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Objectives: Achieving a 'good death' is one of the important goals of palliative care. Providing goal-concordant care and an environment tailored to the patient's preferences can contribute to a 'good death'. However, the concordance rate between the preferred and actual places of death among advanced cancer patients in Japan is less explored. This study aimed to identify the concordance between patients' preferred and actual places of death and the associated factors among patients with advanced cancer in Japan. Materials and Methods: Patients with advanced cancer who underwent chemotherapy at Tohoku University Hospital between January 2015 and January 2016 were enrolled and followed up for 5 years. The enrolled patients were asked about their preference for their place of death. The response options were: "Own home," "General ward" and "Palliative care unit (PCU)." We compared the actual place of death with the patient's preference through a follow-up review of the medical records. Results: A total of 157 patients with advanced cancer were enrolled between January 2015 and January 2016. Of these patients, 22.9% (11/48) died at home according to their preference, 64.0% (16/25) in the general ward and 37.9% (11/29) in the PCU. Only thirty-seven (37.3%) patients died where they wanted, based on the comparison between patients' preferences and actual places of death. Conclusion: The concordance rate between the preferred and actual places of death is not high in Japan. Improving concordance between patients' preferences and actual places of death has the potential to improve end-of-life care. [ABSTRACT FROM AUTHOR]

Instrumental variable analysis (IVA) has been widely used in many fields, including health care, to determine the comparative effectiveness of a treatment, intervention, or policy. However, its application in pediatric end-of-life care research has been limited. This article provides a brief overview of IVA and its assumptions. It illustrates the use of IVA by investigating the comparative effectiveness of concurrent versus standard hospice care for reducing 1-day hospice enrollments. Concurrent hospice care is a relatively recent type of care enabled by the Affordable Care Act in 2010 for children enrolled in the Medicaid program and allows for receiving life-prolonging medical treatment concurrently with hospice care. The IVA was conducted using observational data from 18,152 pediatric patients enrolled in hospice between 2011 and 2013. The results indicated that enrollment in concurrent hospice care reduced 1-day enrollment by 19.3%. [ABSTRACT FROM AUTHOR]

Background/Objective: Compared to existing studies on end-of-life care of mid- to older-aged patients diagnosed with cancer, there is a paucity of research on adolescents and young adult (AYA) patients. Guided by the Anderson's Behavioral Model for Healthcare Utilization, this study examined predisposing/enabling/need factors associated with hospice referral/enrollment among AYA patients diagnosed with cancer. Methods: Data were drawn from medical records of AYA patients who died of cancer between January 2013 and December 2016 at three academic sites in the United States and were 15–39 years old at the time of death. Logistic regression was conducted (N = 224). Results: Findings showed that hospice referral was strongly associated with hospice enrollment (odds ratio [OR] = 69.68, p < 0.0001). White patients were more likely to be referred to hospice care than non-White patients; the effect was, however, significant only among patients with private insurance (OR = 3.44, p = 0.040). Patients with public insurance were more likely to be referred to hospice than those with private insurance; the effect was, however, significant only among non-White patients (OR = 5.66, p = 0.005). Among those not receiving cancer treatment in the last month of life (LML), patients with hematologic malignancies were less likely to be referred to hospice than those with solid tumors (OR = 0.19). Among patients with solid tumors, receiving cancer treatment in the LML lowered the odds of hospice referral (OR = 0.50, p = 0.043). Conclusion: Further research efforts are needed to investigate the role of race, insurance, cancer types, and treatments in hospice use among bigger samples of AYA patients diagnosed with cancer. [ABSTRACT FROM AUTHOR]

Purpose: Most parents of children with cancer desire honest prognostic communication, yet oncologists often avoid clear prognostic disclosure. This study explored differences between oncologists' private assessments of prognosis and their prognostic communication with patients and parents. Patients and Methods: In this prospective, longitudinal, mixed-methods study, we audio-recorded serial disease reevaluation conversations between children with advancing cancer, parents, and primary oncologists and separately surveyed and interviewed oncologists at disease progression time points. At time points when oncologists privately described curability as ≤10%, content analysis was used to compare prognostic language in recorded dialogue with private responses about prognosis. Results: Of 33 enrolled patient–parent dyads, 17 patients with high-risk cancer under the care of 6 primary oncologists experienced disease progression during the study period. In 95% of oncologist interviews at disease progression time points, oncologists either predicted curability to be ≤10% or incurable. In most interviews (82%), oncologists stated unequivocally that chances of cure were ≤10%, yet did not communicate these low odds during recorded discussions at the same time point. Analysis revealed three distinct communication patterns through which oncologists softened prognostic disclosure to patients and families: (1) space-holding for hope of cure: statements acknowledging difficult prognosis yet leaving room for possibility of cure; (2) vague warning: statements implying that cancer may progress without offering specifics; and (3) data without interpretation: statements describing disease progression findings in detail without explaining what this meant for the patient's future life or survival. Conclusion: Pediatric oncologists often temper their assessment of poor prognosis when speaking with patients and families. Future work should explore serious conversation guides and other clinical interventions aimed at encouraging person-centered prognostic disclosure for patients with advancing cancer and their families. [ABSTRACT FROM AUTHOR]

Effective communication is integral to patient and family-centered care in pediatric and adolescent and young adult (AYA) oncology and improving healthcare delivery and outcomes. There is limited knowledge about whether AYAs and parents have similar communication preferences and needs. By eliciting and comparing communication advice from AYAs and parents, we can identify salient guidance for how clinicians can better communicate. We performed secondary analysis of semi-structured interviews from 2 qualitative communication studies. In one study, 80 parents of children with cancer during treatment, survivorship, or bereavement were interviewed. In the second study, AYAs with cancer during treatment or survivorship were interviewed. We asked AYAs and parents to provide communication advice for oncology clinicians. Using thematic analysis, we identified categories of advice related to three overarching themes: interpersonal relationships, informational preferences, and delivery of treatment, resources, and medical care. AYAs and parents provided similar advice about the need for compassion, strong connections, hopefulness, commitment, and transparent honesty However, AYAs placed additional emphasis on clinicians maintaining a calm demeanor. [ABSTRACT FROM AUTHOR]

Using a sample of 18,152 pediatric hospice patients, this study assessed the cost-effectiveness of concurrent care over standard hospice care. Analysis of incremental cost-effectiveness ratios with bootstrapping simulations showed concurrent care was more effective but at a higher cost. [ABSTRACT FROM AUTHOR]

PURPOSE To test associations between health literacy and clinical outcomes in patients undergoing hematopoietic stem-cell transplantation (HSCT). METHODS English- and Spanish-speaking patients age $ 18 years were recruited while admitted for first allogeneic HSCT. Associations between low health literacy (Newest Vital Sign # 3 or Short Test of Functional Health Literacy in Adults # 22) and HSCT outcomes were evaluated. RESULTS Twenty-eight percent of 177 participants had low health literacy by Newest Vital Sign. None had low health literacy by Short Test of Functional Health Literacy in Adults. There was no statistically significant difference between patients with low and adequate health literacy in hospital readmissions (60% v 54%, P5.4), 2-year overall survival (58% v 66%, P 5 .19), 2-year cumulative incidence of nonrelapse death (16% v 10%, P 5 .35), and acute graft-versus-host disease (53% v 44%, P 5 .3). In multivariable analyses, there were no significant associations between health literacy and clinical outcomes. CONCLUSION In this cohort of patients undergoing HSCT, we did not identify a relationship between health literacy and clinical outcomes. Although we did not find statistically significant associations between health literacy and HSCT outcomes, interventions to address health literacy should be considered, given complex outpatient care and evidence for adverse outcomes associated with health literacy in similar diseases. [ABSTRACT FROM AUTHOR]

Purpose: Pediatric hospice is a comprehensive model of care for medically complex children at end of life. The Affordable Care Act changed regulatory requirements for pediatric Medicaid enrollees to allow for enrollment into hospice services while still receiving life‐prolonging therapy. There are gaps in understanding factors associated with pediatric concurrent hospice care use. The objectives were to examine the prevalence of concurrent hospice care overtime and investigated the relationship between medical complexity and concurrent hospice care among Medicaid children. Design and Methods: We used national Medicaid data and included children less than 21 years with an admission to hospice care. Medical complexity was defined with four criteria (i.e., chronic conditions, functional limitations, high health care use and substantial needs). Using multivariate logistic regression, we evaluated the influence of medical complexity on concurrent hospice care use, while controlling for demographic, hospice, and community characteristics. Results: Thirty‐four percent of the study sample used concurrent hospice care. Medical complexity was unrelated to concurrent hospice care. However, the four individual criteria were associated. A complex chronic condition was negatively related to concurrent hospice care, whereas technology dependence, multiple complex chronic conditions, and mental/behavioral disorders were positively associated to concurrent care use. Practice Implications: These findings suggest that concurrent hospice care may be important for a subset of medically complex children with functional limitations, high health utilization, and substantial needs at end of life. [ABSTRACT FROM AUTHOR]

When the 2010 Patient Protection and Affordable Care Act (ACA) was passed, it fundamentally changed end-of-life care for children. Concurrent Care for Children (ACA, section 2302) enables Medicaid/Children's Health Insurance Program children with a prognosis of 6 months to live to use hospice care while continuing treatment for their terminal illness. Although ACA, section 2302, was enacted a decade ago, little is known about these children. The purpose of this study was to generate the first-ever national profile of children enrolled in concurrent hospice care. Using data from multiple sources, including US Medicaid data files from 2011 to 2013, a descriptive analysis of the demographic, community, hospice, and clinical characteristics of children receiving concurrent hospice care was conducted. The analysis revealed that the national sample was extremely medically complex, even for children at end of life. They received care within a complicated system involving primary care providers, hospices, and hospitals. These findings have clinical and care coordination implications for hospice nurses. [ABSTRACT FROM AUTHOR]

PURPOSE Communication breakdowns in pediatric oncology can have negative consequences for patients and families. A detailed analysis of these negative encounters will support clinicians in anticipating and responding to communication breakdowns. METHODS Semistructured interviews with 80 parents of children with cancer across three academic medical centers during treatment, survivorship, or bereavement. We analyzed transcripts using semantic content analysis. RESULTS Nearly all parents identified negative communication experiences (n 5 76). We identified four categories of contributors to negative experiences: individual (n 5 68), team (n 5 26), organization (n 5 46), and greater health care system (n 5 8). These experiences involved a variety of health care professionals across multiple specialties. Parents reported 12 personal consequences of communication breakdowns: emotional distress (n 5 65), insufficient understanding (n 5 48), decreased trust or confidence (n 5 37), inconvenience (n 5 36), medical harm (n 5 23), decreased self-confidence (n 5 17), decreased emotional support (n 5 13), decreased engagement (n 5 9), false hope (n 5 9), decreased hope (n 5 7), financial insult (n 5 7), and decreased access to resources (n 5 3). We identified five categories of supportive responses from clinicians: exploring (n 5 8), acknowledging (n 5 17), informing (n 5 27), adapting (n 5 27), and advocating (n 5 18). Parents often increased their own advocacy on behalf of their child (n 5 47). Parents also identified the need for parental engagement in finding solutions (n 5 12). Finally, one parent suggested that clinicians should assume that communication will fail and develop contingency plans in advance. CONCLUSION Communication breakdowns in pediatric oncology negatively affect parents and children. Clinicians should plan for communication breakdowns and respond by exploring, acknowledging, informing, adapting, advocating, and engaging parents in finding solutions. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: For adolescents and young adults (AYAs), the diagnosis of cancer can impede social development, especially with respect to education, employment, and financial independence. However, there are limited quantitative data on the extent and trajectory of life disruptions during cancer treatment for AYA patients.Methods: This was a longitudinal, prospective, questionnaire-based cohort study of 145 AYA patients with cancer aged 15 to 29 years who were treated at a large academic cancer center. Questionnaires were administered shortly after diagnosis and 4 and 12 months after diagnosis.Results: Although half of the participants lived with their parents 6 months before diagnosis, 61% lived with their parents after diagnosis (P = .0002 vs 6 months before diagnosis), with a similar proportion reported to be living with their parents 4 months after diagnosis (61%; P = .001) and 55% doing so 12 months after diagnosis (P = .07). Before diagnosis, 38% of the patients were not attending school. After diagnosis, that proportion rose to 61% (P < .0001), with a similar proportion 4 months after diagnosis (61%; P < .0001); 54% were not in school at 12 months (P = .001). Patients experienced similar decrements in employment (30% not working before diagnosis vs 49% not working after diagnosis; P < .0001) and financial independence (37% with complete financial independence before diagnosis vs 31% after diagnosis; P = .02). Overall, 65% of the patients (94 of 145) had not returned to their precancer baseline in at least 1 of these 4 social domains by 12 months after diagnosis.Conclusions: For many AYA patients, cancer leads to less engagement with school and work activities and decreased financial independence from parents. Clinicians should engage in early and ongoing discussions with patients about the potential impact of cancer on their lives. [ABSTRACT FROM AUTHOR]

Purpose: Parents of children with cancer make treatment decisions in highly emotional states while feeling overwhelmed with information. In previous work, 1 in 6 parents demonstrated heightened decisional regret regarding treatment at diagnosis. However, it is unclear how regret evolves over time. We aimed to determine whether parents of children with cancer experience decisional regret over time and to identify parental characteristics and clinician behaviors associated with longitudinal regret.Methods: Prospective, questionnaire-based cohort study of parents of children with cancer at two academic pediatric hospitals. Parents reported decisional regret at diagnosis, 4 months, and 12 months.Results: At baseline, 13% of parents (21/158) reported heightened regret, 11% (17/158) at 4 months (p = 0.43, McNemar's test relative to baseline), and 11% (16/158) at 12 months (p = 0.35 relative to baseline and p = 0.84 relative to 4 months). In multivariable analysis using generalized estimating equations adjusted for the time point of survey completion, heightened regret was associated with non-white race/ethnicity (OR 11.57, 95% CI 3.53 to 41.05, p < .0001) and high anxiety (OR 2.01, 95% CI 1.04 to 3.90, p = .04). Parents with high peace of mind (OR 0.24, 95% CI 0.09 to 0.62, p = .003) and those reporting high-quality information (OR 0.22, 95% CI 0.07 to 0.69, p = 0.01) had lower odds of heightened regret. We found no association between heightened regret and the time point of survey administration.Conclusions: A small, significant proportion of parents experience heightened regret throughout the first year of their child's cancer treatment; non-white parents are at higher risk. Effective communication may protect against regret. [ABSTRACT FROM AUTHOR]

Background: Although the majority of adolescent and young adult (AYA) patients with cancer desire prognostic information, to the authors' knowledge little is known regarding how preferences for prognostic communication change over time.Methods: The current study was a longitudinal, prospective, questionnaire-based cohort study of 136 AYA patients with cancer who were aged 15 to 29 years and who were treated at a large academic cancer center. Previously published scales were administered at the time of diagnosis and at 4 months and 12 months after diagnosis.Results: The majority of patients reported that prognostic information was very/extremely important at the time of diagnosis (85%), at 4 months (96%; P = .002 compared with baseline), and at 12 months (81%; P = .02 compared with baseline). Few patients reported that prognostic knowledge was very/extremely upsetting at baseline (7%), at 4 months (9%; P = .44 compared with baseline), or at 12 months (11%; P = .27 compared with baseline). The majority of patients were satisfied with the amount of prognostic information received throughout the year after diagnosis (81%, 86%, and 81%, respectively, at the time of diagnosis, at 4 months, and at 12 months). This percentage did not change between the time of diagnosis and 4 months (P = .16) or between diagnosis and 12 months (P = 1.00). In multivariable analysis, satisfaction with prognostic information received was associated with patient report of high-quality communication (odds ratio, 2.67; 95% CI, 1.38-5.17) and having a >75% chance of cure (odds ratio, 2.39; 95% CI, 1.24-4.61) after adjustment for patient age category, race/ethnicity, and time point of administration.Conclusions: The majority of AYA patients with cancer were satisfied with prognostic disclosure over time, but a sizeable minority wanted additional information. Desire for prognostic information increased over time. Clinicians should return to prognostic discussions over time to support AYA patients with cancer. [ABSTRACT FROM AUTHOR]

Purpose: The American Academy of Pediatrics recommends that healthcare providers communicate information to patients in a truthful and developmentally appropriate manner. However, there is limited guidance about how to translate these recommendations into clinical practice. The aim of this study was to explore how young cancer patients experienced communication around their illness, especially communication about possible outcomes from disease or treatment.Methods: Participants included young people ages 8 to under 18 years with cancer (N = 16). Semi-structured interviews focused on their expectations about the future, the process of information exchange, and their preferences for communication within the pediatric oncology setting.Results: Overall, participants wanted medical information to be provided to them by their healthcare providers and wanted to be direct participants in medical conversations. However, many participants displayed some ambivalence or conveyed conflicting wishes for prognostic information. For example, some participants reported that they were satisfied with what they knew, but later raised lingering questions. While not the focus of the study, almost every participant discussed social concerns as a key concern for their present and future life.Conclusions: While most pediatric cancer patients want to be involved in conversations about their cancer care, including conversations about prognosis, this is an individual and sometimes fluctuating decision, and healthcare providers should be encouraged to discuss preferences for involvement with patients and families. This study highlights the importance of understanding the developmental factors that make pediatric patients unique, especially with regard to their patterns of communication. [ABSTRACT FROM AUTHOR]

BACKGROUND: Adolescents and young adults (AYAs) with cancer generally want to engage in decision-making but are not always able to do so. We evaluated cancer treatment decisionmaking among AYAs, including decisional engagement and regret. METHODS:We surveyed 203 AYA patients with cancer aged 15 to 29 (response rate 74%) treated at a large academic center and their oncologists. Patients were approached within 6 weeks of diagnosis and asked to report decision-making preferences and experiences (Decisional Roles Scale) and the extent to which they regretted their initial treatment decision (Decisional Regret Scale) assessed at baseline and 4 and 12 months later. RESULTS: A majority of AYAs (58%) wanted to share responsibility for decision-making with oncologists; half (51%) preferred limited involvement from parents. Although most AYAs held roles they preferred, those who did not reported holding more passive roles relative to oncologists (P < .0001) and parents (P = .002) than they desired. Nearly one-quarter of patients (24%; 47 of 195) experienced regret about initial cancer treatment decisions at baseline, with similar rates at 4 (23%) and 12 (19%) months. In a multivariable model adjusted for age, decisional roles were not associated with regret; instead, regret was less likely among patients who trusted oncologists completely (odds ratio 0.17 [95% confidence interval 0.06-0.46]; P < .001) and who reported that oncologists understood what was important to them when treatment started (odds ratio 0.13 [95% confidence interval 0.04-0.42]; P< .001). CONCLUSIONS: Nearly one-fourth of AYA patients expressed regret about initial treatment decisions. Although some AYAs have unmet needs for decisional engagement, attributes of the patient-oncologist relationship, including trust and mutual understanding, may be most protective against regret. [ABSTRACT FROM AUTHOR]

Introduction: Including children in medical conversations is considered the standard of care for children with cancer. However, previous qualitative research has raised concerns about how the child's presence impacts the parent's communication experience. The current study examines the frequency and impact of child presence during a serious medical conversation on the parent's communication experience in pediatric oncology.Methods: Three hundred sixty parents of children newly diagnosed with cancer completed questionnaires assessing the child's presence during the initial conversation with the oncologist about diagnosis and treatment and parental communication experiences. Primary oncologists completed a survey question about the child's prognosis.Results: Sixty-one percent of children were present during the initial conversation, with lowest rates among children aged 3-6 (44%) and 7-12 (44%). Child presence was not associated with parents' reports that they received prognostic information (p = 0.20), high-quality information (p = 0.19), or high-quality communication about the child's cancer (p = 1.0).Discussion: The parent's communication experience is not diminished by the choice to include the child. Given the bioethical imperative to include children in conversations about serious illness whenever possible, this concern should not be used to exclude children, but rather to give parents additional time of their own when needed to fully process decisions. [ABSTRACT FROM AUTHOR]

Background: The majority of patients desire all available prognostic information, but some physicians hesitate to discuss prognosis. The objective of the current study was to examine outcomes of prognostic disclosure among the parents of children with cancer.Methods: The authors surveyed 353 parents of children with newly diagnosed cancer at 2 tertiary cancer centers, and each child's oncologist. Using multivariable logistic regression, the authors assessed associations between parental report of elements of prognosis discussions with the oncologist (quality of information/communication and prognostic disclosure) and potential consequences of these discussions (trust, hope, peace of mind, prognostic understanding, depression, and anxiety). Analyses were stratified by oncologist-reported prognosis.Results: Prognostic disclosure was not found to be associated with increased parental anxiety, depression, or decreased hope. Among the parents of children with less favorable prognoses (<75% chance of cure), the receipt of high-quality information from the oncologist was associated with greater peace of mind (odds ratio [OR], 5.23; 95% confidence interval [95% CI], 1.81-15.16) and communication-related hope (OR, 2.54; 95% CI, 1.00-6.40). High-quality oncologist communication style was associated with greater trust in the physician (OR, 2.45; 95% CI, 1.09-5.48) and hope (OR, 3.01; 95% CI, 1.26-7.19). Accurate prognostic understanding was less common among the parents of children with less favorable prognoses (OR, 0.39; 95% CI, 0.17-0.88). Receipt of high-quality information, high-quality communication, and prognostic disclosure were not found to be significantly associated with more accurate prognostic understanding.Conclusions: The results of the current study demonstrate no evidence that disclosure is associated with anxiety, depression, or decreased hope. Communication processes may increase peace of mind, trust, and hope. It remains unclear how best to enhance prognostic understanding. Cancer 2018;124:1232-41. © 2017 American Cancer Society. [ABSTRACT FROM AUTHOR]

Objective: Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality self-report instruments to be used in pediatric oncology research studies. This study's objective was to conduct a systematic literature review of existing English language instruments used to measure self-reported symptoms in children and adolescents undergoing cancer treatment.Methods: A comprehensive literature search was conducted in MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO to identify relevant articles published through November 10, 2016. Using pre-specified inclusion/exclusion criteria, six trained reviewers carefully screened abstracts and full-text articles for eligibility.Results: There were 7738 non-duplicate articles identified in the literature search. Forty articles met our eligibility criteria, and within these articles, there were 38 self-report English symptom instruments. Most studies evaluated only cross-sectional psychometric properties, such as reliability or validity. Ten studies assessed an instrument's responsiveness or ability to detect changes in symptoms over time. Eight instruments met our criteria for use in future longitudinal pediatric oncology studies.Conclusions: This systematic review aids pediatric oncology researchers in identifying and selecting appropriate symptom measures with strong psychometric evidence for their studies. Enhancing the child's voice in pediatric oncology research studies allows us to better understand the impact of cancer and its treatment on the lives of children. [ABSTRACT FROM AUTHOR]

Purpose: The present study tested whether (and how) language treatment changed online sentence processing in individuals with aphasia. Method: Participants with aphasia (n = 10) received a 12-week program of Treatment of Underlying Forms (Thompson & Shapiro, 2005) focused on production and comprehension of passive sentences. Before and after treatment, participants performed a sentence-picture matching task with active and passive sentences as eye movements were tracked. Twelve age-matched controls also performed the task once each. Results: In the age-matched group, eye movements indicated agent-first predictive processing after hearing the subject noun, followed by rapid thematic reanalysis after hearing the verb form. Pretreatment eye movements in the participants with aphasia showed no predictive agent-first processing, and more accurate thematic analysis in active compared to passive sentences. After treatment, which resulted in improved offline passive sentence production and comprehension, participants were more likely to respond correctly when they made agent-first eye movements early in the sentence, showed equally reliable thematic analysis in active and passive sentences, and were less likely to use a spatially based alternative response strategy. Conclusions: These findings suggest that treatment focused on improving sentence production and comprehension supports the emergence of more normal-like sentence comprehension processes. [ABSTRACT FROM AUTHOR]

Background: Little is known about the care that adolescent and young adult (AYA) patients with cancer receive at the end of life (EOL). Objective: To examine care in the last month of life among AYA patients with cancer. Design: Medical record review of the last 30 days of life. Setting/Subjects: One hundred eleven AYA patients aged 15-39 years at death with either stage I-III cancer and evidence of cancer recurrence or stage IV cancer at diagnosis. Patients received care in Kaiser Permanente Southern California, an integrated healthcare delivery system, and died from 2007 to 2010. Measurements: Use of intensive measures, including chemotherapy in the last 14 days of life and emergency room visits, hospitalizations, and intensive care unit admissions in the last 30 days; documented care preferences; symptom prevalence and treatment; advance care planning; hospice use; and location of death. Results: One hundred seven patients (96%) had documented care preferences in the last month of life. At first documentation, 72% of patients wished for life-prolonging care, 20% wished for care focused on comfort, and 8% were undecided. Forty-seven percent of patients had documented changes in preferences in the last month, with 40% wishing for life-prolonging care when preferences were last noted before death, 56% preferring comfort, and 4% undecided. Seventy-eight percent of patients received at least one form of intensive EOL care, including 75% of those who preferred comfort measures at last documentation. Conclusions: Many AYA patients enter the last month of life wishing for life-prolonging care. While most ultimately wish for comfort, intensive care is prevalent even among such patients. [ABSTRACT FROM AUTHOR]

Objective: Our aim is to understand experiences with treatment decision-making among young adults with cancer.Methods: We studied patients with lung cancer or colorectal cancer in the Cancer Care Outcomes Research and Surveillance Consortium, a prospective cohort study. We identified 148 young adult patients aged 21-40 years who completed baseline interview questions about cancer treatment decision-making; each was propensity score matched to three middle adult patients aged 41-60 years, for a cohort of 592 patients. Patients were asked about decision-making preferences, family involvement in decision-making, and worries about treatment. An ordinal logistic regression model evaluated factors associated with more treatment worries.Results: Young and middle-aged adults reported similar decision-making preferences (p = 0.80) and roles relative to physicians (p = 0.36). Although family involvement was similar in the age groups (p = 0.21), young adults were more likely to have dependent children in the home (60% younger versus 28% middle-aged adults, p < 0.001). Young adults reported more worries about time away from family (p = 0.002), and, in unadjusted analyses, more cancer treatment-related worries (mean number of responses of 'somewhat' or 'very' worried 2.5 for younger versus 2.2 for middle-aged adults, p = 0.02.) However, in adjusted analyses, worries were associated with the presence of dependent children in the home (odds ratio [OR] 1.55, 95% CI = 1.07-2.24, p = 0.02), rather than age.Conclusions: Young adults involve doctors and family members in decisions at rates similar to middle-aged adults but experience more worries about time away from family. Patients with dependent children are especially likely to experience worries. Treatment decision-making strategies should be based on individual preferences and needs rather than age alone. Copyright © 2015 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background: Parents of children with cancer desire information regarding the late effects of treatment. In the current study, the authors assessed parents' preparedness for late effects at least 5 years after their child's diagnosis.Methods: A cross-sectional survey was conducted of all eligible parents of children with cancer between April 2004 and September 2005 at Dana-Farber/Boston Children's Cancer and Blood Disorders Center within 1 year of diagnosis, and a follow-up questionnaire was administered at least 5 years later.Results: Approximately 66% of parents of children who were still living, and who were able to be contacted, completed the follow-up questionnaire (91 of 138 parents). Approximately 77% of respondents (70 of 91 respondents) were parents of disease-free survivors and 23% (21 of 91 respondents) were parents of children with recurrent disease. The majority of parents believed they were well prepared for their child's oncology treatment (87%), but fewer felt prepared for future limitations experienced by their children (70%; P = .003 using the McNemar test) or for life after cancer (62%; P<.001). On bivariable analysis among parents of disease-free survivors, parents were more likely to believe themselves to be prepared for future limitations when they also reported that communication with the oncologist helped to address worries regarding the future (odds ratio, 4.50; P = .01). At the time of diagnosis, both parents and physicians underestimated a child's risk of future limitations; 45% of parents and 39% of clinicians predicted future limitations in physical abilities, intelligence, or quality of life, but at the time of the follow-up questionnaire >5 years later, 72% of children experienced limitations in at least 1 domain.Conclusions: Parents believe themselves to be less prepared for survivorship than for treatment. High-quality communication may help parents to feel more prepared for life after cancer therapy. Cancer 2016;122:2587-94. © 2016 American Cancer Society. [ABSTRACT FROM AUTHOR]

The article analyzes child and family factors associated with hospice versus home health care use among children with multiple complex chronic conditions, and also mentions advantages of both hospice and home health care.

Background: Physicians worry that disclosure of prognostic information can be distressing and deprive families of hope. Retrospective studies have shown that prognostic disclosure does not abrogate hope, but prospective data are lacking. Objective: The study objective was to prospectively evaluate responses to prognosis communication among parents of children with advanced cancer. Design: For this qualitative study we audiotaped conversations between clinicians and parents of children with newly relapsed or refractory cancer, and then interviewed parents about experiences with prognosis communication. Parents were asked to reflect on physician statements about prognosis. Setting/subjects: Subjects were 32 pairs of parents and clinicians of children with relapsed or refractory cancer treated at Dana-Farber/Boston Children's Center for Cancer and Blood Disorders, Boston, Massachusetts. Results: Prognosis was discussed in 28/32 conversations (88%). Although most parents (N= 22, 69%) found prognostic information upsetting, most also valued honest communication about prognosis (N = 22, 69%.) Parents noted that frank disclosure fostered hope by relieving uncertainty and allowing them to make the best possible decisions for their children. Excessive optimism or a lack of information, in contrast, was sometimes experienced as a threat to hope and the parent-clinician relationship. A minority of parents were upset by clinician communication about prognosis (N = 4, 12%), but most did not consider the clinician responsible for their distress. Rather, parents attributed distress to the difficult situation. Conclusions: Many parents consider prognosis communication to be both difficult and necessary. While upsetting, prognostic information engenders hope by helping parents feel prepared to do their best for their children in the difficult days to come. [ABSTRACT FROM AUTHOR]

Context: Children at end of life often experience multiple complex chronic conditions with more than 50% of children reportedly having two or more conditions. These complex chronic conditions are unlikely to occur in an entirely uniform manner in children at end of life. Previous work has not fully accounted for patterns of multiple conditions when evaluating care among these children.Objectives: The objective of the study was to understand the clusters of complex chronic conditions present among children in the last year of life.Methods: Participants were 1423 pediatric decedents from the 2007 to 2008 California Medicaid data. A latent class analysis was used to identify clusters of children with multiple complex chronic conditions (neurological, cardiovascular, respiratory, renal, gastrointestinal, hematologic, metabolic, congenital, cancer). Multinomial logistic regression analysis was used to examine the relationship between demographic characteristics and class membership.Results: Four latent classes were yielded: medically fragile (31%); neurological (32%); cancer (25%); and cardiovascular (12%). Three classes were characterized by a 100% likelihood of having a complex chronic condition coupled with a low or moderate likelihood of having the other eight conditions. The four classes exhibited unique demographic profiles.Conclusion: This analysis presented a novel way of understanding patterns of multiple complex chronic conditions among children that may inform tailored and targeted end-of-life care for different clusters. [ABSTRACT FROM AUTHOR]

Background: Medical interventions are an important component of the illness experience in advanced cancer. Objective: To describe the use of medical interventions between diagnosis and death in decedents with metastatic lung and colorectal cancer. Design: Retrospective analysis of a prospective cohort study. Setting/Subjects: We studied 1,840 decedents from the Cancer Care Outcomes Research and Surveillance (CanCORS) study. Subjects had been diagnosed with stage IV lung or colorectal cancer between 2003 and 2005. Measurements: Hospitalizations, surgeries, radiation therapy treatments, chemotherapy treatments, and end-of-life care, reported by tertile of overall survival time. Results: Median survival in the bottom, middle, and top tertiles of survival was 1.2, 5.3, and 15.3 months for lung cancer, and 3.0, 18.0, and 44.4 months for colorectal cancer. Hospitalizations, chemotherapy receipt, and hospice enrollment increased with increasing survival. The median duration of chemotherapy in the top survival tertile was 149 days for lung cancer and 498 days for colorectal cancer. A minority of decedents used any hospice services, and the median duration of hospice enrollment exceeded 30 days only for enrollees in the top survival tertile (lung cancer, 35 days; colorectal cancer, 66 days). Conclusions: For patients with metastatic lung and colorectal cancer, longer survival is associated with increased intensity of medical care, characterized by greater use of chemotherapy and acute hospital care. Hospice utilization was uniformly low, and most hospice enrollees were referred to hospice in the last 30 days of life. [ABSTRACT FROM AUTHOR]

Background: Prognosis discussion is an essential component of informed decision-making. However, many terminally ill patients have a limited awareness of their prognosis and the causes are unclear. Objective: To explore the impact of physicians' propensity to discuss prognosis on advanced cancer patients' prognosis awareness. Design: Cancer Care Outcomes Research and Surveillance Consortium (CanCORS) study, a prospective cohort study with patient and physician surveys. Setting/Subjects: We investigated 686 patients with metastatic lung or colorectal cancer at diagnosis who participated in the CanCORS study and reported about their life expectancy. Data were linked to the physician survey from 486 physicians who were identified by these patients as filling important roles in their cancer care. Results: Few patients with metastatic cancers (16.5%) reported an accurate awareness of their prognosis, defined as reporting a life expectancy of less than 2 years for lung cancer or less than 5 years for colorectal cancer. Patients whose most-important-doctor (in helping patient make decisions) reported discussing prognosis with terminally ill patients earlier were more likely than those whose doctors deferred these discussions to have an accurate prognosis awareness (adjusted proportion, 18.5% versus 7.6%; odds ratio, 3.23; 95% confidence interval, 1.39-7.52; p=0.006). Conclusions: Few patients with advanced cancer could articulate an accurate prognosis estimate, despite most having received chemotherapy and many physicians reported they would discuss prognosis early. Physicians' propensity to discuss prognosis earlier was associated with more accurate patient reports of prognosis. Enhancing the communication skills of providers with important roles in cancer care may help to improve cancer patients' understanding of their prognosis. [ABSTRACT FROM AUTHOR]

Background: The role of emotional acceptance of a terminal illness in end-of-life (EOL) care is not known. The authors developed a measure of peaceful acceptance at the EOL, and evaluated the role of peaceful acceptance in EOL decision-making and care.Methods: The authors developed the Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE) questionnaire to measure the extent to which patients with advanced cancer have a sense of peaceful acceptance of their terminal illness. The scale was administered to 160 patients with advanced cancer along with measures of other attributes that hypothetically are related to acceptance, including cognitive acceptance of terminal illness. EOL outcomes in 56 patients who died during the study also were examined.Results: The 12-item PEACE questionnaire had 2 subscales: a 7-item Struggle With Illness subscale (Cronbach alpha = .81) and a 5-item Peaceful Acceptance subscale (alpha = .78). Both subscales were associated with patients' self-reported peacefulness (correlation coefficient [r] = 0.66 for acceptance [P <.0001]; r = -0.37 for struggle [P < .0001]). Struggle With Illness scores were associated with cognitive terminal illness acknowledgment (mean scores, 14.9 vs 12.4 for patients who were not aware that their illness was terminal; P = .001) and with some aspects of advance care planning (living will or healthcare proxy: mean scores, 13.9 vs 11.5; P = .02). In addition, among patients who had died, the use of a feeding tube at the EOL was associated inversely with Peaceful Acceptance (P = .015).Conclusions: The current study indicated that the PEACE questionnaire is a valid and reliable measure of peaceful acceptance and struggle with illness. Scores were associated with some choices for EOL care among patients with advanced cancer. [ABSTRACT FROM AUTHOR]

BACKGROUND AND OBJECTIVES: Conversations about dignity are fundamental to person-centered care in pediatrics, yet practical language strategies to promote and support dignity remain understudied. To address this gap, we aimed to identify and characterize language used by pediatric oncologists to recognize and affirm dignity across advancing illness. METHODS: In this longitudinal prospective study, we audio-recorded serial disease reevaluation encounters between pediatric oncologists, children with cancer, and families across 24 months or until the child's death. Using a hybrid deductive--inductive qualitative approach, we defined dignity language a priori on the basis of existing descriptions of dignity in the literature and then conducted a content analysis to refine the definition specific to pediatric cancer care before coding serial medical encounters. Thematic frequencies were reported by using descriptive statistics. RESULTS: A total of 91 discussions at timepoints of disease progression were audio-recorded for 36 patients and their families. No dignity language was identified in nearly half (45%) of "bad news" encounters, and the time spent by the oncologist engaging in dignity language represented a minority (<7%) of overall recorded dialogue. Within coded dialogue, we characterized 3 key themes upholding dignity language (empowerment, autonomy, respect). CONCLUSIONS: Opportunities exist to improve dignity communication in childhood cancer, and the authors propose a conceptual model ("Lend an EAR") to guide dignity-based communication in pediatric cancer. Future research should emphasize patient and parent perspectives on language to support dignity for children with advanced cancer, with stakeholder-driven refinement of the Lend an EAR model before integration and testing in communication skills training programs. [ABSTRACT FROM AUTHOR]

Purpose: Patient-reported data may provide valuable information for oncology quality measurement. We evaluated applying patient-reported data from the Cancer Care Outcomes Research and Surveillance Consortium national study to quality indicators addressing supportive oncology domains. Methods: We analyzed surveys including validated instruments for symptoms and care planning from 4,174 patients newly diagnosed with lung or colorectal cancer. We adapted existing supportive oncology indicators for use with patient-reported data from Cancer Quality-ASSIST and the American Society of Clinical Oncology Quality Oncology Practice Initiative. Where feasible, we examined indicators using medical record data for comparison purposes. Results: Using patient-reported data, the percentage of patients meeting indicator criteria for screening ranged from 74% (significant depressive symptoms) to 93% (pain, nausea/vomiting). The percentage meeting indicator criteria for symptom treatment ranged from 73% (significant depressive symptoms) to 99% (nausea/vomiting). Symptom severity did not affect the results. Using medical record data, the percentage meeting indicator criteria varied between 4% (significant depressive symptoms) and 23% (pain). For information and care planning, 44% met criteria for discussion about resuscitation and 32% for hospice discussion using survey data. Using medical record data, 11% met criteria for goals-of-care discussion in intensive care and 46% for hospice/pain management/palliative care referral before death. Conclusion: Quality of care for symptoms measured using patient self-report was higher than when including medical record data. Use of patient-reported and medical record data allowed measurement of different perspectives on care planning indicators. Patient-reported data provide a complementary, patient- centered perspective on the quality of supportive oncology care. [ABSTRACT FROM AUTHOR]

Context: The National Cancer Institute created the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) to allow direct input on symptomatic adverse events (AEs) from adult patients in oncology trials.Objectives: This study sought to determine the youngest age to complete the PRO-CTCAE, evaluated comprehension of PRO-CTCAE among adolescents, tested new items not currently in PRO-CTCAE, and tested a parent-proxy version.Methods: From seven pediatric cancer hospitals, 51 adolescents (13-20 years) receiving cancer treatment participated, along with 40 parent proxies. We evaluated 55 AEs from the PRO-CTCAE library (97 questions) and seven new AEs not in PRO-CTCAE that assess symptom frequency, severity, interference, or presence. Questions were distributed across three forms to reduce burden. Cognitive interviews with retrospective probing were completed in age groups of 13-15 and 16-20 year olds. Proxies were interviewed independently.Results: In general, the 16-20 year olds and the parent proxies were able to understand and complete the PRO-CTCAE and newly designed AE questions. Five PRO-CTCAE terms (bloating of the abdomen, anxiety, flashing lights in front of your eyes, hot flashes, and bed sores) and the wording of the questions about AE severity were challenging for a few adolescents and proxies. The 13-15 year olds had greater challenges completing the PRO-CTCAE.Conclusion: This study extends use of the adult PRO-CTCAE for adolescents as young as 16 years and proposes new questions for seven new symptomatic AEs and a parent-proxy version of PRO-CTCAE. Additional testing of the new questions and alternative language for more challenging PRO-CTCAE items is recommended in adults. [ABSTRACT FROM AUTHOR]

Little is known about factors associated with unmet needs for symptom management in patients with cancer. Methods Patients with a new diagnosis of lung and colorectal cancer from the diverse nationally representative Cancer Care Outcomes Research and Surveillance cohort completed a survey approximately 5 months after diagnosis (N = 5,422). We estimated the prevalence of unmet need for symptom management, defined as patients who report that they wanted help for at least one common symptom (pain, fatigue, depression, nausea/vomiting, cough, dyspnea, diarrhea) during the 4 weeks before the survey but did not receive it. We identified patient factors associated with unmet need by using logistic regression with random effects to account for clustering within study sites. Results Overall, 15% (791 of 5,422) of patients had at least one unmet need for symptom management. Adjusting for sociodemographic and clinical factors, African American race, being uninsured or poor, having early-stage lung cancer, and the presence of moderate to severe symptoms were associated with unmet need (all P < .05). Furthermore, patients who rated their physician's communication score, 80 (on a 0 to 100 scale) had adjusted rates of an unmet need for symptom management that were more than twice as high as patients who rated their physicians with a perfect communication score (23.1% v 10.0%; P < .001). Conclusion A significant minority of patients with newly diagnosed lung and colorectal cancer report unmet needs for symptom management. Interventions to improve symptom management should consider the importance of physician communication to the patient's experience of disease. [ABSTRACT FROM AUTHOR]

BACKGROUND: Previous work suggests that parents of children with cancer can remain hopeful despite receiving prognostic information, but we know little about what hope means to such parents, or the extent to which parents can feel hopeful even while facing the child's impending death. METHODS: We audiotaped conversations between clinicians and parents of 32 children with relapsed or refractory cancer, and then interviewed parents about their hopes and expectations for their child. RESULTS: Parent statements about prognosis in interviews mirrored those made by clinicians during discussions about the child's diagnosis with refractory or relapsed cancer. Clinicians used language referring to hope during these conversations but did not ask parents directly about their hopes. Parents expressed a range of hopes for their children, from hopes related to cure or treatment response, to quality of life, normalcy, and love and relationships for the child. For most parents, expectations about prognosis were not aligned with their hopes for the child; for example, many parents hoped for a cure and also reported that they did not believe cure was possible. Many parents were able to acknowledge this incongruence. CONCLUSIONS: Parents accurately conveyed the reality of their child's serious condition in the setting of advanced cancer, and yet maintained hope. Hopes were not limited to hope for cure/ treatment response. Clinicians should be encouraged to engage in direct conversations about hope with parents as a means to elicit realistic hopes that can help to focus the most meaningful plans for the child and family. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]