<p><strong>CONTEXT: </strong>Pediatric oncology patients often receive prolonged courses of opioids, which can result in constipation.</p>

<p><strong>OBJECTIVES: </strong>Comparing patients who received senna matched with similar patients who received other oral bowel medications, determine the subsequent risk of "problematic constipation," assessed as the occurrence of the surrogate markers of receiving an enema, escalation of oral bowel medications, and abdominal radiographic imaging.</p>

<p><strong>METHODS: </strong>This was a retrospective cohort study of hospitalized pediatric oncology patients less than 21&nbsp;years of age in 78 children's and adult hospitals between 2006 and 2011 who were started on seven consecutive days or more of opioid therapy and were started on an oral bowel medication within the first two days of opioid therapy. Clinically detailed administrative data were used from the Pediatric Health Information System and the Premier Perspective Database. After performing propensity score matching of similar patients who started senna and who started a different oral bowel medication, Cox regression modeling was used to compare the subsequent hazard of the surrogate markers.</p>

<p><strong>RESULTS: </strong>The final matched sample of 586 patients averaged 11.5&nbsp;years of age (range 0-20&nbsp;years); 41.8% (n&nbsp;=&nbsp;245) had blood cancer, 50.3% (n&nbsp;=&nbsp;295) had solid tumor cancer, and 7.9% (n&nbsp;=&nbsp;46) had brain cancer. Initiating senna therapy within two days of starting the prolonged opioid course, compared with initiating another oral bowel medication, was significantly associated with a lower hazard during the ensuing five days for receipt of an enema (hazard ratio [HR], 0.31; 95% CI, 0.11-0.91) or undergoing abdominal radiographic imaging (HR, 0.74; 95% CI, 0.55-0.98), was marginally associated with a lower hazard of oral bowel medicine escalation (HR, 0.78; 95% CI, 0.59-1.03), and overall was significantly associated with a lower hazard of the composite end point of problematic constipation (HR, 0.70; 95% CI, 0.56-0.88).</p>

<p><strong>CONCLUSION: </strong>Initiating senna therapy, compared with other oral bowel medications, diminishes the subsequent risk of surrogate markers of problematic constipation in this population.</p>

<p><strong>CONTEXT: </strong>Modifiable factors of health-related quality of life (HRQOL) are poorly described among children with advanced cancer. Symptom-distress may be an important factor for intervention.</p>

<p><strong>OBJECTIVES: </strong>We aimed to describe patient-reported HRQOL and its relationship to symptom distress.</p>

<p><strong>METHODS: </strong>Prospective, longitudinal data from the multicenter Pediatric Quality of Life and Symptoms Technology (PediQUEST) study included primarily patient-reported symptom-distress and HRQOL, measured at most weekly with the Memorial Symptoms Assessment Scale and Pediatric Quality of Life [PedsQL] inventory, respectively. Associations were evaluated using linear mixed-effects models adjusting for sex, age, cancer type, intervention arm, treatment intensity, and time since disease progression.</p>

<p><strong>RESULTS: </strong>Of 104 enrolled patients, 49% were female, 89% were white, and median age was 12.6 years. Nine hundred and twenty surveys were completed over nine months of follow-up (84% by patients). The median total PedsQL score was 74 (IQR 63-87) and was "poor/fair" (e.g., &lt;70) 38% of the time. "Poor/fair" categories were highest in physical (53%) and school (48%) compared to emotional (24%) and social (16%) subscores. Thirteen of 24 symptoms were independently associated with reductions in overall or domain-specific HRQOL. Patients commonly reported distress from two or more symptoms, corresponding to larger HRQOL score reductions. Neither cancer type, time since progression, treatment intensity, sex, nor age was associated with HRQOL scores in multivariable models. Among 25 children completing surveys during the last 12 weeks of life, 11 distressing symptoms were associated with reductions in HRQOL.</p>

<p><strong>CONCLUSION: </strong>Symptom-distress is strongly associated with HRQOL. Future research should determine whether alleviating distressing symptoms improves HRQOL in children with advanced cancer.</p>

<p><strong>BACKGROUND: </strong>Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions.</p>

<p><strong>OBJECTIVE: </strong>To describe patterns of missing data in the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study, and highlight challenges in asking sensitive research questions.</p>

<p><strong>DESIGN: </strong>Cross-sectional, survey-based study embedded within a randomized controlled trial.</p>

<p><strong>SETTING: </strong>Three large children's hospitals: Dana-Farber/Boston Children's Cancer and Blood Disorders Center (DF/BCCDC); Children's Hospital of Philadelphia (CHOP); and Seattle Children's Hospital (SCH).</p>

<p><strong>MEASUREMENTS: </strong>At the time of their child's enrollment, parents completed the Survey about Caring for Children with Cancer (SCCC), including demographics, perceptions of prognosis, treatment goals, quality of life, and psychological distress.</p>

<p><strong>RESULTS: </strong>Eighty-six of 104 parents completed surveys (83% response). The proportion of missing data varied by question type. While 14 parents (16%) left demographic fields blank, over half (n=48; 56%) declined to answer at least one question about their child's prognosis, especially life expectancy. The presence of missing data was unrelated to the child's diagnosis, time from progression, time to death, or parent distress (p&gt;0.3 for each). Written explanations in survey margins suggested that addressing a child's life expectancy is particularly challenging for parents.</p>

<p><strong>CONCLUSIONS AND RELEVANCE: </strong>Parents of children with cancer commonly refrain from answering questions about their child's prognosis, however, they may be more likely to address general cure likelihood than explicit life expectancy. Understanding acceptability of sensitive questions in survey-based research will foster higher quality palliative care research.</p>

<p><strong>PURPOSE: </strong>This study aimed to determine whether feeding back patient-reported outcomes (PROs) to providers and families of children with advanced cancer improves symptom distress and health-related quality of life (HRQoL).</p>

<p><strong>PATIENTS AND METHODS: </strong>This study was a parallel, multicentered pilot randomized controlled trial. At most once per week, children age ≥ 2 years old with advanced cancer or their parent completed the computer-based Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) survey consisting of age- and respondent-adapted versions of the Memorial Symptom Assessment Scale (MSAS), Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL4.0), and an overall Sickness question. In the intervention group (n = 51), oncologists and families received printed reports summarizing PROs; e-mails were sent to oncologists and subspecialists when predetermined scores were exceeded. No feedback was provided in the control group (n = 53). Primary outcomes included linear trends of MSAS, PedsQL4.0 total and subscale scores, and Sickness scores during 20 weeks of follow-up, along with child, parent, and provider satisfaction with PediQUEST feedback.</p>

<p><strong>RESULTS: </strong>Feedback did not significantly affect average MSAS, PedsQL4.0, or Sickness score trends. Post hoc subgroup analyses among children age ≥ 8 years who survived 20 weeks showed that feedback improved PedsQL4.0 emotional (+8.1; 95% CI, 1.8 to 14.4) and Sickness (-8.2; 95% CI, -14.2 to -2.2) scores. PediQUEST reports were valued by children, parents, and providers and contributed at least sometimes to physician initiation of a psychosocial consult (56%).</p>

<p><strong>CONCLUSION: </strong>Although routine feedback of PROs did not significantly affect the child's symptoms or HRQoL, changes were in expected directions and improvements observed in emotional HRQoL through exploratory analyses were encouraging. Importantly, children, parents, and providers value PRO feedback.</p>

<p><strong>CONTEXT: </strong>Despite emerging evidence of substantial financial distress in families of children with complex illness, little is known about economic hardship in families of children with advanced cancer.</p>

<p><strong>OBJECTIVES: </strong>To describe perceived financial hardship, work disruptions, income losses, and associated economic impact in families of children with advanced cancer stratified by federal poverty level (FPL).</p>

<p><strong>METHODS: </strong>Cross-sectional survey of 86 parents of children with progressive, recurrent, or nonresponsive cancer at three children's hospitals. Seventy-one families with complete income data (82%) are included in this analysis.</p>

<p><strong>RESULTS: </strong>Parental work disruptions were prevalent across all income levels, with 67 (94%) families reporting some disruption. At least one parent quit a job because of the child's illness in 29 (42%) families. Nineteen (27%) families described their child's illness as a great economic hardship. Income losses because of work disruptions were substantial for all families; families at or below 200% FPL, however, were disproportionately affected. Six (50%) of the poorest families lost more than 40% of their annual income as compared with two (5%) of the wealthiest families (P&nbsp;=&nbsp;0.006). As a result of income losses, nine (15%) previously nonpoor families fell from above to below 200% FPL.</p>

<p><strong>CONCLUSION: </strong>The economic impact of pediatric advanced cancer on families is significant at all income levels, although poorer families suffer disproportionate losses. Development of ameliorative intervention strategies is warranted.</p>

<p><strong>IMPORTANCE: </strong>Parent psychological distress can impact the well-being of childhood cancer patients and other children in the home. Recognizing and alleviating factors of parent distress may improve overall family survivorship experiences following childhood cancer.</p>

<p><strong>OBJECTIVES: </strong>To describe the prevalence and factors of psychological distress (PD) among parents of children with advanced cancer.</p>

<p><strong>DESIGN: </strong>Cohort study embedded within a randomized clinical trial (Pediatric Quality of Life and Evaluation of Symptoms Technology [PediQUEST] study).</p>

<p><strong>SETTING: </strong>Multicenter study conducted at 3 children's hospitals (Boston Children's Hospital, Children's Hospital of Philadelphia, and Seattle Children's Hospital).</p>

<p><strong>PARTICIPANTS: </strong>Parents of children with advanced (progressive, recurrent, or refractory) cancer.</p>

<p><strong>MAIN OUTCOME MEASURE: </strong>Parental PD, as measured by the Kessler-6 Psychological Distress Scale.</p>

<p><strong>RESULTS: </strong>Eighty-six of 104 parents completed the Survey About Caring for Children With Cancer (83% participation); 81 parents had complete Kessler-6 Psychological Distress Scale data. More than 50% of parents reported high PD and 16% met criteria for serious PD (compared with US prevalence of 2%-3%). Parent perceptions of prognosis, goals of therapy, child symptoms/suffering, and financial hardship were associated with PD. In multivariate analyses, average parent Kessler-6 Psychological Distress Scale scores were higher among parents who believed their child was suffering highly and who reported great economic hardship. Conversely, PD was significantly lower among parents whose prognostic understanding was aligned with concrete goals of care.</p>

<p><strong>CONCLUSIONS AND RELEVANCE: </strong>Parenting a child with advanced cancer is strongly associated with high to severe levels of PD. Interventions aimed at aligning prognostic understanding with concrete care goals and easing child suffering and financial hardship may mitigate parental PD.</p>

<p><strong>BACKGROUND: </strong>The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child.</p>

<p><strong>OBJECTIVE: </strong>(i) Describe the problems and hopes reported by mothers, fathers and physicians of children receiving palliative care; (ii) examine the observed concordance between participants; (iii) examine parental perceived agreement; and (iv) examine whether parents who identified specific problems also specified corresponding hopes, or whether the problems were left 'hopeless'.</p>

<p><strong>METHOD: </strong>Seventy-one parents and 43 physicians were asked to report problems and hopes and perceived agreement for 50 children receiving palliative care. Problems and hopes were classified into eight domains. Observed concordance was calculated between parents and between each parent and the physicians.</p>

<p><strong>RESULTS: </strong>The most common problem domains were physical body (88%), quality of life (74%) and medical knowledge (48%). The most common hope domains were quality of life (88%), suffering (76%) and physical body (39%). Overall parental dyads demonstrated a high percentage of concordance (82%) regarding reported problem domains and a lower percentage of concordance on hopes (65%). Concordance between parents and physicians regarding specific children was lower on problem (65-66%) and hope domains (59-63%). Respondents who identified problems regarding a child's quality of life or suffering were likely to also report corresponding hopes in these domains (93 and 82%, respectively).</p>

<p><strong>CONCLUSION: </strong>Asking parents and physicians to talk about problems and hopes may provide a straightforward means to improve the quality of shared decision making for critically ill children.</p>