<p><strong>Importance: </strong>For clinicians caring for adolescent patients living with progressive, life-threatening illness, discussions regarding prognosis, goals of care, and treatment options can be extremely challenging. While clinicians should respect and help to facilitate adolescents' emerging autonomy, they often must also work with parents' wishes to protect patients from the emotional distress of hearing bad news.</p>

<p><strong>Observations: </strong>We reviewed the ethical justifications for and against truth-telling, and we considered the published ethical and practice guidance, as well as the perspectives of patients, parents, and clinicians involved in these cases. We also explored particular challenges with respect to the cultural context, timing, and content of conversations at the end of adolescents' lives. In most cases, clinicians should gently but persistently engage adolescents directly in conversations about their disease prognosis and corresponding hopes, worries, and goals. These conversations need to occur multiple times, allowing significant time in each discussion for exploration of patient and family values. While truth-telling does not cause the types of harm that parents and clinicians may fear, discussing this kind of difficult news is almost always emotionally distressing. We suggest some "phrases that help" when clinicians strive to deepen understanding and facilitate difficult conversations with adolescents, parents, and other family members.</p>

<p><strong>Conclusions and Relevance: </strong>The pediatrician's opportunities to engage in difficult conversations about poor prognosis may be rare, but such conversations can be crucial. These discussions affect how patients live at the end of their lives, how they die, and how their families go on. Improved understanding of basic principles of communication, as well as augmented understanding of patient, family, and clinician perspectives may better enable us to navigate these important conversations.</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>Childhood cancer survivors (CCS) have a high risk of medical late effects following cancer therapy. Psychosocial late effects are less often recognized. Many CCS do not receive long-term follow-up (LTFU) care, and those who do are rarely screened for psychosocial late effects. An interdisciplinary team conducted a systematic review of qualitative and quantitative studies to assess social, educational, vocational, psychological, and behavioral outcomes along with factors related to receipt of LTFU care. We propose that psychosocial screening be considered a standard of care in long-term follow-up care and that education be provided to promote the use LTFU care starting early in the treatment trajectory.</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>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>PURPOSE: </strong>Thousands of children are living with advanced cancer; yet patient-reported outcomes (PROs) have rarely been used to describe their experiences. We aimed to describe symptom distress in 104 children age 2 years or older with advanced cancer enrolled onto the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) Study (multisite clinical trial evaluating an electronic PRO system).</p>

<p><strong>METHODS: </strong>Symptom data were collected using age- and respondent-adapted versions of the PediQUEST Memorial Symptom Assessment Scale (PQ-MSAS) at most once per week. Clinical and treatment data were obtained from medical records. Individual symptom scores were dichotomized into high/low distress. Determinants of PQ-MSAS scores were explored using linear mixed-effects models.</p>

<p><strong>RESULTS: </strong>During 9 months of follow-up, PQ-MSAS was administered 920 times: 459 times in teens (99% self-report), 249 times in children ages 7 to 12 years (96% child/parent report), and 212 times in those ages 2 to 6 years (parent reports). Common symptoms included pain (48%), fatigue (46%), drowsiness (39%), and irritability (37%); most scores indicated high distress. Among the 73 PQ-MSAS surveys administered in the last 12 weeks of life, pain was highly prevalent (62%; 58% with high distress). Being female, having a brain tumor, experiencing recent disease progression, and receiving moderate- or high-intensity cancer-directed therapy in the prior 10 days were associated with worse PQ-MSAS scores. In the final 12 weeks of life, receiving mild cancer-directed therapy was associated with improved psychological PQ-MSAS scores.</p>

<p><strong>CONCLUSION: </strong>Children with advanced cancer experience high symptom distress. Strategies to promote intensive symptom management are indicated, especially with disease progression or administration of intensive treatments.</p>