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Objective Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality self-report instruments to be used in pediatrie oncology research studies. This study's objective was to conduct a systematic literature review of existing English language instruments used to measure self-reported symptoms in children and adolescents undergoing cancer treatment. Methods A comprehensive literature search was conducted in MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO to identify relevant articles published through November 10, 2016. Using pre-specified inclusion/exclusion criteria, six trained reviewers carefully screened abstracts and full-text articles for eligibility. Results There were 7738 non-duplicate articles identified in the literature search. Forty articles met our eligibility criteria, and within these articles, there were 38 self-report English symptom instruments. Most studies evaluated only cross-sectional psychometric properties, such as reliability or validity. Ten studies assessed an instrument's responsiveness or ability to detect changes in symptoms over time. Eight instruments met our criteria for use in future longitudinal pediatrie oncology studies. Conclusions This systematic review aids pediatrie oncology researchers in identifying and selecting appropriate symptom measures with strong psychometric evidence for their studies. Enhancing the child's voice in pediatrie oncology research studies allows us to better understand the impact of cancer and its treatment on the lives of children.

Assessing patient-reported outcomes (PROs) through interviews or conversations during clinical encounters provides insightful information about survivorship. This study aims to test the validity of natural language processing (NLP) and machine learning (ML) algorithms in identifying different attributes of pain interference and fatigue symptoms experienced by child and adolescent survivors of cancer versus the judgment by PRO content experts as the gold standard to validate NLP/ML algorithms. This cross-sectional study focused on child and adolescent survivors of cancer, aged 8 to 17 years, and caregivers, from whom 391 meaning units in the pain interference domain and 423 in the fatigue domain were generated for analyses. Data were collected from the After Completion of Therapy Clinic at St. Jude Children's Research Hospital. Experienced pain interference and fatigue symptoms were reported through in-depth interviews. After verbatim transcription, analyzable sentences (ie, meaning units) were semantically labeled by 2 content experts for each attribute (physical, cognitive, social, or unclassified). Two NLP/ML methods were used to extract and validate the semantic features: bidirectional encoder representations from transformers (BERT) and Word2vec plus one of the ML methods, the support vector machine or extreme gradient boosting. Receiver operating characteristic and precision-recall curves were used to evaluate the accuracy and validity of the NLP/ML methods. Compared with Word2vec/support vector machine and Word2vec/extreme gradient boosting, BERT demonstrated higher accuracy in both symptom domains, with 0.931 (95% CI 0.905-0.957) and 0.916 (95% CI 0.887-0.941) for problems with cognitive and social attributes on pain interference, respectively, and 0.929 (95% CI 0.903-0.953) and 0.917 (95% CI 0.891-0.943) for problems with cognitive and social attributes on fatigue, respectively. In addition, BERT yielded superior areas under the receiver operating characteristic curve for cognitive attributes on pain interference and fatigue domains (0.923, 95% CI 0.879-0.997; 0.948, 95% CI 0.922-0.979) and superior areas under the precision-recall curve for cognitive attributes on pain interference and fatigue domains (0.818, 95% CI 0.735-0.917; 0.855, 95% CI 0.791-0.930). The BERT method performed better than the other methods. As an alternative to using standard PRO surveys, collecting unstructured PROs via interviews or conversations during clinical encounters and applying NLP/ML methods can facilitate PRO assessment in child and adolescent cancer survivors.

Background Most patients with cancer and their caregivers desire honest, clear prognostic communication, yet oncologists often disclose prognosis inconsistently. Prognostic communication becomes even more challenging when disease progression is unclear or equivocal. Presently, oncologist approaches for discussing uncertain disease findings are poorly understood. Methods In this prospective, longitudinal study, we audio-recorded serial disease reevaluation conversations between children with high-risk cancer, their families, and their primary oncologists over 24 months and conducted content analysis at recorded timepoints when oncologists categorized disease progression as equivocal. Results Of the 265 medical discussions recorded across the illness course for 33 patient-parent dyads, a total of 40 recorded discussions took place at equivocal timepoints, comprising > 500 min of medical dialogue. Prognosis talk encompassed < 3% of dialogue and was absent in nearly half of equivocal discussions (17/40, 42.5%). Curability statements were identified in only two conversations. Inductive content analysis of dialogue revealed four distinct patterns for communicating equivocal disease status: (1) up-front reassurance, (2) softening the message, (3) describing possible disease progression without interpretation, (4) expressing uncertainty without discussing the bigger picture. Conclusion Oncologists rarely discuss prognosis with children with high-risk cancer and their families at timepoints when disease progression is not definitive. Formal guidance is needed to better support oncologists in navigating uncertainty while sharing honest, person- and family-centered information about prognosis.

Adolescents commonly experience loss due to death, and perceived closeness to the deceased can often increase the intensity of bereavement. Adolescents and early young adult (AeYA) oncology patients may recall previous losses or experience new losses, possibly of other children with cancer, while coping with their own increased risk of mortality. The bereavement experiences of AeYA patients are not well described in the literature. This analysis of bereavement sought to describe the prevalence and types of losses, the support following a death, and the impact of loss on AeYAs aged 13-21 years with malignant disease (or a hematologic disorder requiring allogeneic transplant). Participants were receiving active oncologic therapy or had completed therapy within the past 3 years. Participants completed a bereavement questionnaire and inventories on depression, anxiety, and somatization. The cross-sectional study enrolled 153 AeYAs (95% participation), most (88%) of whom had experienced a loss due to death. The most commonly reported losses were of a grandparent (58%) or friend (37%). Peer deaths were predominantly cancer related (66%). Many participants (39%) self-identified a loss as \"very significant.\" As loss significance increased, AeYAs were more likely to report that it had changed their life \"a lot/enormously\" (P<0.0001), that they were grieving \"slowly or never got over it\" (P<0.0001), and that they felt a need for more professional help (P = 0.026). Peer loss was associated with increased risk of adverse psychological outcomes (P = 0.029), as was parental loss (P = 0.018). Most AeYAs with serious illness experience the grief process as slow or ongoing. Peer or parental loss was associated with increased risk of negative mental health outcomes. Given the high prevalence of peer loss, screening for bereavement problems is warranted in AeYAs with cancer, and further research on grief and bereavement is needed in AeYAs with serious illness.

Background The death of a child is one of the most devastating events a family can face, resulting in significant physical and psychosocial morbidity. Bereavement support programs have been developed in high-income contexts to address this need. However, little is known about implementing bereavement programs in low-and middle-income countries (LMICs). Here, we describe the implementation of a bereavement program for parents whose children died due to cancer or other catastrophic illnesses. Methods We conducted a retrospective analysis to describe the implementation of a hospital-based End of Life (EoL) care and bereavement program. This program was developed in several stages, including an assessment of bereaved families, development program guidelines, staff training, piloting of the program, refinement, and standardization. The program was developed between 2019 and 2021 in a nonprofit, teaching hospital and referral center for southwestern Colombia. Results Several tools were developed as key components of the bereavement program: a virtual bereavement course; guidance for EoL and bereavement communication and care, memory making, and follow-up calls; a condolence letter template, and group support workshops. A total of 956 healthcare professionals were trained, 258 follow-up calls to bereaved parents were made, 150 individual psychological follow-ups to parents with complicated grief occurred, 79 condolence letters were sent, and 10 support group workshops were carried out. Challenges were identified and overcome, such as limited resources and staff, and cultural perceptions of death. In 2021, this program received an award by the hospital as the Best Strategy to Humanize Healthcare. Conclusions This study highlights the feasibility of developing and implementing EoL and bereavement care programs for parents and families within hospitals in LMICs. Lack of resources, staff, and training are some of the identified challenges to implementation. Utilizing methodological tools allows us to identify facilitator factors and deliverable outcomes of our EoL and bereavement program. This model provides a valuable framework for resource-limited settings.

Purpose Patient/parent perceptions of poor‐quality prognostic disclosure have not been well described, and these data offer important lessons to shape clinical practice and communication skills training. In this study, we aimed to characterize patient/parent negative experiences with prognostic communication to inform future efforts to improve how clinicians disclose prognosis. Patients and Methods Semistructured interviews were conducted with a purposeful sample of pediatric cancer patients (n = 25) and parents (n = 40) across different timepoints in the progressive illness course extending into bereavement. Interviews were audio‐recorded, transcribed, and de‐identified for rapid qualitative analysis, in which multiple analysts used a standardized episode summary template to extract raw data specific to patient/parent narratives about prognostic disclosure experiences. Analysts engaged independently and collaboratively as a team in reflexive memo writing to identify negative experiences with prognostic communication, followed by team discussion to generate concepts and synthesize those concepts into themes. Results More than half of participants (59%) described negative experiences with prognostic disclosure, with parents highlighting distressing communication experiences more often than patients (parents: 32/40, 80% vs. patients: 6/25, 24%). Across patient/parent narratives, three main themes underpinned the perception of poor‐quality prognostic communication: (1) insufficient information, (2) overwhelming or contradictory information, and (3) absence of person‐centered connection. Conclusion Many patients/parents perceived prognostic disclosure to be suboptimal and identified specific features underpinning poor‐quality prognostic communication. These findings will inform future collaborative research with patients, parents, and multidisciplinary clinicians to codesign an intervention that individualizes prognostication to align with patient/parent preferences for receiving information and fostering connection. Patients with cancer and their families have important lessons to teach oncology clinicians about how to improve care. In this study, we asked pediatric patients and parents to reflect on how their doctors talked about prognosis to help us identify ways to improve this process. We learned that when patients and parents feel that the doctor did not discuss prognosis in a good way, it was usually due to (1) insufficient information, (2) overwhelming or contradictory information, and (3) absence of person‐centered connection. These findings will help guide communication training and future research to improve communication.

Background Bereavement after the death of a child is devastating and associated with worse physical and psychosocial well‐being in parents. Evidence suggests that parents desire and benefit from support provided by other bereaved parents. To foster this peer support, an institutional peer‐to‐peer mentorship program for bereaved parents was established, through which trained bereaved parent mentors offer support for newly bereaved parents. Methods Using a retrospective cohort design, we describe the characteristics of participants of the Bereaved Parent Mentorship program. Trained bereaved parent mentors documented encounters with newly bereaved parent mentees using a secure internet‐based form. Mentors summarized each encounter including any concerns or need for professional psychosocial support. Descriptive statistics were used to describe mentor and mentee characteristics; free text from encounter summaries was qualitatively analyzed using content analysis. Results A total of 1368 documented encounters occurred between 150 mentees and 39 mentors from January 1, 2014 to February 29, 2020. Only seven encounters (0.5%) were flagged as serious concern necessitating professional psychosocial support. Four key themes in the encounters between mentors and mentees emerged, including: descriptions of the grief experience, ways in which a mentor supported their mentee, challenges the mentor experienced in supporting the mentee, and personal benefit gained by the mentor from supporting their mentee. Conclusion This structured Bereaved Parent Mentorship program fostered rich interactions between bereaved parent participants, with very few encounters requiring professional assistance. Future research will assess the impact of bereaved mentor programs on resilience and psychosocial, physical, and functional well‐being of parents. This structured Bereaved Parent Mentorship program for parents whose children died of cancer fostered rich interactions between bereaved parent participants. Very few encounters in this program required professional psychosocial assistance. Future research will assess the impact of bereaved mentor programs on resilience and psychosocial, physical, and functional well‐being of parents.

Background Communication between providers and patients' families is an integral part of clinical care. Family concern is a validated component of Pediatric Early Warning Systems (PEWS); however, little is known about the impact of PEWS on provider‐family communication. Methods Semi‐structured interviews were conducted with 83 ward and Pediatric Intensive Care Unit (PICU) providers involved in the care of patients with deterioration at two pediatric oncology hospitals of different resource levels: St. Jude Children's Research Hospital (n = 42) in the United States and Unidad Nacional de Oncología Pediátrica (UNOP, n = 41) in Guatemala. Interviews were conducted in the participants' native language (English or Spanish), transcribed, and translated into English. Transcripts were coded by two researchers and analyzed for thematic content surrounding family communication and concern. Results All participants recognized patients' families as a valuable part of the care team, particularly during events requiring escalation of care. Perceived barriers to communication included limited time spent at the bedside, and, at UNOP, language and literacy challenges which occasionally limited providers' ability to assess family concern and involve families in patient care. Despite these barriers, providers perceived PEWS improved communication by facilitating more interaction with families, allowing for relationship‐building, anticipatory guidance, and destigmatization of the PICU. PEWS assessments also allowed families to contribute to identification of deterioration. Conclusions PEWS improve the quality of communication between providers and families by providing more opportunities for interaction, building relationships, and trust. These findings further support the use of PEWS in the care of children with cancer in hospitals of all resource‐levels. In this qualitative analysis of provider interviews, we identify PEWS as facilitators of communication between providers and patient families in resource‐limited and high‐resource pediatric oncology hospitals. Our findings demonstrate that providers perceive the family concern component of PEWS allows greater inclusion of patient families as a part of the healthcare team.

Background: The demand for children’s palliative care is increasingly urgent, with over 21 million children worldwide needing access, yet only 5–10% currently receiving it. Mapping the development of children’s palliative care is important in tracking progress and focusing priorities for future work. Methods: In 2023, a cross-sectional survey was conducted to assess the status of children’s palliative care globally, focusing on eight key indicators. Children’s palliative care experts and stakeholders were asked to evaluate the perceived levels of development in their countries across five defined levels, ranging from no known provision to broad integration into health care services. Efforts were made to engage non-responding countries. Regional palliative care associations were consulted to validate the results. Results: The survey was distributed to experts in 167/197 countries (85%), achieving data collection for 131 countries (78% of surveys sent). A total of 42% of countries (83) were at the lowest level of development (Level 1), while only 6% (11) of countries reached the highest level (Level 5), showing significant regional variation. An overall increase in children’s palliative care globally was seen, including significant movement between levels. Variations were seen between regions and across country income categories, providing insight to inform ongoing efforts in service development, advocacy, education, research and access to essential medicines. Conclusions: There has been global progress in children’s palliative care, although substantial gaps remain in access, particularly between high-income countries and low- and middle-income countries (LMICs). The study highlights the importance of a comprehensive approach to children’s palliative care, with advocacy and education and training programmes being crucial for sustainable development.

Background/Objectives: Children with cancer suffer due to the underlying disease and prescribed cancer-directed therapies, and non-pharmacologic modalities may offer improved symptom control without additional medications. We sought to elicit knowledge, attitudes, and beliefs of Pediatric Hematology Oncology (PHO) providers surrounding the incorporation of acupuncture for symptom management for their patients. Methods: A cross-sectional survey instrument was created, formatted, and delivered to physicians and advanced practice providers (APPs) at a single US pediatric cancer center. Survey responses were summarized by descriptive statistics. Results: A total of 78 PHO clinicians participated (response rate 29%). Most participants were interested in learning more about acupuncture (n = 42, 56.0%), yet rarely (n = 17, 22.7%) or never (n = 46, 61.3%) recommend acupuncture to patients. Most (n = 51, 73.9%) noted that they would support institutional development of an acupuncture program. Over half (n = 37, 52.2%) indicated their threshold for minimum hematologic indices for acupuncture includes a platelet count greater than 20,000 and absolute neutrophil count (ANC) greater than 500 (n = 37, 54.4%). Approximately two-thirds (n = 52, 66.7%) of participants noted that acupuncture could improve their patient’s quality of life, and most (n = 46, 67.6%) were not worried about harm. Conclusions: Acupuncture for symptom management is an evidenced-based, guideline-concordant recommendation for adults with cancer, but robust data in the pediatric oncology population are lacking. PHO providers do not routinely recommend acupuncture for patients but note that it may improve quality of life. Given their high symptom burden, rigorous studies of non-pharmacologic strategies for pediatric symptom management are vital. Acupuncture should be examined as a potential beneficial adjunct.