Background
Palliative care is an important component of pediatric oncology care, especially for children who will not be cured of their disease. However, barriers remain to integration of this ...service. One barrier is the perception that it indicates “giving up.” This study examined if palliative care involvement was associated with a decreased intensity of care at the end of life for children with malignancy at a large academic center with a well‐established palliative care program.
Procedure
This is a retrospective chart review that measured intensity of care as the number of emergency department visits, hospital days, and intensive care unit days in the last one and three months of life. The data were compared for patients with and without palliative care involvement and with and without hospice involvement.
Results
Palliative involvement was not associated with a decrease in the intensity of care in the last three months of life. Hospice care was associated with a decreased intensity of care. These results held true in analyses adjusted for age at death, gender, and type of malignancy.
Conclusions
These data can reassure patients, families, and providers that palliative involvement does not necessitate decreased intensity of care. Patients and families often choose hospice care to decrease the amount of time spent at the hospital and it was associated with meeting that goal.
Background
Altered biodistribution of F-182-fluoro-2-deoxyglucose (FDG) is sometimes encountered in pediatric patients undergoing chemotherapy for lymphoma on post-induction positron emission ...tomography (PET) imaging. A characteristic pattern of increased FDG uptake in white adipose tissue can be seen, particularly in the buccal regions, body wall and gluteal regions, with a shift of radiotracer away from the blood pool and liver. This altered biodistribution has been attributed to effects of corticosteroids in pediatric and adult patients and is important to recognize because of its potential for limiting the diagnostic quality of the PET scan and interfering with therapeutic response assessment.
Objective
In contrast to the well-known metabolically active brown fat seen on up to one-third of pediatric PET scans, white fat is usually non-metabolically active. We sought to determine the incidence of altered distribution of FDG in subcutaneous white adipose tissue in pediatric patients undergoing PET imaging and to assess the association with corticosteroid use.
Materials and methods
We reviewed the medical records and imaging for four children in whom altered biodistribution in white adipose tissue was present on post-induction FDG PET/CT, identified during routine clinical practice. All four were receiving corticosteroids as part of their chemotherapy. We then retrospectively reviewed oncology FDG PET/CT scans over a 2-year period (1,361 scans in 689 patients) to determine the incidence of uptake in white fat by qualitative visual assessment. In the children identified with altered biodistribution, we measured maximum standard uptake value (SUV
max
) and mean standard uptake value (SUV
mean
) in areas of subcutaneous white fat, the buccal regions, body wall or gluteal soft-tissue regions, liver and blood pool. We reviewed all medical records, including medication lists. We summarize the relevant clinical and imaging findings of 13 pediatric patients, including the 4 index patients.
Results
We determined the incidence of FDG uptake in white fat to be rare, found in 9 of 1,361 (0.6%) PET scans performed for pediatric cancer evaluation. FDG uptake was increased in subcutaneous adipose tissue, particularly in the buccal regions, body wall and gluteal regions, with a shift of radiotracer away from the blood pool and liver. The degree of increased uptake in peripheral white fat varied from marked to mild, and the biodistribution was distinct from that of brown adipose tissue. Children with this altered biodistribution were uniformly receiving corticosteroids as part of induction treatment for their cancer, and these findings were only identified on post-induction PET/CT. Follow-up PET/CT documented resolution of this effect after treatment with corticosteroids ceased.
Conclusion
Our findings support the current understanding that characteristic uptake of FDG in white adipose tissue is mediated by corticosteroid effect. Although this altered biodistribution is rare (<1% of PET scans) it could impair the diagnostic quality of the scan, affecting image interpretation, and should be recognized when present.
Background:
Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental ...perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time.
Methods:
This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child’s life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient.
Results:
Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services.
Conclusion:
Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.
Next‐generation sequencing offers opportunities for targeted cancer therapies and may identify pathogenic germline variants. Adolescents’ perception of testing is not well understood. We surveyed 16 ...adolescents and 59 parents regarding motivations, attitudes, and knowledge related to paired tumor/germline sequencing. Participants generally had a good objective understanding of germline genetics and cancer risk, with parents scoring higher than adolescents. Nearly all participants were motivated by a desire to help other patients and to treat their child/themselves. Most adolescents reported involvement in the decision to enroll in the study. Study findings suggest important similarities and differences between parent and adolescent views.
The purpose of this study was to evaluate the clinical utility of Deauville scores in interpretation of end-of-chemotherapy FDG PET scans.
Deauville scores improve the clinical utility of ...end-of-chemotherapy PET, as evidenced by an increase in positive predictive value to 72.7% from 44.4% on the basis of report alone. The negative predictive value remains greater than 95%.
Purpose: To report a case of recurrent retinoblastoma following transpupillary thermotherapy (TTT) with development of scleral ectasia, as well as their successful treatment with intra-arterial ...chemotherapy. Observations: A 15-month-old girl with bilateral retinoblastoma presented with recurrent retinoblastoma and associated scleral ectasia with concern for extraocular extension after receiving multiple round of systemic chemotherapy and TTT. Given her negative systemic evaluation, decision was made to pursue intra-arterial chemotherapy. After completion of six rounds of 3-agent intra-arterial chemotherapy, the recurrent retinoblastoma had completely regressed and the scleral ectasia had improved and fibrosed. Conclusions and importance: The sclera is classically viewed as hyperthermy-resistant to TTT. Here, we describe scleral ectasia due to aggressive TTT with recurrence of the retinoblastoma. Our treatment with intra-arterial chemotherapy not only caused complete regression of the recurrent retinoblastoma, but it also contributed to the stabilization and improvement of the weakened scleral.
Background:
Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child’s ...life. This study asked bereaved parents to reflect on their child’s end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking.
Methods:
An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017.
Results:
Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child’s life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making (P = .002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful.
Conclusions:
Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.
ABSTRACT
Minority populations have been underrepresented in clinical trials, as well as in research biobanks that are created to conduct research with participants' biospecimens and related medical ...and research data. Biobank research raises issues about informed consent and privacy and the confidentiality of participants' personal data. Our study involved three focus groups of 10 adults each that were conducted in a medically underserved, predominantly African American community to elucidate questions and concerns regarding an institutional biobank. Transcripts from the discussion were qualitatively analyzed. Three main themes that arose from the focus groups included the importance of trust, the importance of the community in research, and suggestions to improve trust. The concerns identified in this study provide a starting point for future research to help research institutions become more trustworthy to the communities they serve.
Delivering life-altering news is a difficult task that is frequently the responsibility of emergency physicians. However, the existing frameworks for guiding such interactions fail to address the ...physician-parent-patient dynamic of pediatric emergency encounters. To date, no study has investigated the parental perspective, limiting the ability to provide evidence-based recommendations. This study describes how parents experience receiving life-altering news about their child in emergency settings.
This qualitative study used virtual asynchronous focus groups. Through purposeful sampling of virtual support and advocacy groups, we recruited parents of children diagnosed with either malignancy or type 1 diabetes in an emergency department. Participants were then assigned to private Facebook groups established solely for this study. Questions were posted to these groups over the course of 5 days. At their convenience, participants could post responses, replies, or new questions. Three members of the research team performed thematic analysis and used team consensus to ensure validity.
Four focus groups were conducted with a total of 28 participants. Parents described their experiences receiving life-altering news as a process with 4 primary emergent themes: lens through which they view the experience, the ED encounter, the immediate response, and the long-term impact. Each parent entered into the ED encounter with a unique collection of personal experiences, circumstances, and knowledge. These factors shaped the lens through which they perceived the events of the ED encounter. Ultimately, this determined participants' response to the life-altering news, leading to many long-term impacts on the various dynamics within each parent's life.
The words used to disclose life-altering news are only a small piece of the experience for parents. Personal lenses changed how encounters were perceived, resulting in variable and long-lasting implications. We recommend the following framework for providers: understand the lens, control encounters, manage responses, and respect long-term impacts.
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