Search

PURPOSEAlthough financial hardship in childhood cancer contributes to poor outcomes, no standardized tool to assess its impact exists. Existing methods are heterogeneous and designed using high-income country (HIC), adult perspectives. This project aimed to construct a stakeholder-informed conceptual framework of financial hardship in childhood cancer with global relevancy.METHODSGroup concept mapping, a participatory mixed-methods approach, was used. Participants were parents or caregivers of a child with cancer, childhood cancer survivors, and clinical or nonclinical support personnel, fluent in English, Spanish, or Portuguese. A representative panel established a comprehensive list of relevant items. Participants individually sorted these items into concepts and then rated each item for impact using a four-point Likert scale. Multidimensional scaling and hierarchical cluster analysis identified concepts. Descriptive statistics were calculated for impact ratings.RESULTSOne fourth (21/80) of participants were parents/caregivers or childhood cancer survivors. Participants worked in clinical (44/80), charity/volunteer (27/80), and other nonclinical (13/80) roles. Of the 41 represented countries, 78.0% (32) were low- and middle-income countries (LMICs). Conceptual themes spanned six distinct clusters: medical, nonmedical, assistance and support, treatment impact, family impact, and caregiver impact. These were distinct in composition compared with an existing framework for adult oncology. Caregiver impact (mean, 3.39) and treatment impact (mean, 3.29) were the highest rated clusters, and impact ratings were higher in LMICs compared with HICs.CONCLUSIONWe developed a framework for financial hardship in childhood cancer that reflects the voices of stakeholders, including parents and caregivers, from diverse global contexts. The findings lay a foundation for the development and validation of tools to systematically assess financial hardship in families of children with cancer and inform effective policies and interventions.

PURPOSEEarly integration of pediatric palliative care (PPC) for children with cancer is critical to improving the quality of life of both the patient and family. Understanding physician perceptions of palliative care and perceived barriers to early integration is necessary to develop PPC in Brazil.METHODSThe Assessing Doctors' Attitudes on Palliative Treatment survey was modified for use in Brazil. The survey was open from January 2022 to June 2022 and distributed to physicians of all specialties from participating institutions who treat children with cancer. Statistical analysis was complemented by qualitative analysis of open-ended responses.RESULTSA total of 272 respondents participated. Most respondents reported access to PPC experts for consultation (77.2%) and 34.5% indicated previous palliative care training. Physician knowledge of PPC was generally aligned with WHO guidance (median alignment, 93.0%; range, 80.5%-98.2%). However, about half (53.3%) felt comfortable addressing physical needs of patients receiving PPC, 35.3% addressing emotional needs, 25.8% addressing spiritual needs, and 33.5% addressing grief and bereavement needs. Most respondents (65.4%) felt palliative care should be involved from diagnosis, but only 10.3% stated that this occurred in their setting. The most important barriers identified were physician discomfort (89.0%), limited physician knowledge (88.6%), and lack of home-based services (83.8%).CONCLUSIONDespite a strong understanding of the role of palliative care, physicians in Brazil reported low confidence delivering PPC to children with cancer. Additionally, physicians generally believed that PPC should be integrated earlier in the disease trajectory of children with cancer. This work will direct educational and capacity building initiatives to ensure greater access to high-quality PPC for children with cancer in Brazil to address patient and family suffering.