Patient, Parent, and Oncologist Perspectives and Recommendations on the Right Way to Talk About Prognosis in Advanced Childhood Cancer.

PURPOSE: Clear prognostic communication is associated with improvements in quality of life and suffering for children with advanced illness. Yet recent evidence demonstrates that pediatric oncologists often avoid, defer, or soften prognostic disclosure. We aimed to describe pediatric cancer shareholder perspectives on quality prognostic communication to inform design of an intervention to improve prognostic disclosure in advanced childhood cancer. METHODS: Semi-structured interviews were conducted with a purposeful sample of pediatric patients with cancer (n = 20), parents (n = 20), and oncologists (n = 20) representing six institutions across five states. Rapid analysis was performed using the National Cancer Institute core communication functions to organize domains of inquiry. RESULTS: Three main themes were endorsed by participants regarding the ideal timing of prognostic disclosure: early, ongoing, individualized. Although each group emphasized the need for an individualized approach, oncologists rarely elicited patient/parent preferences for prognostic communication and more commonly inferred what a patient/family wanted to hear. Participants described five key pillars for how to facilitate quality prognostic disclosure: conversation leadership, overall attendance, patient inclusion, location, and atmosphere. They also identified four themes around ideal prognostic content: range of information, use of numbers, population-level versus patient-specific information, and tone/delivery. Discordant recommendations between patients/parents and oncologists emerged for how much and what information to share. CONCLUSION: Pediatric cancer shareholders advocated for diverse, and sometimes conflicting, approaches for prognostic disclosure. Although nearly all participants endorsed the importance of individualized prognostic disclosure, specific strategies to encourage or facilitate person-centered prognostic conversation are lacking. Future research will focus on collaboration with pediatric patients, parents, and oncologists to codesign a clinical intervention to improve prognostic communication for children with advanced cancer and their families.

Outpatient Pediatric Palliative Care Development: Guidance on Building Sustainable Programs.

Context: As pediatric palliative care (PPC) expands within institutions and nationally, little guidance is available on building outpatient programs. Objectives: We asked outpatient PPC (OPPC) program leaders in the United States about clinic development experiences to gather advice for growing programs. Methods: As part of a larger OPPC study, 48 freestanding children's hospitals with inpatient PPC programs were invited to complete a survey on OPPC. Self-selected participants were sent a follow-up survey soliciting free-text responses about development experiences. Quantitative data were analyzed with descriptive statistics. Qualitative data underwent inductive content analysis. Results: Thirty-six hospitals completed the initial survey, and 28 (78%) reported practicing clinic-based OPPC. Twenty-two of 28 completed program development questions. More than half (12/22, 55%) recommended a minimum total billable full-time equivalent (FTE) ≥3 before expanding into the outpatient setting. About two-thirds (14/22, 64%) suggested a minimum billable FTE ≥4 for 24/7 coverage. Half (50%) reported that their program grew from subspecialty clinics, most frequently hematology-oncology (10/11, 91%). Half (50%) placed initial limits on referrals, with many restricting schedule availability (7/11, 64%). Six of 12 participants (50%) willing to share more about their development experience completed a follow-up survey, from which three themes emerged: program logistics, expectations and boundaries, and establishing role and workflow. Participants focused advice on slow programmatic growth to optimize sustainability. Conclusion: Program leaders offer tangible guidance informed by their OPPC development experience. Future work is needed to leverage this advice within institutions to promote resilient and sustainable PPC growth.

Storytelling to support legacy making for bereaved parents of children with cancer.

Honoring a child's legacy is an essential aspect of meaning-making for bereaved parents, yet little is known about storytelling as a mechanism. Through narrative analysis of 19 bereaved parent interviews focused on legacy, we examined the role of storytelling in creating and sustaining legacy. Most participants (89%) told stories centered around the child's impact and parent's coping, including the child's character and interpersonal relationships during and after their lifetime as well as how the child's legacy influenced parents' grief experiences. Future research is needed to explore the potential impact of storytelling initiatives to support legacy-making for bereaved caregivers.

Language to Support Dignity for Children With Advanced Cancer and Their Families.

BACKGROUND AND OBJECTIVES: Conversations about dignity are fundamental to person-centered care in pediatrics, yet practical language strategies to promote and support dignity remain understudied. To address this gap, we aimed to identify and characterize language used by pediatric oncologists to recognize and affirm dignity across advancing illness. METHODS: In this longitudinal prospective study, we audio-recorded serial disease reevaluation encounters between pediatric oncologists, children with cancer, and families across 24 months or until the child's death. Using a hybrid deductive-inductive qualitative approach, we defined dignity language a priori on the basis of existing descriptions of dignity in the literature and then conducted a content analysis to refine the definition specific to pediatric cancer care before coding serial medical encounters. Thematic frequencies were reported by using descriptive statistics. RESULTS: A total of 91 discussions at timepoints of disease progression were audio-recorded for 36 patients and their families. No dignity language was identified in nearly half (45%) of "bad news" encounters, and the time spent by the oncologist engaging in dignity language represented a minority (<7%) of overall recorded dialogue. Within coded dialogue, we characterized 3 key themes upholding dignity language (empowerment, autonomy, respect). CONCLUSIONS: Opportunities exist to improve dignity communication in childhood cancer, and the authors propose a conceptual model ("Lend an EAR") to guide dignity-based communication in pediatric cancer. Future research should emphasize patient and parent perspectives on language to support dignity for children with advanced cancer, with stakeholder-driven refinement of the Lend an EAR model before integration and testing in communication skills training programs.

Dignity in the Pediatric Population: A Systematic Review.

CONTEXT: Children are a uniquely vulnerable patient population with restricted abilities for self-advocacy and autonomy, risking infringement upon their dignity. Yet the concept of dignity in pediatrics remains underexplored relative to the adult literature and other outcome measures. OBJECTIVES: To characterize how dignity is defined, evaluated, and/or measured in pediatrics. METHODS: We conducted a systematic review following PRISMA guidelines across the following databases: MEDLINE, Embase, Cumulative Index of Nursing and Allied Health, PsycINFO, Global Health, Social Science Premium Collection, and Dissertation and Theses. We included publications from database inception through April 2023, in English, involving children aged 0-18 years, and prioritizing dignity as a central theme with a focus on defining, evaluating, or measuring dignity. Study descriptions and pertinent characteristics were extracted and synthesized using a predefined form. RESULTS: Forty-four articles met inclusion criteria; fewer than half comprised original research (20/44, 45%). Most studies (38/44, 86%) included description of the meaning of dignity, with emergence of salient themes around respect, communication, agency/autonomy, and privacy. Less than half (19/44, 43%) included a measurement or evaluation of dignity; approximately one-third described dignity therapy. More than one-third of publications focused on dignity at end of life (17/44, 39%) and included discussions of palliative medicine and hospice (15/44, 34%). CONCLUSION: Relatively few published studies describe dignity in pediatrics. Opportunities exist to broaden scholarship on this topic in partnership with patients, families, and clinicians, with the goal of assessing and strengthening dignity-centered care across the illness course and at the end of life.

"Understanding why she had to leave me": The roles of religion and spirituality in narratives of parents grieving the loss of a child to cancer.

Religion and spirituality often influence how people experience illness, death, and grief. The roles of religion and spirituality for parents who have lost a child to cancer remain underexplored. This study aimed to describe how cancer-bereaved parents talk about religion and spirituality when reflecting on their experiences. Participants whose children died of cancer one to six years prior to participation completed a one-on-one semi-structured interview. Interview transcripts underwent qualitative analysis. Content pertaining to religion and/or spirituality underwent subsequent in-depth analysis to identify themes. Of 30 interviews analyzed, 28 contained religion/spirituality content. Four themes arose: (1) life after death, (2) divine control, (3) evolution of faith after loss, and (4) religious and spiritual interactions within the medical community. The absence of supports for religious and spiritual needs represents a gap in bereavement care. Future work should clarify needs and explore potential interventions.

Access to legacy-oriented interventions at end of life for pediatric oncology patients: A decedent cohort review.

BACKGROUND: Legacy-oriented interventions have the potential to offer pediatric oncology patients and families comfort at end of life and during bereavement. Certified child life specialists often provide these services, and presently little is known about whether disparities exist in the provision of legacy-oriented interventions. METHODS: In this retrospective decedent cohort study, we examined demographic and clinical characteristics from a sample of 678 pediatric oncology patients who died between 2015 and 2019. Bivariate analysis assessed differences between patients who received any versus no legacy-oriented intervention. Uni- and multivariable logistic regression models assessed associations of baseline characteristics and likelihood of receiving legacy-oriented intervention. Further multivariable analysis explored joint effects of significant variables identified in the univariable analysis. RESULTS: Fifty-two percent of patients received a legacy-oriented intervention. Older adolescents (≥13 years) were less likely (odds ratio [OR]: 1.73, p = .007) to receive legacy-oriented interventions than younger ones. Patients with home/hospice deaths were also less likely (OR: 19.98, p < .001) to receive interventions compared to patients who passed away at SJCRH locations. Hispanic patients (OR: 1.53, p = .038) and those in palliative care (OR: 10.51, p < .001) were more likely to receive interventions. No significant race association was noted. CONCLUSION: All children and adolescents with cancer deserve quality care at end of life, including access to legacy-oriented interventions, yet nearly half of patients in this cohort did not receive these services. By identifying demographic and clinical characteristics associated with decreased odds of receiving legacy-oriented interventions, healthcare professionals can modify end-of-life care processes to improve access. Introducing legacy-oriented interventions early and increasing exposure in community spaces may enhance access to legacy-oriented interventions for pediatric oncology patients.

Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls.

PURPOSE: For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to developing an intervention to improve prognostic communication, we aimed to (1) characterize parent and oncologist perspectives on "best" approaches for prognostic communication, and (2) explore similarities and differences between parent and oncologist perspectives. METHODS: Children with poor-prognosis solid tumors, their parents, and oncologists were followed prospectively for 24 months or until death. Matched semi-structured interviews were conducted with parents and oncologists 0-7 days after medical encounters at timepoints of disease progression or relapse. Reflexive thematic analysis was conducted to describe parent and oncologist impressions of communication quality. RESULTS: A total of 68 interviews were conducted following serial disease reevaluation encounters involving 13 parents and five oncologists. Nine main themes were identified as "best" approaches: (1) speaking with honesty and clarity, (2) leaving room for hope, (3) leaning into a long-standing relationship, (4) personalizing language, (5) empowering the patient and family, (6) collaborating with the multidisciplinary team, (7) providing anticipatory guidance, (8) setting the scene, and (9) creating a therapeutic space. Parents and oncologists generally agreed on themes related to helpful communication approaches, while parents more explicitly described communication pitfalls. CONCLUSION: Parents and oncologists described clear recommendations for helpful communication strategies and pitfalls to avoid during difficult prognostic disclosure. Future work should integrate patient perspectives in the design and testing of an intervention to improve prognostic communication in advanced childhood cancer.

Narrative medicine interventions for oncology clinicians: a systematic review.

PURPOSE: As narrative medicine interventions are integrated increasingly into medical practice, growing evidence indicates benefits for healthcare professionals. Presently, the prevalence and impact of narrative medicine interventions in the field of oncology remain unknown. This systematic review synthesizes published data on narrative medicine interventions in oncology and reports current knowledge on feasibility, acceptability, and impact on cancer care professionals. METHODS: Following PRISMA guidelines, we searched Ovid Medline, Embase, Scopus, Web of Science, Cochrane, and ClinicalTrials.gov databases from inception through February 2024. Eligible articles were published in English and contained original data on feasibility, acceptability, and/or impact of a narrative medicine intervention for oncology professionals. Database searches identified 2614 deduplicated articles, from which 50 articles were identified for full-text assessment and 11 articles met inclusion criteria. Two additional articles were identified through manual review of references. RESULTS: Thirteen articles described 12 unique narrative medicine interventions targeting cancer care professionals. All studies described their respective interventions as feasible, acceptable, and impactful for participants. Interventions involved writing, reading, reflection, and other narrative-based strategies. Standardized validated tools evaluated outcomes including burnout, empathy expression, secondary trauma, quality of humanistic care, and well-being. Participants reported appreciation of opportunities for reflection, perspective sharing, and bearing witness, which they perceived to strengthen wellness and community. CONCLUSION: Narrative medicine interventions are feasible and acceptable and may bolster oncology clinicians' functioning across domains. Multi-site, prospective, randomized studies are needed to investigate the broader impact of narrative medicine interventions and advance the science of narrative medicine in oncology. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: CRD42022369432.

The Power of Story.

Oncology is a field driven by evidence. But data alone are not enough, we need stories to find our way.

Longitudinal Impact of a Novel Condolence Expression Curriculum.

Background: Pediatric residents lack training in expressing condolences to bereaved families after a child's death. We previously developed a novel curriculum that improved residents' comfort with expressing condolences, and now we report assessment of the longitudinal impact of this curriculum on residents' practices of condolence expression. Methods: We applied Kern's 6-step approach to develop, implement, and evaluate a condolence expression curriculum. Residents completed surveys before, immediately after, and six months after participating in the educational intervention to assess curricular impact over time. Results: Twenty pediatric residents participated in the curriculum. Residents reported an increase in their practice of expressing condolences following participation in the curriculum, as well as appreciation for the value of the intervention. Conclusion: A condolence expression curriculum has potential to increase residents' practice of condolence expression to bereaved families over time. Future work will focus on the impact of curricular dissemination across pediatric residency programs.

Factors influencing parents' choice of palliative treatment goals for children with relapsed or refractory neuroblastoma: A multi-site longitudinal survey study.

BACKGROUND: Many parents of children with advanced cancer report curative goals and continue intensive therapies that can compound symptoms and suffering. Factors that influence parents to choose palliation as the primary treatment goal are not well understood. The objective of this study was to examine experiences impacting parents' report of palliative goals adjusted for time. The authors hypothesized that awareness of poor prognosis, recall of oncologists' prognostic disclosure, intensive treatments, and burdensome symptoms and suffering would influence palliative goal-setting. METHODS: The authors collected prospective, longitudinal surveys from parents of children with relapsed/refractory neuroblastoma at nine pediatric cancer centers across the United States, beginning at relapse and continuing every 3 months for 18 months or until death. Hypothesized covariates were examined for possible associations with parental report of palliative goals. Generalized linear mixed models were used to evaluate factors associated with parents' report of palliative goals at different time points. RESULTS: A total of 96 parents completed surveys. Parents were more likely to report a primary goal of palliation when they recalled communication about prognosis by their child's oncologist (odds ratio [OR], 52.48; p = .010). Treatment intensity and previous ineffective therapeutic regimens were not associated with parents' report of palliative goals adjusted for time. A parent who reported new suffering for their child was less likely to report palliative goals (OR, 0.13; p = .008). CONCLUSIONS: Parents of children with poor prognosis cancer may not report palliative goals spontaneously in the setting of treatment-related suffering. Prognostic communication, however, does influence palliative goal-setting. Evidence-based interventions are needed to encourage timely, person-centered prognostic disclosure in the setting of advanced pediatric cancer. PLAIN LANGUAGE SUMMARY: Many parents of children with poor-prognosis cancer continue to pursue curative treatments that may worsen symptoms and suffering. Little is known about which factors influence parents to choose palliative care as their child's main treatment goal. To explore this question, we asked parents of children with advanced neuroblastoma across the United States to complete multiple surveys over time. We found that the intensity of treatment, number of treatments, and suffering from treatment did not influence parents to choose palliative goals. However, when parents remembered their child's oncologist talking about prognosis, they were more likely to choose palliative goals of care.

Questions to promote child-centered care in racially discordant interactions in pediatric oncology.

OBJECTIVE: To examine questioning practices in racially discordant interactions and describe how these practices engendered child-centered care. METHODS: We used applied conversation analysis to analyze a collection of 300 questions directed to children across 10 cases involving children of color and their families in disease reevaluation appointments in pediatric oncology. RESULTS: Our analysis generated two patterns: 1) both the pediatric oncologists' and caregivers built upon one another's talk to enable the child's conversational turn, and 2) the oncologists' reformulated requests as questions to invite the child's permission and cooperation for completing exams and understanding symptoms. CONCLUSION: Children, pediatric oncologists, and caregivers coordinated their actions to enable children to participate as recipients of and respondents to questions. The analysis of real-time interactions illuminates practices for centering children in clinical encounters and the benefits of doing so. PRACTICAL IMPLICATIONS: This study's findings have implications for defining competencies and practices for fostering child-centered communication, creating training materials based on real-time encounters, and identifying strategies for humanizing pediatric patient experiences.

Narrative Medicine in Hospice and Palliative Care: A Longitudinal Fellowship Curriculum Pilot.

INTRODUCTION: Growing evidence suggests that clinician exposure to narrative medicine (NM) may help bolster resilience and mitigate burnout. The value of formal longitudinal training in NM for hospice and palliative medicine (HPM) trainees remains understudied. METHODS: A 1-year longitudinal NM curriculum for HPM fellows was pilot-tested for feasibility, acceptability, and exploratory impact. Six monthly 45-minute sessions included reading literature, reflective writing, and sharing creative work. Quantitative and qualitative data were collected through a pre-intervention survey and post-intervention survey administered immediately upon completion of the curriculum. Longitudinal impact was assessed with a post-intervention survey administered three months after completion of the curriculum. RESULTS: All HPM fellows (n = 6) attended at least 5/6 sessions during the 1-year pilot, suggesting intervention feasibility. Participant engagement and self-reported comfort with NM exercises supported intervention acceptability. Post-intervention, participants described the positive influence of NM practice on their clinical practice and stated an intention to integrate NM skills in their future HPM careers. Three months following the intervention, participants had a sustained increase in their comfort level with NM. All participants felt that the NM sessions had been relevant to their life as HPM fellows and anticipated using NM moving forward in their practice of HPM. DISCUSSION: This novel NM curriculum was feasible and acceptable to implement in a 1-year HPM fellowship. Longitudinal impact showed sustained increase in trainee comfort and interest in using NM in their future clinical practice.

CritCom: assessment of quality of interdisciplinary communication around deterioration in pediatric oncologic patients.

Background: High-quality clinical care requires excellent interdisciplinary communication, especially during emergencies, and no tools exist to evaluate communication in critical care. We describe the development of a pragmatic tool focusing on interdisciplinary communication during patient deterioration (CritCom). Methods: The preliminary CritCom tool was developed after a literature review and consultation with a multidisciplinary panel of global experts in communication, pediatric oncology, and critical care to review the domains and establish content validity iteratively. Face and linguistic validity were established through cognitive interviews, translation, and linguistic synthesis. We conducted a pilot study among an international group of clinicians to establish reliability and usability. Results: After reviewing 105 potential survey items, we identified 52 items across seven domains. These were refined through cognitive interviews with 36 clinicians from 15 countries. CritCom was piloted with 433 clinicians (58% nurses, 36% physicians, and 6% other) from 42 hospitals in 22 countries. Psychometric testing guided the refinement of the items for the final tool. CritCom comprised six domains with five items each (30 total). The final tool has excellent reliability (Cronbach's alpha 0.81-0.86), usability (93% agree or strongly agree that the tool is easy to use), and similar performance between English and Spanish tools. Confirmatory factor analysis was used to establish the final 6-domain structure. Conclusions: CritCom is a reliable and pragmatic bilingual tool to assess the quality of interdisciplinary communication around patient deterioration for children in diverse resource levels globally. Critcom results can be used to design and evaluate interventions to improve team communication.

Factors influencing treatment decision-making for cancer patients in low- and middle-income countries: A scoping review.

PURPOSE: In this scoping review, we evaluated existing literature related to factors influencing treatment decision-making for patients diagnosed with cancer in low- and middle-income countries, noting factors that influence decisions to pursue treatment with curative versus non-curative intent. We identified an existing framework for adult cancer developed in a high-income country (HIC) context and described similar and novel factors relevant to low-and middle-income country settings. METHODS: We used scoping review methodology to identify and synthesize existing literature on factors influencing decision-making for pediatric and adult cancer in these settings. Articles were identified through an advanced Boolean search across six databases, inclusive of all article types from inception through July 2022. RESULTS: Seventy-nine articles were identified from 22 countries across six regions, primarily reporting the experiences of lower-middle and upper-middle-income countries. Included articles largely represented original research (54%), adult cancer populations (61%), and studied patients as the targeted population (51%). More than a quarter of articles focused exclusively on breast cancer (28%). Approximately 30% described factors that influenced decisions to choose between therapies with curative versus non-curative intent. Of 56 reported factors, 22 novel factors were identified. Socioeconomic status, reimbursement policies/cost of treatment, and treatment and supportive care were the most commonly described factors. CONCLUSIONS: This scoping review expanded upon previously described factors that influence cancer treatment decision-making in HICs, broadening knowledge to include perspectives of low- and middle-income countries. While global commonalities exist, certain variables influence treatment choices differently or uniquely in different settings. Treatment regimens should further be tailored to local environments with consideration of contextual factors and accessible resources that often impact decision-making.

Pediatric Palliative Care Program Implementation in LMICs: A Systematic Review using SWOT Analysis.

CONTEXT: Of the estimated 21 million children world-wide who need access to pediatric palliative care (PPC), about 97% currently reside in low-and middle-income countries (LMIC). Access to PPC programs in LMIC are limited, and successful strategies and barriers to program implementation remain understudied. OBJECTIVES: We conducted a systematic review to characterize the strengths, weaknesses, opportunities, and threats (SWOT) of PPC program implementation in LMIC. METHODS: Using PRISMA guidelines, we searched key databases from inception to April 2022 and reviewed references manually. Eligible abstracts and articles included content related to composition, role, function, purpose, development, or implementation of PPC programs in LMIC. RESULTS: From 7,846 titles and abstracts and 229 full-text articles, we identified 62 eligible abstracts and articles; 16 articles were added following manual searching of references, resulting in 78 items (28 abstracts, 50 articles). A total of 82 unique programs were described, including nine from low-income, 27 from lower-middle income, and 44 from upper-middle income countries. Common strengths included presence of multidisciplinary teams and psychosocial care. Common weaknesses included lack of PPC training and research infrastructure. Common opportunities involved collaboration between institutions, government support, and growth of PPC education. Common threats comprised limited access to PPC services, medications, and other resources. CONCLUSION: PPC programs are being successfully implemented in resource limited settings. Hospice and palliative medicine organizations should sponsor PPC clinicians to describe and disseminate more detailed descriptions of successes and challenges with program implementation to help build and grow further PPC initiatives in LMICs.