"Understanding why she had to leave me": The roles of religion and spirituality in narratives of parents grieving the loss of a child to cancer.

Religion and spirituality often influence how people experience illness, death, and grief. The roles of religion and spirituality for parents who have lost a child to cancer remain underexplored. This study aimed to describe how cancer-bereaved parents talk about religion and spirituality when reflecting on their experiences. Participants whose children died of cancer one to six years prior to participation completed a one-on-one semi-structured interview. Interview transcripts underwent qualitative analysis. Content pertaining to religion and/or spirituality underwent subsequent in-depth analysis to identify themes. Of 30 interviews analyzed, 28 contained religion/spirituality content. Four themes arose: (1) life after death, (2) divine control, (3) evolution of faith after loss, and (4) religious and spiritual interactions within the medical community. The absence of supports for religious and spiritual needs represents a gap in bereavement care. Future work should clarify needs and explore potential interventions.

Medical experts and trusted confidants: parent perceptions of the clinician-parent relationship in childhood cancer.

PURPOSE: A childhood cancer diagnosis threatens the health, safety, and security of the child and whole family unit. A strong relationship between the healthcare team and family is integral to provision of holistic support during this time of crisis. Family-centered care necessitates a fluid, therapeutic relationship between parents and the child's healthcare team. This study investigated bereaved parents' perspectives on their relationship with their child's care team and the impact of these relationships on their coping across the cancer trajectory and into bereavement. METHODS: Thirty-one parents whose child died from cancer between 1 and 6 years prior to study enrollment participated in semi-structured interviews about their relationships and interactions with their child's healthcare team across the illness course and into bereavement. We audio-recorded interviews, transcribed them verbatim, and utilized a codebook thematic analysis approach to analyze interview transcripts. RESULTS: Four themes emerged across interviews with parents describing their perceptions of the parent-clinician relationship: (1) a collaborative approach improves perceptions of care, (2) professional trust is core to the relationship, (3) parental personal preference and bias can limit relationship-building, and (4) meaningful connections form on an emotional, individualized level. These themes highlight relational patterns between parents and clinicians that can promote or erode alliance and collaboration. CONCLUSION: Bereaved parents recognize key attributes that influence the parent-clinician relationship. Educating clinicians about parent-identified positive modifiable behaviors (e.g., communication deficits) and awareness of non-modifiable care factors (e.g., individual personality preferences) may enable clinicians to strengthen relationships with parents and ultimately improve quality of care.

Approaches for Discussing Clinical Trials with Pediatric Oncology Patients and Their Families.

PURPOSE OF REVIEW: This manuscript aims to describe evidence-based best practices to guide clinicians in communicating with pediatric patients and their families about clinical trial enrollment. RECENT FINDINGS: The standard paradigm for discussing clinical trial enrollment with pediatric oncology patients and their families inconsistently enables or facilitates true informed consent. Evidence exists to suggest that adopting a shared decision-making approach may improve patient and family understanding. When navigating communication about clinical trials, clinicians should integrate the following evidence-based communication approaches: (1) extend dialogue about clinical trial enrollment across multiple conversations, allowing families space and time to process information independently; (2) use core communication skills such as avoiding jargon, checking for understanding, and responding to emotion. Clinicians should consider factors at the individual, team, organizational, community, and policy levels that may impact clinical trial communication with pediatric cancer patients and their families. This article reviews learnable skills that clinicians can master to optimize communication about clinical trial enrollment with pediatric cancer patients and their families.

Associations of job demands and patient safety event involvement on burnout among a multidisciplinary group of pediatric hematology/oncology clinicians.

BACKGROUND: Workplace burnout can result in negative consequences for clinicians and patients. We assessed burnout prevalence and sources among pediatric hematology/oncology inpatient nurses, ambulatory nurses, physicians (MDs), and advanced practice providers (APPs) by evaluating effects of job demands and involvement in patient safety events (PSEs). METHODS: A cross-sectional survey (Maslach Burnout Inventory) measured emotional exhaustion, depersonalization, and reduced personal accomplishment. The National Aeronautics and Space Administration Task Load Index measured mental demand, physical demand, temporal demand, effort, and frustration. Relative weights analyses estimated the unique contributions of tasks and PSEs on burnout. Post hoc analyses evaluated open-response comments for burnout factors. RESULTS: Burnout prevalence was 33%, 20%, 34%, and 33% in inpatient nurses, ambulatory nurses, and MD, and APPs, respectively (N = 481, response rate 69%). Reduced personal accomplishment was significantly higher in inpatient nurses than MDs and APPs. Job frustration was the most significant predictor of burnout across all four cohorts. Other significant predictors of burnout included temporal demand (nursing groups and MDs), effort (inpatient nurses and MDs), and PSE involvement (ambulatory nurses). Open-response comments identified time constraints, lack of administrator support, insufficient institutional support for self-care, and inadequate staffing and/or turnover as sources of frustration. CONCLUSIONS: All four clinician groups reported substantial levels of burnout, and job demands predicted burnout. The body of knowledge on job stress and workplace burnout supports targeting organizational-level sources versus individual-level factors as the most effective prevention and reduction strategy. This study elaborates on this evidence by identifying structural drivers of burnout within a multidisciplinary context of pediatric hematology/oncology clinicians.

The state of the science for communication training in pediatric oncology: A systematic review.

Within the field of pediatric oncology, communication skills training (CST) has been recognized as a high priority by professional and accrediting organizations. However, the effectiveness of formalized CST interventions for pediatric oncology providers remains poorly understood. We systematically searched PubMed, Web of Science, Scopus, and PsycInfo for original research articles assessing the effectiveness and quality of CST interventions targeting pediatric oncology clinicians. From 971 deduplicated references, eight articles representing six communication interventions were eligible for inclusion. This review summarizes the existing literature with respect to CST content, intervention methodology, targeted outcome metrics, measurement tools, short-term and sustained benefits, design biases, and availability of materials to allow for reproduction of interventions. Ultimately, studies on CST in pediatric oncology are few, heterogeneous, and lacking in standardized outcome metrics; however, synthesis of the available literature suggests feasibility and effectiveness. Increased scientific rigor is needed, and specific recommendations to advance the field are described.

Are we meeting the informational needs of cancer patients and families? Perception of physician communication in pediatric oncology.

BACKGROUND: High-quality oncology care is marked by skillful communication, yet little is known about patient and family communication perceptions or content preferences. Our study sought to elicit pediatric oncology patient and parent perceptions of early cancer communication to establish whether informational needs were met and identify opportunities for enhanced communication throughout cancer care. METHOD: An original survey instrument was developed, pretested, and administered to 129 patients, age 10-18 years, and their parents at 3 cancer centers between 2011 and 2015. Statistical analysis of survey items about perceived communication, related associations, and patient/parent concordance was performed. RESULTS: A greater percentage of participants reported "a lot" of discussion about the physical impact of cancer (patients, 58.1% [n = 75]; parents, 69.8% [n = 90]) compared with impact on quality of life (QOL) (patients, 44.2% [n = 57]; parents, 55.8% [n = 72]) or emotional impact (patients, 31.8% [n = 41]; parents, 43.4% [n = 56]). One fifth of patients (20.9% [n = 27]) reported they had no up-front discussion about the emotional impact of cancer treatment. Parents indicated a desire for increased discussion regarding impact on family life (27.9% [n = 36]), long-term QOL (27.9% [n = 36]), and daily activities (20.2% [n = 26]). Patients more frequently than parents indicated a desire for increased physician/patient discussion around the impact on daily activities (patients, 40.3% [n = 52]; parents, 21.7% [n = 28]; P < .001), long-term QOL (patients, 34.9% [n = 45]; parents, 16.3% [n = 21]; P < .001), pain management (patients, 23.3% [n = 30]; parents, 7% [n = 9]; P < .001), physical symptom management (patients, 24% [n = 31]; parents, 7.8% [n = 10]; P < .001), short-term QOL (patients, 23.3% [n = 30]; parents, 9.3% [n = 12]; P = .001), and curative potential (patients, 21.7% [n = 28]; parents, 8.5% [n = 11]; P = .002, P values calculated using McNemar's test). CONCLUSION: Oncologists may not be meeting the informational needs of many patients and some parents/caregivers. Communication could be enhanced through increased direct physician-patient communication, as well as proactive discussion of emotional symptoms and impact of cancer on QOL.

Factors influencing survival after recurrence in osteosarcoma: A report from the Children's Oncology Group.

BACKGROUND: Despite drastic improvement in overall survival for pediatric patients with cancer, those with osteosarcoma have stable rates of survival since the 1980s. This project evaluates the effect of several variables on survival after first recurrence in patients with osteosarcoma. METHODS: Data from three prospective North American cooperative group trials for newly diagnosed osteosarcoma are included: INT-0133, POG-9754, and AOST0121. The analytic population for this study is all enrolled patients with first event-free survival (EFS) event of relapse. The primary outcome measure for this retrospective analysis was survival after recurrence (SAR). RESULTS: The analytic population consisted of N = 431 patients. SAR was statistically significantly associated with age at enrollment (<10 years, P = 0.027), presence of metastatic disease at diagnosis (localized, P < 0.0001), site of relapse (combination lung + bone, unfavorable, P = 0.005), and time to first relapse (2+ years, favorable, P < 0.0001) in multivariate analysis. Ethnicity, primary site of tumor, race, and sex were not significantly related to SAR. CONCLUSIONS: Prolonged SAR in patients with relapsed osteosarcoma is associated with age, extent of disease at diagnosis, site of and time to relapse. Adolescent and young adult patients with osteosarcoma have shorter SAR than younger patients, consistent with studies showing decreased overall survival in this group. Although patients with primary metastatic disease have shorter SAR, there is a subset of patients who relapse greater than 2 years from initial diagnosis that will become survivors. Histological response was significantly associated with time to relapse, but was not predictive of SAR.

Adolescent and Young Adult Oncology, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology.

This selection from the NCCN Guidelines for Adolescent and Young Adult (AYA) Oncology focuses on treatment and management considerations for AYA patients with cancer. Compared with older adults with cancer, AYA patients have unique needs regarding treatment, fertility counseling, psychosocial and behavioral issues, and supportive care services. The complete version of the NCCN Guidelines for AYA Oncology addresses additional aspects of caring for AYA patients, including risk factors, screening, diagnosis, and survivorship.

Advancing the field of communication research in pediatric oncology: A systematic review of the literature analyzing medical dialogue.

Historically, communication research in pediatric oncology has relied on surveys and interviews, resulting in cross-sectional and retrospective studies constrained by selection, recognition, and recall biases. This systematic review identifies and synthesizes the published literature analyzing primary data from recorded conversations between pediatric oncologists, patients with cancer, and their families, with the following objectives: (1) to identify the extent and content of the evidence base, (2) to describe methodological strategies utilized in the analysis of recorded medical dialogue, (3) to aggregate salient findings, and (4) to generate recommendations for future prospective research related to analysis of medical dialogue in pediatric oncology.

Long-term survivors of childhood bone and soft tissue sarcomas are at risk of hospitalization.

BACKGROUND: Childhood cancer survivors can have a high burden of chronic conditions related to cancer treatment, some of which are debilitating or potentially life-threatening. Much remains to be learned about late effects in bone and soft tissue sarcoma survivors. PROCEDURES: The Utah Cancer Registry was used to identify survivors of bone (N = 71) and soft tissue sarcomas (N = 98) who were diagnosed at ages 0-20 years between 1973 and 2007 and were alive at least 5 years after diagnosis. We selected an age-sex-matched comparison cohort (N = 934). Hospitalizations from 1996 to 2012 were extracted from the Utah Department of Health statewide inpatient hospitalization discharge records. Cox, Poisson, and Gamma regressions were used to evaluate the risk of hospitalization, rate of admission, and length of stay for survivors versus the comparison cohort. Primary ICD-9 codes defined the most common reasons for hospitalizations. RESULTS: The hazard ratio (HR) of any hospitalization was higher for survivors in reference to the comparison cohort (HR = 2.12, 95% confidence interval [CI] 1.51-2.97). Survivors experienced more hospital admissions (rate ratio [RR] = 4.58, 95% CI 3.92-5.35) and longer length of stay (RR = 1.28, 95% CI 1.12-1.46) compared with the comparison cohort. Survivors treated with any chemotherapy were at three-fold higher risk (HR = 3.37, 95% CI 1.94-5.83) of hospitalization compared with survivors who received surgery and/or radiation alone. Among hospitalized survivors, the most common reason was injury for bone tumor (26.8%) and neoplasm for soft tissue sarcoma (12.2%). CONCLUSION: Childhood survivors of bone tumor and soft tissue sarcoma face ongoing risk of hospitalization for years after diagnosis.

Health care experiences of long-term survivors of adolescent and young adult cancer.

PURPOSE: Evaluate health care access and experiences with care among long-term survivors of adolescent and young adult (AYA) cancer relative to a comparison group in the USA. METHODS: The 2008 to 2012 Medical Expenditure Panel Surveys identified 1163 survivors of cancer, diagnosed ages 15-39, current ages 20-64, who were at least 5 years after diagnosis. A comparison group without cancer was matched using age, sex, and other characteristics. Primary outcomes included having ≥1 visit to doctor's office/clinic in the previous year and perceived health care quality (0 = worst to 10 = best; categorized as low (0-4), intermediate (5-7), and high (8-10)). Other experience-related outcomes (e.g., having adequate time with providers and providers show respect) were also evaluated. Bivariate analyses compared these outcomes between survivors and the comparison group. Multivariable logistic regressions identified survivor-level factors associated with health care visits and quality. RESULTS: Survivors had ≥1 visit more often (82.1 vs. 75.8 %, p = 0.005) yet rated their health care quality lower (low or intermediate 30.7 vs. 23.6 %, p < 0.001) than the comparison group. Fewer survivors reported always having enough time with providers (41.7 vs. 54.6 %, p < 0.001) and that providers always show respect (57.5 vs. 67.7 %, p = 0.002). Uninsured survivors were less likely to have ≥1 visit (odds ratio (OR) = 0.26, 95 % confidence interval (CI) 0.17-0.40, p < 0.001) and rated their health care quality lower (OR = 0.25, 95 % CI 0.13-0.48, p < 0.001) than privately insured. Many other factors were associated with visits and quality. CONCLUSION: Survivors of AYA cancer reported more health care visits but worse health care experiences than individuals without cancer. Targeted interventions that may improve survivors' experiences with health care should be evaluated.

An Assessment to Inform Pediatric Cancer Provider Development and Delivery of Survivor Care Plans.

Current guidelines recommend all pediatric cancer survivors receive a survivor care plan (SCP) for optimal health management, yet clinical delivery of SCPs varies. We evaluated oncology providers' familiarity with and preferences for delivering SCPs to inform the implementation of a future SCP program at our institution. From November 2013 to April 2014, oncology providers from the Primary Children's Hospital in Salt Lake City, UT, completed a survey (n=41) and a 45-min focus group (n=18). Participants reported their familiarity with and training in SCP guidelines, opinions on SCPs, and barriers to delivering SCPs. As a secondary analysis, we examined differences in survey responses between physicians and nurses with Fisher's exact tests. Focus group transcripts and open-ended survey responses were content analyzed. Participants reported high familiarity with late effects of cancer treatment (87.8%) and follow-up care that cancer survivors should receive (82.5%). Few providers had delivered an SCP (oncologists 35.3% and nurses 5.0%; p=0.03). Barriers to providing SCPs included lack of knowledge (66.7%), SCP delivery is not expected in their clinic (53.9%), and no champion (48.7%). In qualitative comments, providers expressed that patient age variation complicated SCP delivery. Participants supported testing an SCP intervention program (95.1%) and felt this should be a team-based approach. Strategies for optimal delivery of SCPs are needed. Participants supported testing an SCP program to improve the quality of patient care. Team-based approaches, including nurses and physicians, that incorporate provider training on and support for SCP delivery are needed to improve pediatric cancer care.

Advances in therapy for pediatric sarcomas.

Pediatric sarcomas are relatively rare malignancies individually. As a group they are typically approached with combination chemotherapies in addition to local control. Fortunately, these malignancies have been approached through careful clinical trial collaboration to define risk groups and appropriately deliver local control measures and systemic therapies. Although local disease is typically approached with curative intent, therapy typically lasts over 6 months and has significant associated morbidities. It is more difficult to cure metastatic disease or induce sustained remissions. In this article, we discuss recent advances in the understanding of the disease process and highlight recent and future cooperative group trials in osteosarcoma, Ewing sarcoma, rhabdomyosarcoma, nonrhabdomyosarcoma soft tissue sarcomas, and desmoid tumor as well as discuss promising therapeutic approaches such as epigenetics and immunotherapy.

Patient and clinician beliefs about potential barriers to treatment of neuropathic pain for adolescents with sickle cell disease.

Pain is the hallmark symptom causing morbidity for people with sickle cell disease (SCD) and may present as nociceptive, neuropathic, or mixed type pain. Neuropathic pain (NP) is underrecognized and undertreated in patients with SCD and is associated with decreased patient-reported quality of life. Surveys were completed by clinicians caring for adolescents with SCD in the outpatient setting. SCD patients ages 1418 at increased risk of NP completed a patient-facing survey at a scheduled clinic visit. Ninety-four percent of responding clinicians agreed that NP significantly contributes to reported pain in SCD. Clinicians believed that NP medications are effective for reducing chronic pain (62%) and decreasing opioid utilization (44%). Clinician-identified barriers to prescribing NP medications included concerns about medication adherence (82%), lack of pediatric guidelines for NP medications (70%), and perceived patient concern about side effects (65%). More than 1/3 (35%) of clinicians reported that they were not comfortable managing NP medications. Clinician-identified barriers to referral to a pain management specialist included scheduling concerns (88%) and perceived patient/family lack of interest (77%). Most patients expressed willingness to take a medication for NP (78%), see a pain management specialist (84%), or learn more about nonpharmacologic interventions (72%), although most (51%) also reported some concerns about taking a medication for NP, citing insufficient knowledge (34%), and potential for side effects (32%). A minority of respondents (15%) worried about referral to a pain management specialist. Clinician and patient perspectives provide insights that may guide education efforts or other interventions to improve treatment of SCD-related NP.

Factors influencing caregiver decisions to use complementary and integrative therapies in pediatric oncology settings: Findings from a qualitative analysis.

PURPOSE: Complementary and integrative medicine (CIM) therapies (i.e., non-conventional Western medicine interventions) may reduce side-effects associated with pediatric oncology treatment. CIM therapies may also improve caregiver psychological and physical health that is exacerbated during pediatric cancer treatment. Despite known benefits, these therapies are not widely used within pediatric oncology populations in the United States. To guide and promote CIM use among this population, the aim of this project was to qualitatively explore factors that contribute to caregivers' decision to include CIM use in their own and child's care. METHODS: Twenty caregivers of children (ages 0.5-14 years) being treated for cancer participated in this study. Each completed a demographic form and the CIM use questionnaire. Qualitative interviews followed by a card sort task were used to assess barriers and facilitators of uptake for caregivers and their child with cancer. RESULTS: A number of predisposing (e.g., child age, beliefs) and needs factors (e.g., potential to treatment-related side-effects) provide insight into caregivers' decisions to use CIM for their child. Analyses also revealed the importance of enabling factors (e.g., resources) for caregiver use. Caregivers also reported benefiting from additional information about risk/benefit analysis of these therapies, and current research for CIM use in caregivers and children being treated for cancer. CONCLUSION: Children may benefit from individually tailored complementary and integrative medicine consultations that explore patient history and specific needs factors to improve preference concordant care and uptake. Caregivers may benefit from support that improves enabling factors associated with care (e.g., improved accessibility).

Leveraging Grief: Involving Bereaved Parents in Pediatric Palliative Oncology Program Planning and Development.

As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life. Families developed Eight Priorities, shared within, to improve care for children with a poor chance of survival based on their experience of losing a child to cancer. In this paper, we delineate the top eight PPC needs from a parent perspective to offer multi-layered, individually tailored resources for patients and families. One of these Eight Priorities noted that bereavement care for the remaining family members is vital for healing after the death of a child to promote meaning making and resilience in bereaved families. Here, we outline the creation of a bereaved parent-designed bereavement support program as one example of how we have partnered with parents to fulfill their Eight Priorities for quality care.

Never Enough Time: Mixed Methods Study Identifies Drivers of Temporal Demand That Contribute to Burnout Among Physicians Who Care for Pediatric Hematology-Oncology Patients.

PURPOSE: Burnout is a syndrome of emotional exhaustion, depersonalization, and reduced personal accomplishment because of chronic occupational stress. Approximately one third of pediatric hematology-oncology physicians experience burnout. The goal of this mixed methods study was to determine the prevalence and drivers of burnout among physicians caring for pediatric hematology-oncology patients at our institution. MATERIALS AND METHODS: This mixed methods, cross-sectional study was conducted at a large academic cancer center. Validated survey instruments were used to measure burnout, job demands, experience with patient safety events, and workplace culture. Quantitative data informed development of a semistructured interview guide, and physicians were randomly selected to participate in individual interviews. Interviews were transcribed and analyzed via content analysis based on a priori codes. RESULTS: The survey was distributed to 132 physicians, and 53 complete responses were received (response rate 40%). Of the 53 respondents, 15 (28%) met criteria for burnout. Experiencing burnout was associated with increased temporal demand. Twenty-six interviews were conducted. Qualitative themes revealed that frequent meetings, insufficient support staff, and workflow interruptions were key drivers of temporal demand and that temporal demand contributed to burnout through emotional exhaustion and reduced personal accomplishment. CONCLUSION: Nearly one-third of participating physicians met criteria for burnout, and burnout was associated with increased temporal demand. Qualitative interviews identified specific drivers of temporal demand and burnout, which can be targeted for intervention. This methodology can be easily adapted for broad use and may represent an effective strategy for identifying and mitigating institution-specific drivers of burnout.

The Impact of Pediatric Palliative Care Involvement in the Care of Critically Ill Patients without Complex Chronic Conditions.

Background: The impact of pediatric palliative care (PPC) is well established for children with chronic complex diseases. However, PPC likely also benefits previously healthy children with acute life-threatening conditions. Objective: To determine the incidence and impact of PPC for previously healthy patients who died in a pediatric hospital. Design: Retrospective chart review of all pediatric deaths over four years. Setting/Subjects: Patients were 0 to 25 years old, died during an inpatient stay at an academic pediatric hospital ≥48 hours after admission, and had no complex chronic conditions (CCCs) before admission. Measurements: One hundred sixty-seven patients met the eligibility criteria. Most died in intensive care settings (n = 149, 89%), and few (n = 34, 20%) received PPC consultations or services. Results: Patients who received PPC services were more likely to receive a multidisciplinary care conference than did patients without PPC support (70.5% vs. 39.9%; p = 0.001), which also occurred earlier for patients who received PPC services (seven days vs. two days before death; p = 0.04). Most patients had documented end-of-life planning in their medical records; however, this occurred earlier for patients who received PPC consultation (9.5 days before death) than for those who did not (two days before death; p < 0.0001). Patients receiving PPC support (67.7%) were also more likely to have a do-not-resuscitate/intubate order before death than those who did not (39.9%; p = 0.004). Conclusions: Pediatric patients without known CCCs who subsequently die as inpatients benefit from PPC in terms of goals of care discussions and documentation of end-of-life care preferences.

Statewide Treatment Center Referral Patterns for Adolescent and Young Adult Patients with Cancer in Utah.

Cancer therapy is selected by individual oncology providers. For adolescent and young adults (AYAs), the type of provider, adult or pediatric, and medical facility type, non- or academic, influence regimens offered. We evaluated the proportions of 15-29-year-old cancer patients in Utah seen at pediatric and adult academic centers between 1994 and 2013 and examined factors that influence treatment location. Of all AYA patients, 31.6% were treated in academic centers and those with sarcomas, central nervous system tumors, and leukemias were more likely to be treated at academic centers. Further determinants of AYA healthcare access and cooperation between adult and pediatric providers are needed.