Disparities in Inpatient Intensity of End-of-Life Care for Complex Chronic Conditions
BACKGROUND: Children with complex chronic conditions (CCCs) require a disproportionate share of health care services and have high mortality rates, but little is known about their end-of-life care. METHODS: We performed a retrospective population-based analysis using a California State administrative database of children aged 1 to 21 years with a CCC who died of disease-related causes between 2000 and 2013. Rates of and sociodemographic and clinical factors associated with previously defined inpatient end-of-life intensity indicators were determined. The intensity indicators included: (1) hospital death, (2) receipt of a medically intense intervention within 30 days of death (ICU admission, cardiopulmonary resuscitation, hemodialysis, and/or intubation), and (3) having >/=2 intensity markers (including hospital death). RESULTS: There were 8654 children in the study population with a mean death age of 11.8 years (SD 6.8). The 3 most common CCC categories were neuromuscular (47%), malignancy (43%), and cardiovascular (42%). Sixty-six percent of the children died in the hospital, 36% had a medically intense intervention in the last 30 days of life, and 35% had >/=2 intensity markers. Living in a low-income neighborhood was associated with increased odds of hospital death, a medically intense intervention, and >/=2 intensity markers. Hispanic and "other" race and/or ethnicity were associated with hospital death and >/=2 intensity markers. Age 15 to 21 years was associated with hospital death, a medically intense intervention, and >/=2 intensity markers. CONCLUSIONS: Sociodemographic disparities in the intensity of end-of-life care for children with CCCs raise concerns about whether all children are receiving high-quality and goal-concordant end-of-life care.
Johnston E E; Bogetz J; Saynina O; Chamberlain L J; Bhatia S; Sanders L
Pediatrics
2019
<a href="http://doi.org/10.1542/peds.2018-2228" target="_blank" rel="noreferrer noopener">10.1542/peds.2018-2228</a>
Status Complexicus? The Emergence of Pediatric Complex Care
Discourse about childhood chronic conditions has transitioned in the last decade from focusing primarily on broad groups of children with special health care needs to concentrating in large part on smaller groups of children with medical complexity (CMC). Although a variety of definitions have been applied, the term CMC has most commonly been defined as children and youth with serious chronic conditions, substantial functional limitations, increased health and other service needs, and increased health care costs. The increasing attention paid to CMC has occurred because these children are growing in impact, represent a disproportionate share of health system costs, and require policy and programmatic interventions that differ in many ways from broader groups of children with special health care needs. But will this change in focus lead to meaningful changes in outcomes for children with serious chronic diseases, or is the pediatric community simply adopting terminology with resonance in adult-focused health systems? In this article, we will explore the implications of the rapid emergence of pediatric complex care in child health services practice and research. As an emerging field, pediatric care systems should thoughtfully and rapidly develop evidence-based solutions to the new challenges of caring for CMC, including (1) clearer definitions of the target population, (2) a more appropriate incorporation of components of care that occur outside of hospitals, and (3) a more comprehensive outcomes measurement framework, including the recognition of potential limitations of cost containment as a target for improved care for CMC.
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).
Cohen E; Berry JG; Sanders L; Schor EL; Wise PH
Pediatrics
2018
<a href="http://doi.org/10.1542/peds.2017-1284e" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-1284e</a>
End-of-Life Intensity for Adolescents and Young Adults With Cancer: A Californian Population-Based Study That Shows Disparities
Adolescence; Adult; Age Factors; California; Childhood Neoplasms -- Therapy -- California; Confidence Intervals; Death Certificates; Descriptive Statistics; Healthcare Disparities -- California; Hematologic Neoplasms -- Therapy -- California; Hispanics; Hospitalization; Hospital Mortality; Human; Intensive Care Units; Intubation; Minority Groups; Neoplasms -- Therapy -- California; Odds Ratio; Oncologic Care -- California; Race Factors; Readmission; Retrospective Design; Socioeconomic Factors; Terminal Care -- California; Whites; Young Adult
Purpose Cancer is the leading cause of nonaccidental death among adolescents and young adults (AYAs). High-intensity end-of-life care is expensive and may not be consistent with patient goals. However,the intensity of end-of-life care forAYAdecedents with cancer--especially the effect of care received at specialty versus nonspecialty centers--remains understudied.
Johnston EE; Alvarez E; Saynina O; Sanders L; Bhatia S; Chamberlain LJ
Journal Of Oncology Practice
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1200/jop.2016.020586" target="_blank" rel="noreferrer">10.1200/jop.2016.020586</a>
Disparities in the intensity of end-of-life care for children with cancer
Childhood Cancer; Health Care Disparity; Terminal Care; Adolescent; Adult; Article; Cancer Chemotherapy; Caucasian; Child; Childhood Mortality; Cohort Analysis; Controlled Study; Demography; Female; Hematologic Malignancy; Hemodialysis; Hospital Admission; Hospital Mortality; Human; Infant; Intensive Care Unit; Intubation; Major Clinical Study; Male; Newborn; Population Research; Priority Journal; Resuscitation; Retrospective Study
BACKGROUND: Many adult patients with cancer who know they are dying choose less intense care; additionally, high-intensity care is associated with worse caregiver outcomes. Little is known about intensity of end-of-life care in children with cancer. METHODS: By using the California Office of Statewide Health Planning and Development administrative database, we performed a population-based analysis of patients with cancer aged 0 to 21 who died between 2000 and 2011. Rates of and sociodemographic and clinical factors associated with previously-defined end-of-life intensity indicators were determined. The intensity indicators included an intense medical intervention (cardiopulmonary resuscitation, intubation, ICU admission, or hemodialysis) within 30 days of death, intravenous chemotherapy within 14 days of death, and hospital death. RESULTS: The 3732 patients were 34% non-Hispanic white, and 41% had hematologic malignancies. The most prevalent intensity indicators were hospital death (63%) and ICU admission (20%). Sixty-five percent had >=1 intensity indicator, 23% >=2, and 22% >=1 intense medical intervention. There was a bimodal association between age and intensity: Ages <5 years and 15 to 21 years was associated with intense care. Patients with hematologic malignancies were more likely to have high-intensity end-of-life care, as were patients from underrepresented minorities, those who lived closer to the hospital, those who received care at a nonspecialty center (neither Children's Oncology Group nor National Cancer Institute Designated Cancer Center), and those receiving care after 2008. CONCLUSIONS: Nearly two-thirds of children who died of cancer experienced intense end-of-life care. Further research needs to determine if these rates and disparities are consistent with patient and/or family goals.
Johnston EE; Alvarez E; Saynina O; Sanders L; Bhatia S; Chamberlain LJ
Pediatrics
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2017-0671" target="_blank" rel="noreferrer">10.1542/peds.2017-0671</a>10.1542/peds.2017-0671