Assessing Pediatric Resident Needs in Grief and Bereavement Education.

CONTEXT: Pediatric residents care for dying children during training. Few educational efforts focus on helping trainees better understand their own grief process and the supports available to them and their patients' families. OBJECTIVES: This work aims to assess pediatric residents' needs and preferences for content included in a curriculum on grief and bereavement. METHODS: Pediatric residents, at a single institution, completed an electronic survey in Spring 2023 on how they cope with patient deaths and their preferences on content in a proposed grief and bereavement curriculum. RESULTS: The survey was emailed to 165 current or recent trainees; 71 surveys were fully completed (43% response rate). Most respondents (63/71, 89%) indicated that a formalized bereavement curriculum for pediatric residents is important. The resources most frequently utilized by residents following a pediatric death included peer support (59/71, 83%), attending a debrief coordinated by residency leadership or the supportive care division (38/71, 54%), and reading a patient's obituary (23/71, 32%). The most desired content areas were institutional services provided to bereaved families (66/71, 93%), unique aspects of healthcare professional grief (58/71, 82%), and experiences of bereaved families hearing from providers after their child's death (56/71, 79%). CONCLUSION: Pediatric residents indicate a strong desire for structured curricula on grief and bereavement focusing on resources that exist for families, approaches to grieving as a healthcare professional, and better understanding the experiences of bereaved families. These data may inform educators on priorities in training and support of pediatric residents on grief and bereavement.

Exploring perceptions of inpatient hospital attire in children with cancer.

BACKGROUND: Attire bolsters identity, self-expression, and comfort. Hospital gowns are known to be distressing in adults. Attitudes of children with cancer toward hospital attire remain uninvestigated and may be a modifiable factor in overall well-being. METHODS: A 39-item mixed methods survey evaluated perceptions of patient attire in children with cancer. Children aged 7-18 years were recruited at an academic medical center. Data analysis included simple statistics and thematic analysis. RESULTS: Forty children with cancer receiving oncologic care participated. Participants' mean age was 12.4 (SD = 3.0, range = 7-17) years, and 25 (62%) were male. Quantitative data revealed 81% of participants preferred their own attire when admitted to the hospital, feeling more comfortable in such when well (91%) or sick (75%). They did not feel like they "must" wear a gown when admitted (60%) and did not want to be asked about preferred inpatient attire (63%). Thematic analysis revealed that children had strong negative views of gowns and preferred to wear their own attire in the hospital, which provided physical and emotional comfort. Children worried wearing their own clothing could impede their care. CONCLUSION: Children with cancer prefer wearing their own clothes in the hospital for physical and emotional comfort. They are willing to wear gowns for ease of care; however, they do not want to arbitrate when they need to make that choice. Providers may ease distress by considering a child's own clothes as default hospital attire with instructions for when a gown is necessary for good clinical care.

Profiles of Symptom Suffering and Functioning in Children and Adolescents Receiving Chemotherapy.

BACKGROUND: Some children and adolescents receiving chemotherapy experience few symptom-related adverse events, whereas others experience multiple adverse events. If oncology nurses could identify patients likely to have pronounced chemotherapy-related adverse events, tailored supportive care could be matched to these patients' symptom burdens. OBJECTIVE: The aim of this study was to identify symptom profiles in children and adolescents before and after chemotherapy, and the sociodemographic and psychological factors associated with profile classification and change. METHODS: Participants ranging from 7 to 18 years (n = 436) completed 6 Patient-Reported Outcomes Measurement Information System pediatric symptom measures within 72 hours preceding (T1) and 1 to 2 weeks after (T2) chemotherapy. Profile membership and change were determined by latent profile/latent transition analyses. Associations with profiles and profile transitions were examined using multinomial logit models and logistic regression. RESULTS: Three symptom suffering profiles were identified at T1 and T2: high, medium, and low. The high symptom suffering profile included the fewest participants (T1, n = 70; T2, n = 55); the low symptom suffering profile included the most participants (T1, n = 200; T2, n = 207). Of the participants, 57% remained in the same profile from T1 to T2. Psychological stress was significantly associated with T1 and T2 profile classifications and profile transition; age was associated with profile classification at T1. CONCLUSION: Three symptom suffering profiles existed in a sample of pediatric patients undergoing chemotherapy, indicating that children and adolescents have differing cancer treatment experiences. IMPLICATIONS FOR PRACTICE: Oncology nurses could screen pediatric oncology patients for their symptom suffering profile membership and subsequently prioritize care efforts for those with a high suffering profile.

Longitudinal use of patient reported outcomes in pediatric leukemia and lymphoma reveals clinically relevant symptomatic adverse events.

BACKGROUND: Leukemia and lymphoma (LL) are the most common cancer diagnoses of childhood with high survival rates, but not without impact on the child's functioning and quality of life. This study aimed to use patient-reported data to describe the symptomatic adverse event (AE) experiences among children with LL diagnoses. METHODS: Two hundred and fifty seven children and adolescents aged 7-18 years with a first LL diagnosis completed the Pediatric Patient-Reported version of the Common Terminology Criteria for Adverse Events (Ped-PRO-CTCAE) and Patient-Reported Outcome Measurement Information System (PROMIS) Pediatric measures before starting a treatment course (T1) and after the treatment (T2). RESULTS: Fatigue was the most severe AE (68.1% at T1; 67% at T2) and caused the most interference over time. Gastrointestinal AEs were also quite common (e.g., nausea 46.3% at T1 and 48.9% at T2; abdominal pain 42.4% at T1; 46.5% at T2). In general, symptoms were present both at T1 and T2 and did not change significantly in severity or interference. The prevalence of AEs varied by LL disease group (e.g., nausea was most common in acute lymphoblastic leukemia (ALL), fatigue was most severe in ALL and Hodgkin Lymphoma (HL), acute myeloid leukemia had the fewest AEs). CONCLUSION: Despite current supportive care regimens, many children with LL continue to report fatigue, pain, insomnia, and gastrointestinal symptoms as the most frequent or severe symptoms during therapy.

Living in an online world: Social media experiences of adolescents and young adults with cancer.

BACKGROUND: Despite widespread use, little is known about how adolescents and young adults (AYA) with cancer use social media (SM). This research characterized use and self-reported SM experiences among AYA with cancer. PROCEDURE: AYA, aged 12-26 years, receiving cancer care completed a mixed-methods survey regarding SM experiences. Clinical information was obtained from the electronic medical record. Data were analyzed with descriptive statistics, t tests, and qualitative content analysis. RESULTS: Thirty-nine AYA with average age 16 (SD = 3.2) years participated. Most were Caucasian (92%) males (54%). Participants had leukemia/lymphoma (56%), solid tumors (33%), and brain tumors (10%). Nearly all (97%) used SM, with YouTube, Snapchat, and Instagram being the most popular. AYA self-reported lower SM use than their smartphone data indicated (2.8 hours/day, SD = 1.2 vs 3.4 hours/day, SD = 1.3; P < 0.001). Participants used SM to obtain information about their cancer (45%), post about cancer (47%), and read about others' cancer experience (50%). One-third made a friend with cancer through SM (32%). Qualitative results indicated that AYA had positive cancer-related SM experiences, including feelings of support (54%), community (27%), distraction (8%), and inspiration (8%). Most denied negative experiences (78%); however, 17% reported cyberbullying related to cancer. CONCLUSIONS: AYA with cancer avidly use SM, noting it provides a sense of support and community. However, one-sixth reported cancer-related cyberbullying. AYA oncology providers have an opportunity to enhance positive and blunt negative SM interactions by addressing and guiding SM use in AYA patients.

Lack of Concordance in Symptomatic Adverse Event Reporting by Children, Clinicians, and Caregivers: Implications for Cancer Clinical Trials.

PURPOSE: To examine concordance in symptomatic adverse event (AE) grading using the Common Terminology Criteria for Adverse Events (CTCAE 4.0) for clinicians and its patient-reported outcome (PRO) versions for children (Ped-PRO-CTCAE) and caregivers (Ped-PRO-CTCAE [Caregiver]). METHODS: Children age 7-18 years with a first cancer diagnosis, their clinicians, and caregivers completed CTCAE-based measures before starting a treatment course (T1) and after the treatment (T2). Grades (0-3) were assigned by each reporter for 15 core AEs spanning physical and mental health. Mean grades were compared between reporters using two-sample t-tests; agreement was estimated using weighted kappa (κ) statistics. Multivariable mixed regression models were used to evaluate associations of clinical factors with AE reporting concordance. Significance was set at α = .05 (two-sided). RESULTS: There were 438 child-clinician-caregiver triads with complete data at either T1 or T2. For children, the mean age was 13 years (standard deviation = 3.4), 53.7% were male, 32.6% non-White, and 56.4% had leukemia/lymphoma. At T1, clinician mean AE grades were significantly lower (ie, better) than children for all AEs and remained significantly lower at T2 except for constipation, nausea, anorexia, neuropathy, and anxiety. Caregiver mean AE grades were similar to children at T1 and significantly higher (ie, worse) at T2 for nausea, vomiting, anorexia, pain, fatigue, anxiety, and depression. Agreement for child-clinician grading was poor-to-fair at T1 (κ range, 0.08-0.34) and T2 (0.11-0.35), and for child-caregiver, was fair-to-good at T1 (0.34-0.65) and T2 (0.24-0.60). No factors were consistently associated with reporter concordance across AEs. CONCLUSION: Compared with children, symptomatic AEs were consistently under-reported by clinicians with low agreement and over-reported by caregivers with low-moderate agreement. Direct reporting by children using Ped-PRO-CTCAE or similar measures should be routinely incorporated for toxicity assessment in clinical trials.

Searching for a cure on Facebook: Patterns of social media use amongst caregivers of children with brain tumors.

OBJECTIVE: Social media (SM) is ubiquitous in modern society. How SM provides information, advice, and community to families coping with childhood brain tumors is poorly understood. We sought to understand how caregivers of children with brain tumors use and are affected by SM. METHODS: A survey was administered to caregivers of children who were receiving or within the last 5 years received chemotherapy for pediatric brain tumors. Differences in variables across groups were evaluated using nonparametric tests and chi-square tests. RESULTS: Thirty-five of 36 caregivers acknowledged use of SM. Facebook was the most used platform (86%). Fifty-eight percent and 47% used SM to read and share information about their child's cancer, respectively. Thirty-four percent were comforted while 40% were bothered by cancer-related information on SM. Eleven participants (31%) sought a second opinion based on information from SM. Caregivers of children with a poor prognosis were more likely to use a treatment from SM that was not initially recommended by their oncologist (p = 0.043). CONCLUSION: SM is commonly used by caregivers to obtain and share care-related information. Many noted positive and negative effects of SM on emotional wellness. SM influenced treatment decisions, and this effect was stronger with poorer prognosis. Our results demonstrate the dichotomous impact of SM in medicine-it is a source of both solace and anxiety, a place to confirm treatment decisions and to create doubt in the treatment decisions of the oncologist. This illustrates the importance of discussing SM with caregivers of children with brain tumors.

Can Steps per Day Reflect Symptoms in Children and Adolescents Undergoing Cancer Treatment?

BACKGROUND: Multiple symptoms occur in children receiving cancer therapy. Decreased steps per day may be associated with burdensome symptoms. OBJECTIVE: To evaluate associations between self-reported symptoms (pain interference, anxiety, depressive symptoms, psychological stress, and fatigue) and function (physical function-mobility and physical activity) and cumulative symptom count with steps per day. METHODS: Five sites enrolled English-speaking children, 8 to 17 years, receiving treatment for a first cancer diagnosis. Patient-reported outcome (PRO) surveys were administered before (T1) and after (T2) a course of chemotherapy. Garmin VivoFit 3 (Garmin International, Olathe, KS) accelerometers were worn 7 days prior to each data point. Univariate changes in scores over time were evaluated with dependent-sample t tests. Pearson correlations examined associations between PRO domains and step count. Multivariable mixed-effect models examined associations between steps and PROs. RESULTS: Participants' (n = 65) steps per day decreased during treatment (4099 [T1] and 3135 [T2]; P < .01), with larger reductions observed during hospitalization and in younger children compared with adolescents. Steps significantly correlated with PROMIS (Patient-Reported Outcome Measurement Information System) Pediatric physical activity and physical function-mobility. Decreased steps per day were associated with increased fatigue and cumulative symptom count. CONCLUSIONS: In children and adolescents with cancer, steps per day can serve as an indicator of fatigue, cumulative symptom count, physical activity, and physical functioning-mobility. IMPLICATIONS FOR PRACTICE: Child self-reports of physical activity and physical function are valid during cancer therapy and should be captured. In the absence of self-report, decreasing step count may prompt additional assessments related to fatigue or cumulative symptom count and trigger early interventions to support physical activity and physical function-mobility.

Recommended scoring approach for the pediatric patient-reported outcomes version of the Common Terminology Criteria for Adverse Events.

BACKGROUND: Collecting symptom, function, and adverse event (AE) data directly from children and adolescents undergoing cancer care is more comprehensive and accurate than relying solely on their caregivers or clinicians for their interpretations. We developed the pediatric patient-reported outcomes version of the Common Terminology Criteria for Adverse Events (Ped-PRO-CTCAE) measurement system with input from children, parents, and clinicians. Here, we report how we determined the recommended Ped-PRO-CTCAE item scoring approach. METHODS: Data from 271 patients were analyzed using three scoring approaches: (a) at the AE attribute (frequency, severity, interference) using ordinal and dichotomous measures; (b) a weighted composite AE item score by AE attribute (0.5 - frequency; 1.0 - severity; 1.5 - interference); and (c) overall number of AEs endorsed. Associations of each AE attribute, AE item score, and overall AE score with the Patient-Reported Outcome Measurement Information System (PROMIS) Pediatric measures were examined. The ability of the overall Ped-PRO-CTCAE AE score to identify patients with PROMIS symptom T-scores worse than reference population scores was assessed. Clinician preference for score information display was elicited through interviews with five pediatric oncology clinical trialists. RESULTS: The diverse scoring approaches yielded similar outcomes, including positive correlations of the Ped-PRO-CTCAE attributes, AE item score, and the overall AEs score with the PROMIS Pediatric measures. Clinicians preferred the most granular display of scoring information (actual score reported by the child and corresponding descriptive term). CONCLUSIONS: Although three scoring approaches yielded similar results, we recommend the AE attribute level of one score per Ped-PRO-CTCAE AE attribute for its simplicity of use in care and research.

Emergency management of fever and neutropenia in children with cancer: A review.

INTRODUCTION: Care of pediatric cancer patients is increasingly being provided by physicians in community settings, including general emergency departments. Guidelines based on current evidence have standardized the care of children undergoing chemotherapy or hematopoietic stem cell transplantation (HSCT) presenting with fever and neutropenia (FN). OBJECTIVE: This narrative review evaluates the management of pediatric patients with cancer and neutropenic fever and provides comparison with the care of the adult with neutropenic fever in the emergency department. DISCUSSION: When children with cancer and FN first present for care, stratification of risk is based on a thorough history and physical examination, baseline laboratory and radiologic studies and the clinical condition of the patient, much like that for the adult patient. Prompt evaluation and initiation of intravenous broad-spectrum antibiotics after cultures are drawn but before other studies are resulted is critically important and may represent a practice difference for some emergency physicians when compared with standardized adult care. Unlike adults, all high-risk and most low-risk children with FN undergoing chemotherapy require admission for parenteral antibiotics and monitoring. Oral antibiotic therapy with close, structured outpatient monitoring may be considered only for certain low-risk patients at pediatric centers equipped to pursue this treatment strategy. CONCLUSIONS: Although there are many similarities between the emergency approach to FN in children and adults with cancer, there are differences that every emergency physician should know. This review provides strategies to optimize the care of FN in children with cancer in all emergency practice settings.

Patients, caregivers, and clinicians differ in performance status ratings: Implications for pediatric cancer clinical trials.

BACKGROUND: The Lansky Play-Performance Scale (LPPS) is often used to determine a child's performance status for cancer clinical trial eligibility. Differences between clinician and caregiver LPPS ratings and their associations with child-reported functioning have not been evaluated. METHODS: Children aged 7 to 18 years who were receiving cancer treatment and their caregivers were recruited from 9 pediatric cancer centers. Caregivers and clinicians reported LPPS scores, and children completed Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric functioning and symptom measures before treatment (time 1 [T1]) and after treatment (time 2 [T2]). t tests and mixed-linear models were used to assess differences in caregiver and clinician LPPS scores; polyserial correlations quantified associations between PROMIS and LPPS scores. RESULTS: Of 482 children, 281 had matched caregiver- and clinician-reported LPPS T1/T2 scores. Caregivers rated children significantly worse on the LPPS than clinicians at both T1 (mean, 73.3 vs 87.4; P < .01) and T2 (mean, 67.9 vs 83.1; P < .01). These differences were not related to a child's age (P = .89), diagnosis (P = .17), or sex (P = .64) or to the time point (P = .45). Small to moderate associations existed between caregiver- and clinician-reported LPPS ratings and child-reported PROMIS scores for mobility (caregiver T1/T2 r = 0.51/0.45; P < .01; clinician T1/T2 r = 0.40/0.35; P < .01), fatigue (caregiver T1/T2 r = -0.46/-0.37; P < .01; clinician T1/T2 r = -0.26/-0.27; P < .01), and pain interference (caregiver T1/T2 r = -0.32/-0.30; P < .01; clinician T1/T2 r = -0.17/-0.31; P < .01). Caregivers and clinicians assigned significantly lower LPPS scores at T2 (caregiver Δ = -5.37; P < .01; clinician Δ = -4.20; P < .01), whereas child-reported PROMIS scores were clinically stable. CONCLUSIONS: Significant differences between clinician and caregiver LPPS ratings of child performance were sustained over time; their associations with child reports were predominantly small to moderate. These data suggest that clinician-reported LPPS ratings by themselves are inadequate for determining clinical trial eligibility and should be supplemented by appropriate measures of a child's functional status reflecting the child and caregiver perspectives.

Subjective Toxicity Profiles of Children in Treatment for Cancer: A New Guide to Supportive Care?

CONTEXT: Children and adolescents with cancer experience treatment-related, subjective adverse events (AEs). Identifying distinct groups of patients who predictably experience higher prevalence of AEs could guide patient care. OBJECTIVES: Study aims were to 1) identify groups of children and adolescents reporting AEs using the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (Ped-PRO-CTCAE); 2) determine whether demographic and clinical characteristics predict AE group membership; and 3) examine whether AE group membership was related to the distal outcome of psychological stress. METHODS: Four hundred seventy-seven patients self-reported AEs via the Ped-PRO-CTCAE at T1 (beginning of treatment) and the PROMIS Pediatric Psychological Stress measure at T2 (7-28 days later). Latent class analysis was conducted to identify groups of patients and the relationships of the groups with demographic and clinical characteristics, and with stress. RESULTS: Three distinct a priori unknown AE groups were identified (high AE prevalence, moderate AE prevalence, and low AE prevalence). Females, blacks, patients with high psychological stress, and patients more recently diagnosed were more likely to be in the high AE prevalence group. Gender, age, race, and time since diagnosis were associated with psychological stress. CONCLUSION: Children with cancer are heterogeneous in experiencing subjective AEs. Gender, race, and time since diagnosis were significantly associated with higher subjective AE prevalence that may lead to psychological stress.

Clinical Course for Patients With Trisomy 13 and 18 Pursuing Life-Prolonging Therapies Versus Comfort-Directed Care.

BACKGROUND: Care for infants with Trisomy 13 and 18 is evolving with more children being offered medical and surgical interventions. Parents and clinicians of children diagnosed with trisomy 13 and 18 would benefit from understanding how parental goals of care correlate with the subsequent clinical course of children with these conditions. OBJECTIVE: To describe and compare parental goals of care (GOC) and clinical course in infants with trisomy 13 and 18. DESIGN: Single center, retrospective (2013-19) analysis of electronic health record repository at a birthing center and a tertiary care hospital. MEASUREMENTS: ICD-9/10 codes were used to identify patients with trisomy 13 or 18 born between 2013-2019. Their records were abstracted for their diagnosis, hospitalization days, interventions, GOC, death location and length of life. RESULT: Twenty-eight total patients were identified; trisomy 13, mosaic trisomy 13 and trisomy 18 were diagnosed in 9, 2 and 17 patients respectively. Among the 26 patients with complete trisomy 13 or 18, 8 had life-prolonging and 18 had comfort care goals at birth/diagnosis. Life-prolonging goals were not associated with longer life (p = 0.36) but were associated with more mean hospital days (70 vs. 12, p = 0.01), ICU days (66 vs. 9, p = 0.009), intubation (7/8 vs 7/18, p = 0.04), and death in ICU (7/7 vs. 10/17, p = 0.02). Zero patients underwent cardiac surgery. CONCLUSION: Parental GOC did not affect length of life in children with complete trisomy, but did alter treatment intensity. This may inform decision making for patients with trisomy 13 or 18.

Feasibility and Acceptability of Reiki Therapy for Children Receiving Palliative Care in the Home.

Reiki is often used but not well studied in children. Yet, this gentle, light-touch therapy promotes relaxation and is appropriate for those receiving palliative care. This quasi-experimental pre-post mixed-methods 1-group pilot study examined the feasibility and acceptability of Reiki therapy as a treatment for children aged 7 to 16 years receiving palliative care. During the study, we recorded recruitment, retention, data collection rates, and percent completion of the intervention. Structured interviews with the mothers and verbal children were conducted to elicit their experience. Qualitative data were analyzed using thematic analysis. Twenty-one parent-child dyads agreed to participate and signed consent, whereas 16 completed the study (including verbal [n = 8] and nonverbal [n = 8] children). Themes included "feeling better," "hard to judge," and "still going on." Mothers and children were generally positive regarding the experience of receiving Reiki therapy. Children reported they "felt really relaxed," and mothers stated, "It was a good experience" and "She was relaxed afterward." The results of this pilot study show that Reiki was feasible, acceptable, and well-tolerated. Most participants reported it was helpful. Reiki therapy may be a useful adjunct with traditional medical management for symptoms in children receiving palliative care.

Agreement Between Child Self-report and Caregiver-Proxy Report for Symptoms and Functioning of Children Undergoing Cancer Treatment.

Importance: Adult patients are considered the best reporters of their own health-related quality of life (HRQOL). Self-report in pediatrics has been challenged by a limited array of valid measures. Caregiver report is therefore often used as a proxy for child report. Objectives: To examine the degree of alignment between child and caregiver proxy report for Patient-Reported Outcomes Measurement Information System (PROMIS) HRQOL domains among children with cancer and to identify factors associated with better child and caregiver-proxy congruence. Design, Setting, and Participants: In this multicenter cohort study, children with a first cancer diagnosis and their caregivers completed surveys at 2 time points: within 72 hours preceding treatment initiation (T1) and during follow-up (T2), when symptom burden was expected to be higher (eg, 7-17 days later for chemotherapy). Data were collected from October 26, 2016, to October 5, 2018, at 9 pediatric oncology hospitals. Five hundred eighty children (aged 7-18 years) and their caregivers were approached; 482 child-caregiver dyads completed surveys at T1 (response rate 83%), and 403 completed surveys at T2 (84% of T1 participants). Data were analyzed from July 1, 2019, to April 22, 2020. Exposures: Participants received up-front cancer treatment, including chemotherapy and radiotherapy. Main Outcomes and Measures: Congruence between child self-report and caregiver-proxy report of PROMIS pediatric domains of mobility (physical functioning), pain interference, fatigue, depressive symptoms, anxiety, and psychological stress. Results: Of the 482 dyads included in the analysis, 262 children (54%) were male (mean [SD] age, 12.9 [3.4] years), 80 (17%) were Black, and 71 (15%) were Hispanic. Intraclass correlations between child self-report and caregiver proxy report showed moderate agreement for mobility (0.57 [95% CI, 0.50-0.63]) and poor agreement for symptoms (range, 0.32 [95% CI, 0.24-0.41] for fatigue to 0.42 [95% CI, 0.34-0.50] for psychological stress). Children reported lower symptom burden and higher mobility than caregivers reported. In a multivariable model adjusted for child and parent sociodemographic factors and the caregiver's own self-reported HRQOL, caregivers reported the child's mobility score 6.00 points worse than the child's self-report at T2 (95% CI, -7.45 to -4.51), exceeding the PROMIS minimally important difference of 3 points. Caregivers overestimated the child's self-reported symptom levels, ranging from 5.79 (95% CI, 3.99-7.60) points for psychological stress to 13.69 (95% CI, 11.60-15.78) points for fatigue. The caregiver's own self-reported HRQOL was associated with the magnitude of difference between child and caregiver scores for all domains except mobility; for example, for fatigue, the magnitude of difference between child and caregiver-proxy scores increased by 0.21 (95% CI, 0.13-0.30) points for each 1-point increase in the caregiver's own fatigue score. Conclusions and Relevance: This study found that caregivers consistently overestimated symptoms and underestimated mobility relative to the children themselves. These results suggest that elicitation of the child's own report should be pursued whenever possible.

"Give them the door but don't push them through it": Family Attitudes Toward Physician-Led Spiritual Care in Pediatric Palliative Medicine.

Little is known about pediatric caregivers' perceptions of religious or spiritual (R/S) care provided by physicians. We conducted a qualitative, semistructured interview study to understand perceptions of pediatric caregivers toward physician-led R/S care. Participants were 20 primary caregivers whose children were hospitalized and receiving palliative care services. Interviews were audio recorded, transcribed verbatim, and analyzed using constant comparative methods. Three recurrent themes emerged regarding physician-led R/S care: (1) Most caregivers view providing R/S care as a positive sign of physician empathy, while a minority (3/20) prefer to keep R/S and medical care separate, (2) many caregivers prefer R/S care from a physician with whom they have a close relationship and/or share a faith background, and (3) physicians should open the door, but allow families to lead conversations about R/S care. Caregivers have mixed perceptions on physicians engaging in R/S care; most prefer that families set the direction of R/S care for themselves and their loved ones. Physicians should be trained to evaluate families' spiritual backgrounds and needs in ways that respectfully open the door to these conversations.

Validity and Reliability of the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events.

BACKGROUND: Patient-reported outcome (PRO) measurements linked to Common Terminology Criteria for Adverse Events (CTCAE) grading may improve symptom adverse event (AE) reporting in pediatric oncology trials. We evaluated construct validity, responsiveness, and test-retest reliability of the Ped-PRO-CTCAE measurement system for children and adolescents undergoing cancer care. METHODS: A total of 482 children and adolescents (7-18 years, 41.5% not non-Hispanic white) newly diagnosed with cancer and their caregivers participated from nine pediatric oncology hospitals. Surveys were completed at 72 hours preceding treatment initiation (T1) and at follow-up (T2) approximately 7-17 days later for chemotherapy, and 4+ weeks for radiation. Psychometric analyses examined the relationship of Ped-PRO-CTCAE items (assessing 62 symptom AEs) with Patient-Reported Outcomes Measurement Information System, Memorial Symptom Assessment Scale, Lansky Play-Performance Scale, and medication use. A separate test-retest study included 46 children. RESULTS: Ped-PRO-CTCAE and Memorial Symptom Assessment Scale were strongly correlated across age groups at T2: 7-12 years (r = 0.62-0.80), 13-15 years (r = 0.44-0.94), and 16-18 years (r = 0.65-0.98); and over time. The Ped-PRO-CTCAE was strongly correlated with Patient-Reported Outcomes Measurement Information System Pediatric measures at T2; for example, pain interference (r = 0.70, 95% confidence interval [CI] = 0.64 to 0.76), fatigue severity (r = 0.63, 95% CI = 0.56 to 0.69), and depression severity (r = 0.76, 95% CI = 0.71 to 0.81). Ped-PRO-CTCAE items differentiated children by Lansky Play-Performance Scale and by medication use. Test-retest agreement ranged from 54.3% to 93.5%. CONCLUSIONS: This longitudinal study provided evidence for the construct validity and reliability of the core Ped-PRO-CTCAE symptom AE items relative to several established measures. Additional responsiveness data with clinical anchors are recommended. Incorporation of Ped-PRO-CTCAE in trials may lead to a better understanding of the cancer treatment experience.

Mapping child and adolescent self-reported symptom data to clinician-reported adverse event grading to improve pediatric oncology care and research.

BACKGROUND: Clinicians are the standard source for adverse event (AE) reporting in oncology trials, despite the subjective nature of symptomatic AEs. The authors designed a pediatric patient-reported outcome (PRO) instrument for symptomatic AEs to support the National Cancer Institute's Common Terminology Criteria for Adverse Events (CTCAE) (the Pediatric PRO-CTCAE). The current study developed a standardized algorithm that maps all possible Pediatric PRO-CTCAE response patterns to recommended CTCAE grades to improve the accuracy of AE reporting in pediatric oncology trials. METHODS: Two rounds of surveys were administered to experienced cancer clinicians across 9 pediatric hospitals. In round 1, pediatric oncologists assigned CTCAE grades to all 101 possible Pediatric PRO-CTCAE response patterns. The authors evaluated clinician agreement of CTCAE grades across response patterns and categorized each response pattern as having high or low agreement. In round 2, a survey was sent to a larger clinician group to examine clinician agreement among a select set of Pediatric PRO-CTCAE response patterns, and the authors examined how clinical context influenced grade assignment. RESULTS: A total of 10 pediatric oncologists participated in round 1. Of the 101 possible patterns, 89 (88%) had high agreement. The Light weighted kappa was averaged across the 10 oncologists (Light kappa = 0.73; 95% CI, 0.66-0.81). A total of 139 clinicians participated in round 2. High clinician agreement remained for the majority of generic response patterns and the clinical context did not typically change grades but rather improved agreement. CONCLUSIONS: The current study provides a framework for integrating child self-reported symptom data directly into mandated AE reporting in oncology trials. Translating Pediatric PRO-CTCAE responses into clinically meaningful metrics will guide future cancer care and toxicity grading.

Pediatric palliative care in the medical neighborhood for children with medical complexity.

Children with medical complexity (CMC) are a medically fragile pediatric population that experience severe chronic illnesses resulting in significant health care needs, functional limitations, and health care utilization, and are at the highest risk for morbidity and mortality among all children. Furthermore, families and parents of CMC experience significant caregiver hardships and diminished quality of life. The field of pediatric palliative care has grown in recent years, in part to address the physical and psychosocial issues inherent to the care of these chronically ill children. However, as the prevalence and long-term survival of CMC increases with medical advancements, the demand for pediatric palliative care will likely exceed the capacity of current and future pediatric palliative care specialists. Therefore, alternative strategies to ensure access to essential aspects of palliative care must be considered. This article focuses on why and how high-quality palliative care should be integrated into the patient- and family-centered medical home, the ideal care delivery model for CMC and their families. We first discuss how palliative care principles naturally align with and complement the goals of the CMC medical home. Next, we detail what actions pediatric palliative care specialists can take to best support the CMC medical home as "medical neighbors." Lastly, we describe the fundamental aspects of pediatric palliative care that all clinicians caring for CMC should be able to provide, referred to as "primary pediatric palliative care." (PsycINFO Database Record (c) 2019 APA, all rights reserved).