Long-term survival for children with diffuse intrinsic pontine glioma (DIPG) is less than 10%, and new therapeutic targets are urgently required. We evaluated a large cohort of DIPGs to identify ...recurrent genomic abnormalities and gene expression signatures underlying DIPG.
Single-nucleotide polymorphism arrays were used to compare the frequencies of genomic copy number abnormalities in 43 DIPGs and eight low-grade brainstem gliomas with data from adult and pediatric (non-DIPG) glioblastomas, and expression profiles were evaluated using gene expression arrays for 27 DIPGs, six low-grade brainstem gliomas, and 66 nonbrainstem low-grade gliomas.
Frequencies of specific large-scale and focal imbalances varied significantly between DIPGs and nonbrainstem pediatric glioblastomas. Focal amplifications of genes within the receptor tyrosine kinase-Ras-phosphoinositide 3-kinase signaling pathway were found in 47% of DIPGs, the most common of which involved PDGFRA and MET. Thirty percent of DIPGs contained focal amplifications of cell-cycle regulatory genes controlling retinoblastoma protein (RB) phosphorylation, and 21% had concurrent amplification of genes from both pathways. Some tumors showed heterogeneity in amplification patterns. DIPGs showed distinct gene expression signatures related to developmental processes compared with nonbrainstem pediatric high-grade gliomas, whereas expression signatures of low-grade brainstem and nonbrainstem gliomas were similar.
DIPGs comprise a molecularly related but distinct subgroup of pediatric gliomas. Genomic studies suggest that targeted inhibition of receptor tyrosine kinases and RB regulatory proteins may be useful therapies for DIPG.
Despite increasing data to support pediatric palliative care (PPC) as an integral component of high‐quality care for children with life‐threatening conditions and their families, timely integration ...of PPC is offered inconsistently to children with high‐risk cancer. In this review, we summarize the growing body of literature in support of early integration of PPC for children with high‐risk cancer and their families, advocating that PPC principles and resources are imperative to holistic cancer‐directed care and rooted in evidence‐based medicine. Finally, we offer possible strategies for optimizing integration of PPC into holistic cancer care for children and families.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SAZU, SBCE, SBMB, UL, UM, UPUK
BACKGROUND:
When children are seriously ill, parents rely on communication with their clinicians. However, in previous research, researchers have not defined how this communication should function in ...pediatric oncology. We aimed to identify these communication functions from parental perspectives.
METHODS:
Semistructured interviews with 78 parents of children with cancer from 3 academic medical centers at 1 of 3 time points: treatment, survivorship, or bereavement. We analyzed interview transcripts using inductive and deductive coding.
RESULTS:
We identified 8 distinct functions of communication in pediatric oncology. Six of these functions are similar to previous findings from adult oncology: (1) building relationships, (2) exchanging information, (3) enabling family self-management, (4) making decisions, (5) managing uncertainty, and (6) responding to emotions. We also identified 2 functions not previously described in the adult literature: (7) providing validation and (8) supporting hope. Supporting hope manifested as emphasizing the positives, avoiding false hopes, demonstrating the intent to cure, and redirecting toward hope beyond survival. Validation manifested as reinforcing “good parenting” beliefs, empowering parents as partners and advocates, and validating concerns. Although all functions seemed to interact, building relationships appeared to provide a relational context in which all other interpersonal communication occurred.
CONCLUSIONS:
Parent interviews provided evidence for 8 distinct communication functions in pediatric oncology. Clinicians can use this framework to better understand and fulfill the communication needs of parents whose children have serious illness. Future work should be focused on measuring whether clinical teams are fulfilling these functions in various settings and developing interventions targeting these functions.
Abstract
Background
Patient-reported outcome (PRO) measurements linked to Common Terminology Criteria for Adverse Events (CTCAE) grading may improve symptom adverse event (AE) reporting in pediatric ...oncology trials. We evaluated construct validity, responsiveness, and test-retest reliability of the Ped-PRO–CTCAE measurement system for children and adolescents undergoing cancer care.
Methods
A total of 482 children and adolescents (7–18 years, 41.5% not non-Hispanic white) newly diagnosed with cancer and their caregivers participated from nine pediatric oncology hospitals. Surveys were completed at 72 hours preceding treatment initiation (T1) and at follow-up (T2) approximately 7–17 days later for chemotherapy, and 4+ weeks for radiation. Psychometric analyses examined the relationship of Ped-PRO-CTCAE items (assessing 62 symptom AEs) with Patient-Reported Outcomes Measurement Information System, Memorial Symptom Assessment Scale, Lansky Play-Performance Scale, and medication use. A separate test-retest study included 46 children.
Results
Ped-PRO-CTCAE and Memorial Symptom Assessment Scale were strongly correlated across age groups at T2: 7–12 years (r = 0.62–0.80), 13–15 years (r = 0.44–0.94), and 16–18 years (r = 0.65–0.98); and over time. The Ped-PRO-CTCAE was strongly correlated with Patient-Reported Outcomes Measurement Information System Pediatric measures at T2; for example, pain interference (r = 0.70, 95% confidence interval CI = 0.64 to 0.76), fatigue severity (r = 0.63, 95% CI = 0.56 to 0.69), and depression severity (r = 0.76, 95% CI = 0.71 to 0.81). Ped-PRO-CTCAE items differentiated children by Lansky Play-Performance Scale and by medication use. Test-retest agreement ranged from 54.3% to 93.5%.
Conclusions
This longitudinal study provided evidence for the construct validity and reliability of the core Ped-PRO-CTCAE symptom AE items relative to several established measures. Additional responsiveness data with clinical anchors are recommended. Incorporation of Ped-PRO-CTCAE in trials may lead to a better understanding of the cancer treatment experience.
Background and objectives
Decisional regret is common in bereaved parents. We aimed to identify factors associated with and to explain patterns of parental decisional regret.
Methods
We used a ...convergent mixed‐methods design including quantitative items and free‐text responses from a survey of parents 6–24 months from their child's death from cancer. Parents expressed whether they had regrets about decisions during the end of their child's life (Yes/No/I don't know) and elaborated with free text. Results of qualitative content analysis of free‐text responses guided development and interpretation of quantitative multinomial models.
Results
Parents (N = 123 surveys, N = 84 free text) primarily identified as White (84%), mothers (63%), and primary caregivers (69%) for their children. Forty‐seven (38%) parents reported decisional regret, 61 (49%) indicated no regret, and 15 (12%) were unsure. Mothers (relative risk RR: 10.3, 95%CI: 1.3, 81.3, p = .03) and parents who perceived greater suffering at the end of their child's life (RR = 3.8, 95%CI: 1.2, 11.7, p = .02) were at increased risk of regret; qualitative evaluation revealed elements of self‐blame and difficulty reconciling treatment choices with the ultimate outcome. Preparation for symptoms was associated with decreased risk of regret (RR = 0.1, 95%CI: 0, .3, p < .01) with qualitative reflections focused on balanced teamwork that alerted parents for what to expect and how to make meaningful final memories.
Conclusions
Though decisional regret is common among cancer‐bereaved parents, mothers and those who perceive more suffering in their children may be at particular risk. Close collaboration between families and clinicians to prepare for symptoms and proactively attend to and minimize suffering may help alleviate decisional regret.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SAZU, SBCE, SBMB, UL, UM, UPUK
Background: Prognostic communication between clinicians and parents in pediatric oncology is complex. However, no review has exclusively examined research on prognostic communication in pediatric ...oncology. In this review, we synthesize the evidence on prognostic communication in pediatric oncology and provide recommendations for future research. Methods: We conducted an integrative review searching six databases for studies on prognostic communication in pediatric oncology as of August 2022. We applied descriptive and narrative approaches to data analysis. Results: Fourteen quantitative and five qualitative studies were included. All studies were conducted in Western developed countries. In total, 804 parents of 770 children with cancer were included. Across studies, parents were predominately female, Non-Hispanic White, and had high school or higher levels of education. Most parents reported that prognostic communication was initiated in the first year after their children’s diagnosis. High-quality prognostic communication was positively associated with trust and hope and negatively associated with parental distress and decisional regret. In qualitative studies, parents suggested that prognostic communication should be open, ongoing, and delivered with sensitivity. Most studies were of moderate quality. The main gaps included inconsistent definitions of prognostic communication, and a lack of comprehensive and validated measurements, high-quality longitudinal studies, and diverse settings and participants. Conclusions: Clinicians should initiate high-quality prognostic communication early on in clinical practice. Future research should consider conducting high-quality longitudinal studies, developing prognostic communication definitions and measurements, and conducting studies across settings with diverse populations.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK, VSZLJ
Parents of children with cancer perceive deficits in quality of prognostic communication. How oncologists disclose information about disease progression and incurability and how prognostic ...communication impacts parental understanding of prognosis are poorly understood. In this study, we aimed to (1) characterize communication strategies used by pediatric oncologists to share prognostic information across a child's advancing illness course and (2) explore relationships between different communication approaches and concordance of oncologist-parent prognostic understanding.
In this prospective, longitudinal, mixed-methods study, serial disease reevaluation conversations were audio recorded across an advancing illness course for children with cancer and their families. Surveys and interviews also were conducted with oncologists and caregivers at specific time points targeting disease progression.
Seventeen children experienced advancing illness on study, resulting in 141 recordings (40 hours). Fewer than 4% of recorded dialogue constituted prognostic communication, with most codes (77%) occurring during discussions about frank disease progression. Most recordings at study entry contained little or no prognosis communication dialogue, and oncologists rated curability lower than parents across all dyads. Parent-oncologist discordance typically was preceded by conversations without incurability statements; ultimately, concordance was achieved in most cases after the oncologist made direct statements about incurability. Content analysis revealed 3 distinct patterns (absent, deferred, and seed planting) describing the provision of prognostic communication across an advancing pediatric cancer course.
When oncologists provided direct statements about incurability, prognostic understanding appeared to improve. Further research is needed to determine optimal timing for prognostic disclosure in alignment with patient and family preferences.
The death of a child is devastating, and complicated grief adversely impacts parental physical and psychosocial well-being. Most research currently is centered on bereaved mothers, and the ...experiences of fathers remains underexplored.
We systematically reviewed the literature to characterize the grief and bereavement experiences of fathers after the death of a child.
We searched Medline, PsycInfo, Embase, and Cumulative Index to Nursing and Allied Health Literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.
Inclusion criteria encompassed English language articles published between 2007 and 2019 that evaluated the grief and bereavement experiences of fathers after the death of their child. We excluded studies describing paternal bereavement after the death of a child aged older than 21 years, stillbirth, miscarriage, or studies that did not specify age of death.
Extracted domains included study design, demographics, findings, and quality assessment.
We screened 1848 deduplicated titles and abstracts and 139 full articles, yielding 21 articles for inclusion in this analysis. Fathers often avoided discussing their grief with others, returned to work earlier, and used goal-oriented tasks as coping strategies. Intense grief reactions and posttraumatic psychological sequelae diminished over time in mothers yet persisted in fathers.
Included studies were primarily descriptive in nature, without ability to ascertain causality. Limited paternal data exists in the literature compared with maternal data.
Despite evolving gender roles, many fathers navigate loss through stoicism, self-isolation, and hard work. For some fathers, these coping mechanisms may be inadequate for navigating grief.
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