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Disparities in care, treatment-related toxicity and health-related quality of life (HRQoL) for adolescents and young adults (AYAs, aged 15-39 years) with cancer are under-addressed partly because of limited collection of patient-reported outcomes (PROs) in cancer clinical trials (CCTs). The AYA years include key developmental milestones distinct from younger and older patients, and cancer interrupts attainment of critical life goals. Lack of consensus on a standardized approach to assess HRQoL and treatment-related toxicity in AYA CCTs has limited the ability to improve patient outcomes. The National Cancer Institutes Clinical Trials Network AYA PRO Task Force was assembled to reach consensus on a core set of PROs and foster its integration into AYA CCTs. Eight key considerations for selecting the core PRO AYA battery components were identified: relevance to AYAs; importance of constructs across the age continuum; prioritization of validated measures; availability of measures without licensing fees; availability in multiple languages; applicability to different cancer types and treatments; ability to measure different HRQoL domains and toxicities; and minimized burden on patients and sites. The Task Force used a modified Delphi approach to identify key components of the PRO battery. The Patient-Reported Outcomes Measurement Information System (PROMIS) and the PRO Common Terminology Criteria for Adverse Events Measurement System met all criteria and were selected to assess HRQoL and treatment toxicity, respectively. Investigators are rapidly incorporating the recommendations of the Task Force into AYA trials. Inclusion of a standardized assessment of HRQoL and treatment toxicities in AYA CCTs is a vital first step to develop interventions to improve health outcomes for AYAs diagnosed with cancer.

Little is known about how nursing care at the end of a childs life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in childrens end-of-life care and parents qualitative perceptions. We used a mixed methods design, combining quantitative data from the RESTORE clinical trial with qualitative interviews with bereaved parents. Patients who died during RESTORE were included in quantitative analyses. A subset of their parents was interviewed 7 to 11 years later. The quantitative analyses included 104 children. Eight parents were interviewed; 4 had a child die after cancer, and 4 had a child die after a complex chronic illness. Quantitatively, patients pain and sedation scores were generally comfortable. Children died with multiple invasive devices in place. Parents descriptions of their childs comfort and critical care requirements differed by illness trajectory (cancer, complex chronic illness). Parents memories of their childs suffering aligned with peaks in clinical scores, rather than averages. Invasive devices and equipment altered parents ability to make meaningful final memories with the dying child. Pediatric intensive care clinicians may need to broaden how they attend to dying childrens pain and corresponding parental distress, as parents memories of their dying childs suffering persist for years.

Study objectivesThe primary objective of this study was to compare circadian activity rhythms (CARs) of adolescents within 5 years of completing cancer treatment (survivors) with that of healthy adolescent controls. Secondary objectives were to explore differences in the relationship of CARs and fatigue between survivors and controls and between early survivors (

PURPOSE:Robust circadian rhythms are increasingly recognized as essential to good health. Adult cancer patients with dysregulated circadian activity rhythms (CAR) experience greater fatigue, lower responsiveness to chemotherapy, and shorter time to relapse. There is scant research describing circadian rhythms and associated outcomes in children with cancer. As part of a larger study examining whether a cognitive-behavioral intervention could preserve sleep in children and adolescents with central nervous system cancers hospitalized for high-dose chemotherapy (HDCT), this study aimed to compare CAR of these children to published values and to investigate the relationship between CAR and fatigue. METHODS:Participants aged 4-19 years wore an actigraph throughout their hospitalization (5 days). From activity counts recorded by actigraphy, six CAR variables were calculated: amplitude, 24-h autocorrelation (r24), dichotomy index (I < O), interdaily stability (IS), intradaily variability (IV), and acrophase. Parent-reported child fatigue and child/adolescent self-reported fatigue measures were collected daily. RESULTS:Thirty-three participants were included. Three CAR variables (amplitude, r24, and I < O) showed dysregulation compared to published values. Older age was significantly associated with later acrophase and greater dysregulation of all other CAR variables. Controlling for age, more dysregulated amplitude (p = 0.001), r24 (p = 0.003), IS (p = 0.017), and IV (p = 0.001) were associated with higher parent-reported fatigue; more dysregulated IV (p = 0.003) was associated with higher child-reported fatigue. CONCLUSIONS:Participants demonstrated dysregulated CAR during hospitalization for HDCT. Greater dysregulation was associated with greater fatigue. Research on circadian dysregulation and its relationship to health-related outcomes in children with cancer, and interventions to support circadian rhythmicity, is urgently needed.

ObjectivesTo determine whether a sleep intervention compared with standard of care (SOC) was successful in preserving nighttime sleep in children with central nervous system cancers hospitalized for high-dose chemotherapy (HDCT) and autologous stem cell rescue, and to explore associations between sleep and fatigue during treatment.MethodsAn unblinded, randomized, controlled, multicomponent intervention (NCT00666614) including evidence-based cognitive and behavioral strategies to improve sleep was implemented in 33 children (age 4-12 years) and adolescents (age 13-19 years) during hospitalization. Children wore an actigraph to measure sleep and wake, and reported fatigue scores daily. Parents concurrently kept a sleep diary and reported fatigue scores for their children.ResultsThe mean age was 9.5 ± 3.9 years, 81.8% were white, and 60.6% were male. Sleep in all children was seriously disturbed throughout the study. Children in the intervention group maintained their longest nighttime sleep across the study, while it declined in children receiving SOC (P = 0.009 for interaction). There were few other differences in sleep between groups. Controlling for age and baseline fatigue, higher nighttime activity score, and lower percent sleep were significantly associated with higher next-day adolescent-reported fatigue (P < 0.05); longest sleep was significantly positively associated with next-day child-reported fatigue (P = 0.018).ConclusionIn this sample of children undergoing HDCT, a multicomponent sleep intervention modestly preserved nighttime sleep duration, although overall sleep was poor in both groups. Sleep is an integral component of health, and may influence outcomes of children receiving HDCT. Further investigation into methods of preserving sleep in children undergoing intensive cancer therapy is warranted.

OBJECTIVES: Pediatric patients with life-limiting diagnoses frequently seek care in the pediatric emergency department (PED) during times of acute illness, or at end-of-life (EOL) . Although the population of patients with life-limiting diagnoses is heterogenous, clinician expertise in EOL communication is essential to providing family-centered care. In this study, we explored PED physician and nurse experiences with communication when eliciting EOL values, including factors specified to the PED environment, clinician perceptions of family supports and preferences, and clinicians' self-reflection of their skills and challenges in this sphere. METHODS: We performed a prospective qualitative study using semistructured interviews of PED physicians and nurses recruited from a quaternary care center. Thematic content analysis was performed on the transcribed interviews to identify codes and, ultimately, themes. RESULTS: We interviewed 17 emergency department clinicians, including 10 physicians and 7 nurses. Thematic content analysis revealed 6 salient themes. The first theme related to contextual factors of the emergency department environment. Two additional themes related to patient and family characteristics, including unique patient and family factors and clinician interpretation of parental/family needs. Lastly, we found 3 clinician-focused themes including knowledge gaps in EOL communication, communication styles and priorities in EOL conversations with families, and coping with ethical challenges. CONCLUSIONS: PED clinicians report communication-related challenges to providing optimal care for families and patients with life-limiting diagnoses. Participants self-identified gaps in communication skills in this area. Future studies should focus on clinician educational interventions on the basis of this needs assessment and include family perspectives to develop best practice. [ABSTRACT FROM AUTHOR]

Aims: There are marked inequities in clinical outcomes and rates of diabetes technology use among youth with type 1 diabetes (T1D). The quantitative data from our mixed methods cohort study identified significant improvements in glycaemia and quality of life in participants. We aimed to use qualitative methods to provide further insight into our quantitative findings in the setting of underlying health disparities. Methods: Fifteen publicly insured, insulin pump‐naïve non‐Hispanic Black youth aged 6–21 years with T1D and baseline haemoglobin A1c (HbA1c) ≥86 mmol/mol (10%) and their parents participated in a mixed methods cohort study. Semi‐structured interviews were conducted separately with parents and youth after completion of 6 months of HCL use. Three topic areas were explored: (1) Experience using HCL, (2) barriers to HCL and (3) facilitators to accessing HCL. Semantic content analysis and consensus coding involving two team members were used to generate themes. Thematic saturation was achieved. Results: Youth (Medianage 14.9 years, 67% female) and parents (92% female) were interviewed. Youth and their parents reported that access to HCL provides a new outlook on living with T1D, although managing T1D is still hard. They felt that diabetes technology is most helpful for those struggling with management. Participants experienced barriers to access including misconceptions of HCL systems, clinician bias and systemic racism. They suggested these barriers can be overcome by offering diabetes technology education for all people with T1D, increasing awareness of HCL in the community and providing resources to overcome barriers created by social determinants of health. Conclusions: The voices of historically minoritised youth with suboptimal T1D control and their parents provide important, previously unreported experiences and perspectives on barriers and facilitators to using HCL that will shape interventions to improve equity in access to diabetes technology. [ABSTRACT FROM AUTHOR]

Purpose: Young adult cancer survivors experience disruptions in various life domains (e.g., relationships, academic/career) during and after treatment. This study examined life disruptions and related supports to update interventions to improve psychological outcomes. Methods: In April–July 2023, young adult survivors (n = 23) were recruited (via clinics, support groups, nonprofit organizations, etc.) to complete semi-structured interviews assessing cancer's impact across life domains, how they coped with related disruptions, and facilitators to improved psychosocial well-being. We used a dual deductive–inductive approach to develop a codebook and then coded transcripts in Dedoose. Results: This sample was on average 33.7 years old (standard deviation [SD] = 4.4), 78.3% female, 73.9% non-Hispanic White, 47.8% married/cohabitating, 2.4 (SD = 1.0) years post-diagnosis, 1.4 years (SD = 0.9) post-treatment, and largely diagnosed with breast cancer (52.1%) or leukemia/lymphoma (34.7%). The most salient themes related to disruptions included mental health, feelings of isolation during survivorship, and disruptions to career and relationships with family or partners. Participants reported challenges navigating these feelings and disruptions, and difficulty understanding and conveying their needs. Many experienced limited support for navigating cancer-related trauma and life disruptions as a survivor. Participants also reported some positive impacts, like reevaluating their values and goals or feeling resilient, and emphasized the need to identify supports, accept that life had changed because of cancer, and have their needs and continued struggles validated by others during survivorship. Conclusions: Young adults experience ongoing disruptions across multiple life domains, underscoring the need for integrated, longer-term psychosocial supports to help them navigate these disruptions and reevaluate their goals. [ABSTRACT FROM AUTHOR]

BackgroundParents of children with complex, chronic conditions report a desire for continuity of care, but relatively little is known about the ways in which nursing continuity of care occurs and the extent to which it is delivered in the inpatient setting.ObjectivesThe objective of this analysis, which arose from a study on best practices in parent/nurse interactions in the pediatric intensive care unit (PICU), was to explore the delivery of continuity of nursing care in the PICU from the perspective of both parents and nurses.MethodsA qualitative, grounded theory study using situational analysis was conducted with seven parents and 12 nurse participants from a single PICU. Data sources included in-depth interviews, observation, and organizational written materials. Data were coded and analyzed using memoing and situational and positional maps to highlight emerging themes, context, and positions within the data.ResultsParents repeatedly endorsed a desire for continuity of nursing care, wanting to ensure that the bedside nurse valued their child as an individual and understood the complexities of the child's care regimen. Nurses understood this need but faced both contextual and personal challenges to achieving continuity, including fluctuations in staffing needs, training demands, fear of emotional entanglement, and concern for missed learning opportunities.DiscussionContinuity of nursing care is highly valued by parents of children with complex chronic condition in the PICU, but significant barriers to optimal delivery exist within the current critical care environment. Mechanisms for supporting nurses to deliver continuity of care are needed, as are alternative ways to help parents feel that all nurses caring for their child have the knowledge necessary to deliver safe and compassionate care.

BackgroundThe authors have previously demonstrated highly reliable automated classification of free-text computed tomography (CT) imaging reports using a hybrid system that pairs linguistic (natural language processing) and statistical (machine learning) techniques. Previously performed for identifying the outcome of orbital fracture in unprocessed radiology reports from a clinical data repository, the performance has not been replicated for more complex outcomes.ObjectivesTo validate automated outcome classification performance of a hybrid natural language processing (NLP) and machine learning system for brain CT imaging reports. The hypothesis was that our system has performance characteristics for identifying pediatric traumatic brain injury (TBI).MethodsThis was a secondary analysis of a subset of 2,121 CT reports from the Pediatric Emergency Care Applied Research Network (PECARN) TBI study. For that project, radiologists dictated CT reports as free text, which were then deidentified and scanned as PDF documents. Trained data abstractors manually coded each report for TBI outcome. Text was extracted from the PDF files using optical character recognition. The data set was randomly split evenly for training and testing. Training patient reports were used as input to the Medical Language Extraction and Encoding (MedLEE) NLP tool to create structured output containing standardized medical terms and modifiers for negation, certainty, and temporal status. A random subset stratified by site was analyzed using descriptive quantitative content analysis to confirm identification of TBI findings based on the National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements project. Findings were coded for presence or absence, weighted by frequency of mentions, and past/future/indication modifiers were filtered. After combining with the manual reference standard, a decision tree classifier was created using data mining tools WEKA 3.7.5 and Salford Predictive Miner 7.0. Performance of the decision tree classifier was evaluated on the test patient reports.ResultsThe prevalence of TBI in the sampled population was 159 of 2,217 (7.2%). The automated classification for pediatric TBI is comparable to our prior results, with the notable exception of lower positive predictive value. Manual review of misclassified reports, 95.5% of which were false-positives, revealed that a sizable number of false-positive errors were due to differing outcome definitions between NINDS TBI findings and PECARN clinical important TBI findings and report ambiguity not meeting definition criteria.ConclusionsA hybrid NLP and machine learning automated classification system continues to show promise in coding free-text electronic clinical data. For complex outcomes, it can reliably identify negative reports, but manual review of positive reports may be required. As such, it can still streamline data collection for clinical research and performance improvement.