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

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 132-132 ◽  
Author(s):  
Emily E. Johnston ◽  
Elysia Marie Alvarez ◽  
Olga Saynina ◽  
Lee Sanders ◽  
Smita Bhatia ◽  
...  
Keyword(s):  
Young Adults ◽  
End Of Life ◽  
Solid Tumors ◽  
Health Planning ◽  
Hematologic Malignancies ◽  
Population Based ◽  
Adolescents And Young Adults ◽  
Secondary Neoplasms ◽  
Factors Associated ◽  
Eol Care

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.

Impact of Palliative Care Involvement on End-of-Life Care Patterns Among Adolescents and Young Adults With Cancer: A Population-Based Cohort Study

2021 ◽  
pp. JCO.20.03698
Author(s):  
Alisha Kassam ◽  
Abha Gupta ◽  
Adam Rapoport ◽  
Amirrtha Srikanthan ◽  
Rinku Sutradhar ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Palliative Care ◽  
Young Adults ◽  
End Of Life ◽  
Population Level ◽  
Hematologic Malignancies ◽  
Population Based ◽  
Adolescents And Young Adults ◽  
Eol Care ◽  
The Impact

PURPOSE Evidence suggests that adolescents and young adults (AYAs) with cancer (defined as age 15-39 years) receive high-intensity (HI) medical care at the end-of-life (EOL). Previous population-level studies are limited and lack information on the impact of palliative care (PC) provision. We evaluated prevalence and predictors of HI-EOL care in AYAs with cancer in Ontario, Canada. A secondary aim was to evaluate the impact of PC physicians on the intensity of EOL care in AYAs. METHODS A retrospective decedent cohort of AYAs with cancer who died between 2000 and 2017 in Ontario, Canada, was assembled using a provincial registry and linked to population-based health care data. On the basis of previous studies, the primary composite measure HI-EOL care included any of the following: intravenous chemotherapy < 14 days from death, more than one emergency department visit, and more than one hospitalization or intensive care unit admission < 30 days from death. Secondary measures included the most invasive (MI) EOL care (eg, mechanical ventilation < 14 days from death) and PC physician involvement. We determined predictors of outcomes using appropriate regression models. RESULTS Of 7,122 AYAs, 43.8% experienced HI-EOL care. PC physician involvement (odds ratio [OR], 0.57; 95% CI, 0.51 to 0.63) and older age at death (OR, 0.60; 95% CI, 0.48 to 0.74) were associated with a lower risk of HI-EOL care. AYAs with hematologic malignancies were at highest risk for HI and MI-EOL care. PC physician involvement substantially reduced the odds of mechanical ventilation at EOL (OR, 0.36; 95% CI, 0.30 to 0.43). CONCLUSION A large proportion of AYAs with cancer experience HI-EOL care. Our study provides strong evidence that PC physician involvement can help mitigate the risk of HI and MI-EOL care in AYAs with cancer.

Prevalence and predictors of high-intensity end-of-life care among adolescents and young adults with cancer in Ontario: a population-based study using the IMPACT cohort.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 10559-10559
Author(s):  
Hallie Coltin ◽  
Adam Rapoport ◽  
Chenthila Nagamuthu ◽  
Nancy N. Baxter ◽  
Paul C. Nathan ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Young Adults ◽  
End Of Life ◽  
Rural Areas ◽  
High Intensity ◽  
Early Period ◽  
Population Based ◽  
Adolescents And Young Adults ◽  
Eol Care ◽  
The Impact

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.

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

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 126-126
Author(s):  
Emily E. Johnston ◽  
Elysia Marie Alvarez ◽  
Olga Saynina ◽  
Lee Sanders ◽  
Smita Bhatia ◽  
...  
Keyword(s):  
Young Adults ◽  
Lymphoblastic Leukemia ◽  
Health Planning ◽  
Population Based ◽  
Myelogenous Leukemia ◽  
Adolescents And Young Adults ◽  
Administrative Database ◽  
Cross Sectional ◽  
Factors Associated ◽  
Hispanic White

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.

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 ◽  
...  
Keyword(s):  
Young Adults ◽  
End Of Life ◽  
High Intensity ◽  
End Of Life Care ◽  
Hematologic Malignancies ◽  
Population Based ◽  
Adolescents And Young Adults ◽  
Hospital Death ◽  
Life Care ◽  
Patient Goals

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.

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

2016 ◽  
Vol 34 (15_suppl) ◽  
pp. e21518-e21518
Author(s):  
Emily E. Johnston ◽  
Elysia Marie Alvarez ◽  
Olga Saynina ◽  
Lee Sanders ◽  
Smita Bhatia ◽  
...  
Keyword(s):  
Young Adults ◽  
End Of Life ◽  
End Of Life Care ◽  
Population Based ◽  
Adolescents And Young Adults ◽  
Life Care ◽  
Population Based Study

Intensity of end-of life-care in children with cancer: A population-based study.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 10574-10574
Author(s):  
Emily E. Johnston ◽  
Elysia Marie Alvarez ◽  
Olga Saynina ◽  
Lee Sanders ◽  
Smita Bhatia ◽  
...  
Keyword(s):  
End Of Life ◽  
Pediatric Cancer ◽  
End Of Life Care ◽  
Hematologic Malignancies ◽  
Population Based ◽  
Medical Intervention ◽  
Hospital Death ◽  
Life Care ◽  
Factors Associated ◽  
To Receive

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.

scholarly journals Barriers to Optimal End-of-Life Care for Adolescents and Young Adults With Cancer: Bereaved Caregiver Perspectives

2021 ◽  
Vol 19 (5) ◽  
pp. 528-533
Author(s):  
Jennifer W. Mack ◽  
Erin R. Currie ◽  
Vincent Martello ◽  
Jordan Gittzus ◽  
Asisa Isack ◽  
...  
Keyword(s):  
Young Adults ◽  
End Of Life ◽  
Family Caregivers ◽  
Emotional Support ◽  
Poor Prognosis ◽  
Care Delivery ◽  
Qualitative Interviews ◽  
Adolescents And Young Adults ◽  
Eol Care

Background: Adolescents and young adults (AYAs; aged 15–39 years) with cancer frequently receive intensive measures at the end of life (EoL), but the perspectives of AYAs and their family members on barriers to optimal EoL care are not well understood. Methods: We conducted qualitative interviews with 28 bereaved caregivers of AYAs with cancer who died in 2013 through 2016 after receiving treatment at 1 of 3 sites (University of Alabama at Birmingham, University of Iowa, or University of California San Diego). Interviews focused on ways that EoL care could have better met the needs of the AYAs. Content analysis was performed to identify relevant themes. Results: Most participating caregivers were White and female, and nearly half had graduated from college. A total of 46% of AYAs were insured by Medicaid or other public insurance; 61% used hospice, 46% used palliative care, and 43% died at home. Caregivers noted 3 main barriers to optimal EoL care: (1) delayed or absent communication about prognosis, which in turn delayed care focused on comfort and quality of life; (2) inadequate emotional support of AYAs and caregivers, many of whom experienced distress and difficulty accepting the poor prognosis; and (3) a lack of home care models that would allow concurrent life-prolonging and palliative therapies, and consequently suboptimal supported goals of AYAs to live as long and as well as possible. Delayed or absent prognosis communication created lingering regret among some family caregivers, who lost the opportunity to support, comfort, and hold meaningful conversations with their loved ones. Conclusions: Bereaved family caregivers of AYAs with cancer noted a need for timely prognostic communication, emotional support to enhance acceptance of a poor prognosis, and care delivery models that would support both life-prolonging and palliative goals of care. Work to address these challenges offers the potential to improve the quality of EoL care for young people with cancer.

Billed palliative care services and end-of-life care in patients with hematologic malignancies.

2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 43-43
Author(s):  
Vinay Rao ◽  
Adam J. Olszewski ◽  
Pamela Egan ◽  
Thomas William LeBlanc ◽  
Emmanuelle Belanger
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Solid Tumors ◽  
Hospital Admissions ◽  
Myeloproliferative Neoplasm ◽  
Hematologic Malignancies ◽  
Quality Metrics ◽  
Care Quality ◽  
Medicare Beneficiaries ◽  
Eol Care

43 Background: Patients (pts) with hematologic malignancies (HMs) often receive aggressive care at the end of life (EOL), leading to lower quality of life. Early palliative care (PC) may improve EOL care, but its benefits are less established in HMs than in solid tumors. We sought to describe the use of billed PC services (BPCS) among Medicare beneficiaries with HMs and associated EOL quality measures. Methods: Using the linked SEER-Medicare registry, we studied Medicare beneficiaries diagnosed with leukemia, lymphoma, myeloma, myelodysplastic syndrome, or myeloproliferative neoplasm who died from 2001-2015. We described trends in the use of BPCS (identified by codes in clinician encounter claims). Among pts surviving >30 days from diagnosis, we compared baseline characteristics and EOL care quality metrics for pts with and without “early BPCS” (initiated >30 days before death). Results: The proportion of pts ( N=139,191, median age 81 years) with any BPCS increased from 0.4% in 2001 to 13.3% in 2015. Median time from first BPCS encounter to death was 10 days and 84.3% occurred during hospital admissions. Use of early BPCS was rare (from 0.2% in 2001 to 4.3% in 2015, with 28% of all first BPCS occurring early) and more frequent in acute leukemia, among black pts, those with higher comorbidity indices or poor performance statuses, and those receiving chemotherapy. Receipt of early BPCS was associated with improved EOL care quality metrics (see Table). Conclusions: Use of BPCS among Medicare beneficiaries with HMs has steeply increased in recent years, but most encounters still occur within days of death. Early BPCS are associated with better EOL care quality metrics similar to those observed in solid tumors. Our results support the need for prospective trials of early PC for pts with HMs. [Table: see text]

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