href="http://doi.org/10.1002/pbc.23320" target="_blank" rel="noreferrer">10.1002/pbc.23320</a>
Survival without disability to age 5 years after neonatal caffeine therapy for apnea of prematurity
Child; Female; Humans; infant; Male; Follow-Up Studies; Treatment Outcome; Survival Analysis; Odds Ratio; Child Development; Incidence; Preschool; infant; Newborn; Premature; Apnea/drug therapy; Blindness/epidemiology/etiology/prevention & control; Caffeine/adverse effects/therapeutic use; Central Nervous System Stimulants/adverse effects/therapeutic use; Cerebral Palsy/epidemiology; Cognition Disorders/epidemiology/etiology/prevention & control; Deafness/epidemiology/etiology/prevention & control; Developmental Disabilities/epidemiology/etiology/prevention & control; N2N; Very Low Birth Weight
CONTEXT: Very preterm infants are prone to apnea and have an increased risk of death or disability. Caffeine therapy for apnea of prematurity reduces the rates of cerebral palsy and cognitive delay at 18 months of age. OBJECTIVE: To determine whether neonatal caffeine therapy has lasting benefits or newly apparent risks at early school age. DESIGN, SETTING, AND PARTICIPANTS: Five-year follow-up from 2005 to 2011 in 31 of 35 academic hospitals in Canada, Australia, Europe, and Israel, where 1932 of 2006 participants (96.3%) had been enrolled in the randomized, placebo-controlled Caffeine for Apnea of Prematurity trial between 1999 and 2004. A total of 1640 children (84.9%) with birth weights of 500 to 1250 g had adequate data for the main outcome at 5 years. MAIN OUTCOME MEASURES: Combined outcome of death or survival to 5 years with 1 or more of motor impairment (defined as a Gross Motor Function Classification System level of 3 to 5), cognitive impairment (defined as a Full Scale IQ<70), behavior problems, poor general health, deafness, and blindness. RESULTS: The combined outcome of death or disability was not significantly different for the 833 children assigned to caffeine from that for the 807 children assigned to placebo (21.1% vs 24.8%; odds ratio adjusted for center, 0.82; 95% CI, 0.65-1.03; P = .09). The rates of death, motor impairment, behavior problems, poor general health, deafness, and blindness did not differ significantly between the 2 groups. The incidence of cognitive impairment was lower at 5 years than at 18 months and similar in the 2 groups (4.9% vs 5.1%; odds ratio adjusted for center, 0.97; 95% CI, 0.61-1.55; P = .89). CONCLUSION: Neonatal caffeine therapy was no longer associated with a significantly improved rate of survival without disability in children with very low birth weights who were assessed at 5 years.
Schmidt B; Anderson PJ; Doyle LW; Dewey D; Grunau RE; Asztalos EV; Davis PG; Tin W; Moddemann D; Solimano A; Ohlsson A; Barrington KJ; Roberts RS; Trial Investigators Caffeine for Apnea of Prematurity (CAP)
Jama
2012
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Journal Article
<a href="http://doi.org/10.1001/jama.2011.2024" target="_blank" rel="noreferrer">10.1001/jama.2011.2024</a>
Treating a child with a life-threatening condition
Child; Humans; Male; Terminal Care; Physician's Role; Fatal Outcome; Leukemia; Preschool; patient care team; bereavement; infant; hospice care; B-Cell/therapy; MELAS Syndrome/therapy; Palliative Care/ethics/legislation & jurisprudence/organization & administration
Klein SM; Saroyan JM
Pediatric Annals
2011
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Journal Article
<a href="http://doi.org/10.3928/00904481-20110412-07" target="_blank" rel="noreferrer">10.3928/00904481-20110412-07</a>
Esophageal coin removal by emergency physicians: a continuous quality improvement project incorporating rapid sequence intubation
Child; Female; Humans; Male; Time Factors; Preschool; infant; retrospective studies; Emergency Medicine/methods; Quality improvement; Esophagus/injuries; Foreign Bodies/surgery; Intubation/methods; Numismatics
OBJECTIVE: The objective of this study was to describe our experience removing esophageal coins from children in a tertiary care pediatric emergency department over a 4-year period. METHODS: We retrospectively reviewed a continuous quality improvement data set spanning October 1, 2004, through September 30, 2008. RESULTS: In 96 of 101 cases (95%), emergency physicians successfully retrieved the coin. The median age of the children was 19 months (interquartile range [IQR] 13-43 months; range 4 months-12.8 years). The median time to removal of coin from initiation of intubation was 8 minutes (IQR 4-14 minutes; range 1-60 minutes). Coins were extracted using forceps only in 56 cases, whereas forceps and a Foley catheter were used in the remainder. Succinylcholine and etomidate were used in almost all cases for rapid sequence intubation prior to coin removal. Complications were identified in 46 cases: minor bleeding (13), lip laceration (7), multiple attempts (5), hypoxia (3), accidental extubation (3), dental injuries (3), bradycardia (2), coin advanced (1), right main-stem bronchus intubation (1), and other (8). CONCLUSIONS: Emergency physicians successfully removed esophageal coins following rapid sequence intubation in most cases. Our approach may be considered for the management of pediatric esophageal coins, particularly in an academic pediatric emergency department.
Bhargava R; Brown L
Canadian Journal Of Emergency Medical Care
2011
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Journal Article
<a href="http://doi.org/10.2310/8000.2011.100298" target="_blank" rel="noreferrer">10.2310/8000.2011.100298</a>
Indicators of family resilience after the death of a child
Child; Female; Humans; infant; Male; Adult; Parent-Child Relations; Parents; Anecdotes as Topic; Middle Aged; Self Concept; Attitude to Death; social support; Social Adjustment; Survivors; Self-Help Groups; Belgium; Preschool; Adaptation; Psychological; Newborn; Grief; sibling bereavement; Resilience; Object Attachment
The aim of this study was to identify and describe resilience qualities in families after losing a child. Questionnaires, including an open-ended question, were utilized to collect data independently from the parents and siblings of the deceased in 89 Belgian families. The results indicate that family strengths in general, and commitment to the family in particular, helped the families' adaptation after the loss. In addition, the adaptation process after the loss was aided if the family members viewed the crisis as a challenge. Both the siblings and the parents indicated that the extent to which a family experienced support from the community was directly related to family adaptation after the loss. Redefining the situation and utilizing social support from friends and family were underlined as effective family coping strategies. The findings could be used in interventions to promote family resilience, thereby affirming the reparative potential of families.
Greeff AP; Vansteenwegen A; Herbiest T
Omega
2011
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Journal Article
<a href="http://doi.org/10.2190/om.63.4.c" target="_blank" rel="noreferrer">10.2190/om.63.4.c</a>
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>
Annual summary of vital statistics: 2008
Child; Female; Humans; infant; Male; United States; Young Adult; Adult; adolescent; Preschool; infant; Newborn; Maternal Age; Age Distribution; Infant Mortality/trends; Mortality/trends; Birth Rate/trends; Vital Statistics
The number of births in the United States decreased between 2007 and 2008 (preliminary estimate: 4 251 095). Birth rates declined among all women aged 15 to 39 years; the decrease among teenagers reverses the increases seen in the previous 2 years. The total fertility rate decreased 2% in 2008 to 2085.5 births per 1000 women. The proportion of all births to unmarried women increased to 40.6% in 2008, up from 39.7% in 2007. The 2008 preterm birth rate was 12.3%, a decline of 3% from 2007. In 2008, 32.3% of all births occurred by cesarean delivery, up nearly 2% from 2007. Twin and triplet birth rates were unchanged. The infant mortality rate was 6.59 infant deaths per 1000 live births in 2008 (significantly lower than the rate of 6.75 in 2007). Life expectancy at birth was 77.8 years in 2008. Crude death rates for children aged 1 to 19 years decreased by 5.5% between 2007 and 2008. Unintentional injuries and homicide were, respectively, the first and second leading causes of death in this age group. These 2 causes of death jointly accounted for 51.2% of all deaths of children and adolescents in 2008. This annual article is a long-standing feature in Pediatrics and provides a summary of the most current vital statistics data for the United States. We also include a special feature this year on the differences in cesarean-delivery rates according to race and Hispanic origin.
Mathews TJ; Minino AM; Osterman MJ; Strobino DM; Guyer B
Pediatrics
2011
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Journal Article
<a href="http://doi.org/10.1542/peds.2010-3175" target="_blank" rel="noreferrer">10.1542/peds.2010-3175</a>
Quality of life for children with life-limiting and life-threatening illnesses: description and evaluation of a regional, collaborative model for pediatric palliative care
adolescent; Child; Female; Humans; infant; Male; Palliative Care; Terminal Care; referral and consultation; Pediatrics; Health Personnel; Program Evaluation; Continuity of Patient Care; Biomedical Research; Inservice Training; District of Columbia; quality of life; Preschool; Newborn; PEDI Study; Quality of Health Care
The care of children in the U.S. with life-limiting illnesses is inadequate. Misallocated resources, flawed assumptions and models of care, and a lack of appropriate professional education foster a costly, inefficient system that falls short of its true potential. This article details the evolution of a regional, shared approach to address these issues, the District of Columbia Pediatric Palliative Care Collaboration (DCPPCC), and includes its evolution, preliminary clinical results, and assessment of barriers encountered.
Rogers SK; Gomez CF; Carpenter P; Farley J; Holson D; Markowitz M; Rood B; Smith K; Nigra Peter
The American Journal Of Hospice & Palliative Care
2011
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Journal Article
<a href="http://doi.org/10.1177/1049909110380594" target="_blank" rel="noreferrer">10.1177/1049909110380594</a>
Distraction, exposure therapy, counterconditioning, and topical anesthetic for acute pain management during needle sticks in children with intellectual and developmental disabilities
Child; Female; Humans; Male; Cooperative Behavior; Developmental Disabilities; Task Performance and Analysis; adolescent; Preschool; Psychological; Stress; caregivers; Behavior Therapy/methods; Phlebotomy
A behavior therapy approach for obtaining cooperation during needle sticks was provided to 8 pediatric patients with intellectual and developmental disabilities. Therapy was provided during mock needle sticks. Hand lotion was applied to simulate topical anesthetic. Distracting activities established relaxation while needle stick materials were gradually introduced. Positive reinforcement was provided for cooperation. Behavioral distress was ignored, blocked, or redirected. After cooperating with mock needle sticks, needle sites were prepared with topical anesthetic (EMLA), then therapists and medical staff implemented the behavioral protocol while completing the actual needle stick(s). Observational measures of cooperation and interfering were obtained. Results were replicated across 8 children and evaluated using paired samples t tests. Initially, all children were uncooperative with needle sticks. With treatment, behavioral distress decreased, and patients cooperated with mock and actual needle sticks. Results support the effectiveness of behavior therapy for promoting cooperation in children with intellectual and developmental disabilities during needle sticks.
Slifer KJ; Hankinson JC; Zettler MA; Frutchey RA; Hendricks MC; Ward CM; Reesman J
Clinical Pediatrics
2011
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Journal Article
<a href="http://doi.org/10.1177/0009922811398959" target="_blank" rel="noreferrer">10.1177/0009922811398959</a>
Place of death and palliative care following discharge from paediatric intensive care units
Child; Female; Humans; infant; Male; Intensive Care Units; Cohort Studies; adolescent; Preschool; infant; Newborn; Hospitalization/statistics & numerical data; Palliative Care/statistics & numerical data; location of death; Pediatric/statistics & numerical data; child mortality; Great Britain/epidemiology; Home Care Services/statistics & numerical data; Hospice Care/statistics & numerical data; Patient Discharge/statistics & numerical data; Referral and Consultation/statistics & numerical data
OBJECTIVE: To determine where children die following discharge from paediatric intensive care units (PICUs) in Great Britain and to investigate if this varies by discharge to palliative care. DESIGN: National cohort of PICU admissions linked to Office of National Statistics death certificate data. SETTING: 31 PICUs in Great Britain. PARTICIPANTS: A cohort of 35 383 children admitted to PICUs between 1 November 2002 until 25 January 2007. MAIN OUTCOME MEASURES: Place of death by palliative care discharge status. RESULTS: 2346 (6.6%) deaths occurred after discharge during the study period, which is more than 10 times the normal child population mortality of 6.0 per 1000. Discharge to palliative care resulted in fewer deaths in hospital (44.1%) (compared to non-palliative care discharges (77.7%)), a greater proportion of deaths were at home (33.3% compared to non-palliative discharges 16.1%) and in a hospice (22.5% compared to non-palliative discharges 5.8%). CONCLUSIONS: Children referred to palliative care services at discharge from PICU are more likely to die in the community (home or hospice) than children not referred to palliative care.
Fraser LK; Miller M; Draper ES; McKinney PA; Parslow RC; Paediatric Intensive Care Audit Network
Archives Of Disease In Childhood
2011
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Journal Article
<a href="http://doi.org/10.1136/adc.2009.178269" target="_blank" rel="noreferrer">10.1136/adc.2009.178269</a>
Swedish parents' experiences of parenthood and the need for support to siblings when a baby is stillborn
adolescent; Child; Female; Humans; infant; Male; Adult; Siblings; Sweden; Stillbirth; Preschool; sibling bereavement; parenting
BACKGROUND: It has been argued that having a stillborn baby in the family affects older siblings more than parents realize. The aim of this study was to describe parenthood and the needs of siblings after stillbirth from the parents' perspective. METHODS: Six focus groups were held with 27 parents who had experienced a stillbirth and who had had children before the loss. The discussion concerned parents' support to the siblings, and the sibling's meeting, farewell, and memories of their little sister or brother. Data were analyzed using qualitative content analysis. RESULTS: The overall theme of the findings was parenthood in a balance between grief and everyday life. In the analysis, three categories emerged that described the construction of the theme: support in an acute situation, sharing the experiences within the family, and adjusting to the situation. CONCLUSIONS: The siblings' situation is characterized by having a parent who tries to maintain a balance between grief and everyday life. Parents are present and engaged in joint activities around the stillbirth together with the siblings of the stillborn baby. Although parents are aware of the sibling's situation, they feel that they are left somewhat alone in their parenthood after stillbirth and therefore need support and guidance from others.
Avelin P; Erlandsson K; Hildingsson I; RĂ¥destad I
Birth (berkeley, Calif.)
2011
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Journal Article
<a href="http://doi.org/10.1111/j.1523-536X.2010.00457.x" target="_blank" rel="noreferrer">10.1111/j.1523-536X.2010.00457.x</a>
Care goals and decisions for children referred to a pediatric palliative care program
Child; Female; Humans; infant; Male; Young Adult; Palliative Care; Pediatrics; Goals; Health Status; quality of life; adolescent; Preschool; decision making; infant; referral and consultation; Newborn; care goals; Life-limiting conditions; Therapeutic Processes; treatment decision making
OBJECTIVE: To describe goals of care for children with complex, life-limiting conditions and to assess the variables that may influence these goals. METHODS: Goals of care were elicited from the parents and children with complex, life-limiting conditions during initial palliative care consultation. Data abstracted included: diagnoses, demographics, time from diagnosis until initial palliative care consult, spirituality status, resuscitative status, and disposition at discharge. Goals of care were categorized into one of four quality-of-life domains: 1) physical health and independence, 2) psychological and spiritual, 3) social, and 4) environment. Summary statistics were prepared and comparisons were made between the four categories of goals. Descriptive statistics were utilized to explore potential associations with a decision to pursue full medical support. RESULTS: One hundred and forty goals of care were obtained from 50 patients/parents. The median patient age was 4.6 years. Thirty-seven patients had significant cognitive delay/impairment. Neuromuscular disorders accounted for more than half of the diagnoses. Forty-nine patients identified at least one goal pertaining to physical health and independence. This was significantly more than any other category (p < 0.0001). Thirty-three of the 50 patients (66%) opted for full medical support at the time of initial consult. CONCLUSIONS: Children with complex, life-limiting conditions and their families referred to a palliative care service commonly verbalize goals related to health maintenance and independence. Anticipating this expectation may foster communication and improve patient care.
Tamburro R F; Shaffer ML; Hahnlen NC; Felker P; Ceneviva GD
Journal Of Palliative Medicine
2011
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Journal Article
<a href="http://doi.org/10.1089/jpm.2010.0450" target="_blank" rel="noreferrer">10.1089/jpm.2010.0450</a>
Parental assessment of pain coping in individuals with intellectual and developmental disabilities
Child; Female; Humans; Male; Young Adult; Pain Measurement; Adult; Questionnaires; adolescent; Preschool; Adaptation; Psychological; Parents/psychology; social support; Developmental Disabilities/complications/psychology; Intellectual Disability/complications/psychology; Pain/complications/psychology
Pain coping is thought to be the most significant behavioural contribution to the adjustment to pain. Little is known about how those with intellectual and developmental disabilities (IDD) cope with pain. We describe parental reported coping styles and how coping relates to individual factors. Seventy-seven caregivers of children and adults with IDD reported on coping styles using the Pediatric Pain Coping Inventory (PPCI), pain behaviour using the Non-Communicating Children's Pain Checklist-Revised (NCCPC-R), illness-related interactions using the Illness Behaviour Encouragement Scale (IBES) and past pain experience using the Structured Pain Questionnaire. Scores were compared across mental ages and interactions between pain coping and the other factors were explored. A Multivariate Analysis of Variance (MANOVA) by mental age group ('/=12 years') revealed that those in the '5-11 years' mental age group used more coping styles than those in the '/=12 years' group used more cognitively demanding coping styles than the other two groups (F(10,130)=2.68, p=.005). Seeking Social Support (r=.39, p=.001) and Catastrophizing/Helplessness (r=.33, p<.01) coping styles were significantly related to a greater display of pain behaviour. Those with younger mental ages, who Seek Social Support or Catastrophize, also displayed more pain behaviour, which may be an attempt to seek external resources when pain is beyond their ability to deal with independently.
Burkitt CC; Breau LM; Zabalia M
Research In Developmental Disabilities
2011
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Journal Article
<a href="http://doi.org/10.1016/j.ridd.2011.01.050" target="_blank" rel="noreferrer">10.1016/j.ridd.2011.01.050</a>
Complementary and alternative therapy use in pediatric oncology patients with failure of frontline chemotherapy
Child; Female; Humans; infant; Male; Survival Rate; Young Adult; Adult; Questionnaires; Treatment Outcome; Religion; Complementary Therapies; Treatment Failure; adolescent; Preschool; infant; Newborn; Neoplasms/therapy; Antineoplastic Agents/therapeutic use; Salvage Therapy
BACKGROUND: The use of CAM by the relapsed pediatric oncology population has largely gone unstudied. The main objective of this study was to describe the prevalence of and change in CAM use in oncology patients for whom frontline therapy had failed. Secondary objectives included describing patient/family objectives for using CAM, satisfaction with CAM, financial and time expenditures on CAM, and patient desire for physician involvement in CAM use. PROCEDURE: Fifty-four patients 0-25 years of age, for whom frontline therapy had failed, were enrolled. The subjects completed an anonymous one-time self-administered questionnaire. RESULTS: Eighty-two percent of respondents reported using CAM, 52% of which reported initiating or increasing CAM use after failure of frontline therapy. The most commonly used CAM categories were prayer/spiritual healing (83%) and oral/dietary supplements (31%). Prayer/spiritual healing was most commonly used to cure or slow the progression of cancer (59%). Oral/dietary supplements were used to improve overall health and well-being (65%). Estimates of money and time spent ranged from $0 to >$1,275 (median $225) and 1 to > 700 hr (median 10 hr). Sixty percent of CAM users reported their oncologist was unaware of their use. Most participants who used non-spiritual/prayer CAM continued use while hospitalized or while receiving chemotherapy. CONCLUSIONS: Understanding usage patterns may better help pediatric oncologists and palliative-care specialists address the needs of this population, and protect against potentially dangerous drug interactions or side effects from combined CAM and chemotherapy use.
Paisley MA; Kang T; Insogna IG; Rheingold SR
Pediatric Blood & Cancer
2011
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Journal Article
<a href="http://doi.org/10.1002/pbc.22939" target="_blank" rel="noreferrer">10.1002/pbc.22939</a>
Pediatric sedation with analgesia
Child; Intensive Care Units; Analgesics; Drug Therapy; Time Factors; Clinical Protocols; Anesthetics; Pediatric; Preschool; infant; Comparative Study; retrospective studies; Human; Opioid/therapeutic use; Adolescence; Fentanyl/therapeutic use; Combination; Propofol/therapeutic use; Analgesia/adverse effects/methods; Conscious Sedation/adverse effects/methods; Intravenous/therapeutic use
Sedation with analgesia is frequently required to perform painful or invasive procedures in children. The best medication combination for pediatric sedation with analgesia is yet to be identified. Sixty-four of 243 total sedation with analgesia procedures from January 1994 through August 1995 were randomly chosen for descriptive retrospective review and analysis. Four minor complications from the procedures were identified, and recovery was complete in all cases. One medication combination (fentanyl 1 microg/kg with propofol 1.5 to 2 mg/kg, followed by an infusion of 150 microg/kg/min) provided the shortest mean time to dismissal (17.8 minutes v 38 minutes) when compared with other combinations used. No episodes of respiratory depression, hypotension, or nausea and vomiting occurred in the fentanyl/propofol group. These results show that fentanyl/propofol was superior to other medications used during this study period for pediatric sedation with analgesia. Prospective comparison of this medication combination with other short-acting agents in patients undergoing both elective and emergency procedures is necessary.
1999
Bauman L; Kish I; Baumann RC; Politis GD
American Journal of Emergency Medicine
1999
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Journal Article
Pain and symptom control in terminally ill children
Child; Palliative Care; Pain Measurement; Adult; Analgesics; Antidepressive Agents; Preschool; infant; Comparative Study; Human; Opioid/therapeutic use; Tricyclic/therapeutic use; HIV Seropositivity/psychology; Anesthetics/therapeutic use; Depression/drug therapy/etiology; Gastrointestinal Diseases/therapy; Histamine H1 Antagonists/therapeutic use; Neoplasms/complications/psychology; Pain/diagnosis/drug therapy/etiology; Terminally Ill/psychology
The management of pain in terminally ill pediatric patients has incalculable benefits to patients, their families, and physicians and nurses. A therapeutic management plan is dependent on a thorough understanding of the causes of pain in these patients, on pain assessment, and on the myriad drugs and drug strategies that are essential in pain treatment. Aggressive symptom control of treatment- related side effects can ensure successful implementation of such a plan.
2000
Galloway KS; Yaster M
Pediatric Clinics Of North America
2000
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Journal Article
Occurrence of withdrawal in critically ill sedated children
Child; Female; Male; Analgesics; Respiration; Time Factors; Medical Records; adolescent; Preschool; infant; retrospective studies; Dose-Response Relationship; Drug; Human; Artificial; Barbiturate/adverse effects; Critical Care/methods; Midazolam/adverse effects; Morphine/adverse effects; Nonbarbiturate/adverse effects; Opioid/adverse effects; Pentobarbital/adverse effects; Sedatives; Substance Withdrawal Syndrome/etiology/therapy
OBJECTIVES: To record the number of children with withdrawal symptoms after the administration of sedatives for mechanical ventilation, and to discuss the possible connection with the administration of midazolam. DESIGN: Retrospective data collection from case records and charts. SETTING: Medical and surgical intensive care unit (ICU) in a university hospital. PATIENTS: Children 6 months to 14 yrs of age who required sedation for mechanical ventilation (n = 40). INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Kind and amount of sedatives and analgesics, duration of administration, and occurrence of withdrawal symptoms. The frequency of withdrawal symptoms was 35% (14/40) of the sedated children. A total dose of midazolam of >60 mg/kg was strongly significantly associated with occurrence of withdrawal. Statistical analysis to determine the occurrence of withdrawal associated with the administration of morphine was not possible. CONCLUSIONS: Signs and symptoms of a withdrawal reaction were observed in several children. The occurrence of withdrawal was statistically related to high doses of midazolam, but it was not possible to determine the influence of morphine. If large doses of midazolam and opioids have been administered, there may be justification for reducing the dose gradually instead of abruptly, or using longer-acting benzodiazepines or opioids on discontinuation of sedation.
1999
Fonsmark L; Rasmussen YH; Carl P
Critical Care Medicine
1999
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Journal Article
Guidelines for assistance to terminally ill children with cancer: a report of the SIOP Working Committee on psychosocial issues in pediatric oncology
Child; Female; Male; Parent-Child Relations; Attitude to Death; Professional-Family Relations; Professional-Patient Relations; Family Health; Counseling; quality of life; Preschool; bereavement; social support; Human; Palliative Care; Anxiety/prevention & control; Terminal Care; Pain/prevention & control; Neoplasms/psychology/therapy; Child Care; Fear/psychology
This, the sixth official document of the SIOP Working Committee on psychosocial issues in pediatric oncology, develops another important and especially difficult topic: assistance for terminally ill children with cancer. This is provided for the pediatric oncology community as a useful set of guidelines. It should be always possible for a declining child to die without unnecessary physical pain, fear, or anxiety. It is essential that he or she receive adequate medical, spiritual, and psychological support, and that the child at no point feels abandoned. Palliative care, in the terminal phase of cancer, should be tailored to the different needs and desires of the child and the family, with the goal of providing the best possible quality of life for the days that remain.
1999
Masera G; Spinetta J; Jankovic M; Ablin AR; D'Angio GJ; Van Dongen-Melman J; Eden T; Martins AG; Mulhern RK; Oppenheim D; Topf R; Chesler MA
Medical & Pediatric Oncology
1999
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Journal Article
Survival estimates of severely disabled children
Child; Female; Male; Survival Rate; Adult; Aged; Bias (Epidemiology); adolescent; Preschool; Human; Life Expectancy; Middle Age; California/epidemiology; Disabled Children/classification/statistics & numerical data; Disabled Persons/classification/statistics & numerical data; Nervous System Diseases/diagnosis/mortality
1998
Grossman HJ; Eyman RK
Pediatric Neurology
1998
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Journal Article
Life expectancy of children with cerebral palsy
Child; Female; Male; Cohort Studies; Survival Analysis; Risk Factors; Confidence Intervals; Activities of Daily Living; Feeding Methods; Proportional Hazards Models; Preschool; infant; Eating; Human; Motor Skills; Likelihood Functions; Life Expectancy; Cerebral Palsy/mortality; California/epidemiology
Risk factors for mortality of young children with cerebral palsy were studied using a sample of 12,709 children aged 0.5-3.5 years with cerebral palsy who had received services from the State of California between 1980 and 1995. The most powerful prognostic factors for survival were simple functional items: mobility and feeding skills. Once these were known, factors such as severity of mental retardation and presence of quadriplegia contributed relatively little. Children with fair motor and eating skills had good survival prospects, with 90% or more reaching adulthood, but those without such skills had much poorer prospects. Among children who were unable to lift their heads, median survival time was 7 additional years for those who were tube fed (n = 557) and 14 years for those fed entirely by others (n = 997). Although a child's approximate survival chances can be assessed from such functional classifications, we indicate the manner in which additional information on the child's condition can be used to obtain more accurate survival data.
1998
Strauss DJ; Shavelle RM; Anderson TW
Pediatric Neurology
1998
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Journal Article
Prognosis for survival and improvement in function in children with severe developmental disabilities
Child; infant; Survival Rate; Cohort Studies; Prognosis; Follow-Up Studies; Severity of Illness Index; Preschool; P.H.S.; U.S. Gov't; infant; Newborn; Human; Age Distribution; Support; California/epidemiology; Developmental Disabilities/mortality
OBJECTIVE: To derive prognostic data for survival and clinical improvement in children with severe developmental disabilities. STUDY DESIGN: A 13-year follow-up study of several cohorts of children initially evaluated before their first birthday. The outcomes studied were survival and improvement in condition. Methods were used to overcome limitations in previously published work on the same California data base. Of the 11,912 children who received services from the California Department of Developmental Services between January 1980 and December 1993, we focused on three cohorts defined according to mobility and need for tube feeding. RESULTS: Children who were tube fed and unable to lift their heads by ages 3 to 12 months were at high risk for early death, with a median remaining life expectancy of 3.2 years. Of those who survived an additional 2 years, the condition of about one third improved. A substantial majority of those who either showed improvement or died had done so by that age. CONCLUSION: By age 5 years, the prognoses for survival and improvement have to a large extent been clarified. For children who survive to age 5 years, even those in the lowest functioning cohort have a 60% chance of surviving an additional 5 years. Detailing the probabilities of various outcomes at various ages should be useful to parents, pediatricians, and others concerned with children with developmental disabilities.
1997
Strauss D; Ashwal S; Shavelle R; Eyman RK
Journal Of Pediatrics
1997
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Journal Article
Communication with parents of children with cancer
Child; Female; Male; Grief; Adult; Parent-Child Relations; Follow-Up Studies; Defense Mechanisms; adolescent; Preschool; Adaptation; Psychological; patient care team; infant; Human; Professional-Family Relations; Neoplasms/psychology; Truth Disclosure; Interview; Communication; Leukemia/psychology; Parents/education/psychology
The purpose of this study was to assess the receptiveness of parents to information given about their child's life threatening illness. Three months after the child's diagnosis, an independent interviewer, using a structured questionnaire, interviewed the parents about what and how they had been told, and assessed the stage of parental coping reached at that time. All patients were treated at a regional paediatric oncology centre (RHSCE) and the interviews were conducted preferably in the family home (61%), or in a 'quiet' hospital room (39%). Twenty-five, unselected, consecutive patients with cancer and leukaemia diagnosed and treated at the RHSCE and their families were recruited into the study (1988-1989). One child died during the first three months and one single parent family refused co-operation. Eighteen of the 23 interviews conducted were with both parents, and five were with single parents (all maternal). All 23 sets of parents admitted deep shock and devastation on hearing the initial diagnosis, with 12 sets feeling that they had taken in little or none of the information given. A long interview was conducted a few days after the initial talk with the consultant. The parents of four children (17%) denied that the long interview had occurred whilst 10/19 who remembered it expressed specific lack of understanding of some or all details. All families remembered a large number (10-20) of subsequent talks with a wide range of staff, but 14/23 felt that some of the information was still confusing or conflicting, and 9/14 did not want to ask for further clarification, principally because they did not want to hear more bad news. The majority felt the child understood little of what was going on. At the study interview, most parents were assessed as still being very anxious about their child's illness, whilst two couples, one single mother and one father, were content with what and how they had been told about their child's illness and were in a state of emotional homeostasis. It is concluded that communication of bad news is a two-way process requiring skilled medical staff, but also a receptive audience. The emotional state of the parent determines his or her ability to hear and comprehend the information given. The results imply that repetition and clarification at consultation interviews is required until parents are emotionally able to hear, accept and comprehend complex news. Written material, taped interviews and simple videos can assist in this process.
1994
Eden OB; Black I; MacKinlay GA; Emery AE
Palliative Medicine
1994
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Journal Article
Comparison of morphine and methadone for prevention of postoperative pain in 3- to 7-year-old children
Child; Female; Male; Pain; Pain Measurement; Prospective Studies; Analysis of Variance; Double-Blind Method; Preschool; Non-U.S. Gov't; Comparative Study; Drug Evaluation; Human; Support; Postoperative/prevention & control; algorithms; Intraoperative Care; Methadone/adverse effects/pharmacokinetics/therapeutic use; Morphine/adverse effects/therapeutic use
A randomized, double-blind, prospective study was performed to determine the effects of perioperative administration of morphine or methadone on postoperative analgesic requirements and pain scores in 35 children aged 3 to 7 years undergoing major surgery. After a standardized induction of anesthesia, methadone or morphine, 0.2 mg/kg, was blindly administered, and supplemental doses were titrated to achieve comfort in the recovery room. Pain was assessed during the next 36 hours with a combination of validated behavioral and self-report measures. Patients in the methadone group required fewer supplemental opioid analgesic drugs during the next 36 hours, and reported lower pain scores. No patient had prolonged emergence from anesthesia, and no patient required naloxone or postoperative ventilatory assistance. No major adverse events occurred. We conclude that perioperative intravenous administration of methadone is an effective, inexpensive, and technologically simple means for providing prolonged analgesia for children after surgery.
1991
Berde CB; Beyer JE; Bournaki MC; Levin CR; Sethna NF
Journal Of Pediatrics
1991
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Journal Article
Transdermal fentanyl for pain relief in a paediatric palliative care population
Child; Female; Male; Palliative Care; Pain Measurement; Terminally Ill; Analgesics; Parents; Treatment Outcome; Patient Satisfaction; adolescent; Preschool; Non-U.S. Gov't; Administration; Human; Cutaneous; Support; Pain/drug therapy; Opioid/administration & dosage; Fentanyl/administration & dosage
This multicentre, observational study examined the efficacy of the therapeutic transdermal fentanyl system (TTS-fentanyl) in children requiring opioids for pain in life-threatening disease. Forty-one children receiving oral morphine (median dose 60 mg/day) transferred to transdermal fentanyl (median dose 25 micrograms/h according with the manufacturer's dose conversion guidelines). Twenty-six children completed the 15-day treatment phase, seven died due to disease progression and eight were withdrawn because of adverse events, inadequate analgesia or a change to parenteral opioids. After 15 days, the median fentanyl dose was 75 micrograms/h (range 25-250). No serious adverse events were attributed to fentanyl. There was a trend toward improved side-effects and convenience with fentanyl. Twenty-three of 26 parents (three missing) and 25 of 26 investigators considered transdermal fentanyl to be better than previous treatment. For all records available (at 15 days or on withdrawal if earlier), 75% (27/36) reported that fentanyl treatment was 'good' or 'very good'. The findings suggest that transdermal fentanyl is both effective and acceptable for children and their families.
2001
Hunt A; Goldman A; Devine T; Phillips M
Palliative Medicine
2001
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Journal Article
Prevalence and morbidity associated with non-malignant, life-threatening conditions in childhood
Child; Cross-Sectional Studies; infant; Family; Adult; Prevalence; Parent-Child Relations; Mental Health; adolescent; Preschool; Non-U.S. Gov't; infant; Newborn; Human; Support; Great Britain/epidemiology; Child Welfare/statistics & numerical data; Chronic Disease/epidemiology/psychology; Disabled Children/psychology/statistics & numerical data
OBJECTIVE: To determine the prevalence of non-malignant life-threatening illness in childhood and associated morbidity in the affected child and their family members. DESIGN: Cross-sectional survey. SETTING: Bath Clinical Area (total population 411,800). SUBJECTS: Children aged 0-19 years. RESULTS: One hundred and twenty-three children were identified, giving a prevalence of 1.2/1000 children. Morbidity assessed in 93 children showed 60% in pain or discomfort, 35% unable to walk and 25% with severe cognitive impairment. Mental health problems were found in 54% of mothers and 30% of fathers, and significant emotional and behavioural problems in 24% of healthy siblings. CONCLUSIONS: Non-malignant life-threatening illness is more prevalent than reported in previous studies. Considerable morbidity is experienced by the child and their family. An individual and family approach is required. Key messages (1) The prevalence of non-malignant life-threatening illness is four times greater than previous estimates. (2) This group of conditions have significant implications for all family members. (3) Early comprehensive assessment and access to effective interventions may pre-empt later problems.
2001
Lenton S; Stallard P; Lewis M; Mastroyannopoulou K
Child: Care, Health And Development
2001
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
Life expectancy of children in vegetative and minimally conscious states
Child; Female; Male; Logistic Models; Survival Analysis; Risk Factors; Multivariate Analysis; Odds Ratio; adolescent; Preschool; Non-U.S. Gov't; Human; Support; Gastrostomy/mortality; Life Expectancy; Brain Injuries/mortality; Enteral Nutrition/mortality; Persistent Vegetative State/mortality
We determined estimates of survival in children, 3-15 years of age, in the vegetative state (VS) (n = 564), immobile minimally conscious state (MCS) (n = 705), and mobile MCS (n = 3,806). Data were extracted from the annual Client Development Evaluation Reports of the California Department of Developmental Services between 1988 and 1997 using the operational definitions for these three states on the basis of 15 descriptive behavioral categories. Patients were also categorized according to the following four etiologies: acquired (traumatic and nontraumatic) brain injury; perinatal/genetic; degenerative; and unknown/undetermined. The percentage of patients surviving 8 years was 63%, 65%, and 81%, for the VS, immobile MCS, and mobile MCS, respectively. Children in the VS and MCSs with acquired brain injury had lower mortality rates and those with degenerative diseases the highest mortality rates. We observed little difference in survival between patients in the VS and immobile MCS, suggesting that the presence of consciousness is not a critical variable in determining life expectancy. Furthermore, survival was much greater for patients in the mobile MCS than for those in the immobile MCS, suggesting that mobility is more important in predicting survival than the level of consciousness.
2000
Strauss DJ; Ashwal S; Day SM; Shavelle RM
Pediatric Neurology
2000
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
Care of terminally ill children with cancer
Child; Palliative Care; Physician-Patient Relations; Adult; Parent-Child Relations; Attitude to Death; Communication; Patient Participation; adolescent; Preschool; Terminally Ill/psychology; social support; Human; hospice care; Terminal Care; Neoplasms/psychology/therapy
2000
Nitschke R; Meyer WH; Sexauer CL; Parkhurst JB; Foster P; Huszti H
Medical & Pediatric Oncology
2000
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
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
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
Childhood bereavement after the death of a sibling.
adolescent; Child; Female; Humans; Male; bereavement; Adult; Parents; Attitude to Death; Child Psychology; Sibling Relations; Nursing Methodology Research; Preschool; sibling bereavement; N
The article describes a study designed to explore the processes of sibling bereavement and to compare children's impressions with those of their parents. The Institute of Medicine model was used as a sensitizing framework for the study. Constant comparative technique was used to analyze data from a pilot study of 18 bereaved siblings aged 4 to 23 years. Sadness was the most common reaction after sibling death. Mothers were most often cited as being helpful; friends and fathers were also helpful. People who were not actively supportive were not helpful. Many children described feeling protective of their parents, and several children described personal growth.
1995-04
Mahon MM; Page ML
Holistic Nursing Practice
1995
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