Children with cancer who receive PC experience a high burden of intensive treatments and often die in inpatient intensive care settings. Delayed PC involvement is associated with increased odds of dying in the intensive care unit. Prospective investigation of early PC involvement in children with high-risk cancer is needed to better understand potential impacts on cost-effectiveness, quality of life, and delivery of goal concordant care.

Objective To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents to formulate a consensus on the prioritization of the PPC research agenda. Study design A 4-round modified Delphi online survey was administered, to PPC experts and to parents of children who had received PPC. In Round 1, research priorities were spontaneously generated. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. A fourth iteration asked participants to rank the research priorities that had reached at least 80% consensus. Results A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in Round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for Round 2 ratings (n = 130, 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98, 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education. Conclusions This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.

Background The incorporation of genomic testing to identify targetable somatic alterations and predisposing germline mutations into the clinical setting is becoming increasingly more common. Despite its potential utility, physician confidence in understanding and applying genomic testing remains unclear, particularly in the realm of pediatric oncology. Methods Before initiating an institutional feasibility study on the integration of clinical genomic testing, we surveyed pediatric oncologists regarding their confidence around understanding of genomic testing, perceived utility of test results, preferences around germline results disclosure, and possible risks and benefits of testing. Results Among survey respondents (52 of 88; response rate 59%), only a minority were confident in interpreting, utilizing, and discussing somatic (35%) or germline (27%) genomic test results. Providers confident in interpreting somatic results were significantly more likely to anticipate using the results to plan the treatment of refractory cancers (p = 0.009). Similarly, providers who reported confidence in interpreting germline results were significantly more likely to discuss and utilize these results as part of clinical care (p < 0.0001, respectively). The majority of physicians (93%), regardless of their levels of confidence, wanted to speak to a genetic counselor prior to disclosing germline results. Conclusions Among physicians at a comprehensive pediatric cancer center, confidence in the interpretation, utilization, and discussion of oncology-based genomic results is low, both in terms of somatic and germline testing. To optimize the integration of genomic sequencing into cancer care, methods must be developed to improve basic competencies around cancer-based genomic testing. Given the complexities surrounding variant interpretation and genotype-phenotype relationships, interdisciplinary collaborations are warranted.

There is little information about the content of ethics consultations (EC) in pediatrics. We sought to describe the reasons for consultation and ethical principles addressed during EC in pediatrics through retrospective review and directed content analysis of EC records (2000–2011) at St. Jude Children’s Research Hospital. Patient-based EC were highly complex and often involved evaluation of parental decision making, particularly consideration of the risks and benefits of a proposed medical intervention, and the physician’s fiduciary responsibility to the patient. Non-patient consultations provided guidance in the development of institutional policies that would broadly affect patients and families. This is one of the few existing reviews of the content of pediatric EC and indicates the distribution of ethical issues and reasons for moral distress are different than with adults. Pediatric EC often facilitates complex decision-making among multiple stakeholders and further prospective research is needed on the role of ethics consultation in pediatrics.

Background It can be difficult to explain pediatric Phase I oncology trials to families of children with refractory cancer. Parents may misunderstand the information presented to them, and physicians may assume that certain topics are covered in the informed consent document and need not be discussed. Communication models can help to ensure effective discussions. Methods Suggestions for improving the informed consent process were first solicited from Phase I study clinicians via questionnaire. Eight parents who had enrolled their child on a Phase I pediatric oncology trial were recruited for an advisory group designed to assess the clinicians’ suggestions and make additional recommendations for improving informed consent for pediatric Phase I trials. Results A Phase I Communication Model was designed to incorporate the suggestions of clinicians and families. It focuses on education of parents/families about Phase I trials at specific time points during a child’s illness, but specifically at the point of relapse. We also present an informative Phase I fact sheet that can be distributed to families. Conclusions Families who will be offered information about a Phase I clinical trial can first receive a standardized fact sheet explaining the general purpose of these early-phase clinical trials. Parental understanding may be further enhanced when oncologists address key themes, beginning at diagnosis and continuing through important decision points during the child’s illness. This model should be prospectively evaluated.