The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review

Erica C. Kaye, Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA. Electronic address: erica.kaye@stjude.org.
Meaghann S. Weaver, Division of Pediatric Palliative Care, Children's Hospital and Medical Center, Omaha, Nebraska, USA.
Leila Hamzi DeWitt, Department of Pediatrics, Wake Forest School of Medicine, Winston Salem, North Carolina, USA.
Elizabeth Byers, University of Alabama at Birmingham, Birmingham, Alabama, USA.
Sarah E. Stevens, Departments of Psychosocial Oncology and Palliative Care and Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
Joe Lukowski, The University of Nebraska, Omaha, Nebraska, USA.
Brandon Shih, Rollins School of Public Health, Emory University, Atlanta, Georgia, USA.
Kristina Zalud, St. Louis Children's Hospital, Washington University School of Medicine, St. Louis, Missouri, USA.Follow
Jacob Applegarth, Indiana University School of Medicine, Indianapolis, Indiana, USA.Follow
Hong-Nei Wong, Lane Medical Library & Knowledge Management Center, Stanford University School of Medicine, Stanford, California, USA.
Justin N. Baker, Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.Follow
Christina K. Ullrich, Departments of Psychosocial Oncology and Palliative Care and Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts, USA.

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 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.

Publication Title

Journal of pain and symptom management

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