scholarly journals End-of-Life Intensity for Adolescents and Young Adults With Cancer: A Californian Population-Based Study That Shows Disparities

2017 ◽  
Vol 13 (9) ◽  
pp. e770-e781 ◽  
Author(s):  
Emily E. Johnston ◽  
Elysia Alvarez ◽  
Olga Saynina ◽  
Lee Sanders ◽  
Smita Bhatia ◽  
...  

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 for AYA decedents with cancer—especially the effect of care received at specialty versus nonspecialty centers—remains understudied. Methods: We conducted a retrospective, population-based analysis with the California administrative discharge database that is linked to death certificates. The cohort included Californians age 15 to 39 years who died between 2000 and 2011 with cancer. Intense end-of-life interventions included readmission, admission to an intensive care unit, intubation in the last month of life, and in-hospital death. Specialty centers were defined as Children’s Oncology Group centers and National Cancer Institute–designated comprehensive cancer centers. Results: Of the 12,938 AYA cancer decedents, 59% received at least one intense end-of-life care intervention, and 30% received two or more. Patients treated at nonspecialty centers were more likely than those at specialty-care centers to receive two or more intense interventions (odds ratio [OR], 1.46; 95% CI, 1.32 to 1.62). Sociodemographic and clinical factors associated with two or more intense interventions included minority race/ethnicity (Black [OR, 1.35, 95% CI, 1.17 to 1.56]; Hispanic [OR, 1.24; 95% CI, 1.12 to 1.36]; non-Hispanic white: reference), younger age (15 to 21 years [OR, 1.36; 95% CI, 1.19 to 1.56; 22 to 29 years [OR,1.26; 95% CI,1.14 to 1.39]; ≥ 30 years: reference), and hematologic malignancies (OR, 1.53; 95% CI, 1.41 to 1.66; solid tumors: reference). Conclusion: Thirty percent of AYA cancer decedents received two or more high-intensity end-of-life interventions. In addition to sociodemographic and clinical characteristics, hospitalization in a nonspecialty center was associated with high-intensity end-of-life care. Additional research is needed to determine if these disparities are consistent with patient preference.

2016 ◽  
Vol 34 (15_suppl) ◽  
pp. e21518-e21518
Author(s):  
Emily E. Johnston ◽  
Elysia Marie Alvarez ◽  
Olga Saynina ◽  
Lee Sanders ◽  
Smita Bhatia ◽  
...  

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 10574-10574
Author(s):  
Emily E. Johnston ◽  
Elysia Marie Alvarez ◽  
Olga Saynina ◽  
Lee Sanders ◽  
Smita Bhatia ◽  
...  

10574 Background: There is growing evidence that adult oncology patients who know they are dying choose less intense care. Further, high intensity care is associated with worse caregiver outcomes. Little is known about pediatric oncology end-of-life care intensity. Methods: Using the California Office of Statewide Health Planning and Development administrative database linked to death certificates, we performed a retrospective population based analysis of cancer patients aged 0-21 who died between 2000 and 2011. The frequency of previously defined end-of-life intensity markers (hospital death, intense medical interventions, IV chemotherapy, and gastrostomy and tracheostomy tube placement) were calculated and multivariable logistic regression was used to determine clinical and sociodemographic factors associated with > 2 intensity markers (as above), intense medical intervention (cardiopulmonary resuscitation, intubation, ICU admission, or hemodialysis), and hospital death. Results: The 3,732 pediatric cancer decedents were 34% non-Hispanic whites and 45% Hispanic; 41% had hematologic malignancies and 59% solid tumors. The most prevalent intensity markers included: hospital death (63%) and ICU admission (20%). 65% had > 1 intensity marker, 23% > 2, and 22% > 1 intense medical intervention. There was a bimodal association between age and intensity: the youngest patients (age < 5) and adolescent patients (age 15-21) were more likely to receive intense care: < 5y (intense medical intervention: OR = 1.42; 95% CI, 1.1-1.9; hospital death: OR = 1.72; 95% CI, 1.4-2.2; > 2 markers: OR = 1.37, 95% CI 1.1-1.8); 15-21y (intense medical: OR = 1.48; 95% CI, 1.2-1.9; hospital death: OR = 1.39; 95% CI, 1.1-1.7; > 2 markers: OR = 1.35, 1.1-1.7) (references: 5-9y). Other factors associated with intensity included, hematologic malignancies, minority status, and death between 2008 and 2011 vs. < 2008. Conclusions: Nearly two-thirds of the pediatric cancer decedents had ≥1 marker of intense care and disparities exist. Patients < 5 and adolescents were more likely to receive intense end-of-life care. Further research needs to determine if these rates and variation are consistent with patient goals and factors associated with goal concurrent care.


PEDIATRICS ◽  
2012 ◽  
Vol 130 (5) ◽  
pp. 897-905 ◽  
Author(s):  
L. Wiener ◽  
S. Zadeh ◽  
H. Battles ◽  
K. Baird ◽  
E. Ballard ◽  
...  

2016 ◽  
Vol 34 (15_suppl) ◽  
pp. 10521-10521
Author(s):  
Sumit Gupta ◽  
Rinku Sutradhar ◽  
Jason D Pole ◽  
Alisha Kassam ◽  
Adam Rapoport ◽  
...  

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 10559-10559
Author(s):  
Hallie Coltin ◽  
Adam Rapoport ◽  
Chenthila Nagamuthu ◽  
Nancy N. Baxter ◽  
Paul C. Nathan ◽  
...  

10559 Background: End-of-life (EOL) care in adolescents and young adults (AYA) with cancer is poorly characterized, though this group may be at risk of elevated rates of high-intensity (HI) care and consequently, increased EOL suffering. Few population-based studies exist, and are limited by incomplete clinical information. AYA care patterns can vary by locus of care (LOC – pediatric v. adult), but LOC disparities in AYA EOL care are unstudied. Methods: We conducted a retrospective decedent population-based cohort study of all Ontario AYA diagnosed between 15-21 years of age with 6 prevalent primary cancers between 1992-2012, who died ≤5 years from diagnosis. Chart-abstracted clinical data were linked to health services data. The primary composite outcome (HI-EOL care) included any of: intravenous chemotherapy ≤14 days from death; > 1 emergency department visit ≤30 days from death; or > 1 hospitalization or intensive care unit (ICU) admission ≤30 days from death. Secondary outcomes included measures of the most invasive (MI) EOL care: mechanical ventilation ≤14 days from death, and death in the ICU. Factors associated with HI-EOL were examined. Results: Of 483 patients, 292 (60.5%) experienced HI-EOL care, 98 (20.3%) were mechanically ventilated ≤14 days from death, and 110 (22.8%) died in the ICU. Patients with hematological malignancies (v. solid tumors) were at greatest risk of HI-EOL care (OR, 2.3; 95CI, 1.5-3.5, p < 0.01), mechanical ventilation (OR, 5.4; 95CI, 3.0-9.7, p < 0.01), and death in an ICU (OR, 4.9; 95CI, 2.8-8.5, p < 0.01). AYA who died in a pediatric center were substantially more likely to experience MI-EOL measures compared to those dying in adult centers (mechanical ventilation, OR 3.2, 95CI 1.3-7.6, p = 0.01). Assessment of interactions showed LOC-based disparities widening over the study period (ICU death in pediatric v. adult centres: early period OR 0.9, 95CI 0.3-2.9, p = 0.91; late period OR 3.3, 95CI 1.2-9.2, p = 0.02; interaction term p = 0.04). AYA living in rural areas were also at higher risk of experiencing mechanical ventilation (OR, 2.0; 95CI, 1.0-3.8, p = 0.04) and death in ICU (OR, 2.1; 95CI, 1.1-4.0, p = 0.02). Conclusions: AYA with cancer experience high rates of HI-EOL care, with patients in pediatric centers and those living in rural areas at highest risk of MI-EOL care. Our study is the first to identify LOC-based disparities in AYA EOL care. Future studies should explore mechanisms underlying these disparities, including potential differences in palliative care services.


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