<p>Psychosocial and supportive care interventions are a cornerstone of palliative care science, yet there is little published guidance regarding how to develop, test, adapt, and ultimately disseminate evidence-based interventions. Our objective was to describe the application of a single intervention-development model in multiple populations of patients with serious illness. Specifically, we use the "Promoting Resilience in Stress Management" (PRISM) intervention as an exemplar for how the Obesity Related Behavioral Intervention Trials (ORBIT) intervention-development model may be applied to: (1) create an initial palliative care intervention; (2) adapt an existing intervention for a new patient-population; (3) expand an existing intervention to include new content; and, (4) consider dissemination and implementation of a research-proven intervention. We began by identifying key psychological and social science theories and translating them a testable clinical hypothesis. Next, we conducted observational studies and randomized trials to design, refine, and standardize PRISM within unique patient-populations. We moved backwards in the ORBIT model when necessary to adapt or expand PRISM content and delivery-strategies to meet patient-reported needs. Finally, we began to explore PRISM's effectiveness using Dissemination and Implementation research methods. Key lessons include the need to ground intervention-development in evidence-based theory; involve patient, clinician, and other stakeholders at every phase of development; "meet patients where they are at" with flexible delivery strategies; invest in the time to find the right scientific premise and the right intervention content; and, perhaps most importantly, involve an interdisciplinary research team.</p>

<p><strong>BACKGROUND: </strong>The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified eleven potential "next step" actions, and subsequently a national survey-based poll of members of the PPC community was conducted to prioritize these potential actions in terms of their "actionable importance."</p>

<p><strong>METHODS: </strong>Invitations to the survey were distributed in October 2019 to interdisciplinary PPC health care professionals via email to two major listservs, one hosted by the Section of Hospice and Palliative Medicine of the American Academy of Pediatrics, the other by the Center to Advance Palliative Care. Respondents rated the "actionable importance" of items relative to each other via a discrete choice experiment. Median importance scores are reported for each item.</p>

<p><strong>RESULTS: </strong>177 individuals responded to the survey. The majority (62.2%) were physicians, with nurses (16.4%), advanced practice nurses (7.9%), and social workers (7.3%) being the other most common responders. The top 5 potential actions, in descending rank order, were: Determine what parents value regarding PPC (median score of 17.8, out of a total score of all items of 100); Define and disseminate core primary PPC curriculum (median, 15.3); Develop PPC national representation strategy and tactics (median, 12.3); Create PPC-specific program development toolkit (median, 10.9); and, Analyze payment and financing ratios (median, 9.6).</p>

<p><strong>CONCLUSIONS: </strong>Those seeking to advance the field of PPC should take into account the findings from this study, which suggest that certain actions are more likely to have a beneficial impact on moving the field forward.</p>

<p><strong>CONTEXT: </strong>Childhood cancer care is delivered by interprofessional healthcare teams however little is known about how parents perceive overall team-delivered care (TDC).</p>

<p><strong>OBJECTIVES: </strong>We sought to describe parent perceptions of TDC and associated factors, including care rendered by individual clinicians, teamwork, information consistency, and patient and parent characteristics.</p>

<p><strong>METHODS: </strong>Cross-sectional surveys were distributed to parents of 104 children with recurrent/refractory cancer enrolled in a multi-site symptom management trial. The primary outcome, TDC, was parent report of care quality delivered by the child's care team during the preceding 3 months. Likert scaled items (excellent/very good/good/fair/poor) queried care quality delivered by individual clinicians, perceived teamwork and other factors. Factors associated with parent perceptions of "excellent" TDC were identified using Fisher's Exact test.</p>

<p><strong>RESULTS: </strong>Eighty-six parents (83%) responded. Over the preceding 3 months, 63% (n=54) of parents reported excellent TDC. However, only 47% (n=40) described their care team's teamwork as excellent. Approximately one-quarter (24%) described care rendered by their child's oncologist as less-than-excellent. Among parents who reported psychosocial clinician involvement (71%, n=60), only 43% described this care as excellent. Individually, excellent care from each clinician type (oncologist, psychosocial clinician, primary nurse) was associated with excellent TDC (all p≤0.001, no correction for multiple comparisons).</p>

<p><strong>CONCLUSION: </strong>Among parents of children with advanced cancer, more than one-third report less-than-excellent TDC. Additionally, less than half report excellent teamwork, and ratings of care rendered by individual clinicians are highly variable. Findings suggest interventions are needed to enhance interprofessional teamwork in the care of children with advanced cancer.</p>

<p><strong>CONTEXT: </strong>In order to dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the United States and similar practice settings, the field needs to better understand the challenges and opportunities for rigorous scholarship.</p>

<p><strong>OBJECTIVES: </strong>The Pediatric Palliative Care Research Network conducted a workshop to clarify challenges and identify key priorities.</p>

<p><strong>METHODS: </strong>The workshop focused on PPC research topics and methods, including: outcomes measurement, qualitative inquiry, analyses of "big data," prospective collection of research data, case series and cohort studies, and intervention trials, with synthesizing summary and follow-up discussions. All attendees reviewed and approved the final report.</p>

<p><strong>RESULTS: </strong>Five common challenges were identified: patient diversity and small population size; interdependencies and dynamic interactions between child, family members, and disease processes over time; outcomes and measurement; workforce and infrastructure limitations; and presumed burden of PPC research upon participants. Seven priorities emerged: bolster training and development of PPC investigators; develop core resources; advance symptom measurement (and measurements of other exposures and outcomes); improve symptom management and quality of life interventions; improve communication, elicitation of goals of care, and decision-making; understand family impact and facilitate or improve family adaptation and coping; and analyze and improve systems of care, policy, and education.</p>

<p><strong>CONCLUSION: </strong>These challenges and priorities identify key research areas that can guide individual investigators and research funders to advance the field.</p>

<p><strong>CONTEXT: </strong>In our increasingly multicultural society, providing sensitive and respectful pediatric palliative care is vital.</p>

<p><strong>OBJECTIVES: </strong>We held a one-day workshop conference with stakeholders and pediatric clinicians to identify suggestions for navigating conflict when cultural differences are present and for informing standard care-delivery.</p>

<p><strong>METHODS: </strong>Participants explored cases in one of four workshops focused on differences based on either race/ethnicity, economic disparity, religion/spirituality, or family-values. Each workshop was facilitated by two authors; separate transcriptionists recorded workshop discussions in real-time. We used content analyses to qualitatively evaluate the texts and generate recommendations.</p>

<p><strong>RESULTS: </strong>Participants included 142 individuals representing over 6 unique disciplines, 25 of the United States, and 3 nations. Whereas the conference focused on pediatric palliative care, findings were broadly generalizable to most medical settings. Participants identified key reasons cultural differences may create tension and then provided frameworks for communication, training, and clinical care. Specifically, recommendations included phrases to navigate emotional conflict, broken trust, unfamiliar family values, and conflict. Suggested approaches to training and clinical care included the development of core competencies in communication, history taking, needs assessment, and emotional intelligence. Important opportunities for scholarship included qualitative studies exploring diverse patient- and family-experiences, quantitative studies examining health disparities, and randomized clinical trials testing interventions designed to improve community partnerships, communication, or child health outcomes.</p>

<p><strong>CONCLUSION: </strong>Taken together, findings provide a foundation for collaboration between patients, families, and clinicians of all cultures.</p>

<p><strong>BACKGROUND: </strong>Pediatric cancer-related fatigue is prevalent and significantly impairs health-related quality of life, yet its patterns and correlates are poorly understood. The objectives of this study were to describe fatigue as prospectively reported by children with advanced cancer and to identify the factors associated with fatigue and associated distress.</p>

<p><strong>METHODS: </strong>Children (age ≥2 years) with advanced cancer (N = 104) or their parents at 3 academic hospitals reported symptoms at most weekly over 9 months using the computer-based Pediatric Quality of Life Evaluation of Symptoms Technology (PediQUEST) system. PediQUEST administered a modified version of the Memorial Symptom Assessment Scale (PQ-MSAS) as part of a randomized controlled trial. Clinical information was abstracted from medical records. Primary outcomes were: 1) fatigue prevalence (yes/no response to PQ-MSAS fatigue item) and 2) fatigue distress (composite score of severity, frequency, and bother). Multivariable models were constructed to identify factors independently associated with fatigue prevalence and scores reflecting fatigue distress (ie, burden).</p>

<p><strong>RESULTS: </strong>Of 920 reports, 46% (n = 425) noted fatigue. When reported, fatigue was of high frequency in 41% of respondents (n = 174), severity in 25%of respondents (n = 107), and bother in 34%of respondents (n = 143). Most reports (84%; n = 358) were associated with scores indicating fatigue distress. In multivariable analyses, fatigue was associated with older age, lower hemoglobin, and distress from particular symptoms (anorexia, nausea, sleep disturbance, sadness, and irritability). In contrast, fatigue distress was associated with distress from nausea, cough, and pain.</p>

<p><strong>CONCLUSIONS: </strong>Fatigue is common among children with advanced cancer and is often highly distressing. Interventions focused on uncontrolled symptoms may ease fatigue distress in children with advanced cancer.</p>

<p><strong>BACKGROUND: </strong>Children with advanced cancer experience high symptom distress, which negatively impacts their health-related quality of life (HRQOL). To the authors' knowledge, the relationship between income and symptom distress and HRQOL is not well described.</p>

<p><strong>METHODS: </strong>The Pediatric Quality of Life and Symptoms Technology (PediQUEST) multisite clinical trial evaluated an electronic patient-reported outcome system to describe symptom distress and HRQOL in children with advanced cancer via repeated surveys. The authors performed a secondary analysis of PediQUEST data for those children with available parent-reported household income (dichotomized at 200% of the Federal Poverty Level and categorized as low income [&lt;$50,000/year] or high income [≥$50,000/year]). The prevalence of the 5 most commonly reported physical and psychological symptoms was compared between groups. Multivariable generalized estimating equation models were used to test the association between household income and symptom distress and HRQOL.</p>

<p><strong>RESULTS: </strong>A total of 78 children were included in the analyses: 56 (72%) in the high-income group and 22 (28%) in the low-income group. Low-income children were more likely to report pain than high-income children (64% vs 42%; P=.02). In multivariable models, children from low-income families demonstrated a uniform trend toward higher total (β =3.1; 95% confidence interval [95% CI], -0.08 to 6.2 [P=.06]), physical (β=3.8; 95% CI, -0.4 to 8.0 [P=.09]), and psychological (β=3.46; 95% CI, -1.91 to 8.84 [P=.21]) symptom distress compared with children from high-income families. Low income was associated with a uniform trend toward lower total (β=-7.9; 95% CI, -14.8, to -1.1 [P=.03]), physical (β=-11.2; 95% CI, -21.2 to -1.2 [P=.04]), emotional (β=-5.8; 95% CI, -13.6 to 2.0 [P=.15]), social (β=-2.52; 95% CI, -9.27 to 4.24 [P=.47]), and school (β=-9.8; 95% CI, -17.8 to -1.8 [P=.03]) HRQOL.</p>

<p><strong>CONCLUSIONS: </strong>In this cohort of children with advanced cancer, children from low-income families were found to experience higher symptom burden and worse QOL.</p>

<p>Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research and the novel methods we have identified to target them. Specifically, we discuss potential approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery.</p>

<p><strong>Importance: </strong>Navigating requests from parents or family caregivers not to disclose poor prognosis to seriously ill children can be challenging, especially when the requests seem culturally mediated. Pediatric clinicians must balance obligations to respect individual patient autonomy, professional truth telling, and tolerance of multicultural values.</p>

<p><strong>Observations: </strong>To provide suggestions for respectful and ethically appropriate responses to nondisclosure requests, we used a hypothetical case example of a Middle Eastern adolescent patient with incurable cancer and conducted an ethical analysis incorporating (1) evidence from both Western and Middle Eastern medical literature and (2) theories of cultural relativism and justice. While Western medical literature tends to prioritize patient autonomy and corresponding truth telling, the weight of evidence from the Middle East suggests high variability between and within individual countries, patient-physician relationships, and families regarding truth-telling practices and preferences. A common reason for nondisclosure in both populations is protecting the child from distressing information. Cultural relativism fosters tolerance of diverse beliefs and behaviors by forbidding judgment on foreign societal codes of conduct. It does not justify assumptions that all individuals within a single culture share the same values, nor does it demand that clinicians sacrifice their own codes of conduct out of cultural respect. We suggest some phrases that may help clinicians explore motivations behind nondisclosure requests and gently confront conflict in order to serve the patient's best interest.</p>

<p><strong>Conclusions and Relevance: </strong>It is sometimes ethically permissible to defer to family values regarding nondisclosure, but such deferral is not unique to cultural differences. Early setting of expectations and boundaries, as well as ongoing exploration of family and health care professional concerns, may mitigate conflict.</p>

CONTEXT: Little is known about how parents of children with advanced cancer classify news they receive about their child's medical condition.

OBJECTIVE: To develop concepts of "good news" and "bad news" in discussions of advanced childhood cancer from parent perspectives.

METHODS: Parents of children with advanced cancer cared for at three children's hospitals were asked to share details of conversations in the preceding 3 months that contained "good news" or "bad news" related to their child's medical condition. We used mixed methods to evaluate parent responses to both open-ended and fixed response items.

RESULTS: Of 104 enrolled parents, 86 (83%) completed the survey. Six (7%) parents reported discussing neither good nor bad news, 18 (21%) reported only bad news, 15 (17%) reported only good news, and 46 (54%) reported both good and bad news (1 missing response). Seventy-six parents (88%) answered free response items. Descriptions of both good and bad news discussions consisted predominantly of "tumor talk" or cancer control. Additional treatment options featured prominently, particularly in discussions of bad news (42%). Child well-being, an important good news theme, encompassed treatment tolerance, symptom reduction, and quality of life.

CONCLUSION: A majority of parents of children with advanced cancer report discussing both good and bad news in the preceding 3 months. While news related primarily to cancer control, parents also describe good news discussions related to their child's well-being. Understanding how parents of children with advanced cancer classify and describe the news they receive may enhance efforts to promote family-centered communication.