Children's Oncology Group's 2023 blueprint for research: Behavioral science.

As survival rates for childhood cancer have improved, there has been increasing focus on identifying and addressing adverse impacts of cancer and its treatment on children and their families during treatment and into survivorship. The Behavioral Science Committee (BSC) of the Children's Oncology Group (COG), comprised of psychologists, neuropsychologists, social workers, nurses, physicians, and clinical research associates, aims to improve the lives of children with cancer and their families through research and dissemination of empirically supported knowledge. Key achievements of the BSC include enhanced interprofessional collaboration through integration of liaisons into other key committees within COG, successful measurement of critical neurocognitive outcomes through standardized neurocognitive assessment strategies, contributions to evidence-based guidelines, and optimization of patient-reported outcome measurement. The collection of neurocognitive and behavioral data continues to be an essential function of the BSC, in the context of therapeutic trials that are modifying treatments to maximize event-free survival, minimize adverse outcomes, and optimize quality of life. In addition, through hypothesis-driven research and multidisciplinary collaborations, the BSC will also begin to prioritize initiatives to expand the systematic collection of predictive factors (e.g., social determinants of health) and psychosocial outcomes, with overarching goals of addressing health inequities in cancer care and outcomes, and promoting evidence-based interventions to improve outcomes for all children, adolescents, and young adults with cancer.

Pediatric Hematopoietic Cell Transplantation: A Longitudinal Assessment of Health-Related Quality of Life of Pediatric Donors.

Pediatric donors may be at increased risk of psychological and social challenges following hematopoietic cell transplantation (HCT). Through a retrospective chart review, we evaluated the health-related quality of life (HRQL) of pediatric donors over time and examined facilitators and barriers to implementing a longitudinal psychosocial assessment. Fifty-one pediatric donors (M = 10.7 years, SD = 3.7) completed an HRQL questionnaire across six time points (T1 to T6) from prior to donation to 2 years after. Change in mean scores was assessed using a linear mixed-effect model for repeated measures design. Facilitators and barriers to implementation were examined. HRQL of pediatric donors improved between T1 and T6 with significant change in physical, emotional, and overall functioning. Facilitators to retention included the support of a clinical coordinator. Barriers to implementation included the absence of infrastructure to maintain contact with pediatric and their families. HRQL of pediatric donors of HCT improved steadily over time. Pattern of results suggests a need to further explore factors that contribute to change across time. Development of a longitudinal standardized assessment protocol that can be prospectively and feasibly implemented is integral to supporting the well-being of this group.

Dissemination of an evidence-based behavioral intervention to alleviate distress in caregivers of children recently diagnosed with cancer: Bright IDEAS.

BACKGROUND: Four multisite randomized clinical trials of > 1400 caregivers of children newly diagnosed with cancer showed that the Bright IDEAS (BI) paradigm of problem-solving skills training is an acceptable and efficacious approach to alleviating the high levels of distress they experience. To facilitate providing evidence-based caregiver support as recommended in the pediatric oncology standards of care, the project described here was designed to disseminate BI to 200 psychosocial professionals. PROCEDURE: We partnered with the Children's Oncology Group (COG), Association of Pediatric Oncology Social Workers (APOSW), Association of Pediatric Hematology/Oncology Nurses (APHON), and special interest group in pediatric hematology/oncology of the Society for Pediatric Psychology (SPP). Membership surveys revealed substantial enthusiasm for training in BI. We structured training to include review of the evidence base for BI, role plays, and strategies for implementation at individual sites. Four conference calls designed to enhance implementation were held one, two, three, and five months after training. RESULTS: Ten 1.5-day workshops were held in conjunction with annual meetings of COG, APOSW, APHON, and SPP. A total of 209 psychosocial clinicians from 134 sites were trained. Evaluations were highly favorable. Trainees had provided BI to 545 individuals as of the last conference call. CONCLUSIONS: Initial dissemination goals were met. BI is now available at numerous pediatric oncology centers, but it has not become part of routine care. Future work focused on implementation might consider top-down approaches that include direct communication with pediatric oncologists and hospital leaders about the benefits of incorporating this evidence-based intervention systemically.

The impact of COVID-19 on the professional and personal lives of pediatric oncology social workers.

PURPOSE: Describe the impact of the COVID-19 pandemic on the work structure, daily care provided, personal lives, and practice models for pediatric oncology social workers (POSW). RESEARCH APPROACH: Cross-sectional online survey on APOSW professional listserv from 10/5/2020 to 11/20/2020. SAMPLE: 101 surveys were completed by POSW from 31 states and the District of Columbia. METHODS: Data were summarized descriptively and with semantic content analyses. FINDINGS: Surveys were completed by social workers from diverse work settings. Seventy-five percent of social workers were deemed "essential," and 45% reported working primarily from home. Most (56%) adopted a form of telehealth for patient care, although 71% did not receive telehealth training and 87% perceived lesser quality of care with telehealth. Nearly 80% of respondents reported not being able to provide optimum psychosocial care. Notable stressors on social work practice included worry about exposure to COVID-19, limited resources, lack of contact with and increased emotional needs of patients and families, managing patient and family concerns about COVID-19, and isolation from colleagues. Inequity and social justice issues were identified. Despite challenges, over 60% of POSW endorsed positive changes to their work life resulting from the pandemic. CONCLUSIONS/INTERPRETATION: As the COVID-19 pandemic persists, POSW have adapted to a changing work environment, different modes of service provision, and stark health inequities to meet the needs of patients and families in a crisis. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: COVID-19 vastly impacted the personal and professional lives of POSW, warranting attentiveness to lessons learned and future directions.

Enduring Cell Lines: Parents' Experiences of Postmortem Tumor Banking in Childhood Cancer.

While cure rates in pediatric oncology have improved over the past 30 years, childhood cancer remains the second leading cause of death in children aged 1 to 14. Developing therapies often require using cancerous tissues, which may come from deceased donors. Tumor banks collect, store, and distribute these donated samples. While tumor banking is more common, factors that contribute to parents' decision and the impact of it on the family are not well understood. The purpose of this hermeneutic study was to understand the meaning and impact of tumor banking for parents of children who have died from cancer. Findings suggest that parents donating their child's tumors unexpectedly found a sense of meaning in their loss. They also found a legacy of their child's life; the living cells in some ways assisted the parents with grief. Aspects of this sensitive conversation and decision are discussed from the perspective of the parents' experiences.

Tools to guide the identification and implementation of care consistent with the psychosocial Standards of care.

Fifteen evidence-based Standards of psychosocial care for children with cancer and their families have been established. Despite the importance of implementing the standards, significant barriers and challenges exist. In order to overcome barriers to implementation and assess the level of current psychosocial care, a model of evaluating psychosocial care (Matrix) and a set of pathways toward achieving optimal care (Guidelines) were developed. This special report describes the process involved in the creation of standard templates and development of content based on rigorous reviews from multidisciplinary psychosocial experts, focus groups, and multiple revisions based on further expert review. The resulting Matrix and Guidelines are included as Supplemental Information.

Screening for psychosocial distress in pediatric cancer patients: An examination of feasibility in a single institution.

Despite the availability of tools to assess psychosocial screening in pediatric oncology, little is known about the feasibility and acceptability of systematic screening. We aimed to assess the feasibility of implementing a tool, or set of tools, capable of screening for psychosocial distress in pediatric cancer patients across the cancer continuum (on treatment, off treatment). Psychometric criteria were also evaluated. Patients 8-18 years were recruited from a pediatric oncology program. Patients completed self-report measures of the Distress Thermometer (DT) and Pediatric Quality of Life Inventory (PedsQL). One parent of each patient completed three screening tools: DT (proxy-report); PedsQL (proxy-report), and the Psychosocial Assessment Tool adapted for the Canadian context (PATrev), as well as a measure of patient psychological functioning (Behavioral Assessment System for Children-2), and an assessment of screening tool acceptability. Recruitment rates and acceptability informed feasibility of implementation. Ninety-five patients (58 men) with a mean age of 11.47 participated in the study (on treatment, n = 43; off treatment, n = 52). Recruitment rates were on treatment: 56.6% and off treatment: 47.3%. Mean acceptability scores of tools ranged from 3.41 to 4.97 out of 7. Screening tools were comparable with respect to their psychometric properties. The DT took the least amount of time to complete, while the PATrev offered the most robust data with respect to psychometrics. Feasibility of screening for psychosocial distress with our tool was moderate and may be enhanced when administered by a known health-care provider. Future research exploring how to further enhance feasibility of implementation for pediatric cancer patients is warranted.

In good times and in bad: what strengthens or challenges a parental relationship during a child's cancer trajectory?

OBJECTIVES: To identify events during a child's cancer trajectory when parents perceived their marriage/partnership to be most strengthened and/or challenged. RESEARCH APPROACH: Using a cross-sectional qualitative design, participants completed a self-administered questionnaire addressing changes in their relationship during their child's cancer trajectory, including events perceived to strengthen/challenge their relationship, and recommendations for other parents. PARTICIPANTS: 192 parents of pediatric oncology patients across three institutions. Data were analyzed using qualitative content analysis. FINDINGS: Themes included relationship-specific, illness experience-related, and external supports/stressors that impacted the relationship. Dyadic strategies, empathic communication, and supportive behaviors strengthened the couple's relationship, whereas physical and emotional distance most commonly challenged the relationship. Recommendations to other parents included open communication, couple's connectedness, and use of external supports. INTERPRETATION: Offering psychosocial support and helping parents anticipate when their relationship can be strengthened/challenged can be an important part of ongoing care. Implications for psychosocial providers: Teaching communication and dyadic coping strategies can help parents manage stress and build cohesion.

Psychosocial standards of care for children with cancer and their families: A national survey of pediatric oncology social workers.

In 2015, an interdisciplinary group of psychosocial experts developed The Standards of Psychosocial Care for Children with Cancer and Their Families. This paper presents data from a national survey of pediatric oncology social workers and their experiences in delivering psychosocial care to children and families. In total, 107 social workers from 81 cancer institutions participated in a 25-item online survey that mirrored the 15 Standards for Psychosocial Care. Both closed and open-ended questions were included. Social work participants reported that psychosocial support is being provided at most cancer centers surveyed, primarily by social workers and child life specialists, addressing adaptation to the cancer diagnosis, treatment, and transitions into survivorship or end-of-life care and bereavement. While social workers reported offering comprehensive services throughout the cancer trajectory, many of the 2015 Standards are not being systematically implemented. Areas for improvement include funding for psychosocial support staff and programs, incorporation of standardized assessment measures, assessment for financial burden throughout treatment and beyond, consistent access to psychology and psychiatry, integrated care for parents and siblings, and more inclusion of palliative care services from time of diagnosis.

Late Effects Surveillance Recommendations among Survivors of Childhood Hematopoietic Cell Transplantation: A Children's Oncology Group Report.

Hematopoietic cell transplantation (HCT) is an important curative treatment for children with high-risk hematologic malignancies, solid tumors, and, increasingly, nonmalignant diseases. Given improvements in care, there are a growing number of long-term survivors of pediatric HCT. Compared with childhood cancer survivors who did not undergo transplantation, HCT survivors have a substantially increased burden of serious chronic conditions and impairments involving virtually every organ system and overall quality of life. This likely reflects the joint contributions of pretransplantation treatment exposures and organ dysfunction, the transplantation conditioning regimen, and any post-transplantation graft-versus-host disease (GVHD). In response, the Children's Oncology Group (COG) has created long-term follow-up guidelines (www.survivorshipguidelines.org) for survivors of childhood, adolescent, and young adult cancer, including those who were treated with HCT. Guideline task forces, consisting of HCT specialists, other pediatric oncologists, radiation oncologists, organ-specific subspecialists, nurses, social workers, other health care professionals, and patient advocates systematically reviewed the literature with regards to late effects after childhood cancer and HCT since 2002, with the most recent review completed in 2013. For the most recent review cycle, over 800 articles from the medical literature relevant to childhood cancer and HCT survivorship were reviewed, including 586 original research articles. Provided herein is an organ system-based overview that emphasizes the most relevant COG recommendations (with accompanying evidence grade) for the long-term follow-up care of childhood HCT survivors (regardless of current age) based on a rigorous review of the available evidence. These recommendations cover both autologous and allogeneic HCT survivors, those who underwent transplantation for nonmalignant diseases, and those with a history of chronic GVHD.

Assessment of Financial Burden as a Standard of Care in Pediatric Oncology.

Family financial hardship has emerged as a burden of pediatric cancer treatment with negative implications for family well-being. As part of an extensive project to create evidence-based standards for the psychosocial care of children with cancer, we performed a literature review of pediatric cancer-associated financial hardship utilizing six databases, and identified 24 publications for incorporation into this review. Financial hardship during childhood cancer was found to affect a significant proportion of the population and to negatively impact family well-being. Existing literature supports a strong recommendation for assessment of financial hardship as a component of comprehensive psychosocial care in pediatric oncology.

Communication, Documentation, and Training Standards in Pediatric Psychosocial Oncology.

As part of a larger effort to create standards for psychosocial care of children with cancer, we document consensus and evidence-based data on interprofessional communication, documentation, and training for professionals providing psycho-oncology services. Six databases were searched. Sixty-five articles and six guidelines and consensus-based documents were identified; 35 met inclusion criteria. Data support strong recommendations for standards of care in communication/collaboration, documentation of patient information, and training in pediatric psycho-oncology. These are areas where extensive research is unlikely to be conducted; however, professional expectations and qualifications may be further clarified and strengthened with time.

Themes reported by families as important when proceeding with pediatric hematopoietic stem cell transplantation.

BACKGROUND: Hematopoietic stem cell transplantation (HSCT) is an accepted treatment for pediatric malignant and non-malignant conditions. Agreeing to HSCT can be challenging for families. This study explored themes reported by family members as influencing their acceptance of HSCT as a necessary treatment intervention. PROCEDURE: In a four-site study, 107 individuals within 30 families pursuing HSCT for a pediatric malignancy, and 25 individuals within 6 families pursuing HSCT for a pediatric non-malignancy were interviewed pre-HSCT. Semantic content analysis was used in this secondary analysis to identify relevant themes. RESULTS: Fifty-eight parents (and surrogates) 19 patients, 16 donor siblings, and 39 non-donor siblings, half-siblings and cousins, participated. Thirteen themes were identified as influencing the acceptance of HSCT. The most frequently reported were: "recommendation by the child's physician," viewing HSCT as the "best chance for cure," and "desiring a more normal and better quality of life for the patient and family." Seven themes were reported by all categories of family members, though at different frequencies. Two themes ("HSCT being part of the upfront treatment plan": "hearing of HSCT success in others") were only reported by the malignancy group, and one theme ("worrying about disease progression and losing a window of HSCT opportunity") was only reported by the non-malignancy group. CONCLUSION: Parents, patients, and other family members can articulate multiple themes that influence their considerations of HSCT. Understanding these themes may guide discussions between families and healthcare teams.

Clinical trial recruitment of people who speak languages other than english: a children's oncology group report.

BACKGROUND: Persons who speak languages other than English (LOE) are underrepresented in clinical trials; this may be due in part to inadequate multilevel resources. We conducted a survey of institutions affiliated with the Children's Oncology Group (COG) to characterize current research recruitment practices and resources regarding translation and interpretation services. METHODS: In October 2022, a 20-item survey was distributed electronically to institutions affiliated with COG to assess consent practices and resources for recruiting participants who speak LOE to COG trials. Descriptive statistics were used to summarize responses; responses were compared by institution size, type, and respondent role. RESULTS: The survey was sent to a total of 230 institutions, and the response rate was 60% (n = 139). In total, 60% (n = 83) had access to short form consents. Full consent form translation was required at 50% of institutions, and 12% of Institutional Review Boards restricted use of centrally translated consent forms. Forty-six percent of institutions reported insufficient funding to support translation costs; 15% had access to no-cost translation services. Forty-four percent (n = 61) were required to use in-person interpreters for consent discussions; the most cited barrier to obtaining consent was lack of available in-person interpreters (56%). Forty-six percent (n = 69) reported that recruiting persons who speak LOE to clinical trials was somewhat or very difficult. CONCLUSIONS: Institutions affiliated with COG face resource-specific challenges that impede recruitment of participants who speak LOE in clinical trials. These findings indicate an urgent need to identify strategies aimed at reducing recruitment barriers to ensure equitable access to clinical trials.

Children's Oncology Group's 2013 blueprint for research: behavioral science.

Behavioral science has long played a central role in pediatric oncology clinical service and research. Early work focused on symptom relief related to side effects of chemotherapy and pain management related to invasive medical procedures. As survival rates improved, the focused has shifted to examination of the psychosocial impact, during and after treatment, of pediatric cancer and its treatment on children and their families. The success of the clinical trials networks related to survivorship highlights an even more critical role in numerous domains of psychosocial research and care. Within the cooperative group setting, the field of behavioral science includes psychologists, social workers, physicians, nurses, and parent advisors. The research agenda of this group of experts needs to focus on utilization of psychometrically robust measures to evaluate the impact of treatment on children with cancer and their families during and after treatment ends. Over the next 5 years, the field of behavioral science will need to develop and implement initiatives to expand use of standardized neurocognitive and behavior batteries; increase assessment of neurocognition using technology; early identification of at-risk children/families; establish standards for evidence-based psychosocial care; and leverage linkages with the broader behavioral health pediatric oncology community to translate empirically supported research clinical trials care to practice.

Shared decision-making in pediatric allogeneic blood and marrow transplantation: what if there is no decision to make?

INTRODUCTION: Shared decision-making between health care professionals, patients, parents, and guardians is widely recommended today. However, it is unclear what happens when collaborative language is used by physicians in clinical situations for which patients and parents/guardians believe there is no decision to be made. METHODS: We conducted a qualitative study of decision-making for pediatric allogeneic blood and marrow transplantation by interviewing patients, parents, grandparents, donor siblings, and nondonor children after the decision to proceed to transplant but before the transplantation. Each interview was audio recorded, transcribed, and coded for major themes. RESULTS: In total, 107 members of 30 families at four sites were interviewed, including 15 patients, 22 mothers, 2 stepmothers, 1 grandmother, 19 fathers, 3 stepfathers, 1 grandfather, 13 sibling donors, and 31 nondonor children (siblings, half-siblings, and cousins). In all, 81% of parents/guardians, 73% of patients, 31% of donors, and 29% of other children reported there was no decision to be made. Almost all (88%) parents/guardians indicated that the physician's recommendation was a large determinant in their agreement to go forward with the transplantation. All parents/guardians reported that "agreeing to a plan" was a better description of what their consent entailed. CONCLUSIONS: To be respectful of patients and parents/guardians, we suggest that "agreeing to a plan" may be a better description for what parents/guardians must consider when the alternative to a transplantation is likely death. In this clinical context, the shared decision-making model with a focus on "a decision to be made" may be misleading.

Reflections of Moral Suffering, Resilience, and Wisdom of Pediatric Oncology Social Workers during the COVID-19 Pandemic.

BACKGROUND: The COVID-19 pandemic has significantly altered the lives of pediatric oncology social workers. Challenges include difficulty building rapport with the use of telephone/computers, lack of clarity around who is designated as "essential", structural challenges, isolation, and witnessing distress. This study aimed to describe the ways that the pandemic has personally impacted pediatric oncology social workers. METHODS: Participants were recruited through the Association of Pediatric Oncology Social Workers (APOSW) listserv. In total, 101 participants from 31 states and the District of Columbia completed an online survey containing quantitative and open-ended questions. Qualitative data analysis included thematic analysis of participants' optional survey responses to three open-ended questions. RESULTS: Fifty-seven of the participants provided responses that revealed 3 first level codes and 11 second level codes. First level codes were developed a priori from the questions: Experiences that stay with you, Wisdom gained and Impact on your work. Pandemic-related challenges caused moral suffering and professional challenges for participants but also created opportunities to find meaning in their work. CONCLUSION: Data illuminated moral suffering, unrecognized resilience, new ways of maintaining self-and family care, and creative approaches to care of children with cancer and their families at diagnosis, during treatments and at the end of life.

Immune function in childhood cancer survivors: a Children's Oncology Group review.

Childhood cancer and its treatment often impact the haematopoietic and lymphatic systems, with immunological consequences. Immunological assessments are not routinely included in surveillance guidelines for most survivors of childhood cancer, although a robust body of literature describes immunological outcomes, testing recommendations, and revaccination guidelines after allogeneic haematopoietic cell transplantation. Survivorship care providers might not fully consider the impaired recovery of a child's immune system after cancer treatment if the child has not undergone haematopoietic cell transplantation. We did a scoping review to collate the existing literature describing immune function after childhood cancer therapy, including both standard-dose chemotherapy and high-dose chemotherapy with haematopoietic cell rescue. This Review aims to summarise: the principles of immunology and testing of immune function; the body of literature describing immunological outcomes after childhood cancer therapy, with an emphasis on the risk of infection, when is testing indicated, and preventive strategies; and knowledge gaps and opportunities for future research.