The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review
Oncology
CONTEXT: Children with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown. OBJECTIVE: We conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in pediatric oncology with a focus on intervention delivery, collaboration, and alignment with National Quality Forum domains. METHODS: We searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until April 2020 and reviewed references manually. Eligible articles were published in English, involved pediatric patients aged 0-18 years with cancer, and contained original data regarding patient and family illness and end-of-life experiences, including symptom management, communication, decision-making, quality of life, satisfaction, and healthcare utilization. RESULTS: We screened 6682 article abstracts and 82 full-text articles; 32 studies met inclusion criteria, representing 15,635 unique children with cancer and 342 parents. Generally, children with cancer who received SPPC had improved symptom burden, pain control, and quality of life with decreased intensive procedures, increased completion of advance care planning and resuscitation status documentation, and fewer end-of-life intensive care stays with higher likelihood of dying at home. Family impact included satisfaction with SPPC and perception of improved communication. CONCLUSION: SPPC may improve illness experiences for children with cancer and their families. Multisite studies utilizing comparative effectiveness approaches and validated metrics may support further advancement of the field.
Kaye EC; Weaver MS; DeWitt LH; Byers E; Stevens SE; Lukowski J; Shih B; Zalud K; Applegarth J; Wong HN; Baker JN; Ullrich CK; Committee Aahpm Research
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2020.12.003" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.12.003</a>
An Automatic Pediatric Palliative Care Consultation for Children Supported on Extracorporeal Membrane Oxygenation: A Survey of Perceived Benefits and Barriers
Consultation; Extracorporeal membrane oxygenation; Pediatric palliative care; Survey
Background: Pediatric palliative care (PPC) consultation is infrequent among children on extracorporeal membrane oxygenation (ECMO). Objective(s): Investigate intensive care unit (ICU) team members' perceptions of automatic PPC consultation for children on ECMO in an ICU in the United States. Method(s): Cross-sectional survey assessing benefits, barriers to PPC, and consultation processes. Result(s): Of 291 eligible respondents, 48% (n=140) completed the survey and 16% (n=47) answered an open-ended question. Benefits included support in decision-making (n=98; 70%) and identification of goals of care (n=89; 64%). Barriers included perception of giving up on families (n=59; 42%) and poor acceptability by other team members (n=58; 41%). Respondents endorsed communication with the primary ICU team before (n=122; 87%) and after (n=129; 92%) consultation. Open-ended responses showed more positive (79% vs. 13%) than negative statements. Positive statements reflected on expanding PPC to other critically-ill children where negative statements revealed unrecognized value in PPC. Conclusion(s): Results demonstrate opportunities for education about the scope of PPC and improvements in PPC delivery.
Delgado-Corcoran C; Wawrzynski SE; Mansfield KJ; Flaherty B; DeCourcey DD; Moore D; Cook LJ; Ullrich CK; Olson LM
Journal of Palliative Medicine
2022
<a href="http://doi.org/10.1089/jpm.2021.0452" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0452</a>
Health Care Providers' Perspectives on COVID-19 and Medical Neglect in Children with Life-Threatening Complex Chronic Conditions
children with life-threatening conditions; complex chronic conditions; Covid-19; medical neglect; perspectives of health care professionals
PURPOSE: Little is known regarding medical neglect in children with Life-Threatening Complex Chronic Conditions (LT-CCCs). We examined the impact of COVID-19 on concern for medical neglect in this population. METHODS: Qualitative interview study of multi-disciplinary health care providers (HCPs) from critical care, palliative care, and complex care services on the topic of medical neglect in children with LT-CCCs. We used inductive thematic analysis to generate themes. Findings presented herein are derived from a sub-analysis of the larger study that focused specifically on discussion of COVID-19 by HCPs. RESULTS: 9 of the 20 HCPs interviewed mentioned COVID-19 as influencing situations of potential medical neglect. These 9 represent all disciplines and teams. Interviewees reported COVID-19 increased burden on parents and likelihood of medical neglect due to: 1) Familial distancing from medical and social support and, 2) Changes to medical care delivery that impaired the medical community's ability to engage and support families. CONCLUSIONS: The COVID-19 pandemic has exposed the fragility of the medical and social systems that supports families of children with LT-CCCs. These findings are consistent with previous literature that suggest that the COVID-19 pandemic has increased the risk for child maltreatment. It additionally highlights the vulnerability of this patient population.
Cleveland RW; Deming RS; Helton G; Wilson CR; Ullrich CK
Journal of Child & Adolescent Trauma
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/s40653-021-00428-z" target="_blank" rel="noreferrer noopener">10.1007/s40653-021-00428-z</a>
Pediatric Hospital Care for Children with Life-threatening Illness and the Role of Palliative Care
Hospitalization; Chronic disease; Health care reform; Life Threatening illness; Hospital care
Under increasing pressure to contain costs, hospitals are challenged to provide high-quality care to an increasingly complex group of children with life-threatening illness (LTI) that often worsen over time. Pediatric palliative care is an essential component of optimal hospital care delivery for these children and their families. This article describes (1) the current landscape of pediatric hospital care for children with LTI, (2) the connection between palliative care and hospital care for such children, and (3) the relationship between health care reform and palliative care for children with LTI.
2014-08
Bogetz JF; Ullrich CK; Berry JG
Pediatric Clinics Of North America
2014
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).
Journal Article
<a href="http://doi.org/10.1016/j.pcl.2014.05.002" target="_blank" rel="noreferrer">10.1016/j.pcl.2014.05.002</a>
Caring for children living with life-threatening illness: a growing relationship between pediatric hospital medicine and pediatric palliative care
Child; Humans; Palliative Care; Pediatrics; Critical Illness; Hospitals; Pediatric; Hospital Medicine
2014-08
Ullrich CK; Wolfe J
Pediatric Clinics Of North America
2014
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).
Journal Article
<a href="http://doi.org/10.1016/j.pcl.2014.05.004" target="_blank" rel="noreferrer">10.1016/j.pcl.2014.05.004</a>
Improving the Care of Children With Advanced Cancer by Using an Electronic Patient-Reported Feedback Intervention: Results From the PediQUEST Randomized Controlled Trial
Child; Female; Humans; Male; Palliative Care; Neoplasms; Treatment Outcome; Electronic Health Records; Pilot Projects; Symptom Assessment; Feedback; Intervention Studies; Sickness Impact Profile; quality of life; Preschool
Purpose This study aimed to determine whether feeding back patient-reported outcomes (PROs) to providers and families of children with advanced cancer improves symptom distress and health-related quality of life (HRQoL). Patients and Methods This study was a parallel, multicentered pilot randomized controlled trial. At most once per week, children age ≥ 2 years old with advanced cancer or their parent completed the computer-based Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) survey consisting of age- and respondent-adapted versions of the Memorial Symptom Assessment Scale (MSAS), Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL4.0), and an overall Sickness question. In the intervention group (n = 51), oncologists and families received printed reports summarizing PROs; e-mails were sent to oncologists and subspecialists when predetermined scores were exceeded. No feedback was provided in the control group (n = 53). Primary outcomes included linear trends of MSAS, PedsQL4.0 total and subscale scores, and Sickness scores during 20 weeks of follow-up, along with child, parent, and provider satisfaction with PediQUEST feedback. Results Feedback did not significantly affect average MSAS, PedsQL4.0, or Sickness score trends. Post hoc subgroup analyses among children age ≥ 8 years who survived 20 weeks showed that feedback improved PedsQL4.0 emotional (+8.1; 95% CI, 1.8 to 14.4) and Sickness (−8.2; 95% CI, −14.2 to −2.2) scores. PediQUEST reports were valued by children, parents, and providers and contributed at least sometimes to physician initiation of a psychosocial consult (56%). Conclusion Although routine feedback of PROs did not significantly affect the child’s symptoms or HRQoL, changes were in expected directions and improvements observed in emotional HRQoL through exploratory analyses were encouraging. Importantly, children, parents, and providers value PRO feedback.
2014-03
Wolfe J; Orellana L; Cook EF; Ullrich CK; Kang TI; Geyer JR; Feudtner C; Weeks Jane C; Dussel V
Journal Of Clinical Oncology
2014
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).
Journal Article
<a href="http://doi.org/10.1200/JCO.2013.51.5981" target="_blank" rel="noreferrer">10.1200/JCO.2013.51.5981</a>
Assessment and management of fatigue and dyspnea in pediatric palliative care
Fatigue is one of the most prevalent symptoms in patients with a life-threatening illness. Untreated, fatigue can impair quality of life and prohibit addressing practical needs, psychosocial and spiritual distress, and opportunities for growth and closure at life's end. To this end addressing fatigue is a crucial component of the provision of effective palliative care. Dyspnea is the sensation of breathlessness. The challenge in treating it, however, is that it can come from various different abnormalities so understanding the underlying disorder and the acute abnormality are critical. With that understanding several different treatments can be offered to treat the cause of the dyspnea or palliate the symptom itself.
2007
Ullrich CK; Mayer OH
Pediatric Clinics Of North America
2007
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).
Journal Article
<a href="http://doi.org/10.1016/j.pcl.2007.07.006" target="_blank" rel="noreferrer">10.1016/j.pcl.2007.07.006</a>