Adaptation of the Day100 Talk communication intervention for Spanish-speaking families of children with cancer.

The Day100 Talk (Day100) bridges communication gaps between parents and clinicians early in pediatric cancer care through an interprofessional family conference facilitated by structured tools. We aimed to understand communication challenges and facilitators and to adapt Day100 for Spanish-speaking parents. We interviewed Spanish-speaking parents with limited English proficiency, Spanish-English medical interpreters, and clinicians to gather communication experiences and adapt Day100. Results showed that communication difficulties were precipitated by linguistic and cultural differences, nonvisual technologies, and limited spontaneous communication. Interpreters enhanced communication as linguistic and cultural brokers. Nonverbal cues also facilitated communication. Participants offered recommendations to adapt Day100 for future study.

Normalization of Symptoms in Advanced Child Cancer: The PediQUEST-Response Case Study.

CONTEXT: Children, adolescents and young adults with cancer continue to experience significant symptom suffering throughout their illness. OBJECTIVES: To identify barriers to effective symptom management in pediatric advanced cancer. METHODS: Using a qualitative multiple case study we refined the Pediatric Quality of Life and Evaluation of Symptoms Technology Response to the Pediatric Oncology Symptom Experience (PediQUEST Response), a pediatric palliative care (PPC) intervention. Twenty-three children aged ≥2 years old with advanced cancer, their parents and primary and PPC clinicians were enrolled. Children and parents reported symptoms weekly over 4-months using the Memorial Symptom Assessment Scale (MSAS) administered by an electronic system (PediQUEST). When symptom distress episodes (SDEs) were reported (MSAS symptom score ≥33) we studied symptom management processes using interviews of family members/clinicians, and chart abstractions. Data were coded and analyzed using grounded theory and NVivo software. RESULTS: Children reported 308 SDEs within 193 surveys and parents 529 SDEs in 165 surveys administered. We conducted 85 and 88 interviews with families and clinicians respectively. While we confirmed the presence of known barriers, we identified a prominent theme, that symptoms were "normalized." Patients, parents, and all clinicians, including PPC specialists, got accustomed to high symptom burden and lacked expectations that distress could be alleviated. We defined "normalization of symptoms," as the process by which symptom related suffering is appraised as unavoidable. CONCLUSION: Normalization of symptoms is a pervasive barrier enacted by all involved in caring for children with advanced cancer. Strategies to overcome normalization are critical to ease child distress.

Feasibility and acceptability of the "Day 100 Talk": An interdisciplinary communication intervention during the first six months of childhood cancer treatment.

BACKGROUND: Communication gaps arise early in the childhood cancer trajectory and may persist. The authors conducted a pilot study of the feasibility and acceptability of a communication intervention, the Day 100 Talk (D100). D100 involves an interprofessional family conference during initial months of treatment between oncologists, psychosocial clinicians, and parents, facilitated by a 3-part conversation tool. METHODS: The authors enrolled English-speaking parents of children with nonrelapsed, nonprogressive cancer who were receiving continuity care from enrolled pediatric oncologists and psychosocial clinicians at a single site. The a priori feasibility threshold was 60% parent completion of the D100 intervention. Surveys from parents and professionals and debrief interviews with professionals assessed D100 acceptability. RESULTS: Thirty-seven parents (77%) and 38 oncology professionals (67%) enrolled. Twenty of 33 evaluable parents (61%) participated in a D100 family conference. Most commonly, parents did not complete the D100 intervention because of scheduling difficulties related to clinical team constraints. All 17 parents who completed a post-D100 survey agreed or strongly agreed that D100 participation was helpful. In debrief interviews, professionals identified D100 benefits, namely, stepping back to the big picture and getting on the same page, and barriers related to logistical challenges and professionals' anticipatory dread. CONCLUSIONS: The D100 intervention pilot demonstrates high acceptability among parents of children with cancer. Despite meeting the prespecified feasibility threshold, findings highlight important barriers to D100 dissemination, namely, perceived burdens on professionals. Potential strategies to reduce burden may include using virtual visit platforms, incorporating D100 elements across multiple visits, or prioritizing intervention delivery to parents with the greatest need for enhanced communication.

Parent Perceptions of Team-Delivered Care for Children With Advanced Cancer: A Report From the PediQUEST Study.

CONTEXT: Childhood cancer care is delivered by interprofessional health care teams; however, little is known about how parents perceive overall team-delivered care (TDC). OBJECTIVES: We sought to describe parent perceptions of TDC and associated factors, including care rendered by individual clinicians, teamwork, information consistency, and patient and parent characteristics. METHODS: Cross-sectional surveys were distributed to parents of 104 children with recurrent/refractory cancer enrolled in a multisite symptom management trial. The primary outcome, TDC, was parent report of care quality delivered by the child's care team during the preceding three months. Likert-scaled items (excellent/very good/good/fair/poor) queried care quality delivered by individual clinicians, perceived teamwork, and other factors. Factors associated with parent perceptions of excellent TDC were identified using Fisher's exact test. RESULTS: Eighty-six parents (83%) responded. During the preceding three months, 63% (n = 54) of parents reported excellent TDC. However, only 47% (n = 40) described their care team's teamwork as excellent. Approximately one-quarter (24%) described care rendered by their child's oncologist as less-than-excellent. Among parents who reported psychosocial clinician involvement (71%; n = 60), only 43% described this care as excellent. Individually, excellent care from each clinician type (oncologist, psychosocial clinician, and primary nurse) was associated with excellent TDC (all P ≤ 0.001; no correction for multiple comparisons). CONCLUSION: Among parents of children with advanced cancer, more than one-third report less-than-excellent TDC. In addition, less than half report excellent teamwork, and ratings of care rendered by individual clinicians are highly variable. Findings suggest that interventions are needed to enhance interprofessional teamwork in the care of children with advanced cancer.

Cancer Treatment-Related Infertility: A Critical Review of the Evidence.

Cancer treatments may compromise the fertility of children, adolescents, and young adults, and treatment-related infertility represents an important survivorship issue that should be addressed at diagnosis and in follow-up to ensure optimal decision-making, including consideration of pursuing fertility preservation. Risk of infertility varies substantially with patient and treatment factors. The ability to accurately assess fertility risk for many patients is hampered by limitations of the current literature, including heterogeneity in patient populations, treatments, and outcome measures. In this article, we review and synthesize the available data to estimate fertility risks from modern cancer treatments for both children and adult cancer survivors to enable clinicians to counsel patients about future fertility.

"What if?": Addressing uncertainty with families.

Children with cancer and their families deal with uncertainty throughout their treatment course. Clinicians must help patients and families manage uncertainty by engaging them in discussions about their worries and fears. Too often, clinicians avoid or defer discussions about anticipated or worried-about future events-the "what ifs." Failing to engage in these conversations may lead to increased distress. We have developed a framework for having "what if" conversations with patients and families that enables providers to explore families' informational and emotional needs. This framework may enable providers to improve families' prognostic understanding, explore concerns, and examine preferences and goals of care.

Intimate Partner Relationships, Work-Life Factors, and Their Associations With Burnout Among Partnered Pediatric Residents.

BACKGROUND: Burnout is prevalent among pediatric residents, and reducing burnout is a priority for pediatric residency programs. Understanding residents' personal circumstances, including relationship satisfaction and perceived work-life conflict, may identify novel determinants of burnout. OBJECTIVES: To describe intimate partner relationships among pediatric residents and examine associations among relationship satisfaction, work-life factors, and burnout. METHODS: We identified 203 partnered residents (married or in a self-identified committed, ongoing relationship) from a cross-sectional survey of 258 residents in 11 New England pediatric programs (response rate 54% of 486 surveys distributed), conducted from April through June of 2013. We analyzed associations among relationship satisfaction, work-life factors, and burnout using multivariable regression. Burnout was measured with the brief Maslach Burnout Inventory, and relationship satisfaction with the validated Relationship Assessment Scale. RESULTS: Burnout was reported by 40.9% of partnered respondents. The vast majority of partnered residents (n = 167; 85.2%) reported high relationship satisfaction. Lower relationship satisfaction was not associated with burnout. Approximately half of the respondents (n = 102; 51.5%) reported being satisfied with life as a resident. When controlling for common stressors, such as sleep deprivation, work-life measures associated with burnout included frequent perceived conflicts between personal and professional life (adjusted odds ratio, 4.35; 95% confidence interval, 1.91-9.88) and dissatisfaction with life as a resident (adjusted odds ratio, 11.74; 95% confidence interval, 4.23-32.57). CONCLUSION: Low relationship satisfaction and common work-life stressors were not associated with burnout among partnered pediatric residents. However, perceived work-life conflict and dissatisfaction with resident life were strongly associated with burnout and are targets for residency programs seeking to ameliorate burnout.

Larotrectinib for paediatric solid tumours harbouring NTRK gene fusions: phase 1 results from a multicentre, open-label, phase 1/2 study.

BACKGROUND: Gene fusions involving NTRK1, NTRK2, or NTRK3 (TRK fusions) are found in a broad range of paediatric and adult malignancies. Larotrectinib, a highly selective small-molecule inhibitor of the TRK kinases, had shown activity in preclinical models and in adults with tumours harbouring TRK fusions. This study aimed to assess the safety of larotrectinib in paediatric patients. METHODS: This multicentre, open-label, phase 1/2 study was done at eight sites in the USA and enrolled infants, children, and adolescents aged 1 month to 21 years with locally advanced or metastatic solid tumours or CNS tumours that had relapsed, progressed, or were non-responsive to available therapies regardless of TRK fusion status; had a Karnofsky (≥16 years of age) or Lansky (<16 years of age) performance status score of 50 or more, adequate organ function, and full recovery from the acute toxic effects of all previous anticancer therapy. Following a protocol amendment on Sept 12, 2016, patients with locally advanced infantile fibrosarcoma who would require disfiguring surgery to achieve a complete surgical resection were also eligible. Patients were enrolled to three dose cohorts according to a rolling six design. Larotrectinib was administered orally (capsule or liquid formulation), twice daily, on a continuous 28-day schedule, in increasing doses adjusted for age and bodyweight. The primary endpoint of the phase 1 dose escalation component was the safety of larotrectinib, including dose-limiting toxicity. All patients who received at least one dose of larotrectinib were included in the safety analyses. Reported here are results of the phase 1 dose escalation cohort. Phase 1 follow-up and phase 2 are ongoing. This trial is registered with ClinicalTrials.gov, number NCT02637687. FINDINGS: Between Dec 21, 2015, and April 13, 2017, 24 patients (n=17 with tumours harbouring TRK fusions, n=7 without a documented TRK fusion) with a median age of 4·5 years (IQR 1·3-13·3) were enrolled to three dose cohorts: cohorts 1 and 2 were assigned doses on the basis of both age and bodyweight predicted by use of SimCyp modelling to achieve an area under the curve equivalent to the adult doses of 100 mg twice daily (cohort 1) and 150 mg twice daily (cohort 2); and cohort 3 was assigned to receive a dose of 100 mg/m2 twice daily (maximum 100 mg per dose), regardless of age, equating to a maximum of 173% of the recommended adult phase 2 dose. Among enrolled patients harbouring TRK fusion-positive cancers, eight (47%) had infantile fibrosarcoma, seven (41%) had other soft tissue sarcomas, and two (12%) had papillary thyroid cancer. Adverse events were predominantly grade 1 or 2 (occurring in 21 [88%] of 24 patients); the most common larotrectinib-related adverse events of all grades were increased alanine and aspartate aminotransferase (ten [42%] of 24 each), leucopenia (five [21%] of 24), decreased neutrophil count (five [21%] of 24), and vomiting (five [21%] of 24). Grade 3 alanine aminotransferase elevation was the only dose-limiting toxicity and occurred in one patient without a TRK fusion and with progressive disease. No grade 4 or 5 treatment-related adverse events were observed. Two larotrectinib-related serious adverse events were observed: grade 3 nausea and grade 3 ejection fraction decrease during the 28-day follow-up after discontinuing larotrectinib and while on anthracyclines. The maximum tolerated dose was not reached, and 100 mg/m2 (maximum of 100 mg per dose) was established as the recommended phase 2 dose. 14 (93%) of 15 patients with TRK fusion-positive cancers achieved an objective response as per Response Evaluation Criteria In Solid Tumors version 1.1; the remaining patient had tumour regression that did not meet the criteria for objective response. None of the seven patients with TRK fusion-negative cancers had an objective response. INTERPRETATION: The TRK inhibitor larotrectinib was well tolerated in paediatric patients and showed encouraging antitumour activity in all patients with TRK fusion-positive tumours. The recommended phase 2 dose was defined as 100mg/m2 (maximum 100 mg per dose) for infants, children, and adolescents, regardless of age. FUNDING: Loxo Oncology Inc.

Development of the "Day 100 Talk": Addressing existing communication gaps during the early cancer treatment period in childhood cancer.

BACKGROUND: Families' communication needs during the early cancer treatment period (ECTP) may not be optimally met by current practices. We sought to identify potential communication gaps and to ameliorate these by developing a novel in-depth conversation between families and their pediatric oncologists, the "Day 100 Talk" (D100), during the ECTP. PROCEDURE: We conducted semistructured interviews with parents and patients undergoing childhood cancer treatment for < 7 months. Interviews sought to elicit perceived communication gaps regarding cancer care and inform D100 development. Following qualitative analysis of interview responses, we developed a three-part D100 conversation tool consisting of a preparatory family worksheet, a conversation guide, and a family summary sheet. We presented the tool during interviews and a focus group with pediatric oncology providers and revised it to incorporate provider input. RESULTS: Twenty-two stakeholders (six parents, five adolescents, and 11 providers) participated in interviews or a focus group. Parents and patients perceived insufficient anticipatory guidance as the most important communication gap. They also reported sometimes withholding worries and cancer-related beliefs. Meanwhile, oncology providers worried about "opening Pandora's Box" and limited clinical time. Additionally, providers reported employing indirect methods such as surmising to determine families' needs and relying on psychosocial clinicians to engage families around potentially "taboo" issues of emotional coping and spirituality. CONCLUSION: Creating a communication occasion (D100), ensuring complementary disciplinary expertise through joint participation by oncologists and psychosocial clinicians, and providing a conversation tool to prompt disclosure by families and facilitate anticipatory guidance may ameliorate existing communication gaps during the ECTP.

Pediatric Resident Burnout and Attitudes Toward Patients.

BACKGROUND AND OBJECTIVES: Burnout occurs in up to 75% of resident physicians. Our study objectives were to: (1) determine the prevalence of burnout, and (2) examine the association between burnout and self-reported patient care attitudes and behaviors among pediatric residents. METHODS: A total of 258 residents (53% response rate) from 11 pediatric residency programs completed a cross-sectional Web-based survey. Burnout was measured with 2 items from the Maslach Burnout Inventory. Patient care attitudes and behaviors were measured with 7 questions from a standardized qualitative survey. χ2 and logistic regression tested the association between burnout and self-reported patient care attitudes and behavior. RESULTS: A total of 39% of respondents (mean age, 29.4 years ± 2.3 SD; 79% female; 83% white; 35% postgraduate year [PGY] -1, 34% PGY-2, and 31% PGY-3), endorsed burnout. Residents with burnout had significantly greater odds (P < .01) of reporting suboptimal patient care attitudes and behaviors, including: discharging patients to make the service more manageable (adjusted odds ratio [aOR] 4.2; 95% confidence interval [CI], 1.6-11.1), not fully discussing treatment options or answering questions (aOR 3.5; 95% CI, 1.7-7.1), making treatment or medication errors (aOR 7.1; 95% CI, 2.0-25.8), ignoring the social or personal impact of an illness (aOR 9.6; 95% CI, 3.2-28.9), and feeling guilty about how a patient was treated (aOR 6.0; 95% CI, 1.6-22.1). CONCLUSIONS: Burnout is highly prevalent among pediatric residents and is associated with self-reported negative patient care attitudes and behaviors. Residency programs should develop interventions addressing burnout and its potential negative impact on patient care.

Tumor Talk and Child Well-Being: Perceptions of "Good" and "Bad" News Among Parents of Children With Advanced Cancer.

CONTEXT: Little is known about how parents of children with advanced cancer classify news they receive about their child's medical condition. OBJECTIVE: To develop concepts of "good news" and "bad news" in discussions of advanced childhood cancer from parent perspectives. METHODS: Parents of children with advanced cancer cared for at three children's hospitals were asked to share details of conversations in the preceding three months that contained "good news" or "bad news" related to their child's medical condition. We used mixed methods to evaluate parent responses to both open-ended and fixed-response items. RESULTS: Of 104 enrolled parents, 86 (83%) completed the survey. Six (7%) parents reported discussing neither good nor bad news, 18 (21%) reported only bad news, 15 (17%) reported only good news, and 46 (54%) reported both good and bad news (one missing response). Seventy-six parents (88%) answered free-response items. Descriptions of both good and bad news discussions consisted predominantly of "tumor talk" or cancer control. Additional treatment options featured prominently, particularly in discussions of bad news (42%). Child well-being, an important good news theme, encompassed treatment tolerance, symptom reduction, and quality of life. CONCLUSION: A majority of parents of children with advanced cancer report discussing both good and bad news in the preceding three months. Although news related primarily to cancer control, parents also describe good news discussions related to their child's well-being. Understanding how parents of children with advanced cancer classify and describe the news they receive may enhance efforts to promote family-centered communication.

Reliability of Verbal Handoff Assessment and Handoff Quality Before and After Implementation of a Resident Handoff Bundle.

OBJECTIVE: 1) To develop validity evidence for the use of the Verbal Handoff Assessment Tool (VHAT) and examine the reliability of VHAT scores, and 2) to determine whether implementation of a resident handoff bundle (RHB) was associated with improved verbal patient handoffs among pediatric resident physicians. METHODS: In a pre-post design, prospectively audio recorded verbal patient handoffs conducted at Boston Children's Hospital before and after implementation of the RHB were rated using the VHAT, which was developed for this study (primary outcome). Using generalizability theory, we evaluated the reliability of VHAT scores. RESULTS: Overall, VHAT scores increased after RHB implementation (mean 142 vs 191, possible score 0-500; P < .0001). When accounting for clustering according to resident physician, hospital unit, unit census, and patient complexity, implementation of the RHB was associated with a 63-point increase in VHAT score. Using generalizability theory, we determined that a resident's mean VHAT score on the basis of a handoff of 15 patients assessed by a single observer was sufficiently reliable for relative ranking decisions (ie, norm-based; generalizability coefficient, 0.81), whereas a VHAT score on the basis of a handoff of 21 patients would be sufficiently reliable for high-stakes, standard-based decisions (Phi, 0.80). CONCLUSIONS: Verbal handoffs improved after implementation of a RHB, although gains were variable across the 2 clinical units. The VHAT shows promise as an assessment tool for resident handoff skills. If used for competency or entrustment decisions, a resident's mean VHAT score should be on the basis of observation of verbal handoff of ≥21 patients.

Communication Skills Training in Pediatric Oncology: Moving Beyond Role Modeling.

Communication is central to pediatric oncology care. Pediatric oncologists disclose life-threatening diagnoses, explain complicated treatment options, and endeavor to give honest prognoses, to maintain hope, to describe treatment complications, and to support families in difficult circumstances ranging from loss of function and fertility to treatment-related or disease-related death. However, parents, patients, and providers report substantial communication deficits. Poor communication outcomes may stem, in part, from insufficient communication skills training, overreliance on role modeling, and failure to utilize best practices. This review summarizes evidence for existing methods to enhance communication skills and calls for revitalizing communication skills training within pediatric oncology.

Usefulness of various plasma biomarkers for diagnosis of heart failure in children with single ventricle physiology.

Children with single ventricle physiology have increased ventricular work and are at greater risk of developing heart failure than other children with congenital heart disease. However, the diagnosis of heart failure is difficult because few objective measures have been validated for this cohort. Plasma proteins have been identified as biomarkers of heart failure in adults with structurally normal hearts. However, whether these correlate similarly with heart failure in children with single ventricle physiology is unknown, because the etiology of adult heart failure is typically ischemic heart disease, but heart failure in these children is presumed to be due to primary myocardial dysfunction. We conducted a single-site, cross-sectional observational study of young, single-ventricle patients. Clinical heart failure was defined as a Ross score >2. The association of several candidate biomarkers with heart failure was assessed using logistic regression analysis and receiver operating characteristic curves. Of the 29 included children, 9 (31%) were in clinical heart failure. A doubling of plasma B-type natriuretic peptide was associated with an odds ratio for heart failure of 2.17. The area under the receiver operating characteristic curve was 80.3%. A threshold value of > or =30 pg/ml showed both sensitivity and specificity for heart failure. Three other candidate biomarkers were not associated with clinical heart failure in this sample. In conclusion, plasma B-type natriuretic peptide is a sensitive biomarker for clinical heart failure in young children with single-ventricle heart disease. The use of this plasma biomarker might facilitate detection of heart failure in these complex patients.