Palliative care considerations and practices for adolescents and young adults with cancer
adolescents; cancer; oncology; young adults; pediatric palliative care; practice considerations
The definition of adolescents and young adults (AYAs) in oncology varies with upper limits up to age 39. Younger AYAs, ages 12-24 years, are often cared for within pediatrics. In caring for AYAs with cancer, there are unique considerations that become even more important to recognize, acknowledge, and address in AYAs with life-threatening cancer receiving palliative care. This review highlights important factors such as psychosocial development, cultural considerations, and support structure, which should be considered when providing palliative care to AYAs with cancer during the various stages of care: introduction of palliative care; symptom management; advanced care planning (ACP); end-of-life (EOL) care; and bereavement. Copyright © 2020 Wiley Periodicals LLC
Upshaw N C; Roche A; Gleditsch K; Connelly E; Wasilewski-Masker K; Brock K E
Pediatric Blood and Cancer
2020
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.28781" target="_blank" rel="noreferrer noopener">10.1002/pbc.28781</a>
Association of a pediatric palliative oncology clinic on palliative care access, timing and location of care for children with cancer
Pediatric oncology; Pediatric palliative care; Supportive care; End-of-life
BACKGROUND: Most pediatric palliative care (PPC) services are inpatient consultation services and do not reach patients and families in the outpatient and home settings, where a vast majority of oncology care occurs. We explored whether an embedded pediatric palliative oncology (PPO) clinic is associated with receipt and timing of PPC and hospital days in the last 90 days of life. METHODS: Oncology patients (ages 0-25) with a high-risk event (death, relapse/progression, and/or phase I/II clinical trial enrollment) between 07/01/2015 and 06/30/2018 were included. PPO clinic started July 2017. Two cohorts were defined: pre-PPO (high-risk event(s) occurring 07/01/2015-06/30/2017) and post-PPO (high-risk event(s) occurring 07/01/2017-06/30/2018). Descriptive statistics were performed; demographic, disease course, and outcomes variables across cohorts were compared. RESULTS: A total of 426 patients were included (pre-PPO n = 235; post-PPO n = 191). Forty-seven patients with events in both pre- and post-PPO cohorts were included in the post-PPO cohort. Mean age at diagnosis was 8 years. Diagnoses were evenly distributed among solid tumors, brain tumors, and leukemia/lymphoma. Post-PPO cohort patients received PPC more often (45.6% vs. 21.3%, p < 0.0001), for a longer time before death than the pre-PPO cohort (median 88 vs. 32 days, p = 0.027), and spent fewer days hospitalized in the last 90 days of life (median 3 vs. 8 days, p = 0.0084). CONCLUSION: A limited-day, embedded PPO clinic was associated with receipt of PPC and spending more time at home in patients with cancer who had high-risk events. Continued improvements to these outcomes would be expected with additional oncology provider education and PPO personnel.
Brock K E; Allen K E; Falk E; Velozzi-Averhoff C; DeGroote N P; Klick J; Wasilewski-Masker K
Supportive Care in Cancer
2020
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/s00520-020-05671-y" target="_blank" rel="noreferrer noopener">10.1007/s00520-020-05671-y</a>
Strengths, Gaps, and Opportunities: Results of a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources
community needs assessment (CNA); pediatric hospice; pediatric palliative care
CONTEXT: Pediatric palliative care (PPC) can improve quality of life for children with life-threatening conditions and their families. However, PPC resources vary by state and within a state, PPC resources and personnel are often inequitably distributed towards urban areas with major hospital systems. A community needs assessment (CNA) that evaluates the current status of PPC and pediatric hospice care can help identify gaps and opportunities to improve PPC access. OBJECTIVES: A CNA was performed in the state of Georgia to explore the scope and gaps of PPC and hospice services and plan for what is needed to grow PPC and hospice services. METHODS: The CNA utilized a mixed-methods approach, including a community profile, literature search, windshield survey, key informant interviews, and a quantitative online survey. The methodology is outlined in a companion manuscript, entitled "A Methodological Approach to Conducting a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources." RESULTS: Four key themes were identified from synthesis of primary and secondary data collection: defining and providing PPC, the environment for PPC in Georgia, coordination and collaboration, and the future of PPC in Georgia. Recommendations to improve PPC services in Georgia were categorized by feasibility and importance. High feasibility, high importance recommendations included expanding PPC education for both providers and patients, and creating a formal network or coalition of PPC providers and allies who can work collaboratively at multiple care levels across Georgia in expanding PPC services. CONCLUSIONS: In Georgia, this assessment provides the foundation for next steps in coordinated efforts between hospital-based clinicians, state hospice and palliative care organizations, and state policy makers to ultimately expand PPC care available to children and families.
Johnson K; Allen K E; West W; Williams-Kirkwood W; Wasilewski-Masker K; Escoffery C; Brock K E
Journal of Pain and Symptom Management
2020
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/10.1016/j.jpainsymman.2020.04.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.04.009</a>
A Methodologic Approach to Conducting a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources
community needs assessment (CNA); pediatric hospice; pediatric palliative care
CONTEXT: Prior studies have indicated that pediatric palliative care (PPC) resources vary across states and within regions in a state. Evaluating the current status of PPC and pediatric hospice care through a community needs assessment (CNA) can help address the gaps that exist in order to improve and increase access to PPC for children in need. OBJECTIVE(S): Using the state of Georgia as an example, the process, methods, lessons learned, and limitations in conducting a statewide PPC community needs assessment are described. METHOD(S): A mixed-method descriptive design with multiple stages incorporating different methodological approaches was utilized. These included: (1) literature review, (2) community profile, (3) survey and interview questionnaire development, (4) windshield survey, (5) identifying and interviewing key informants, and (6) quantitative survey of the state's hospice organizations. Key themes (Providing PPC, PPC Environment, Collaboration and Future of PPC) and subthemes emerged which were then triangulated across all existing data collection techniques to provide recommendations of varying feasibility and importance. RESULT(S): Are described in a subsequent manuscript. CONCLUSION(S): This approach can be utilized by other state organizations, coalitions, governments or national organizations looking to perform a CNA of palliative care, hospice resources, or could be applied to other geographical settings or types of care. Copyright © 2020. Published by Elsevier Inc.
Brock K E; Allen K E; Barton C; Shapiro R; Weintraub B; Wasilewski-Masker K; Escoffery C; Johnson K
Journal of Pain and Symptom Management
2020
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/10.1016/j.jpainsymman.2020.04.004" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.04.004</a>
Defining palliative opportunities in pediatric patients with bone and soft tissue tumors
adolescent; bone marrow; bone tumor; cancer patient; cancer recurrence; child; conference abstract; controlled study; death; disease exacerbation; do not resuscitate order; female; hospice; hospital admission; human; intensive care; major clinical study; male; palliative therapy; pediatric patient; phase 1 clinical trial; relapse; retrospective study; soft tissue tumor; solid malignant neoplasm; statistics
Background: Pediatric patients with cancer have many opportunities for increased primary or specialty palliative care (PC). This is particularly true for patients with solid tumors who often have higher symptom burden and worse outcomes. However, how many opportunities, when they occur, and if these opportunities are correlated with disease or demographic variables are unknown. Objective(s): To define palliative opportunities within pediatric cancer, and explore howthese occur in patients with solid tumors. Design/Method: A priori, nine palliative opportunity categories were defined (disease progression and relapse, hospital admission for symptoms or social concerns, intensive care or marrow transplant admission, phase 1 trial or hospice enrollment, DNR status). A single-center retrospective review was conducted on patients aged 0-17 years at diagnosis with bone/soft tissue tumors who died from 1/1/12- 11/30/17. Demographic, disease, and treatment data was collected, and descriptive statistics were performed. Timing of opportunities was evaluated over quartiles from diagnosis to death. Result(s): Patients (n = 60) had a mean of nine (SD = 4) palliative opportunities. Number or type of opportunities did not differ by primary diagnosis or demographic variables. PC consulted on 18 patients (30%) a median of 14.0 months (IQR 25.0) after diagnosis, and 2.6 months (IQR 11.5) prior to death. Likelihood of PC consult did not differ by diagnosis or total opportunities. The opportunities that preceded PC consultwere progression/relapse (9/18), escalated hospital level of care (4/18), symptom admission (3/18), and end-oflife concerns (2/18). Hospicewas involved for 72% of patients. The majority of opportunities occurred in the last quartile of the disease course (median 5.0, IQR 5.0). Conclusion(s): Patients with solid tumors incur many events warranting psychosocial or palliative support, which increase toward the end-of-life. Mean reported opportunities is likely a minimum due to stringent collection methods. No palliative opportunity or demographic variable was associated with PC consultation. Defining palliative opportunities provides an additional framework to assess the disease trajectory for patients suffering from oncologic diseases. Additional work is needed to further refine what qualifies as a palliative opportunity, how to fully capture opportunities, and how those may differ across different cancers.
Ebelhar J; Allen K; Wasilewski-Masker K; Brock K
Pediatric Blood and Cancer
2019
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.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</a>