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). Associations between HMH and parent distress measured by the State-Trait Anxiety Inventory-State and the 10-item Center for Epidemiologic Studies Depression Scale were estimated via linear models adjusting for confounders. RESULTS: Among 150 parents, 41% reported ≥1 HMH (housing, 28% [only housing, 8%; housing + other, 20%]; energy, 19%; food, 27%). HMH was more prevalent among Hispanic, other non-White race, Spanish-speaking, and single parents and those with lower education (associate degree or less) or who were uninsured/Medicaid-only insured. Parents endorsing HMH reported higher anxiety (mean difference [MD], 9.2 [95% CI, 3.7-14.7]) and depression (MD, 4.1 [95% CI, 1.7-6.5]) scores compared to those without HMH. Distress increased with the number of hardships, particularly housing insecurity. Specifically, parents experiencing housing hardship, alone or combined, reported higher distress (housing only: anxiety: MD, 10.2 [95% CI, 1.8-18.5]; depression: MD, 4.9 [95% CI, 1.3-8.6]; housing + other HMH: anxiety: MD, 12.0 [95% CI, 5.2-18.9]; depression: MD, 4.8 [95% CI, 1.8-7.8]). CONCLUSIONS: HMH is highly prevalent in pediatric advanced cancer, especially among historically marginalized families. Future research should investigate whether interventions targeting HMH, particularly housing stabilization efforts, can mitigate parent distress. PLAIN LANGUAGE SUMMARY: In our cohort of parents of children with advanced cancer, household material hardship (HMH) was highly prevalent and significantly associated with higher parent distress. Housing hardship was the primary driver of this association. Families of children with advanced cancer may benefit from systematic HMH screening as well as targeted HMH interventions, especially stabilizing housing.

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. These communication encounters can be challenging with many oncologists having little training in this important skill. In this summary, we aim to provide practical guidance for prognostic communication in pediatric cancer across the illness trajectory giving phrases we have found helpful including a brief overview of some published communication frameworks utilized in the care of pediatric oncology patients and families.

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. Participants included parents of patients, birth to 30 years of age, who received PPC services. Exposures: Analyses were adjusted for demographic characteristics, number of complex chronic conditions, and time enrolled in PPC. Main Outcomes: Parents' importance scores, as measured using a discrete choice experiment, of 5 preselected GOCs: seeking quality of life (QOL), health, comfort, disease modification, or life extension. Importance scores for the 5 GOCs summed to 100. Results: A total of 680 parents of 603 patients reported on GOCs. Median patient age was 4.4 (IQR, 0.8-13.2) years and 320 patients were male (53.1%). At baseline, parents scored QOL as the most important goal (mean score, 31.5 [SD, 8.4]), followed by health (26.3 [SD, 7.5]), comfort (22.4 [SD, 11.7]), disease modification (10.9 [SD, 9.2]), and life extension (8.9 [SD, 9.9]). Importantly, parents varied substantially in their baseline scores for each goal (IQRs more than 9.4), but across patients in different complex chronic conditions categories, the mean scores varied only slightly (means differ 8.7 or less). For each additional study month since PPC initiation, QOL was scored higher by 0.06 (95% CI, 0.04-0.08) and comfort scored higher by 0.3 (95% CI, 0-0.06), while the importance score for life extension decreased by 0.07 (95% CI, 0.04-0.09) and disease modification by 0.02 (95% CI, 0-0.04); health scores did not significantly differ from PPC initiation. Conclusions and Relevance: Parents of children receiving PPC placed the highest value on QOL, but with considerable individual-level variation and substantial change over time. These findings emphasize the importance of reassessing GOCs with parents to guide appropriate clinical intervention.

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. METHODS: Cross-sectional study of baseline data for 601 parents of 532 pediatric palliative care patients enrolled in a prospective cohort study conducted at seven US children's hospitals. Data included self-reported parent psychological distress and parent report of child's symptoms and family financial difficulty. We used ordinary least squares multiple regressions to examine the association between psychological distress and symptom score, between psychological distress and financial difficulty, and whether the degree of financial difficulty modified the relationship between psychological distress and symptom score. RESULTS: The majority of parents were moderately to severely distressed (69%) or severely distressed (17%) and experienced some degree of financial difficulty (65%). While children's symptom scores and family financial difficulty together explained more of the variance in parental psychological distress than either variable alone, parental distress was associated more strongly, and to a larger degree, with financial difficulty than with symptom scores alone. CONCLUSIONS: Parent psychological distress was associated with parent-reported patient symptoms and financial difficulty. Future work should examine these relationships longitudinally, and whether interventions to improve symptom management and ameliorate financial difficulties improve parental outcomes.

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. Design, Setting, and Participants: Baseline data for this cross-sectional analysis were collected between April 10, 2017, and February 5, 2020, from pediatric palliative care programs in 7 children's hospitals located in Akron, Ohio; Boston, Massachusetts; Birmingham, Alabama; Houston, Texas; Minneapolis, Minnesota; Philadelphia, Pennsylvania; and Seattle, Washington. Data were collected in the hospital, outpatient, and home setting from patients 30 years of age or younger who were receiving pediatric palliative care at 1 of the study sites. Exposures: Analyses were stratified by patients' demographic characteristics, including age, and by whether the patients had received a diagnosis of any of 10 non-mutually exclusive complex chronic condition categories. Main Outcomes and Measures: Twenty symptoms measured via the modified Memorial Symptom Assessment Scale, which scores the frequency and severity of any symptom that is present and provides a total symptom score. Results: Among the first 501 patients enrolled, the median age was 4.1 years (interquartile range, 0.8-12.9 years), 267 (53.3%) were male, and 356 (71.1%) were White. The most prevalent complex chronic conditions included gastrointestinal (357 [71.3%]), neurologic (289 [57.7%]), and cardiovascular (310 [61.9%]) conditions; 438 patients (87.4%) were technology dependent. Parents reported a mean (SD) of 6.7 (3.4) symptoms per patient and a median of 7 symptoms (interquartile range, 4-9 symptoms). A total of 367 patients (73.3%) had 5 or more symptoms. The 5 most prevalent symptoms were pain (319 [63.7%]; 95% CI, 59.4%-67.8%), lack of energy (295 [58.9%]; 95% CI, 54.5%-63.1%), irritability (280 [55.9%]; 95% CI, 51.5%-60.2%), drowsiness (247 [49.3%]; 95% CI, 44.9%-53.7%), and shortness of breath (232 [46.3%]; 95% CI, 41.9%-50.7%). Although older patients were reported by parents as having experienced more symptoms and having higher total symptom scores, variation across condition categories was relatively minor. Patients in the upper 10th percentile of total symptom scores had a median of 12.0 symptoms (interquartile range, 11-13). Conclusions and Relevance: In this cross-sectional study, most children receiving palliative care were experiencing polysymptomatology. An important subgroup of patients frequently experienced numerous severe symptoms. Assessment and management of patients with polysymptomatology are critical aspects of pediatric palliative care.

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. We evaluated trust among 166 parents of children with cancer over the first year after diagnosis. Surveys were administered after diagnosis, at 4 months, and at 12 months after diagnosis. RESULTS: Seventy-one percent of parents trusted the child's oncologist "completely" at baseline, as did 79% at 4 months and 77% at 12 months. At baseline, high-quality physician communication (OR 4.11 [1.78-9.51], P = .001) and information (OR 2.82 [1.29-6.16], P = .01) were associated with trust, after adjustment for parent gender, race/ethnicity, and education. Parents were less likely to trust the physician completely at 12 months if the child had experienced cancer relapse or progression (OR 0.28 [0.10-0.81], P = .02). In a mixed linear model adjusted for parent gender, race/ethnicity, education, and clustering by physician, trust was associated with high-quality communication (OR 3.40 [1.61-7.20], P = .001) and receipt of high-quality information (OR 2.48 [1.18-5.21], P = .02), and inversely associated with relapse or progression (OR 0.39 [0.17-0.92], P = 0.03); trust increased over time (P < .0001). CONCLUSIONS: Most parents form trusting relationships with their children's oncologists. Physicians can foster trust through patient-centered communication and provision of high-quality information about a child's cancer. Poor outcomes such as relapse are a threat to trust.

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

Background: 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. Objective: To determine whether parental decision-making preferences and experiences vary by race/ethnicity. Design: Questionnaire-based cohort study. Setting/Subjects: Three hundred sixty five parents of children with cancer and their oncologists at two academic centers. Measurements: Parents reported on preferred and actual decision-making roles. Associations between race/ethnicity and decision-making outcomes determined by chi-squared test. Results: Most parents preferred shared decision making (235/368, 64%), whereas 23% (84/368) preferred parent-led decision making and 13% (49/368) preferred oncologist-led decision making. Parental decision-making preferences did not differ by race/ethnicity (p = 0.38, chi-squared test). However, the actual role parents played in decision making differed by parental race/ethnicity, with 25% (71/290) of white parents reporting parent-led decision making, versus 37% (9/24) of black parents, 48% (13/27) of Hispanic parents, and 56% (15/27) of Asian/other parents (p = 0.005, chi-squared test). Oncologists accurately predicted parental preferences for decision making 49% of the time (n = 165/338), but accuracy also differed by race and ethnicity. Oncologists accurately predicted parental preferences for 53% of white parents (140/266), 23% of black parents (5/22), 37% of Hispanic parents (10/27), and 43% of Asian/other race parents (10/23) (p = 0.026, chi-squared test). Conclusions: Minority parents held more active roles than white parents, and oncologists had more difficulty predicting decisional preferences for minority parents relative to white parents. These findings suggest that minority parents are at risk of inferior decision-making experiences.

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. We aimed to determine whether parents of children with cancer experience decisional regret over time and to identify parental characteristics and clinician behaviors associated with longitudinal regret. METHODS: Prospective, questionnaire-based cohort study of parents of children with cancer at two academic pediatric hospitals. Parents reported decisional regret at diagnosis, 4 months, and 12 months. RESULTS: At baseline, 13% of parents (21/158) reported heightened regret, 11% (17/158) at 4 months (p = 0.43, McNemar's test relative to baseline), and 11% (16/158) at 12 months (p = 0.35 relative to baseline and p = 0.84 relative to 4 months). In multivariable analysis using generalized estimating equations adjusted for the time point of survey completion, heightened regret was associated with non-white race/ethnicity (OR 11.57, 95% CI 3.53 to 41.05, p < .0001) and high anxiety (OR 2.01, 95% CI 1.04 to 3.90, p = .04). Parents with high peace of mind (OR 0.24, 95% CI 0.09 to 0.62, p = .003) and those reporting high-quality information (OR 0.22, 95% CI 0.07 to 0.69, p = 0.01) had lower odds of heightened regret. We found no association between heightened regret and the time point of survey administration. CONCLUSIONS: A small, significant proportion of parents experience heightened regret throughout the first year of their child's cancer treatment; non-white parents are at higher risk. Effective communication may protect against regret.

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

Introduction: 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. Methods: The authors contacted a convenience sample of 10 PPC program leaders at academic children's hospitals in the United States. Program leaders were asked to provide information about billing provider full-time equivalent (FTE) staffing, billing and coding practices, and productivity metrics for a three-month period, from January 1 to March 31, 2017. Results: Ten programs participated in the convenience sample survey, and seven provided information about billing and coding practices. For the seven programs that provided evaluation and management data, calculated estimate of mean work Relative Value Unit (wRVU) production per 1.0 FTE per year was 1626. Calculated estimate of consultations per 1.0 FTE per month was 15. Calculated estimate of total clinical encounters per 1.0 FTE per month was 70. Conclusions: The relationships between PPC billing provider productivity and clinical workload are complex and vary widely among a convenience sample of academic PPC programs. Given the high burnout rates in the field, efforts should be made to more clearly define these relationships to promote sustainability of both billing and nonbilling PPC providers.

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. The median age of the patients was 40 months (range, 10.9-62.9 months). RESULTS: With a median follow-up of 54 months, four patients relapsed: three within the central nervous system (CNS) outside of the posterior fossa, and one within the tumor bed after subtotal resection. All relapses occurred within 28 months after the completion of radiation therapy. Five-year OS and RFS for this cohort of patients were 84% (95% CI, 48%-96%) and 70% (95% CI, 38%-88%), respectively. One patient experienced significant tumor regrowth soon after completion of radiation, autopsy showed viable tumor and necrosis near and within the brainstem, with relation to radiation unknown; however, no other acute clinical toxicities greater than grade 2 were observed in this group of patients. In the nine patients with available performance status follow-up, no significant changes in Lansky performance status were observed. CONCLUSIONS: Five-year OS and RFS following tumor bed irradiation in young children with medulloblastoma appear to be improved compared with other studies that forego the use of radiation therapy in this patient population. This approach should be further investigated in young children with medulloblastoma.

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. METHODS: Three hundred sixty parents of children newly diagnosed with cancer completed questionnaires assessing the child's presence during the initial conversation with the oncologist about diagnosis and treatment and parental communication experiences. Primary oncologists completed a survey question about the child's prognosis. RESULTS: Sixty-one percent of children were present during the initial conversation, with lowest rates among children aged 3-6 (44%) and 7-12 (44%). Child presence was not associated with parents' reports that they received prognostic information (p = 0.20), high-quality information (p = 0.19), or high-quality communication about the child's cancer (p = 1.0). DISCUSSION: The parent's communication experience is not diminished by the choice to include the child. Given the bioethical imperative to include children in conversations about serious illness whenever possible, this concern should not be used to exclude children, but rather to give parents additional time of their own when needed to fully process decisions.

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. Parents were asked about their preferred and actual roles in decision making. Oncologists were asked to estimate parental preferences. RESULTS: Most parents preferred to share decision making with the oncologist (64% [236 of 372]); however, 13% (49 of 372) preferred oncologist-led decision making. Most parents fulfilled their ideal decision-making role (66% [244 of 372]), but a notable minority were either more involved (14% [52 of 372]) or less involved than they preferred (20% [76 of 372]; P < .0001 [McNemar test]). Oncologists recognized parents' preferred roles in 49% of cases (167 of 341); 24% (82 of 341) of parents preferred more active roles than the oncologist recognized, and 27% (92 of 341) preferred less active roles than recognized. No parent or communication characteristics were found that were associated with parents' holding a more active role than desired in decision making. Parents who held more active roles in decision making than they wished had higher odds of decisional regret (odds ratio, 3.75; 95% confidence interval, 2.07-6.80; P < .0001). CONCLUSIONS: Although many parents fulfill their desired roles in decision making about their child's cancer, some are asked to take on more active roles than they wish. Holding a more active role than desired may lead to increased decisional regret.

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. In the current study, the authors evaluated parental distress associated with information regarding future limitations, and the extent to which distress is associated with information preferences. METHODS: The authors surveyed 355 parents of children with cancer within 3 months of diagnosis, and the children's physicians at Dana-Farber Cancer Institute/Boston Children's Cancer and Blood Disorders Center and the Children's Hospital of Philadelphia. The primary outcome was parental distress associated with information regarding long-term limitations. RESULTS: Approximately 46% of parents found information regarding future limitations to be extremely or very upsetting. In multivariate analysis, parents were more likely to consider information regarding future limitations distressing if they also found prognostic information upsetting (odds ratio [OR], 5.36; P<.001), struggled to accept their child's illness (OR, 2.57; P<.001), or had depression (OR, 1.79; P=.01). However, approximately 92% of parents considered information regarding potential future limitations to be extremely/very important. Those who found information regarding future limitations distressing were more likely to consider it important (96% vs 89%; P=.03) and to desire a precise understanding of their child's risks (92% vs 80%; P=.001). CONCLUSIONS: Although information regarding future limitations caused by cancer treatment is upsetting to many parents, the majority of them desire this information, and those who are distressed are more likely to value this information.

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. PediQUEST administered a modified version of the Memorial Symptom Assessment Scale (PQ-MSAS) as part of a randomized controlled trial. Clinical information was abstracted from medical records. Primary outcomes were: 1) fatigue prevalence (yes/no response to PQ-MSAS fatigue item) and 2) fatigue distress (composite score of severity, frequency, and bother). Multivariable models were constructed to identify factors independently associated with fatigue prevalence and scores reflecting fatigue distress (ie, burden). RESULTS: Of 920 reports, 46% (n = 425) noted fatigue. When reported, fatigue was of high frequency in 41% of respondents (n = 174), severity in 25%of respondents (n = 107), and bother in 34%of respondents (n = 143). Most reports (84%; n = 358) were associated with scores indicating fatigue distress. In multivariable analyses, fatigue was associated with older age, lower hemoglobin, and distress from particular symptoms (anorexia, nausea, sleep disturbance, sadness, and irritability). In contrast, fatigue distress was associated with distress from nausea, cough, and pain. CONCLUSIONS: Fatigue is common among children with advanced cancer and is often highly distressing. Interventions focused on uncontrolled symptoms may ease fatigue distress in children with advanced cancer.

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. The authors performed a secondary analysis of PediQUEST data for those children with available parent-reported household income (dichotomized at 200% of the Federal Poverty Level and categorized as low income [<$50,000/year] or high income [≥$50,000/year]). The prevalence of the 5 most commonly reported physical and psychological symptoms was compared between groups. Multivariable generalized estimating equation models were used to test the association between household income and symptom distress and HRQOL. RESULTS: A total of 78 children were included in the analyses: 56 (72%) in the high-income group and 22 (28%) in the low-income group. Low-income children were more likely to report pain than high-income children (64% vs 42%; P=.02). In multivariable models, children from low-income families demonstrated a uniform trend toward higher total (ßlow-high =3.1; 95% confidence interval [95% CI], -0.08 to 6.2 [P=.06]), physical (ß=3.8; 95% CI, -0.4 to 8.0 [P=.09]), and psychological (ß=3.46; 95% CI, -1.91 to 8.84 [P=.21]) symptom distress compared with children from high-income families. Low income was associated with a uniform trend toward lower total (ß=-7.9; 95% CI, -14.8, to -1.1 [P=.03]), physical (ß=-11.2; 95% CI, -21.2 to -1.2 [P=.04]), emotional (ß=-5.8; 95% CI, -13.6 to 2.0 [P=.15]), social (ß=-2.52; 95% CI, -9.27 to 4.24 [P=.47]), and school (ß=-9.8; 95% CI, -17.8 to -1.8 [P=.03]) HRQOL. CONCLUSIONS: In this cohort of children with advanced cancer, children from low-income families were found to experience higher symptom burden and worse QOL.

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. Further research is needed in this area, as family caregivers are primary providers of essential elements of care to patients. Future studies should unpack existing barriers that interfere with the development of health technology interventions in cancer care.

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. DATA EXTRACTION: Not Applicable. DATA SYNTHESIS: The rationale for compassionate discharge is described, along with suggestions for assessing feasibility. A patient case highlights the potential benefits of and provides specific examples of steps involved in the process. A general framework for consideration of compassionate discharge, along with a checklist, is provided to highlight the importance of detailed planning and communication. CONCLUSIONS: Although many children die in an ICU setting, some families desire end-of-life care in a nonhospital setting, often at home. For children dependent on technology, there are considerable logistical challenges to overcome, and it may not always be possible. However, with meticulous planning and close collaboration between intensive care staff, palliative care staff, and other community services, compassionate discharge can be done successfully and provide the child and family the opportunity for end-of-life care in the place most meaningful to them.

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. We assessed parent and physician estimations of the child's risk of future limitations in physical abilities, intelligence, or quality of life (QOL) due to cancer treatment. Physician-estimated risk of limitations ≥50% was considered high risk. RESULTS: Physicians considered 22% of children at high risk of physical impairments, 9% at high risk for impaired intelligence, and 6% at high risk for impaired QOL. Among high-risk children, 38% of parents recognized this risk in physical abilities, 21% in intelligence, and 5% in QOL. In multivariable analysis, parental understanding of risk, defined as concordant parent and physician estimates, was greater among parents of children at lower risk of future limitations (odds ratio 2.59; 95% confidence interval 1.35-4.96). Regardless of risk, 92% of parents considered it very/extremely important to receive information about potential health implications of cancer treatment. CONCLUSIONS: Although most parents want information about life after cancer, most parents of children at high risk of future impairment do not recognize this risk. Strategies to improve communication about late effects throughout pediatric cancer treatment should prioritize meeting information needs and improving parent understanding of the risk of impairment.

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. PROCEDURE: Prospective, longitudinal, questionnaire-based cohort study of parents and physicians of children with cancer at two academic pediatric hospitals. Parents reported on general sense of hopefulness and specific hopes at time of diagnosis (N = 374); a subset of parents (N = 164) were followed longitudinally at 4 and 12 months. RESULTS: Fifty-five percent of parents (N = 206/374) reported being extremely hopeful in general at baseline. Hopefulness did not significantly change over time, and most parents (51-58%) reported being extremely hopeful regardless of prognosis (P = 0.66). Most parents (N = 327/356) considered hope for cure to be an extremely important source of hope; most also reported hope that the child would feel loved (N = 328/356), that the child would have the best possible quality of life (N = 316/356), and that they would always do all they could for the child (N = 300/356). Hope for cure was slightly lower among parents of children with less than a 50% chance of cure at baseline (N = 53/63) when compared to those with better prognoses (moderately likely cure, N = 76/78; very likely cure, N = 198/215) (P = 0.02). CONCLUSIONS: Many hopes contribute to parental hopefulness, not just hope for cure. This hopefulness persists over time, even when the prognosis is poor. Clinicians should focus on supporting the myriad hopes that contribute to overall hopefulness.