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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. The prevalence and characteristics of household material hardship (HMH) in families of children with advanced cancer and its association with parent distress are unknown. This cross‐sectional analysis of 150 parents of children with advanced cancer with baseline data from a multisite parallel randomized controlled trial showed that HMH was highly prevalent and significantly associated with higher parent distress, and that housing hardship was the primary driver of this association. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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 (βlow-high =3.1; 95% confidence interval [95% CI], -0.08 to 6.2 [P=.06]), physical (β=3.8; 95% CI, -0.4 to 8.0 [P=.09]), and psychological (β=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 (β=-7.9; 95% CI, -14.8, to -1.1 [P=.03]), physical (β=-11.2; 95% CI, -21.2 to -1.2 [P=.04]), emotional (β=-5.8; 95% CI, -13.6 to 2.0 [P=.15]), social (β=-2.52; 95% CI, -9.27 to 4.24 [P=.47]), and school (β=-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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. Using multivariable logistic regression, the authors assessed associations between parental report of elements of prognosis discussions with the oncologist (quality of information/communication and prognostic disclosure) and potential consequences of these discussions (trust, hope, peace of mind, prognostic understanding, depression, and anxiety). Analyses were stratified by oncologist-reported prognosis.Results: Prognostic disclosure was not found to be associated with increased parental anxiety, depression, or decreased hope. Among the parents of children with less favorable prognoses (<75% chance of cure), the receipt of high-quality information from the oncologist was associated with greater peace of mind (odds ratio [OR], 5.23; 95% confidence interval [95% CI], 1.81-15.16) and communication-related hope (OR, 2.54; 95% CI, 1.00-6.40). High-quality oncologist communication style was associated with greater trust in the physician (OR, 2.45; 95% CI, 1.09-5.48) and hope (OR, 3.01; 95% CI, 1.26-7.19). Accurate prognostic understanding was less common among the parents of children with less favorable prognoses (OR, 0.39; 95% CI, 0.17-0.88). Receipt of high-quality information, high-quality communication, and prognostic disclosure were not found to be significantly associated with more accurate prognostic understanding.Conclusions: The results of the current study demonstrate no evidence that disclosure is associated with anxiety, depression, or decreased hope. Communication processes may increase peace of mind, trust, and hope. It remains unclear how best to enhance prognostic understanding. Cancer 2018;124:1232-41. © 2017 American Cancer Society. [ABSTRACT FROM AUTHOR]

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.Results: The majority of parents preferred to hear about prognosis in as much detail as possible throughout the first year after a diagnosis of cancer (87%, 85%, and 84%, respectively, at the time of diagnosis, 4 months, and 12 months). Although nearly no parents reported wanting less information (<5% at any time point), a significant percentage reported wanting more information at each time point (25%, 28%, and 24%, respectively, at the time of diagnosis, 4 months, and 12 months). The majority of parents reported having had new prognostic discussions with the physician at each time point (93%, 74%, and 81%, respectively, at the time of diagnosis, 4 months, and 12 months). Irrespective of prognosis, parents were more likely to be satisfied with prognostic communication when physicians provided more extensive disclosure at the time of diagnosis (odds ratio, 1.85 per element of disclosure; 95% confidence interval, 1.25-2.74 [P = .002]) and when physicians discussed prognosis again before 4 months (odds ratio, 8.71; 95% confidence interval, 2.64-28.72 [P = .0004]).Conclusions: The majority of parents wanted detailed, longitudinal prognostic conversations; nearly none of the parents preferred less prognostic information. A return to these conversations over time can help rather than hurt parents. Future studies should assess the ideal contents of these longitudinal discussions, and the communication preferences of pediatric patients. Cancer 2017;123:4031-8. © 2017 American Cancer Society. [ABSTRACT FROM AUTHOR]

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.Methods: In total, 357 parents of children with cancer and the children's physicians were surveyed at Dana-Farber Cancer Institute/Boston Children's Hospital and Children's Hospital of Philadelphia. Outcome measures were parental preferences for prognostic information, physician beliefs about parental preferences, prognosis communication processes, and communication outcomes. Associations were assessed by logistic regression with generalized estimating equations to correct for physician clustering.Results: Two hundred eighty-one parents (79%) were white, 23 (6%) were black, 29 (8%) were Hispanic, and 24 (7%) were Asian/other. Eighty-seven percent of parents wanted as much detail as possible about their child's prognosis, with no significant differences by race/ethnicity (P = .75). However, physician beliefs about parental preferences for prognosis communication varied based on parent race/ethnicity, with physicians considering black and Hispanic parents less interested in details about prognosis than whites (P = .003). Accurate understanding of a less favorable prognosis was greater among white (49%) versus nonwhite parents (range, 20%-29%), although this difference was not statistically significant (P = .14).Conclusions: Most parents, regardless of racial and ethnic background, want detailed prognostic information about their child's cancer. However, physicians underestimate the information needs of black and Hispanic parents. To meet parents' information needs, physicians should ask about parents' information preferences before prognosis discussions. Cancer 2017;123:3995-4003. © 2017 American Cancer Society. [ABSTRACT FROM AUTHOR]