Emily E. Johnston

Adolescent and young adult oncology patients: Disparities in access to specialized cancer centers

Adolescents and young adults (AYAs) ages 15 to 39 years with cancer continue to experience disparate survival outcomes compared with their younger and older counterparts. This may be caused in part by differential access to specialized cancer centers (SCCs), because treatment at SCCs has been associated with improved overall survival. The authors examined social and clinical factors associated with AYA use of SCCs (defined as Childrens Oncology Group‐designated or National Cancer Institute‐designated centers).

Subcutaneous panniculitis-like T-cell lymphoma: Pediatric case series demonstrating heterogeneous presentation and option for watchful waiting.

Subcutaneous panniculitis‐like T‐cell lymphoma (SPTCL) and primary cutaneous gamma delta T‐cell lymphoma (PCGD‐TCL) were initially both classified as subcutaneous panniculitis‐like T‐cell lymphoma. In 2008, SPTCL with alpha‐beta T‐cell receptor subtype was separated from primary cutaneous gamma delta T‐cell lymphomas (PCGD‐TCL). We report four pediatric cases that demonstrate the heterogeneity of each disease and show that PCGD‐TCL in children can have an indolent course, whereas SPTCL can behave aggressively. Three patients had spontaneous, durable remissions without treatment, whereas the one patient with disease progression was treated successfully. Watchful waiting may thus be appropriate for initial management of children. Pediatr Blood Cancer

Disparities in the Intensity of End-of-Life Care for Children With Cancer

This study reveals rates of and disparities in intense end-of-life care in pediatric oncology patients at the population level. 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.

Inpatient utilization and disparities: The last year of life of adolescent and young adult oncology patients in California: Hospital Utilization: AYA Oncology Decedents

Studies of adolescent and young adult (AYA) oncology end‐of‐life care utilization are critical because cancer is the leading cause of nonaccidental AYA death and end‐of‐life care contributes significantly to health care expenditures. This study was designed to determine the quantity of and disparities in inpatient utilization in the last year of life of AYAs with cancer.

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

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 Childrens 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.

Patterns of intensity of end of life care for adolescents and young adults with cancer: A population based study.

132 Background: Cancer is the leading cause of non-accidental death amongst adolescents and young adults (AYA), aged 15-39, in the U.S. It is critical to understand end of life (EOL) care of AYA cancer decedents, including use of medically intense interventions like intubation. Although desired by some, most patients prefer a natural death. We sought to determine rates of medically intense interventions at end of life for AYA cancer decedents and associated factors. METHODS Using the California Office of Statewide Health Planning and Development private administrative database linked to death certificates, we performed a retrospective population based analysis of patients aged 15-39 with cancer who died between 2000-2010. We used previously defined administrative codes indicative of intense EOL care: intubation, CPR, hospital re-admission, and ICU admission in the last 30 days of life, and location of death. The frequencies of each intense item were calculated and multivariate logistic regression was used to determine clinical (including treatment at specialty center vs non) and socio-demographic factors associated with each item and receipt of ≥ 2 items. RESULTS The 8,978 AYA cancer decedents were 46% non-Hispanic white, 29% Hispanic, 10% non-Hispanic black, 11% Asian; 21% had hematologic malignancies, 70% had solid tumors, and 9% had secondary neoplasms; 58% were hospitalized only at non-specialty centers in the last 6 months of life. 62% received ≥ 1 medically intense EOL care intervention, and 32% received > 2. Factors associated with > 2 intense EOL care interventions were: non-Hispanic black (OR 1.38, 95% CI 1.16-1.65), Hispanics (1.19, 1.06-1.35), Asians (1.30, 1.10-1.52); those sometimes (2.19, 1.87-2.56) or never (1.44, 1.26-1.65) seen at specialty centers; hematologic malignancies (1.77, 1.57-2.00 ref grp: solid tumors) whereas secondary malignancies were not associated with > 2 intense markers (0.68, 0.56-0.83). CONCLUSIONS Nearly two-thirds of the AYA cancer decedents received medically intense EOL interventions and disparities exist in receipt of such care. Further research needs to determine if the disparities are due to healthcare system, patient preference, or other factors.

Last year of life of cancer patients who are adolescents and young adults (AYA): Inpatient patterns and disparities in a population-based study.

126 Background: Cancer is the leading cause of non-accidental death among adolescents and young adults (AYA) in the US. The last year of life involves significant inpatient resources for older patients. We sought to determine the quantity and pattern of inpatient care for AYA cancer decedents in the last year of life to learn their healthcare system impact and groups to target for intervention. METHODS Using the California Office of Statewide Health Planning and Development private administrative database linked to death certificates, we performed a retrospective cross-sectional population-based analysis of patients aged 15-39 with cancer who died between 2000-2011. We calculated the number of admissions, hospital days, and percent of the cohort admitted each day in the last year of life. We determined the bed-day distribution across the population and the clinical and socio-demographic factors associated with high inpatient utilization. RESULTS The 9562 AYA cancer decedents were 45% non-Hispanic white, 30% Hispanic; 20% had hematologic malignancies, 70% had solid tumors. They were hospitalized, on average, 4.3 times and 40.6 days in the last year of life, increasing 3 months before death. Bed day occupation was skewed: 5% of the patients occupied 20% of the bed days and 18% occupied 50%. Factors associated with increased odds of being a top 5% utilizer were being Hispanic (OR: 1.48, 95% CI: 1.15-1.90, ref: non-Hispanic white), and having Acute Myelogenous Leukemia (AML) (2.7, 1.74-0.67, ref: Acute Lymphoblastic Leukemia (ALL). Factors associated with decreased odds were rural residence (0.39, 0.23-0.67, ref: urban), HMO insurance (0.58, 0.38-0.88, ref: private non-HMO), no hospitalizations at specialty centers (0.72, 0.53-0.97, ref: specialty center only), and having lymphoma or a solid tumor (ORs 0.035-0.39, CI range 0.005-0.56, ref: ALL). CONCLUSIONS AYAs dying of cancer spent 40.6 days in the hospital in their last year of life (more than 1 in 9 days) with higher rates for Hispanics, AML patients, those with urban residence, and those hospitalized at specialty centers. Further research needs to determine what is driving these patterns, if they are preventable, and if they align with patient and family wishes.