Although many of the 16,000 children in the United States diagnosed who are with cancer each year could benefit from pediatric palliative care, these services remain underused. Evidence regarding the barriers impeding access to comprehensive palliative care is dispersed in the literature, and evidence specific to pediatric oncology remains particularly sparse. The purpose of the current review was to synthesize the existing literature regarding these barriers and the strategies offered to address them. The authors completed a literature search using the PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Web of Science databases. In total, 71 articles were reviewed. Barriers to accessing pediatric palliative care were categorized according to the 4 levels of a modified socioecological model (ie, barriers related to policy/payment, health systems, organizations, and individuals). Major themes identified at each level included: 1) the lack of consistent and adequate funding mechanisms at the policy/payment level, 2) the lack of pediatric palliative care programs and workforce at the health systems level, 3) difficulties integrating palliative care into existing pediatric oncology care models at the organizational level, and 4) the lack of knowledge about pediatric palliative care, discomfort with talking about death, and cultural differences between providers and patients and their families at the individual level. Recommendations to address each of the barriers identified in the literature are included. Cancer 2018;124:2278-88. © 2018 American Cancer Society.

Adaptation of existing evidence-based interventions (EBIs) to improve their fit in new contexts is common. A critical first step in adaptation is to identify core functions (purposes) and forms (activities) of EBIs. Core functions should not be adapted as they are what account for the efficacy of EBIs. Despite their importance, core functions are rarely identified by EBI developers; methods for identifying them post hoc are lacking. We present a case study of theory-based methods for identifying core functions and forms post hoc. We developed these methods as the first step in a larger effort to adapt an existing EBI to improve the timeliness of referrals to hospice to a new patient population and care setting. Our methods were rooted in the Planned Adaptation Model (PAM). Through our case study, we developed six steps for identifying core functions and forms, as well as accompanying tools and methods. Our case study further operationalized PAM in several ways. Where PAM offered guiding tenets for identifying core functions and forms (review existing EBI materials, conduct primary data collection, and identify the theory of change), we produced specific tools (interview guides and codebooks) and methods (sampling approaches and analytic methods). Our case study extended PAM with the addition of two steps in the process of identifying core functions and forms: (a) identifying the usual care pathway, including barriers to the outcome of interest encountered in usual care, and (b) mapping EBI core functions onto an extant theory. Identifying core functions and forms is a critical first step in the adaptation process to ensure adaptations do not inadvertently compromise the efficacy or effectiveness of the EBI by compromising core functions. Our case study presents step-by-step methods that could be used by researchers or practitioners to identify core functions and forms post hoc.

Specifications and data collection tools are available for 34 PEACE quality measures that were highly rated by experts in hospice and palliative care. Future research should assess the scientific soundness and responsiveness of these measures to quality improvement.

Numerous patient-level instruments are available to measure physical, psychological and social aspects of palliative care with adequate evidence for scientific soundness and practical clinical use for quality improvement and research. Other aspects of palliative care may benefit from further instrument development research.

Current organizational activities, data collection rates, and use of electronic data systems may limit hospices' preparation and practices related to quality improvement and research participation; larger size and designation of a change leader are associated with greater capacity. Hospices may need technical assistance and training to provide for meaningful measurement of quality of care.