Abstract
ContextChildren 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. ObjectiveWe 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. MethodsWe 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. ResultsWe 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. ConclusionSPPC 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.
Published Version
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