The impact of specialty palliative care in pediatric oncology: a systematic review

• Authors: Erica C Kaye, St. Jude Children’s Research Hospital; Meaghann S Weaver, Children’s Hospital and Medical Center; Leila Hamzi DeWitt, Wake Forest School of Medicine; Elizabeth Byers, University of Alabama at Birmingham; Sarah E Stevens, Dana-Farber Cancer Institute; Joe Lukowski, The University of Nebraska; Brandon Shih, Emory University; Kristina Zalud, Washington University School of Medicine; Jacob Applegarth, Indiana University; Hong-Nei Wong, Stanford University; Justin N Baker, St. Jude Children’s Research Hospital; Christina K Ullrich, Dana-Farber Cancer Institute
• Journal Title: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
• Volume: Volume 61, Number 5
• Publisher: Elsevier | 2021-05-01, Pages 1060-1079.e2
• Type of Work: Article | Post-print: After Peer Review
• Publisher DOI: http://doi.org/10.1016/j.jpainsymman.2020.12.003
• Subjects: Health Sciences, Oncology; Health Sciences, Medicine and Surgery
• Keywords: pediatric; cancer; palliative care; hospice; integration; review

Abstract

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 6,682 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. Multi-site studies utilizing comparative effectiveness approaches and validated metrics may support further advancement of the field.