Household material hardship and distress among parents of children with advanced cancer: A report from the PediQUEST Response trial.

Background: The prevalence and characteristics of household material hardship (HMH) in families of children with advanced cancer and its association with parent distress are unknown and herein described.

Methods: Parents of children aged ≥2 years with advanced cancer at five cancer centers completed baseline surveys as part of the PediQUEST Response trial. HMH (housing, energy, and food) was operationalized as binary (≥1 HMH domains), ordinal (zero, one, or two or more HMH domains), and housing based (none, nonhousing [food and/or energy], only housing, or housing + other).

Practical considerations for prognostic communication in pediatric cancer.

High-quality communication is essential for the optimal care of children with cancer and their families. There are opportunities for pediatric oncologists to engage in clear and compassionate prognostic communication across the disease trajectory including at the time of diagnosis, disease recurrence or progression, and end of life. Contrary to previously held beliefs, prognostic disclosure supports parental hope and meets the needs and expectations of families who prefer honest conversations about prognosis.

Goals of Care Among Parents of Children Receiving Palliative Care.

Importance: While knowing the goals of care (GOCs) for children receiving pediatric palliative care (PPC) are crucial for guiding the care they receive, how parents prioritize these goals and how their priorities may change over time is not known.

Objective: To determine parental prioritization of GOCs and patterns of change over time for parents of children receiving palliative care.

Design, Setting, And Participants: A Pediatric Palliative Care Research Network's Shared Data and Research cohort study with data collected at 0, 2, 6, 12, 18, and 24 months in hospital, outpatient, or home settings from April 10, 2017, to February 15, 2022, at 7 PPC programs based at children's hospitals across the US.

Pediatric Palliative Care Parents' Distress, Financial Difficulty, and Child Symptoms.

Context: Parents of patients with a serious illness experience psychological distress, which impacts parents' wellbeing and, potentially, their ability to care for their children. Parent psychological distress may be influenced by children's symptom burden and by families' financial difficulty.

Objectives: This study examined the associations among parent psychological distress, parent-reported patient symptoms, and financial difficulty, seeking to determine the relative association of financial difficulty and of patient symptoms to parent psychological distress.

Polysymptomatology in Pediatric Patients Receiving Palliative Care Based on Parent-Reported Data.

Importance: Pediatric palliative care treats patients with a wide variety of advanced illness conditions, often with substantial levels of pain and other symptoms. Clinical and research advancements regarding symptom management for these patients are hampered by the scarcity of data on symptoms as well as an overreliance on clinician report.

Objective: To provide a detailed description of the symptoms among patients receiving pediatric palliative care based on parental report via a validated, structured symptom assessment measure.

Care experiences that foster trust between parents and physicians of children with cancer.

Background: Trust is a core aspect of the patient-physician relationship, especially in cancer care. We sought to examine parents' experiences with trust over the first year after a child's cancer diagnosis.

Procedure: We conducted a prospective, questionnaire-based longitudinal cohort study of parents and physicians of children with cancer at two academic pediatric hospitals.

Tumor bed proton irradiation in young children with localized medulloblastoma.

Background: Radiotherapy is often deferred in very young children with medulloblastoma, in favor of more intense chemotherapy and stem cell rescue; however, posterior fossa radiation has been shown to improve overall survival (OS) and event-free survival compared with adjuvant chemotherapy alone. This study was performed to assess the OS, recurrence-free survival (RFS), patterns of failure, and clinical toxicity for children aged five and under who received focal proton radiation to the tumor bed alone.

Procedure: From 2010 to 2017, 14 patients with newly diagnosed medulloblastoma at one institution received tumor bed irradiation following surgery and chemotherapy.

Racial and Ethnic Differences in Parental Decision-Making Roles in Pediatric Oncology.

Prior work in adult oncology suggests minority patients are less involved in decision making than preferred. However, few studies have explored decision-making experiences of minority parents in pediatric oncology. To determine whether parental decision-making preferences and experiences vary by race/ethnicity.

Attempting to Define Clinical Productivity Metrics among Pediatric Palliative Care Services at Academic Children's Hospitals.

Pediatric palliative care (PPC) programs have grown in size and number at academic children's hospitals in the United States for the past 20 years. Little is known about the relationships between program workforce staffing, billing and coding practices, clinical service requirements for billing providers, and sustainability of program models for billing providers. The authors contacted a convenience sample of 10 PPC program leaders at academic children's hospitals in the United States.

The evolution of regret: decision-making for parents of children with cancer.

Purpose: Parents of children with cancer make treatment decisions in highly emotional states while feeling overwhelmed with information. In previous work, 1 in 6 parents demonstrated heightened decisional regret regarding treatment at diagnosis. However, it is unclear how regret evolves over time.

Inclusion of children in the initial conversation about their cancer diagnosis: impact on parent experiences of the communication process.

Introduction: Including children in medical conversations is considered the standard of care for children with cancer. However, previous qualitative research has raised concerns about how the child's presence impacts the parent's communication experience. The current study examines the frequency and impact of child presence during a serious medical conversation on the parent's communication experience in pediatric oncology.

Decisional burden among parents of children with cancer.

Background: Despite growing evidence and support for shared decision making, little is known about the experiences of parents who hold more active roles than they wish.

Methods: This was a prospective cohort study of 372 parents of children with cancer and their oncologists at 2 academic pediatric hospitals. Parents were surveyed within 12 weeks of the diagnosis, and they were assessed for associated factors and outcomes of holding a more active decision-making role than they preferred.

Self-reported fatigue in children with advanced cancer: Results of the PediQUEST study.

Background: Pediatric cancer-related fatigue is prevalent and significantly impairs health-related quality of life, yet its patterns and correlates are poorly understood. The objectives of this study were to describe fatigue as prospectively reported by children with advanced cancer and to identify the factors associated with fatigue and associated distress.

Methods: Children (age ≥2 years) with advanced cancer (N = 104) or their parents at 3 academic hospitals reported symptoms at most weekly over 9 months using the computer-based Pediatric Quality of Life Evaluation of Symptoms Technology (PediQUEST) system.

Parental distress and desire for information regarding long-term implications of pediatric cancer treatment.

Background: Parents of children with cancer have unmet information needs regarding future limitations resulting from cancer or its treatment. Prior research has demonstrated that, in early care discussions, clinicians focus on the acute effects of therapy rather than long-term limitations, partly due to worries of causing distress. The validity of concerns regarding distress is unknown.

Supporting Caregivers of Patients With Cancer: A Summary of Technology-Mediated Interventions and Future Directions.

This paper aims to review literature published on the support of cancer caregivers with health technology. Eighteen articles were reviewed to better understand cancer caregiving and categorized into four different themes: (1) design guidelines, (2) information facilitation, (3) social support, and (4) multicomponent interventions. Analysis of the current articles revealed that there are substantial gaps in knowledge regarding a range of health technologies that facilitate family caregiver support and its distribution to health institutions.

The relationship between household income and patient-reported symptom distress and quality of life in children with advanced cancer: A report from the PediQUEST study.

Background: Children with advanced cancer experience high symptom distress, which negatively impacts their health-related quality of life (HRQOL). To the authors' knowledge, the relationship between income and symptom distress and HRQOL is not well described.

Methods: The Pediatric Quality of Life and Symptoms Technology (PediQUEST) multisite clinical trial evaluated an electronic patient-reported outcome system to describe symptom distress and HRQOL in children with advanced cancer via repeated surveys.

Compassionate Discharges From the PICU.

Objectives: This article focuses on compassionate discharge from an ICU setting for pediatric patients.

Data Sources: Not Applicable.

Study Selection: Not Applicable.

Parent understanding of the risk of future limitations secondary to pediatric cancer treatment.

Background: Parents and physicians may have different understandings of a child's risk of future limitations due to cancer or cancer treatment. We evaluated alignment between parent- and physician-estimated risk of late effects.

Methods: We surveyed 352 parents of children with cancer within 12 weeks of diagnosis, and the children's oncologists, at Dana-Farber/Boston Children's Cancer and Blood Disorders Center and Children's Hospital of Philadelphia.

Sources of parental hope in pediatric oncology.

Background: Hope is a multidimensional concept that is important for all parents of children with cancer. However, most work has focused on advanced cancer and poor prognoses. We examined hopes of all parents of children with cancer longitudinally during the first year of treatment.

Intended and unintended consequences: Ethics, communication, and prognostic disclosure in pediatric oncology.

Background: The majority of patients desire all available prognostic information, but some physicians hesitate to discuss prognosis. The objective of the current study was to examine outcomes of prognostic disclosure among the parents of children with cancer.

Methods: The authors surveyed 353 parents of children with newly diagnosed cancer at 2 tertiary cancer centers, and each child's oncologist.

How Parents of Children With Cancer Learn About Their Children's Prognosis.

Objectives: To determine which prognostic information sources parents find informative and which are associated with better parental understanding of prognosis.

Methods: Prospective, questionnaire-based cohort study of parents and physicians of children with cancer at 2 academic pediatric hospitals. We asked parents how they learned about prognoses and evaluated relationships between information sources and prognostic understanding, defined as accuracy versus optimism.

Disparities in prognosis communication among parents of children with cancer: The impact of race and ethnicity.

Background: Most parents of children with cancer say they want detailed information about their child's prognosis. However, prior work has been conducted in populations of limited diversity. The authors sought to evaluate the impact of parental race/ethnicity on prognosis communication experiences among parents of children with cancer.

Longitudinal parental preferences for late effects communication during cancer treatment.

Few studies have investigated parent preferences for late effects communication during pediatric cancer treatment. We used questionnaire data to assess whether parental preferences for late effects information change over the year after diagnosis. Most parents found this information to be very/extremely important at baseline, assessed soon after diagnosis, (94%, 153/162), 4 months (91%, 147/162), and 12 months (96%, 156/163).

Prognostic disclosures over time: Parental preferences and physician practices.

Background: Although the majority of parents of children with cancer say they want prognostic information, to the authors' knowledge little is known regarding how their desire for and experiences with prognosis communication change over time.

Methods: A longitudinal, prospective questionnaire-based cohort study of 156 parents of children with cancer treated at 2 academic pediatric hospitals was performed. Previously published scales were administered at the time of diagnosis and at 4 months and 12 months later.