Behind the Scenes: Care Coordination Time in an Outpatient Pediatric Palliative Oncology Clinic
Oncology
Background: Integrated pediatric palliative oncology (PPO) outpatient models are emerging to assist oncologists, children, and families throughout their course with cancer. Significant time is devoted to care coordination ("nonbillable"time), but the scope, time per patient, and ratio of nonbillable to billable (NB:B) minutes are unknown. This information is crucial to designing new PPO outpatient clinics and advocating for appropriate personnel, physician time, and resources. Our objectives were to quantify nonbillable time and evaluate demographic or disease-based associations. Method(s): A single-institution one-day PPO clinic was started in July 2017. All encounters were tracked for 11 months. Administrative and PPO inpatient time were excluded. Billable and nonbillable minutes were recorded daily. Ratios of NB:B minutes by patient demographics and clinical factors were calculated using descriptive statistics and multivariate modeling. Result(s): Ninety-five patients were included [solid tumors (42, 44%), brain tumors (33, 35%), and leukemia/lymphoma (20, 21%)]. PPO completed billable visits on 52 of 95 (55%) patients and assisted without billing in the care of 43 patients (45%). Twenty-four (25%) patients were deceased. Overall NB:B ratio was 1.04 and differed among diagnoses (leukemia/lymphoma 2.5, solid tumor 0.9, and brain tumor 0.8). Deceased patients had a higher ratio of NB:B minutes than alive patients (1.9 vs. 0.8, p = 0.012). Billable and nonbillable minutes both increased over time. Conclusion(s): Care coordination in a PPO clinic is time intensive and grows with clinic volume. When devising a PPO outpatient program, this NB:B ratio should be accounted for in clinician time and personnel devoted to patient and family assistance. © Copyright 2021, Mary Ann Liebert, Inc., publishers 2021.
Brock KE; Degroote NP; Allen KE
Journal of Palliative Medicine
2021
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/10.1089/jpm.2020.0197" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0197</a>
Defining and Timing of Palliative Opportunities in Children with Central Nervous System Tumors
central nervous system; oncology; pediatric palliative care; brain tumor; palliative opportunity
BACKGROUND: Children with brain and central nervous system (CNS) tumors experience substantial challenges to their quality of life during their disease course. These challenges are opportunities for increased subspecialty palliative care (PC) involvement. Palliative opportunities have been defined in the pediatric oncology population, but the frequency, timing, and factors associated with palliative opportunities in pediatric patients with CNS tumors are unknown. METHODS: A single-institution retrospective review was performed on children ages 0-18 diagnosed with a CNS tumor who died between January 1, 2012 and November 30, 2017. Nine palliative opportunities were defined prior to data collection (progression, relapse, admission for severe symptoms, intensive care admission, bone marrow transplant, phase 1 trial, hospice, do-not-resuscitate (DNR) order). Demographic, disease, treatment, palliative opportunity, and end-of-life data were collected. Opportunities were evaluated over quartiles from diagnosis to death. RESULTS: Amongst 101 patients with a median age at death of eight years (interquartile range [IQR] = 8.0, range 0-22), there was a median of seven (IQR = 6) palliative opportunities per patient, which increased closer to death. PC consultation occurred in 34 (33.7%) patients, at a median of 2.2 months before death, and was associated with having a DNR order (P = .0028). Hospice was involved for 72 (71.3%) patients. CONCLUSION: Children with CNS tumors suffered repeated events warranting PC yet received PC support only one-third of the time. Mapping palliative opportunities over the cancer course promotes earlier timing of PC consultation which can decrease suffering and resuscitation attempts at the end-of-life.
Massie AM; Ebelhar J; Allen KE; DeGroote NP; Wasilewski-Masker K; Brock KE
Neuro-Oncology Practice
2021
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/10.1093/nop/npab020" target="_blank" rel="noreferrer noopener">10.1093/nop/npab020</a>
Differences in palliative opportunities across diagnosis groups in children with cancer.
Humans; Infant Newborn; Child; Child Preschool; Palliative Care; Retrospective Studies; Adolescent; Infant; Quality of Life; Recurrence; Only Child; Terminal Care/psychology; Neoplasms/therapy; Leukemia; Clinical Trials Phase I as Topic; Lymphoma
BACKGROUND: Childhood cancer causes significant physical and emotional stress. Patients and families benefit from palliative care (PC) to reduce symptom burden, improve quality of life, and enhance family-centered care. We evaluated palliative opportunities across leukemia/lymphoma (LL), solid tumors (ST), and central nervous system (CNS) tumor groups. PROCEDURE: A priori, nine palliative opportunities were defined: disease progression/relapse, hematopoietic stem cell transplant, phase 1 trial enrollment, admission for severe symptoms, social concerns or end-of-life (EOL) care, intensive care admission, do-not-resuscitate (DNR) status, and hospice enrollment. A single-center retrospective review was completed on 0-18-year olds with cancer who died from January 1, 2012 to November 30, 2017. Demographic, disease, and treatment data were collected. Descriptive statistics were performed. Opportunities were evaluated from diagnosis to death and across disease groups. RESULTS: Included patients (n = 296) had LL (n = 87), ST (n = 114), or CNS tumors (n = 95). Palliative opportunities were more frequent in patients with ST (median 8) and CNS tumors (median 7) versus LL (median 5, p = .0005). While patients with ST had more progression/relapse opportunities (p < .0001), patients with CNS tumors had more EOL opportunities (p < .0001), earlier PC consultation, DNR status, and hospice enrollment. Palliative opportunities increased toward the EOL in all diseases (p < .0001). PC was consulted in 108 (36%) patients: LL (48%), ST (30%), and CNS (34%, p = .02). CONCLUSIONS: All children with cancer incur many events warranting PC support. Patients with ST and CNS tumors had more palliative opportunities than LL, yet received less subspecialty PC. Understanding palliative opportunities within each disease group can guide PC utilization to ease patient and family stress.
Ebelhar J; DeGroote NP; Massie AM; Labudde E; Allen KE; Castellino SM; Wasilewski-Masker K; Brock KE
Pediatric Blood and Cancer
2023
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/10.1002/pbc.30081" target="_blank" rel="noreferrer noopener">10.1002/pbc.30081</a>
Evaluating Palliative Opportunities Across the Age Spectrum in Children and Adolescent Patients with Cancer
pediatric palliative care; age; end of life; palliative opportunity
Purpose: Adolescent patients with cancer experience unique stressors due to their developmental stage, with increased physical, emotional, and social distress. Palliative care (PC) serves an important role in pediatric cancer care. We examined "palliative opportunities," or events during a patient's cancer course where subspecialty PC would be warranted and compared opportunities between adolescents and younger patients. Methods: Patients from a single center, 0-18 years of age at cancer diagnosis, who died from January 1, 2012, to November 30, 2017, were included. In this secondary analysis, patients were divided into cohorts based on age at diagnosis: 0-12 and 13-18 years. Demographic, disease, and treatment data were collected. Descriptive statistics and modeling were performed. Number, type, and timing of palliative opportunities and PC consultation timing and reason were evaluated across cohorts. Results: Of the 296 patients included for analysis, 27.7% were 13-18 years (82/296) at diagnosis. Frequency of palliative opportunities did not differ by age (median 7.0 [interquartile range 4.0 and 10.0] in both cohorts). PC consultation occurred in 36.5% (108/296), with neither rate nor timing differing by age group. PC consultations in adolescents were more often for symptom management (p = 0.0001). Adolescent patients were less likely to have a do-not-resuscitate order placed before death (61.0%, 50/82) compared to younger patients (73.8%, 158/214, p = 0.03). Conclusion: Adolescent patients with cancer did not experience more palliative opportunities than younger patients in this cohort, although they often have challenging psychological, family, and social stressors that were not identified. Incorporating additional palliative opportunities could enhance identification of stress and symptoms in adolescents with cancer such that PC could be timed to meet their needs.
Labudde EJ; DeGroote NP; Ebelhar J; Massie AM; Allen KE; Castellino SM; Wasilewski-Masker K; Brock KE
Journal of Adolescent and Young Adult Oncology
2021
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/10.1089/jayao.2021.0081" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0081</a>
Evaluating Palliative Opportunities in Pediatric Patients with Leukemia and Lymphoma
lymphoma; oncology; pediatric palliative care; end-of-life; leukemia; palliative opportunity
BACKGROUND: Despite favorable prognoses, pediatric patients with hematologic malignancies experience significant challenges that may lead to diminished quality of life or family stress. They are less likely to receive subspecialty palliative care (PC) consultation and often undergo intensive end-of-life (EOL) care. We examined "palliative opportunities," or events when the integration of PC would have the greatest impact, present during a patient's hematologic malignancy course and relevant associations. METHODS: A single-center retrospective review was conducted on patients aged 0-18 years with a hematologic malignancy who died between 1/1/12 and 11/30/17. Demographic, disease, and treatment data were collected. A priori, nine palliative opportunity categories were defined. Descriptive statistics were performed. Palliative opportunities were evaluated over temporal quartiles from diagnosis to death. Timing and rationale of pediatric PC consultation were evaluated. RESULTS: Patients (n = 92) had a median of 5.0 (interquartile range [IQR] 6.0) palliative opportunities, incurring 522 total opportunities, increasing toward the EOL. Number and type of opportunities did not differ by demographics. PC consultation was most common in patients with lymphoid leukemia (50.9%, 28/55) and myeloid leukemia (48.5%, 16/33) versus lymphoma (0%, 0/4, p = 0.14). Forty-four of ninety-two patients (47.8%) received PC consultation a median of 1.8 months (IQR 4.1) prior to death. Receipt of PC was associated with transplant status (p = 0.0018) and a higher number of prior palliative opportunities (p = 0.0005); 70.3% (367/522) of palliative opportunities occurred without PC. CONCLUSION: Patients with hematologic malignancies experience many opportunities warranting PC support. Identifying opportunities for ideal timing of PC involvement may benefit patients with hematologic cancers and their caregivers.
Labudde EJ; DeGroote NP; Smith S; Ebelhar J; Allen KE; Castellino SM; Wasilewski-Masker K; Brock KE
Cancer Medicine
2021
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/10.1002/cam4.3862" target="_blank" rel="noreferrer noopener">10.1002/cam4.3862</a>
Feasibility, Acceptability, and Education of Pediatric Oncology Providers Before and After an Embedded Pediatric Palliative Oncology Clinic
Oncology
PURPOSE: Most pediatric palliative care (PPC) education is trainee-directed, didactic, or simulation-based and therefore limited in scope, realism, and audience. We explored whether an embedded pediatric palliative oncology (PPO) clinic is associated with improved pediatric oncology provider palliative care comfort, knowledge, and attitudes toward PPC and if the model is feasible for both clinical care and education of providers of all levels. METHOD(S): Oncology providers (oncologists, advanced practice providers, and fellows) were enrolled in this study. Based on interaction with the PPO clinic, two cohorts were defined: PPO providers (n = 11, 37.9%) and non-PPO providers (n = 18, 62.1%). Providers in both groups responded to qualitative and quantitative questionnaires about the feasibility and acceptability of PPO clinic, their attitudes toward PPC, and knowledge and comfort in PPC concepts at baseline and 1 year. Descriptive statistics were performed; demographic and outcome variables across cohorts by PPO grouping and experience were compared. RESULT(S): All 29 pediatric oncology providers reported acceptability of a PPO clinic and favorable attitudes about PPC. The most feasible clinic model was oncology followed by PPO visits. Non-PPO group and less experienced (<= 10 years) providers had greater improvement in knowledge and comfort with PPC skills than PPO group or more experienced providers. Providers lacked comfort in non-pain symptom management skills. CONCLUSION(S): This embedded PPO clinic model was feasible, acceptable, and highly rated by responding oncology clinicians, but was insufficient as a sole method of educating multidisciplinary oncology providers. Methods of combining clinical and formal education are needed to impart sustained educational change.
Falk EE; Allen KE; DeGroote NP; Wasilewski-Masker K; Brock KE
JCO Oncology Practice
2021
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/OP.20.00881" target="_blank" rel="noreferrer noopener">10.1200/OP.20.00881</a>
Relationship of Race and Ethnicity on Access, Timing, and Disparities in Pediatric Palliative Care for Children with Cancer
Oncology
PURPOSE: Pediatric palliative care (PPC) improves quality of life for children and adolescents with cancer. Little is known about disparities between different racial and ethnic groups in the frequency and timing of PPC referrals. We evaluated the impact of race and ethnicity on the frequency and timing of PPC referral after initiation of an embedded PPO clinic where no formal consultation triggers exist. METHODS: Patients with cancer between 0 and 25 years at diagnosis who experienced a high-risk event between July 2015 and June 2018 were eligible. Demographic, disease, and PPC information were obtained. Descriptive statistics and logistic regression were used to assess likelihood of receiving PPC services by race/ethnicity. RESULTS: Of 426 patients who experienced a high-risk event, 48% were non-Hispanic White, 31% were non-Hispanic Black, 15% were Hispanic of any race, and 4% were non-Hispanic Asian. No significant differences were found between race/ethnicity and age at diagnosis/death, sex, and diagnosis. PPC consultation (p = 0.03) differed by race. Non-Hispanic Black patients were 1.7 times more likely than non-Hispanic White patients to receive PPC after adjustment (p = 0.01). White patients spent less days in the hospital in the last 90 days of life (3.0 days) compared with Black (8.0), Asian (12.5), or Hispanic patients (14.0, p = 0.009) CONCLUSION: Disparities exist in patients receiving pediatric oncology and PPC services. Cultural tendencies as well as unconscious and cultural biases may affect PPC referral by race and ethnicity. Better understanding of cultural tendencies and biases may improve end-of-life outcomes for children and young adults with cancer.
DeGroote NP; Allen KE; Falk EE; Velozzi-Averhoff C; Wasilewski-Masker K; Johnson K; Brock KE
Supportive Care in Cancer
2022
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/10.1007/s00520-021-06500-6" target="_blank" rel="noreferrer noopener">10.1007/s00520-021-06500-6</a>