Children's Oncology Group KidsCare smartphone application for parents of children with cancer.

BACKGROUND: Parents of children with cancer must learn and retain crucial information necessary to provide safe care for their child. Smartphone applications (apps) provide a significant opportunity to meet the informational needs of these parents. We aimed to develop, refine, and evaluate a smartphone app, informed by the Children's Oncology Group (COG) expert consensus recommendations, to support the informational needs of parents of children with cancer. PROCEDURE: We employed a user-centered iterative mixed-methods approach in two phases (prototype development/refinement and pilot testing). We engaged parents and clinicians in evaluating the app via qualitative interviews and standardized tools that measured app quality (Mobile Application Rating Scale [MARS]), usability (System Usability Scale [SUS]), and acceptability (System Acceptability Scale [SAS]). We evaluated early usage patterns after public release. RESULTS: Thirty-two parents and 17 clinicians participated. Mean (± standard deviation [SD]) scores for app quality, usability, and acceptability were: MARS: 4.5 ± 0.7 on a 5-point scale; SUS: 86.7 ± 23.8 on a 100-point scale; and SAS: superior (61%); similar (28%); inferior (11%) to written materials. Qualitative findings largely confirmed the quantitative data. Downloads of the app during the first year following public release have exceeded 5000. CONCLUSIONS: The COG KidsCare app prototype was found to be of high quality and received high usability and acceptability ratings. Further testing is needed to determine app effectiveness in improving parental knowledge regarding care of children with cancer.

A Structured Discharge Education Intervention for Parents of Newly Diagnosed Pediatric Oncology Patients.

Background: Parents of children newly diagnosed with cancer require specialized knowledge and skills in order to safely care for their children at home. The Children's Oncology Group (COG) developed expert consensus recommendations to guide new diagnosis education; however, these recommendations have not been empirically tested. Methods: We used a sequential two-cohort study design to test a nurse-led Structured Discharge Teaching Intervention (SDTI) that operationalizes the COG expert recommendations in the setting of a tertiary children's hospital. Outcomes included parent Readiness for Hospital Discharge Scale (RHDS); Quality of Discharge Teaching Scale (QDTS); Post-Discharge Coping Difficulty (PDCD); Nurse Satisfaction; and post-discharge unplanned healthcare utilization. Results: The process for discharge education changed significantly before and after implementation of the SDTI, with significantly fewer instances of one-day discharge teaching, and higher involvement of staff nurses in teaching. Overall, parental RHDS, QDTS, and PDCD scores were similar in the unintervened and intervened cohorts. Almost 60% of patients had unplanned healthcare encounters during the first 30 days following their initial hospital discharge. Overall nurse satisfaction with the quality and process of discharge education significantly increased post-intervention. Discussion: Although the structure for and process of delivering discharge education changed significantly with implementation of the SDTI, parent RHDS and QDTS scores remained uniformly high and PDCD scores and non-preventable unplanned healthcare utilization remained similar, while nurse satisfaction with the quality and process of discharge education significantly improved, suggesting that further testing of the SDTI across diverse pediatric oncology settings is warranted.

The influence of perceived racial bias and health-related stigma on quality of life among children with sickle cell disease.

Objectives: Individuals with sickle cell disease (SCD) experience significant health problems that may result in unpredictable pain episodes and frequent healthcare utilization. Disparities in clinical care may contribute to health-related stigma and racial bias for this majority African-American/Black population. There is less known about the influence of health-related stigma and racial bias on the health-related quality of life (HRQOL) of children with SCD. In the present study, we assessed these relationships and identified differences across demographic factors (i.e. age, gender).Design: Data was collected from African American children with SCD aged 8-16 years (57% male, 63% HbSS). Children completed the Childhood Stigma Scale (adapted for SCD), the Child Perceptions of Racism in Children and Youth scale, and the Pediatric Quality of Life Inventory Sickle Cell Disease Module. Caregivers provided demographic information.Results: In the first regression model, health-related stigma (p = .007) predicted HRQOL, but neither age nor gender were significant predictors. In the second regression model, age (p = .03) predicted HRQOL, but neither gender nor racial bias were significant predictors. Of interest, there was a significant interaction between age, gender, and racial bias (p = .02). Specifically, older girls who reported high levels of perceived racial bias had poorer HRQOL.Conclusions: Our study highlights the need for increased awareness about the effects of health-related stigma and racial bias on HRQOL for children with SCD, particularly for older girls who endorse racial bias. Our findings will guide future stigma and bias reduction interventions that may meet the needs of older girls with SCD.

Oncolytic HSV-1 G207 Immunovirotherapy for Pediatric High-Grade Gliomas.

BACKGROUND: Outcomes in children and adolescents with recurrent or progressive high-grade glioma are poor, with a historical median overall survival of 5.6 months. Pediatric high-grade gliomas are largely immunologically silent or "cold," with few tumor-infiltrating lymphocytes. Preclinically, pediatric brain tumors are highly sensitive to oncolytic virotherapy with genetically engineered herpes simplex virus type 1 (HSV-1) G207, which lacks genes essential for replication in normal brain tissue. METHODS: We conducted a phase 1 trial of G207, which used a 3+3 design with four dose cohorts of children and adolescents with biopsy-confirmed recurrent or progressive supratentorial brain tumors. Patients underwent stereotactic placement of up to four intratumoral catheters. The following day, they received G207 (107 or 108 plaque-forming units) by controlled-rate infusion over a period of 6 hours. Cohorts 3 and 4 received radiation (5 Gy) to the gross tumor volume within 24 hours after G207 administration. Viral shedding from saliva, conjunctiva, and blood was assessed by culture and polymerase-chain-reaction assay. Matched pre- and post-treatment tissue samples were examined for tumor-infiltrating lymphocytes by immunohistologic analysis. RESULTS: Twelve patients 7 to 18 years of age with high-grade glioma received G207. No dose-limiting toxic effects or serious adverse events were attributed to G207 by the investigators. Twenty grade 1 adverse events were possibly related to G207. No virus shedding was detected. Radiographic, neuropathological, or clinical responses were seen in 11 patients. The median overall survival was 12.2 months (95% confidence interval, 8.0 to 16.4); as of June 5, 2020, a total of 4 of 11 patients were still alive 18 months after G207 treatment. G207 markedly increased the number of tumor-infiltrating lymphocytes. CONCLUSIONS: Intratumoral G207 alone and with radiation had an acceptable adverse-event profile with evidence of responses in patients with recurrent or progressive pediatric high-grade glioma. G207 converted immunologically "cold" tumors to "hot." (Supported by the Food and Drug Administration and others; ClinicalTrials.gov number, NCT02457845.).

Pain-Related Injustice Appraisals in Youth with Sickle Cell Disease: A Preliminary Investigation.

OBJECTIVES: Sickle cell disease (SCD) is a genetic disorder that affects approximately 100,000 Americans, the majority of whom are African American. SCD-related pain often has deleterious effects on functioning and quality of life. The inherited nature of SCD, SCD-related stigma, and serious physical and functional impact of SCD-related pain create a situation ripe for individuals to appraise their SCD-related pain as unfair or unjust. The aim of this preliminary investigation is to explore the extent to which pediatric patients with SCD appraise their pain as unjust and how these appraisals relate to functioning. METHODS: Participants were youth with SCD (N = 30, mean age = 11.3, 57% boys) who attended a hematology clinic visit. Patients were invited to complete paper-based questionnaires assessing pain-related injustice appraisals, pain catastrophizing, pain and hurt, functional disability, depression, anxiety, and peer relationships. RESULTS: Results of hierarchical regressions indicate that pain-related injustice significantly predicted functional disability, depression, and anxiety after controlling for patient pain and catastrophizing. CONCLUSIONS: These findings suggest that pain-related injustice appraisals are an important contributor to the pain experience of youth with SCD. Early identification and remediation of pain-related injustice appraisals could have long-term functional benefits for youth with SCD.

Caregiver Religious Coping and Posttraumatic Responses in Pediatric Hematopoietic Stem Cell Transplant.

OBJECTIVE: Caregivers often experience their child's hematopoietic stem cell transplant (HCT) treatment as traumatic. Although many caregivers develop posttraumatic stress symptoms (PTSS) in response to supporting their child through HCT, other caregivers demonstrate posttraumatic growth (PTG). Religious coping may contribute to these different adjustment trajectories; however, more information is needed to clarify the unique associations of positive versus negative religious coping on caregiver PTSS and PTG in the context of pediatric HCT. This study aimed to examine the relationships between negative and positive religious coping on caregivers PTSS and PTG while controlling for caregiver sex, self-efficacy, and social support. METHODS: Caregivers (N = 140) of youth admitted to the hospital for their first HCT were asked to complete self-report measures of their use of positive and negative religious coping, PTSS, PTG, social support, and self-efficacy. Two hierarchical linear regressions were conducted to test hypotheses. RESULTS: Greater positive religious coping, but not negative religious coping, was associated with caregivers reporting more PTG in response to pediatric HCT. More negative religious coping, but not positive religious coping, was associated with caregivers experiencing greater PTSS. CONCLUSIONS: Engaging in positive religious coping appears to promote better caregiver adjustment to pediatric HCT, whereas negative religious coping may increase caregiver risk for developing PTSS. Screening caregivers' religious beliefs, including the type of religious coping they employ, could inform providers regarding the best approach to supporting caregivers towards a growth trajectory and mitigate PTSS.

The impact of pediatric hematopoietic stem cell transplant timing and psychosocial factors on family and caregiver adjustment.

BACKGROUND: The impact of pediatric hematopoietic stem cell transplant (HCT) on family functioning varies, but little is known about how the timing of HCT in children's treatment course contributes to this variability. This study examines how preexisting child, sibling, and family problems, the length of time between diagnosis to HCT, and children's age at HCT are associated with family and caregiver functioning. PROCEDURE: Caregivers (n = 140) of children (≤18 years old) scheduled to undergo their first HCT completed the Psychological Assessment Tool-HCT and the Impact on Family Scale. Treatment information was extracted from electronic medical records. A bootstrapped multivariate path analysis was used to test the hypotheses. RESULTS: More preexisting family problems related to greater caregiver perceived negative impact of their child's HCT across family and caregiver functioning domains. Less time between diagnosis and HCT was associated with greater caregiver personal strain, particularly for those with younger children undergoing HCT. Younger child age at HCT was also associated with a larger negative impact on family social functioning. CONCLUSIONS: Families with preexisting problems are the most at-risk for experiencing negative impacts related to their child's HCT. The timing of a child's HCT within their treatment course and the child's age during HCT may impact families' social functioning and caregiver adjustment. Screening families for preexisting family problems, particularly for families with young children or who are abruptly learning of their child's need for an HCT, may assist providers in identifying families who would benefit from earlier or more intensive psychosocial support.

Outpatient pain clinic and intranasal fentanyl to improve sickle cell disease outcomes.

BACKGROUND: Acute pain events are a leading complication for sickle cell patients. In an attempt to improve pain outcomes, we developed an outpatient pain clinic, and included intranasal fentanyl in the opioid emergency department (ED) pain order set. We evaluated admission rates and opioid administration for patients that attended both the outpatient pain clinic and ED within a 3-month period. METHODS: We recorded the admission rate, IV morphine equivalents, and time from triage for each opioid order and administration from both an outpatient pain clinic and ED visit within a 3-month period for an individual pediatric patient with sickle cell disease. RESULTS: Thirty patients received acute pain management in both settings. We identified a significant reduction in hospital admission when patients received care in the pain clinic as compared to the ED (17% vs 43%, P = .02). Additionally, outpatient pain clinic patients received significantly less IV morphine equivalents than patients received in the ED (5.6 vs 10.6 IV morphine equivalents, P < .0001). In the ED, intranasal fentanyl was administered in a significantly shorter time than patients ordered intravenous opioid (43 vs 75 min, P = .02). The mean time to receiving an opioid in the outpatient pain clinic was 57 min. CONCLUSION: The use of an outpatient pain clinic can reduce admission rates as compared to the ED. The use of intranasal fentanyl reduced the time to first opioid administration in the ED. Patient-centered research or quality improvement projects should continue to focus on novel approaches to acute pain event management.

Design and Rationale for First-in-Human Phase 1 Immunovirotherapy Clinical Trial of Oncolytic HSV G207 to Treat Malignant Pediatric Cerebellar Brain Tumors.

Brain tumors represent the most common pediatric solid neoplasms and leading cause of childhood cancer-related morbidity and mortality. Although most adult brain tumors are supratentorial and arise in the cerebrum, the majority of pediatric brain tumors are infratentorial and arise in the posterior fossa, specifically the cerebellum. Outcomes from malignant cerebellar tumors are unacceptable despite aggressive treatments (surgery, radiation, and/or chemotherapy) that are harmful to the developing brain. Novel treatments/approaches such as oncolytic virotherapy are urgently needed. Preclinical and prior clinical studies suggest that genetically engineered oncolytic herpes simplex virus (HSV-1) G207 can safely target cerebellar malignancies and has potential to induce an antitumor immune response at local and distant sites of disease, including spinal metastases and leptomeningeal disease. Herein, we outline the rationale, design, and significance of a first-in-human immunotherapy Phase 1 clinical trial targeting recurrent cerebellar malignancies with HSV G207 combined with a single low-dose of radiation (5 Gy), designed to enhance virus replication and innate and adaptive immune responses. We discuss the unique challenges of inoculating virus through intratumoral catheters into cerebellar tumors. The trial utilizes a single arm open-label traditional 3 + 3 design with four dose cohorts. The primary objective is to assess safety and tolerability of G207 with radiation in recurrent/progressive malignant pediatric cerebellar tumors. After biopsy to prove recurrence/progression, one to four intratumoral catheters will be placed followed by a controlled-rate infusion of G207 for 6 h followed by the removal of catheters at the bedside. Radiation will be given within 24 h of virus inoculation. Patients will be monitored closely for toxicity and virus shedding. Efficacy will be assessed by measuring radiographic response, performance score, progression-free and overall survival, and quality of life. The data obtained will be invaluable in our efforts to produce more effective and less toxic therapies for children with high-grade brain tumors.

Healing the Hearts of Bereaved Parents: Impact of Legacy Artwork on Grief in Pediatric Oncology.

CONTEXT: Approximately 12% of children with cancer will not survive, representing a devastating loss for parents. Strategies to improve parental coping and grief have been understudied. Although legacy-making is frequently offered as standard care to children with terminal illness and their families, these interventions have received little empirical attention. OBJECTIVES: This study qualitatively explores the legacy-making and grief experiences of bereaved parents who participated in legacy artwork with their child before his or her death from cancer. METHODS: Twelve bereaved parents and 12 healthcare providers participated in individual semistructured interviews guided by the Dual Process Model of Grief and Continuing Bonds theory. Qualitative data were analyzed via conventional content analysis. RESULTS: Five themes emerged. Legacy artwork allows for family bonding and opens communication regarding the child's impending death; provides opportunities for parents to engage in life review and meaning-making; is often displayed in the parents' home after the child's death, and parents take comfort in using these projects to continue their bond with their deceased child; can ameliorate parents' grief after their child's death; and may reduce healthcare providers' compassion fatigue and provide them an outlet for coping with their patients' deaths. CONCLUSION: Participating in legacy artwork may result in self-reported positive outcomes for bereaved parents before and after their child's death, including family bonding, enhanced communication, meaning-making, and improvements in grief. As a result of these benefits, children's hospitals may consider offering legacy artwork for children with cancer and their families.

Caregiver-provider communication after resection of pediatric brain tumors.

OBJECTIVE: Because caregivers are a crucial part of a child's medical care, it is important to understand how to best communicate with them during hospitalization. Qualitative research can elucidate the best strategies for effective parent-provider communication. This study aims to reveal communication styles of neurosurgery team members, and to identify areas for improvement in the future. METHODS: Caregivers of children with a newly diagnosed brain tumor requiring neurosurgery were enrolled during their child's hospitalization. During routine follow-up clinic visits within 3 months after diagnosis and tumor resection, caregivers participated in a semistructured interview, which assessed the quality of communication with the neurosurgery and oncology teams during hospitalization. Interviews were audio-recorded, transcribed, and coded for common themes until thematic saturation was reached. RESULTS: During caregiver interviews (N = 22), several domains were discussed including communicating the diagnosis to the patient and siblings, to the rest of the family/support network, and with the neurosurgery team. Regarding parent-neurosurgeon communication, 82% of caregivers identified at least one positive aspect and 55% identified at least one negative aspect of communication. Caregivers who provided positive feedback appreciated that their neurosurgeon was thorough (73%), direct (27%), or compassionate (14%). They also valued when providers would speak "on my level" (18%) and would speak directly to the patient (27%). In terms of negative feedback, caregivers identified miscommunications (32%), discussing the diagnosis in front of the child before feeling prepared to do so (14%), and a lack of clarity about expectations, medications, or treatment (32%). CONCLUSIONS: These data provide specific ways in which neurosurgery providers have communicated effectively with caregivers and identify areas for improvement. Results have been used to develop a navigator-led intervention geared toward improving parent-provider communication during hospitalization for resection of a brain tumor.

Legacy Artwork in Pediatric Oncology: The Impact on Bereaved Caregivers' Psychological Functioning and Grief.

Background: Legacy-making (i.e., a way for patients with terminal illness to create or do something for others as a means of remembrance) is rising in popularity in palliative medicine, although only one study has examined its impact in a pediatric population. Objective: In response to the gaps in literature, this study (1) examines the impact of legacy artwork on bereaved caregivers' psychological functioning and grief and (2) compares caregivers' perceptions of support provided by the hospital throughout their child's cancer journey between the intervention and control groups. Methods: Forty-four caregivers whose children died of cancer completed a demographic questionnaire specifically created for this study, the Brief Symptom Inventory-18, and the Prolonged Grief Disorder-13. They also answered questions regarding supportive services provided to them toward the end of the child's life, at the time of death, and after the child's death. Those caregivers who endorsed participating in legacy artwork were identified as the intervention group, whereas those who did not were classified as the control group. Results: There were no significant differences in psychological functioning among caregivers who participated in legacy artwork versus those who did not participate. However, caregivers who created legacy artwork with their child reported significantly less symptoms of prolonged grief and a greater perception of support from health care providers compared with caregivers who did not engage in this activity. Conclusion: Although preliminary, these findings suggest that legacy artwork may have the potential to improve grief and overall satisfaction of support from the hospital in bereaved caregivers.

Coping strategies used by caregivers of children with newly diagnosed brain tumors.

In BriefThe authors interviewed families whose children had recently been hospitalized with a new brain tumor. From these interviews, they identified parents' coping strategies for handling the stress of having a child with a newly diagnosed tumor. Some strategies are considered "adaptive" and help parents deal with the stress better. Others are "maladaptive," leading to worse outcomes. Parents of children with brain tumors are at risk for maladaptive coping. Efforts to teach parents how to cope effectively with the stress of a sick child have the potential to improve outcomes.

Distress and psychosocial risk in families with newly diagnosed pediatric brain tumors.

In BriefThe investigators administered surveys to parents whose children were hospitalized with a brain tumor. They learned that parents in this situation are highly distressed, and that families have multiple sources of stress when a child is hospitalized. The investigators used this information to improve the psychosocial supportive care provided at their hospital. In general, these findings have the potential to improve the patient's and family's experience with a new brain tumor by guiding teams to address family needs as well as the child's acute medical needs.

Development of a Technology-Supported, Lay Peer-to-Peer Family Engagement Consultation Service in a Pediatric Hospital.

Patient and caregiver engagement in making decisions and taking actions to promote health are critically important for improving outcomes, enhancing healthcare experience satisfaction, and reducing costs. Patients and caregivers have a wealth of expertise in illness self-management and can aid others in attaining high levels of activation through peer-to-peer social support. We describe the development of a technology-supported, family engagement consultation service at Children's of Alabama that integrates parent volunteers as front-line, peer-to-peer support consultants with a multidisciplinary team of informatics professionals in the pediatric hospital setting. This service was adapted from an existing engagement consultation service with a traditional medical consultation model at Vanderbilt Children's Hospital. The unique features of the new model are articulated, along with plans for a shared knowledge database of consumer health resources to meet needs. The layperson peer-to-peer design is highly innovative and relevant as healthcare transitions towards increasingly participatory and personalized medicine.

Rationale and Design of a Phase 1 Clinical Trial to Evaluate HSV G207 Alone or with a Single Radiation Dose in Children with Progressive or Recurrent Malignant Supratentorial Brain Tumors.

Primary central nervous system tumors are the most common solid neoplasm of childhood and the leading cause of cancer-related death in pediatric patients. Survival rates for children with malignant supratentorial brain tumors are poor despite aggressive treatment with combinations of surgery, radiation, and chemotherapy, and survivors often suffer from damaging lifelong sequelae from current therapies. Novel innovative treatments are greatly needed. One promising new approach is the use of a genetically engineered, conditionally replicating herpes simplex virus (HSV) that has shown tumor-specific tropism and potential efficacy in the treatment of malignant brain tumors. G207 is a genetically engineered HSV-1 lacking genes essential for replication in normal brain cells. Safety has been established in preclinical investigations involving intracranial inoculation in the highly HSV-sensitive owl monkey (Aotus nancymai), and in three adult phase 1 trials in recurrent/progressive high-grade gliomas. No dose-limiting toxicities were seen in the adult studies and a maximum tolerated dose was not reached. Approximately half of the 35 treated adults had radiographic or neuropathologic evidence of response at a minimum of one time point. Preclinical studies in pediatric brain tumor models indicate that a variety of pediatric tumor types are highly sensitive to killing by G207. This clinical protocol outlines a first in human children study of intratumoral inoculation of an oncolytic virus via catheters placed directly into recurrent or progressive supratentorial malignant tumors.

Demographic, medical, and psychosocial predictors of benefit finding among caregivers of childhood cancer survivors.

BACKGROUND: There is a growing body of literature examining benefit finding, or finding positive outcomes in the face of adversity, among both adults and children with chronic conditions, and to some degree among caregivers. This study examined demographic, medical, and psychosocial predictors of greater benefit finding specifically among caregivers of childhood cancer survivors. METHODS: Caregivers of children who had completed treatment for cancer (n = 83) completed measures assessing child and caregiver demographic information and caregiver coping (active, acceptance, emotion-focused, and avoidant), optimism, social support, caregiving burden, posttraumatic stress symptoms, illness impact (how much caregivers feel impacted by their child's illness in various domains), and benefit finding (positive outcomes). RESULT: Regression analyses indicated that positive spiritual coping, optimism, and illness impact uniquely predicted overall benefit finding for caregivers of childhood cancer survivors. CONCLUSION: Results point to adaptive tendencies that are associated with finding benefits when caring for a childhood cancer survivor and suggest potential avenues for intervention among this population. Copyright © 2015 John Wiley & Sons, Ltd.

Inferior outcomes for black children with high risk acute lymphoblastic leukemia and the impact of socioeconomic variables.

BACKGROUND: While significant improvements have been made for children with acute lymphoblastic leukemia (ALL) in the United States over the past 20 years, black patients continue to have inferior outcomes. The full impact of socioeconomic variables on outcomes in this minority population is not entirely understood. PROCEDURE: Disease characteristics, demographic, and socioeconomic status (SES) variables were collected on black (n = 44) and white (n = 178) patients diagnosed at the University of Alabama at Birmingham. Cox proportional hazard regression was used to evaluate the influence of SES and insurance status on survival. RESULTS: As a cohort, 5-year overall survival (OS) was 87% (82-91%), with a median follow-up of 99 months. In univariable analysis, black race was not significantly associated with a higher risk of death or relapse and death. White and black patients with standard-risk leukemia had excellent outcomes, with 97% (91-99%) and 96% (75-99%) 5-year OS, respectively. In contrast, for high-risk disease, white patients had a statistically significant improved 5-year OS rates compared with black patients (79% [68-87%] vs. 52% [28-72%]). Black children were more likely to have public insurance, and, in multivariable analysis, this was associated with a trend toward an improved outcome. Black patients also had poorer census tract-level SES parameters, but these variables were not associated with survival. CONCLUSION: Our study demonstrates significantly inferior outcomes for black children with high-risk leukemia. These outcome disparities were not related to SES variables, including poverty or private insurance coverage, suggesting the involvement of other factors and highlighting the need for a prospective investigative analysis.

Benefit Finding and Quality of Life in Caregivers of Childhood Cancer Survivors: The Moderating Roles of Demographic and Psychosocial Factors.

BACKGROUND: Benefit finding, or finding positive outcomes in the face of adversity, may play a role in predicting quality of life (QoL) among caregivers, but mixed results suggest that other factors may moderate this relationship. OBJECTIVE: This study examined demographic and psychosocial moderators of the association between benefit finding and QoL among caregivers of childhood cancer survivors. METHODS: Caregivers of childhood cancer survivors (n = 83) completed measures of benefit finding, QoL, coping, optimism, social support, caregiving demand, posttraumatic stress, and demographics. RESULTS: The relationship between benefit finding and QoL was moderated by caregiver age, marital status, socioeconomic status, geographic location, acceptance and emotion-focused coping, optimism, caregiving demand, and posttraumatic stress. Benefit finding was more strongly related to QoL among caregivers with fewer demographic/psychosocial resources. CONCLUSIONS: Results suggest that finding benefits in the cancer experience may have a greater positive impact for caregivers with relatively fewer demographic and psychosocial resources and may have less of an impact for caregivers with relatively greater resources. Findings further point to the complex nature of QoL among caregivers of childhood cancer survivors. IMPLICATIONS FOR PRACTICE: Results may aid clinicians in identifying caregivers at particular risk for low QoL. They may be counseled to find benefits in their experience or provided with resources to strengthen other factors that impact QoL.

Psychosocial Assessment as a Standard of Care in Pediatric Cancer.

This paper presents the evidence for a standard of care for psychosocial assessment in pediatric cancer. An interdisciplinary group of investigators utilized EBSCO, PubMed, PsycINFO, Ovid, and Google Scholar search databases, focusing on five areas: youth/family psychosocial adjustment, family resources, family/social support, previous history/premorbid functioning, and family structure/function. Descriptive quantitative studies, systematic reviews, and meta-analyses (n = 149) were reviewed and evaluated using grading of recommendations, assessment development, and evaluation (GRADE) criteria. There is high quality evidence to support a strong recommendation for multifaceted, systematic assessments of psychosocial health care needs of youth with cancer and their families as a standard of care in pediatric oncology.