Shifting place of death among children with complex chronic conditions in the United States, 1989-2003
Child; Female; Humans; infant; Male; Attitude to Death; adolescent; Preschool; infant; Newborn; retrospective studies; United States/epidemiology; Chronic Disease/mortality; Hospitals/statistics & numerical data; Palliative Care/statistics & numerical data; Residence Characteristics/statistics & numerical data; Terminally Ill/statistics & numerical data
CONTEXT: The place where children with complex chronic conditions are dying may be shifting toward residential homes due to the evolving epidemiology of life-threatening childhood conditions, advances in home-based medical technology, and changes in attitudes about pediatric palliative care and hospice services. OBJECTIVES: To determine whether pediatric deaths attributed to complex chronic conditions are increasingly occurring in the home and to assess race and ethnicity disparities in the location of death. DESIGN, SETTING, AND PARTICIPANTS: Retrospective national-level case series drawn from the National Center for Health Statistics' Multiple Cause of Death Files spanning 1989-2003. Participants included all deceased individuals aged 19 years or younger with a complex chronic condition excluding injury and noncomplex chronic conditions (as classified by International Classification of Diseases, Ninth Revision or International Classification of Diseases, Tenth Revision). MAIN OUTCOME MEASURE: Place where death occurred. RESULTS: Among the 22.1% of deaths (198 160 of 896 509 total deaths) attributed to a complex chronic condition between 1989 and 2003, the percentage of individuals dying at home increased significantly (P<.001) over time for infants (aged <1 year) (4.9% in 1989 and 7.3% in 2003); 1- to 9-year-olds (17.9% and 30.7%); and for 10- to 19-year-olds (18.4% and 32.2%). Adjusting for decedent characteristics, the odds of dying at home increased significantly each year (odds ratio, 1.04; 95% confidence interval, 1.03-1.04) and were reduced among both black and Hispanic decedents (odds ratio, 0.50; 95% confidence interval, 0.48-0.52 and odds ratio, 0.52; 95% confidence interval, 0.50-0.54, respectively) compared with white decedents. CONCLUSIONS: Children who die with underlying complex chronic conditions increasingly are dying at home. Racial and ethnic disparities regarding place of death may represent important limitations and opportunities for improvement in the current systems of pediatric chronic and palliative care.
2007
Feudtner C; Feinstein JA; Satchell M; Zhao H; Kang T
Journal Of The American Medical Association
2007
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1001/jama.297.24.2725" target="_blank" rel="noreferrer">10.1001/jama.297.24.2725</a>
Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders
Humans; Interdisciplinary Communication; Models; Adolescent Transitions; United States/epidemiology; Genetic; Genetic Diseases; Comprehensive Health Care/methods; Inborn/diagnosis/epidemiology/therapy
Approaches to providing comprehensive coordinated care for individuals with complex diseases include the medical home approach, the chronic care model in primary care, and disease-specific, multidisciplinary specialty clinics. There is uneven availability and utilization of multidisciplinary specialty clinics for different genetic diseases. For 2 disorders (ie, hemophilia and cystic fibrosis), effective national networks of specialty clinics exist and reach large proportions of the target populations. For other disorders, notably, sickle cell disease, fewer such centers are available, centers are less likely to be networked, and centers are used less widely. Models of comanagement are essential for promoting ongoing communication and coordination between primary care and subspecialty services, particularly during the transition from pediatric care to adult care. Evaluation of the effectiveness of different models in improving outcomes for individuals with genetic diseases is essential.
2009
Grosse SD; Schechter MS; Kulkarni R; Lloyd-Puryear MA; Strickland B; Trevathan E
Pediatrics
2009
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Journal Article
<a href="http://doi.org/10.1542/peds.2007-2875" target="_blank" rel="noreferrer">10.1542/peds.2007-2875</a>
Planning for health care transitions: results from the 2005-2006 National Survey of Children With Special Health Care Needs
Child; Cross-Sectional Studies; Female; Humans; Male; adolescent; Adolescent Transitions; United States/epidemiology; disabled children; Child Health Services/standards/trends; Delivery of Health Care/methods/standards/trends; Health Care Surveys/methods/standards/trends; Health Planning/methods/standards/trends; Health Services Needs and Demand/standards/trends; Needs Assessment/standards/trends
OBJECTIVES: Many youth with special health care needs have difficulties transferring to adult medical care. To address this, the Maternal and Child Health Bureau has made receipt of transition services a core performance outcome for community-based systems of care for youth with special health care needs. In this article we describe the results for the transition core outcome from the 2005-2006 National Survey of Children With Special Health Care Needs. We also describe changes in the measurement strategy for this outcome since the first National Survey of Children With Special Health Care Needs in 2001. METHODS: In the nationally representative, cross-sectional 2005-2006 National Survey of Children With Special Health Care Needs, parent or guardian respondents of 18198 youth with special health care needs (aged 12-17) were asked if they have had discussions with their child's health care providers about (1) future adult providers, (2) future adult health care needs, (3) changes in health insurance, and (4) encouraging their child to take responsibility for his or her care. All 4 components had to be met for the youth to meet the overall transition core outcome. Those who had not had transition discussions reported if such discussions would have been helpful. RESULTS: Overall, 41% of youth with special health care needs met the core performance outcome for transition. Forty-two percent had discussed shifting care to an adult provider, 62% discussed their child's adult health care needs, and 34% discussed upcoming changes in health insurance. Most (78%) respondents said that providers usually or always encourage their child to take responsibility for his or her health. Non-Hispanic black or Hispanic race/ethnicity, lower income level, not speaking English, and not having a medical home reduced the odds of meeting the transition core outcome. CONCLUSIONS: Current performance on the transition core outcome leaves much room for improvement. Many parents feel that having transition-related discussions with their health care providers would be helpful. Future clinical and policy-level research should be directed at identifying barriers to, and recommending content for, health transition discussions.
2009
Lotstein DS; Ghandour R; Cash A; McGuire E; Strickland B; Newacheck P
Pediatrics
2009
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/10.1542/peds.2008-1298" target="_blank" rel="noreferrer">10.1542/peds.2008-1298</a>
Addressing transition to adult health care for adolescents with special health care needs
Cross-Sectional Studies; Female; Humans; Male; Questionnaires; Professional-Family Relations; Health Services Needs and Demand; Socioeconomic Factors; Sampling Studies; Family Characteristics; Case Management; Aging; adolescent; Parents/psychology; Health Surveys; United States/epidemiology; Continuity of Patient Care/organization & administration; poverty; Chronic Disease/epidemiology/therapy; African Americans/statistics & numerical data; European Continental Ancestry Group/statistics & numerical data; Hispanic Americans/sn [Statistics & Numerical Data]; Insurance Coverage/statistics & numerical data
OBJECTIVE: To determine the factors associated with addressing the transition from pediatric to adult-oriented health care among US adolescents with special health care needs. METHODS: Data for 4332 adolescents, 14 to 17 years of age, from the 2000-2001 National Survey of Children With Special Health Care Needs were used. The adequacy of transition services was determined by parent self-report. Explanatory variables, including parental education, family poverty status, race/ethnicity, measures of the severity and complexity of conditions, health insurance status, having a personal doctor, and the quality of the parent's relationship with the adolescent's doctor, were entered into a regression model. RESULTS: Overall, 50.2% of parents reported that they had discussed transition issues with their adolescent's doctor and 16.4% had discussed and developed a plan for addressing those needs. In a multivariate regression analysis, correlates of the adequacy of transition services included older age, female gender, complexity of health care needs, and higher quality of the parent-doctor relationship. CONCLUSIONS: Among adolescents with special health care needs, those who were older and those with more complicated needs were more likely to have addressed the transition from a pediatric to adult-oriented system of care. Furthermore, this analysis demonstrated a strong association between a high-quality parent-provider relationship and the extent to which transition issues were addressed. The importance of transition services for adolescents with less complex needs and the overall impact of health care transition services were not assessed in this study and remain important questions for future investigations.
2005
Scal P; Ireland M
Pediatrics
2005
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Journal Article
<a href="http://doi.org/10.1542/peds.2004-0458" target="_blank" rel="noreferrer">10.1542/peds.2004-0458</a>
Avoiding admission for afebrile pediatric sickle cell pain: pain management methods
Child; Humans; infant; Pain Measurement; Adult; Anemia; adolescent; Preschool; PedPal Lit; infant; Newborn; United States/epidemiology; Analgesics/therapeutic use; Patient Education; Antisickling Agents/therapeutic use; Hydroxyurea/therapeutic use; Pain/epidemiology/nursing/psychology/therapy; Relaxation Techniques; Sickle Cell/mortality/nursing/psychology/therapy
2006
Dumaplin CA
Journal Of Pediatric Health Care
2006
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Journal Article
End-of-life care in the pediatric intensive care unit: research review and recommendations
Child; Humans; Intensive Care Units; Adult; Attitude of Health Personnel; Attitude to Death; Infant Mortality; Evidence-Based Medicine; Forecasting; Practice; bereavement; Attitudes; decision making; infant; Practice Guidelines; Health Knowledge; ICU Decision Making; Parents/psychology; United States/epidemiology; Quality Assurance; Analgesia/ethics/standards; Conscious Sedation/ethics/standards; Health Care/organization & administration; Intensive Care/ethics/organization & administration/psychology; Pediatric/ethics/organization & administration; Resuscitation/ethics/standards; Terminal Care/ethics/organization & administration/psychology; Withholding Treatment/ethics/standards
Improving the quality of end-of-life care has become a national health care priority. A necessary step in this process in the pediatric intensive care unit (ICU) is examining the knowledge, attitudes,and behaviors of pediatric critical care practitioners in this area. In addition, the perspectives of bereaved parents must be uncovered as well. In this article, the empirical data in the literature on end-of-life care in the pediatric ICU are reviewed, common ethical controversies in this environment are discussed, and promising interventions for the future are presented.
2004
Burns JP; Rushton CH
Critical Care Clinics
2004
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Journal Article
<a href="http://doi.org/10.1016/j.ccc.2004.03.004" target="_blank" rel="noreferrer">10.1016/j.ccc.2004.03.004</a>
Frequency and perceived competence in providing palliative care to terminally ill patients: a survey of primary care physicians
Humans; Physician-Patient Relations; Data Collection; Physician's Practice Patterns/statistics & numerical data; United States/epidemiology; Palliative Care/statistics & numerical data; Terminally Ill/statistics & numerical data; Quality Assurance; Professional Competence/statistics & numerical data; Health Care/methods; Primary Health Care/statistics & numerical data; Terminal Care/statistics & numerical data
We surveyed primary care physicians about their involvement and perceived skills in palliative care. A survey instrument asked how frequently internal medicine and family practice physicians performed 10 palliative care items. Subjects rated their skills in each area. A majority of physicians always or frequently performed all 10 palliative care items, but fewer than 50% of respondents adequately attended to the spiritual needs and economic problems of patients. Interest in palliative care was associated with an increased frequency in performing palliative care items (P = 0.036), while training in palliative care was associated with better perceived performance (P = 0.05). Only 36% of respondents had received training in palliative care. Internists and family practitioners provide palliative care to patients, but feel their skills are lacking in certain areas. Training may improve care to patients at the end of life.
2004
Farber NJ; Urban SY; Collier VU; Metzger M; Weiner J; Boyer EG
Journal Of Pain And Symptom Management
2004
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Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2004.01.013" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2004.01.013</a>
Survival rates of children with severe neurologic disabilities: a review
Child; Humans; Survival Rate; Health Services Accessibility; Bias (Epidemiology); Nervous System Diseases/mortality; United States/epidemiology; Nutritional Failure; disabled children; Skilled Nursing Facilities
Knowledge of accurate survival rates of children with neurologic disabilities is important for third-party insurance payers planning future medical expenses. This is of particular importance to pediatric skilled nursing facilities (SNFs) that depend on financial support from governmental sources. Eyman published survival rate results from California that were extremely pessimistic and not in keeping with our clinical impressions. This led us to conduct a thorough review of our survival rates, which were much better than those reported by Eyman. Since the publication of our study, a large number of reports have appeared from many different countries, as well as further information from California using an expanded database. The survival rate data that we obtained remain consistently better than that in most recent reports. In the California results, 10-year survival rates for the most-disabled group (group 1) were reported to be 32% in 1993 and 45% in 1998, compared with 73% in our study. Eight-year survival rates for group 1 from California were reported to be 38% in 1993 and 63% in 2000, compared with our finding of 73%. The reasons for our better survival rates include the fact that all of our patients were in SNFs, where prompt medical care for acute illnesses was always provided, whereas only 3.5% of the study group was in SNFs in California. Also, the California data contained many methodologic and statistical errors, which are reviewed here.
2003
Plioplys AV
Seminars In Pediatric Neurology
2003
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Journal Article
<a href="http://doi.org/10.1016/s1071-9091(03)00020-2" target="_blank" rel="noreferrer">10.1016/s1071-9091(03)00020-2</a>
Protecting adolescents from harm. Findings from the National Longitudinal Study on Adolescent Health
Cross-Sectional Studies; Female; Humans; Male; Pregnancy; Longitudinal Studies; Mental Health; Multivariate Analysis; Adolescent Behavior; Regression Analysis; Health Behavior; adolescent; Adolescent Transitions; Risk-Taking; Health Surveys; Pregnancy in Adolescence; Sexuality; Substance-Related Disorders/epidemiology; United States/epidemiology; Violence/statistics & numerical data
CONTEXT: The main threats to adolescents' health are the risk behaviors they choose. How their social context shapes their behaviors is poorly understood. OBJECTIVE: To identify risk and protective factors at the family, school, and individual levels as they relate to 4 domains of adolescent health and morbidity: emotional health, violence, substance use, and sexuality. DESIGN: Cross-sectional analysis of interview data from the National Longitudinal Study of Adolescent Health. PARTICIPANTS: A total of 12118 adolescents in grades 7 through 12 drawn from an initial national school survey of 90118 adolescents from 80 high schools plus their feeder middle schools. SETTING: The interview was completed in the subject's home. MAIN OUTCOME MEASURES: Eight areas were assessed: emotional distress; suicidal thoughts and behaviors; violence; use of 3 substances (cigarettes, alcohol, marijuana); and 2 types of sexual behaviors (age of sexual debut and pregnancy history). Independent variables included measures of family context, school context, and individual characteristics. RESULTS: Parent-family connectedness and perceived school connectedness were protective against every health risk behavior measure except history of pregnancy. Conversely, ease of access to guns at home was associated with suicidality (grades 9-12: P
1997
Resnick MD; Bearman PS; Blum RW; Bauman KE; Harris KM; Jones J; Tabor J; Beuhring T; Sieving RE; Shew M; Ireland M; Bearinger LH; Udry JR
Jama
1997
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Journal Article
<a href="http://doi.org/10.1001/jama.1997.03550100049038" target="_blank" rel="noreferrer">10.1001/jama.1997.03550100049038</a>
Task force 1: the changing profile of congenital heart disease in adult life
Child; Cross-Sectional Studies; Female; Humans; infant; Male; Survival Rate; Adult; Prognosis; Aged; Middle Aged; Incidence; adolescent; Preschool; patient care team; infant; Adolescent Transitions; Newborn; United States/epidemiology; Heart Defects; Congenital/mortality/rehabilitation; Great Britain/epidemiology
2001
Warnes CA; Liberthson R; Danielson GK; Dore A; Harris L; Hoffman JI; Somerville J; Williams RG; Webb GD
Journal Of The American College Of Cardiology
2001
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Journal Article
<a href="http://doi.org/10.1016/s0735-1097(01)01272-4" target="_blank" rel="noreferrer">10.1016/s0735-1097(01)01272-4</a>
Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes
Cross-Sectional Studies; Female; Humans; Male; Adult; Aged; Middle Aged; Risk Factors; Cost of Illness; Incidence; 80 and over; P.H.S.; Research Support; U.S. Gov't; United States/epidemiology; Depressive Disorder/epidemiology/psychology; Activities of Daily Living/classification/psychology; Anxiety Disorders/epidemiology/psychology; Caregivers/statistics & numerical data; Dementia/epidemiology/psychology; Psychophysiologic Disorders/epidemiology/psychology
The dementia caregiving literature is reviewed with the goals of (a) assessing the prevalence and magnitude of psychiatric and physical morbidity effects among caregivers, (b) identifying individual and contextual correlates of reported health effects and their underlying causes, and (c) examining the policy relevance of observed findings. Virtually all studies report elevated levels of depressive symptomatology among caregivers, and those using diagnostic interviews report high rates of clinical depression and anxiety. The evidence is more equivocal and generally weaker for the association between caregiving and physical morbidity, such as self-rated health, number of illnesses, symptomatology, health care utilization, preventive health behaviors, and cardiovascular functioning. Across studies, psychiatric morbidity in caregivers was linked to patient problem behaviors, income, self-rated health, perceived stress, and life satisfaction. Physical morbidity was associated with patient problem behaviors and cognitive impairment, and with caregiver depression, anxiety, and perceived social support. Possible causes of reported effects and policy implications are discussed.
1995
Schulz R; O'Brien AT; Bookwala J; Fleissner K
The Gerontologist
1995
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Journal Article
<a href="http://doi.org/10.1093/geront/35.6.771" target="_blank" rel="noreferrer">10.1093/geront/35.6.771</a>
Differences in pediatric ICU mortality risk over time
Child; Humans; Intensive Care Units; Logistic Models; Prospective Studies; Age Factors; Severity of Illness Index; Risk Assessment; Hospitals; Reproducibility of Results; Predictive Value of Tests; Pediatric; ICU Decision Making; United States/epidemiology; Age Distribution; Health Care; Quality Assurance; Hospital Mortality/trends; Hospital Bed Capacity; Intensive Care/standards/trends; Pediatric/standards/statistics & numerical data/trends; University
OBJECTIVES: To compare pediatric intensive care unit (ICU) mortality risk using models from two distinct time periods; and to discuss the implications of changing mortality risk for severity systems and quality-of-care assessment. DATA SOURCES AND SETTING: Consecutive admissions (n = 10,833) from 16 pediatric ICUs across the United States that participate in the Pediatric Critical Care Study Group were recorded prospectively. Data collection occurred during a 12-mo period beginning in January 1993. METHODS: Data collection for the development and validation of the original Pediatric Risk of Mortality (PRISM) score occurred from 1980 to 1985. The original PRISM coefficients were used to calculate mortality probabilities in the current data set. Updated estimates of mortality probabilities were calculated, using coefficients from a logistic regression analysis using the original PRISM variable set. Quality-of-care tests were performed using standardized mortality ratios. RESULTS: Risk of mortality from pediatric ICU admission improved considerably between the two periods. Overall, the reduction in mortality risk averaged 15% (p < .001). Analysis of mortality risk by age indicated a large improvement for younger infants. The mortality risk for infants <1 mo improved by 39% (p < .001). Mortality risk improved by 28% (p < .001) for infants between 1 and 12 mos. Analysis of mortality risk by principal diagnosis indicated substantial improvement in respiratory diseases, including respiratory diseases developing in the perinatal period. The mortality risk for respiratory diseases improved by 45% (p < .001). The improvement in mortality risk substantially deteriorated the calibration of the original PRISM severity system (p < .001). As a result of changing mortality risk, the standardized mortality ratios across the 16 pediatric ICUs demonstrated substantial disparities, depending on the choice of models. CONCLUSIONS: This study documents differences in pediatric ICU risk of mortality over time that are consistent with a general improvement in the quality of pediatric intensive care. Despite continued widespread use of the original PRISM, recent improvements in pediatric ICU quality of care have negated its usefulness for many intended applications, including quality-of-care assessment.
1998
Tilford JM; Roberson PK; Lensing S; Fiser DH
Critical Care Medicine
1998
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Journal Article
<a href="http://doi.org/10.1097/00003246-199810000-00032" target="_blank" rel="noreferrer">10.1097/00003246-199810000-00032</a>
Long-stay patients in the pediatric intensive care unit
Child; Female; Humans; Male; Intensive Care Units; Hospital Mortality; Logistic Models; Treatment Outcome; Comorbidity; Health Services Research; Severity of Illness Index; Risk Factors; Quality of Health Care; Sensitivity and Specificity; Analysis of Variance; Predictive Value of Tests; Cost Savings; Preschool; infant; algorithms; Pediatric/utilization; ICU Decision Making; United States/epidemiology; Age Distribution; Discriminant Analysis; Patient Admission/statistics & numerical data; Length of Stay/statistics & numerical data; Emergencies; Decision Trees; Intensive Care/economics/standards
OBJECTIVE: Length of stay in the pediatric intensive care unit (PICU) is a reflection of patient severity of illness and health status, as well as PICU quality and performance. We determined the clinical profiles and relative resource use of long-stay patients (LSPs) and developed a prediction model to identify LSPs for early quality and cost saving interventions. DESIGN: Nonconcurrent cohort study. SETTING: A total of 16 randomly selected PICUs and 16 volunteer PICUs. PATIENTS: A total of 11,165 consecutive admissions to the 32 PICUs. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: LSPs were defined as patients having a length of stay greater than the 95th percentile (>12 days). Logistic regression analysis was used to determine which clinical characteristics, available within the first 24 hrs after admission, were associated with LSPs and to create a predictive algorithm. Overall, LSPs were 4.7% of the population but represented 36.1% of the days of care. Multivariate analysis indicated that the following factors are predictive of long stays: age <12 months, previous ICU admission, emergency admission, no CPR before admission, admission from another ICU or intermediate care unit, chronic care requirements (total parenteral nutrition and tracheostomy), specific diagnoses including acquired cardiac disease, pneumonia, and other respiratory disorders, having never been discharged from the hospital, need for ventilatory support or an intracranial catheter, and a Pediatric Risk of Mortality III score between 10 and 33. The performance of the prediction algorithm in both the training and validation samples for identifying LSPs was good for both discrimination (area under the receiver operating characteristics curve of 0.83 and 0.85, respectively), and calibration (goodness of fit, p = .33 and p = .16, respectively). LSPs comprised from 2.1% to 8.1% of individual ICU patients and occupied from 15.2% to 57.8% of individual ICU bed days. CONCLUSIONS: LSPs have less favorable outcomes and use more resources than non-LSPs. The clinical profile of LSPs includes those who are younger and those that require chronic care devices. A predictive algorithm could help identify patients at high risk of prolonged stays appropriate for specific interventions.
2001
Marcin JP; Slonim AD; Pollack MM; Ruttimann UE
Critical Care Medicine
2001
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Journal Article
<a href="http://doi.org/10.1097/00003246-200103000-00035" target="_blank" rel="noreferrer">10.1097/00003246-200103000-00035</a>
Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services
Child; Female; Humans; Male; Adult; adolescent; Pediatrics/statistics & numerical data; ICU Decision Making; cause of death; United States/epidemiology; Mortality/trends; Chronic Disease/epidemiology/mortality
BACKGROUND: Children with complex chronic conditions (CCCs) might benefit from pediatric supportive care services, such as home nursing, palliative care, or hospice, especially those children whose conditions are severe enough to cause death. We do not know, however, the extent of this population or how it is changing over time. OBJECTIVES: To identify trends over the past 2 decades in the pattern of deaths attributable to pediatric CCCs, examining counts and rates of CCC-attributed deaths by cause and age (infancy: <1 year old, childhood: 1-9 years old, adolescence or young adulthood: 10-24 years old) at the time of death, and to determine the average number of children living within the last 6 months of their lives. DESIGN/METHODS: We conducted a retrospective cohort study using national death certificate data and census estimates from the National Center for Health Statistics. Participants included all people 0 to 24 years old in the United States from 1979 to 1997. CCCs comprised a broad array of International Classification of Diseases, Ninth Revision codes for cardiac, malignancy, neuromuscular, respiratory, renal, gastrointestinal, immunodeficiency, metabolic, genetic, and other congenital anomalies. Trends of counts and rates were tested using negative binomial regression. RESULTS: Of the 1.75 million deaths that occurred in 0- to 24-year-olds from 1979 to 1997, 5% were attributed to cancer CCCs, 16% to noncancer CCCs, 43% to injuries, and 37% to all other causes of death. Overall, both counts and rates of CCC-attributed deaths have trended downward, with declines more pronounced and statistically significant for noncancer CCCs among infants and children, and for cancer CCCs among children, adolescents, and young adults. In 1997, deaths attributed to all CCCs accounted for 7242 infant deaths, 2835 childhood deaths, and 5109 adolescent deaths. Again, in 1997, the average numbers of children alive who would die because of a CCC within the ensuing 6-month period were 1097 infants, 1414 children, and 2548 adolescents or young adults. CONCLUSIONS: Population-based planning of pediatric supportive care services should use measures that best inform our need to provide care for time-limited events (perideath or bereavement care) versus care for ongoing needs (home nursing or hospice). Pediatric supportive care services will need to serve patients with a broad range of CCCs from infancy into adulthood.
2001
Feudtner C; Hays RM; Haynes G; et al
Pediatrics
2001
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Journal Article
<a href="http://doi.org/10.1542/peds.107.6.e99" target="_blank" rel="noreferrer">10.1542/peds.107.6.e99</a>
Issues in Islamic biomedical ethics: a primer for the pediatrician
Child; Female; Humans; Male; Adult; Attitude to Death; Religion and Medicine; Cultural Characteristics; Bioethics; adolescent; Professional Patient Relationship; United States/epidemiology; Jurisprudence; Parenting/psychology; Bioethics and Professional Ethics; Child Development/classification; Child Rearing; Human Rights/standards; Islam/psychology; Religious Approach
The United States is becoming increasingly pluralistic. Pediatricians must become familiar with the factors that affect the emotional, physical, and spiritual health of their patients that are outside the kin of the traditionally dominant value system. Although many articles have addressed the cultural and ethnic factors, very few have considered the impact of religion. Islam, as the largest and fastest-growing religion in the world, has adherent throughout the world, including the United States, with 50% of US Muslims being indigenous converts. Islam presents a complete moral, ethical, and medical framework that, while it sometimes concurs, at times diverges or even conflicts with the US secular ethical framework. This article introduces the pediatrician to the Islamic principles of ethics within the field of pediatric care and child-rearing. It demonstrates how these principles may impact outpatient and inpatient care. Special attention is also given to adolescent and end-of-life issues.
2001
Hedayat KM; Pirzadeh R
Pediatrics
2001
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Journal Article
<a href="http://doi.org/10.1542/peds.108.4.965" target="_blank" rel="noreferrer">10.1542/peds.108.4.965</a>
Association between opioid prescribing patterns and opioid overdose-related deaths
Female; Humans; Male; Young Adult; Cohort Studies; Adult; Analgesics; Aged; Middle Aged; Risk; Acute Disease; Case-Control Studies; adolescent; Physician's Practice Patterns/statistics & numerical data; Chronic disease; United States/epidemiology; Drug Prescriptions/statistics & numerical data; Opioid/administration & dosage/poisoning; Overdose/epidemiology; Pain/drug therapy; Veterans/statistics & numerical data
CONTEXT: The rate of prescription opioid-related overdose death increased substantially in the United States over the past decade. Patterns of opioid prescribing may be related to risk of overdose mortality. OBJECTIVE: To examine the association of maximum prescribed daily opioid dose and dosing schedule ("as needed," regularly scheduled, or both) with risk of opioid overdose death among patients with cancer, chronic pain, acute pain, and substance use disorders. DESIGN: Case-cohort study. SETTING: Veterans Health Administration (VHA), 2004 through 2008. PARTICIPANTS: All unintentional prescription opioid overdose decedents (n = 750) and a random sample of patients (n = 154,684) among those individuals who used medical services in 2004 or 2005 and received opioid therapy for pain. Main Outcome Measure Associations of opioid regimens (dose and schedule) with death by unintentional prescription opioid overdose in subgroups defined by clinical diagnoses, adjusting for age group, sex, race, ethnicity, and comorbid conditions. RESULTS: The frequency of fatal overdose over the study period among individuals treated with opioids was estimated to be 0.04%.The risk of overdose death was directly related to the maximum prescribed daily dose of opioid medication. The adjusted hazard ratios (HRs) associated with a maximum prescribed dose of 100 mg/d or more, compared with the dose category 1 mg/d to less than 20 mg/d, were as follows: among those with substance use disorders, adjusted HR = 4.54 (95% confidence interval [CI], 2.46-8.37; absolute risk difference approximation [ARDA] = 0.14%); among those with chronic pain, adjusted HR = 7.18 (95% CI, 4.85-10.65; ARDA = 0.25%); among those with acute pain, adjusted HR = 6.64 (95% CI, 3.31-13.31; ARDA = 0.23%); and among those with cancer, adjusted HR = 11.99 (95% CI, 4.42-32.56; ARDA = 0.45%). Receiving both as-needed and regularly scheduled doses was not associated with overdose risk after adjustment. CONCLUSION: Among patients receiving opioid prescriptions for pain, higher opioid doses were associated with increased risk of opioid overdose death.
Bohnert AS; Valenstein M; Bair MJ; Ganoczy D; McCarthy JF; Ilgen MA; Blow FC
Jama
2011
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/10.1001/jama.2011.370" target="_blank" rel="noreferrer">10.1001/jama.2011.370</a>
Increased access to palliative care and hospice services: opportunities to improve value in health care
Humans; quality of life; United States/epidemiology; Chronic Disease/therapy; Quality of Health Care/organization & administration; Needs Assessment/organization & administration; Health Services Accessibility/economics/organization & administration; Hospice Care/economics/organization & administration/utilization; Hospices/organization & administration; Palliative Care/economics/organization & administration/utilization; Patient-Centered Care/economics/organization & administration/utilization
CONTEXT: A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality, characterized by fragmentation, overuse, medical errors, and poor quality of life. METHODS: This article examines data demonstrating the impact of the U.S. health care system on clinical care outcomes and costs for the sickest and most vulnerable patients. It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services, and identifies those policy priorities necessary to strengthen access to high-quality palliative care. FINDINGS: Palliative care and hospice services improve patient-centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses. Some data suggest that, compared with the usual care, palliative care prolongs life. By helping patients get the care they need to avoid unnecessary emergency department and hospital stays and shifting the locus of care to the home or community, palliative care and hospice reduce health care spending for America's sickest and most costly patient populations. CONCLUSIONS: Policies focused on enhancing the palliative care workforce, investing in the field's science base, and increasing the availability of services in U.S. hospitals and nursing homes are needed to ensure equitable access to optimal care for seriously ill patients and those with multiple chronic conditions.
Meier DE
The Milbank Quarterly
2011
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/10.1111/j.1468-0009.2011.00632.x" target="_blank" rel="noreferrer">10.1111/j.1468-0009.2011.00632.x</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
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/10.1542/peds.2010-3225" target="_blank" rel="noreferrer">10.1542/peds.2010-3225</a>