Checking IN: Development, Acceptability, and Feasibility of a Pediatric Electronic Distress Screener.

Objective: Chronic illness in children and adolescents is associated with significant stress and risk of psychosocial problems. In busy pediatric clinics, limited time and resources are significant barriers to providing mental health assessment for every child. A brief, real-time self-report measure of psychosocial problems is needed. Methods: An electronic distress screening tool, Checking IN, for ages 8-21 was developed in 3 phases. Phase I used semi-structured cognitive interviews (N = 47) to test the wording of items assessing emotional, physical, social, practical, and spiritual concerns of pediatric patients. Findings informed the development of the final measure and an electronic platform (Phase II). Phase III used semi-structured interviews (N = 134) to assess child, caregiver and researcher perception of the feasibility, acceptability, and barriers of administering Checking IN in the outpatient setting at 4 sites. Results: Most patients and caregivers rated Checking IN as "easy" or "very easy" to complete, "feasible" or "somewhat feasible," and the time to complete the measure as acceptable. Most providers (n = 68) reported Checking IN elicited clinically useful and novel information. Fifty-four percent changed care for their patient based on the results. Conclusions: Checking IN is a versatile and brief distress screener that is acceptable to youth with chronic illness and feasible to administer. The summary report provides immediate clinically meaningful data. Electronic tools like Checking IN can capture a child's current psychosocial wellbeing in a standardized, consistent, and useful way, while allowing for the automation of triaging referrals and psychosocial documentation during outpatient visits.

Development and psychometric testing of a pediatric chronic graft-versus-host disease symptom scale: protocol for a two-phase, mixed methods study.

Background: Chronic graft-versus-host disease (cGVHD) is a debilitating late complication of hematopoietic stem cell transplantation. It is often accompanied by extensive symptom burden. No validated cGVHD patient-reported outcome (PRO) measure exists to evaluate cGVHD symptom bother in children and adolescents younger than 18 years. This paper presents the study protocol for a multi-center, two-phase protocol to develop a psychometrically valid pediatric cGVHD Symptom Scale (PCSS) and a companion caregiver-proxy measure to capture the symptom burden experienced by children with cGVHD. In the first phase of the study, our aim is to evaluate the comprehension, clarity and ease of response of the PCSS through cognitive interviewing and to iteratively refine the measure to optimize content validity. In the second phase of the study, we will quantitatively examine the measurement properties of the PCSS in children and their caregiver-proxies. Methods and analysis: Eligible participants are children/adolescents ages 5-17 with cGVHD who are receiving systemic immunosuppressive treatment or have recently tapered to discontinuation. In the first phase, we are enrolling 60 child and caregiver-proxy dyads in three child age strata (5-7, 8-12, and 13-17 years old). Semi-scripted cognitive debriefing interviews are conducted to assess comprehension, clarity, and ease of response of each PCSS item with the child alone, and then jointly with the caregiver-proxy to explore discordant ratings. In phase two, an age-stratified cohort of 120 child-caregiver dyads will be enrolled to evaluate test-retest reliability, construct validity, and responsiveness. Anchors for known-groups validity include the PedsQL module and clinical variables, including cGVHD clinician-rated severity scores. In participants ages 13-17, we will also compare responses on the PCSS with those from the Lee cGVHD Symptom Scale, to gauge the youngest age at which adolescent respondents can comprehend this adult measure. Discussion: This study will yield a well-validated, counterpart measure to the Lee cGVHD Symptom Scale for use in children with cGVHD and their caregiver-proxies. This new patient-reported outcome measure can be integrated into clinical trials and care delivery for pediatric transplant survivors to improve the precision and accuracy with which their cGVHD symptom experience is captured. Clinical trial registration: www.ClinicalTrials.gov, NCT04044365.

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.

Voicing their choices: Advance care planning with adolescents and young adults with cancer and other serious conditions.

OBJECTIVES: To determine whether engaging in advance care planning (ACP) using a formal tool, Voicing My CHOiCES (VMC), would alleviate adolescent and young adults (AYAs) anxiety surrounding ACP and increase social support and communication about end-of-life care preferences with family members and health care providers (HCPs). METHODS: A total of 149 AYAs aged 18-39 years receiving cancer-directed therapy or treatment for another chronic medical illness were enrolled at seven US sites. Baseline data included prior ACP communication with family members and HCPs and measures of generalized anxiety, ACP anxiety, and social support. Participants critically reviewed each page of VMC and then completed three pages of the document. ACP anxiety was measured again immediately after the completion of VMC pages. One month later, participants repeated anxiety and social support measures and were asked if they shared what they had completed in VMC with a family member or HCP. RESULTS: At baseline, 50.3% of participants reported that they previously had a conversation about EoL preferences with a family member; 19.5% with an HCP. One month later, 65.1% had subsequently shared what they wrote in VMC with a family member; 8.9% shared with an HCP. Most (88.6%) reported they would not have had this conversation if not participating in the study. No significant changes occurred in social support. There was an immediate drop in anxiety about EoL planning after reviewing VMC which persisted at 1 month. Generalized anxiety was also significantly lower 1 month after reviewing VMC. SIGNIFICANCE OF RESULTS: Having a document specifically created for AYAs to guide ACP planning can decrease anxiety and increase communication with family members but not necessarily with HCPs. Future research should examine ways ACP can be introduced more consistently to this young population to allow their preferences for care to be heard, respected, and honored, particularly by their healthcare providers.

Fertility and CAR T-cells: Current practice and future directions.

Chimeric antigen receptor (CAR) T-cells serve to overcome chemotherapeutic resistance and have been proven to be highly effective in B-cell hematologic malignancies. Although initial use has been in patients with multiply relapsed/refractory disease, as CAR T-cells are used earlier in the treatment paradigm, it will be important to explore implications of this novel therapy on cancer late-effects. We sought to assess the current framework for considerations of fertility surrounding CAR T-cell use and identify opportunities for education and future research. To assess current practice patterns regarding post-CAR T-cell fertility, peri-CAR T-cell fertility guidance, utilization of fertility preservation surrounding CAR T-cell administration and identify future areas of research, a cross-sectional survey assessing practice patterns regarding fertility counseling and outcomes surrounding CAR T-cell therapy was distributed electronically to approximately 300 Center for International Blood and Marrow Transplant Research medical centers treating patients with CAR T-cell therapy in the United States and internationally between October 12 and November 2, 2021. One medical provider was asked to complete the study survey on behalf of their institution. We received 96 survey responses, of which 66 centers utilized CAR T-cells and provided at least partial responses that were used for the primary analysis. Centers were varied in demographics, experience in administering CAR T-cells, and aspects of patients receiving CAR T-cells. Eighteen centers exclusively treated pediatric patients, and patients at these centers were more likely to be treated for B-cell acute lymphoblastic leukemia. Seven pregnancies and 5 live births after CAR T-cells were reported from 6 centers (1 pediatric-only). Most centers had no established guidelines in place regarding fertility preservation in the peri-CAR T-cell period or regarding recommendations for avoiding pregnancy/fathering a child after receiving CAR T-cells. Areas for future research were elicited from responding centers and categorized into 3 broad themes, including: standardized peri-CAR T-cell fertility guidelines; long-term fertility outcomes after CAR T-cell therapy; impact of CAR T-cells on a developing fetus; and determining the relevance of studying fertility in patients who receive CAR T-cells. We identified a high degree of variability in peri-CAR T-cell guidance on avoidance of pregnancy/fathering a child, as well as a wide-range of practices surrounding referral for fertility preservation, the latter of which may be likely due to the fact that patients receiving CAR T-cells in the present era are likely multiply relapsed/refractory. In summary, this is the first report of several live-births following CAR T-cells, which highlights the important need for further research in CAR T-cell therapy and fertility, with a host of novel research questions identified.

Adolescent and Young Adult Initiated Discussions of Advance Care Planning: Family Member, Friend and Health Care Provider Perspectives.

Background and Aims: End-of-life (EoL) discussions can be difficult for seriously ill adolescents and young adults (AYAs). Researchers aimed to determine whether completing Voicing My CHOiCES (VMC)-a research-informed advance care planning (ACP) guide-increased communication with family, friends, or health care providers (HCPs), and to evaluate the experience of those with whom VMC was shared. Methods: Family, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, conversation quality, and whether the discussion prompted changes in care. Open-ended responses underwent thematic analysis. Results: One-month post-completion, 65.1% of AYA had shared VMC completion with a family member, 22.6% with a friend, and 8.9% with an HCP. Among a sample of respondents, family (47%) and friends (33%) reported a positive change in their relationship with the AYA. Participant descriptions of the experience fell into five themes: positive experience (47%), difficult experience (44%), appreciated a guide to facilitate discussion (35%), provided relief (21%), and created worry/anxiety (9%). Only 1 HCP noted a treatment change. Family (76%), friends (67%), and HCP (50%) did not think the AYA would have discussed EoL preferences without completing VMC. Conclusions: VMC has potential to enhance communication about ACP between AYA and their family and friends, though less frequently with HCPs. Participants reported a positive change in their relationship with the AYA after discussing VMC, and described experiencing the conversation as favorable, even when also emotionally difficult.

How I approach the use of bibliotherapy in caring for children with oncologic and hematologic conditions.

Bibliotherapy utilizes storybook readings to foster expressive therapy for children. Storybooks represent a readily available yet underutilized support tool in pediatric hematology and oncology care settings. Storybooks can help explain a new diagnosis, treatment plan, body changes, and identity adjustment in a relatable way for patients to then have a safe space to process questions and emotions. This paper serves as a "how to" guide for clinicians to consider bibliotherapy for a patient, select suitable book options, and introduce and incorporate bibliotherapy as part of comprehensive care.

Mapping the Landscape of Advance Care Planning in Adolescents and Young Adults Receiving Allogeneic Hematopoietic Stem Cell Transplantation: A 5-Year Retrospective Review.

Allogeneic hematopoietic stem cell transplantation (HSCT) carries significant risks of morbidity and mortality. Participation in advance care planning (ACP) is crucial to promote patient-centered care and has been shown to have positive impacts on patients, caregivers, and providers. Historically, both HSCT recipients and adolescents and young adults (AYAs) are significantly less likely to engage in ACP. We sought to characterize ACP utilization in AYAs undergoing HSCT by evaluating the frequency of different types of ACP documentation over time and identifying demographic and clinical factors associated with documentation of each type of ACP. We conducted a single-center retrospective review of the electronic health record (EHR) of AYAs (age 15 to 39 years) who underwent allogeneic HSCT between 2015 and 2020. EHR documents were screened for 3 predefined categories of ACP: (1) advance directives (ADs) or medical orders (MOs), which included proof of signed paper directives, expressions of preferred code status, and identification of a healthcare proxy; (2) goals of care (GOC) conversations, which included discussions of medical care in a specific situation informed by patients' priorities; and (3) other ACP conversations, which included more general discussions of patients' values regarding their care or legacy wishes. Documents were coded by 2 researchers, and discrepant categorizations were reviewed by a third researcher. Patients age <18 years on the day of transplantation were excluded in the analyses of AD/MO documentation. Univariate and multivariate logistic regression were used to test for associations between patient factors and documentation of each type of ACP. For deceased patients, Kaplan-Meier curves were created to illustrate the time-to-event relationship between days before death and documentation of each type of ACP. Sixty-eight thousand documents associated with 219 patients were reviewed, and 666 ACP documents associated with 190 patients were identified. Few of the 219 patients had documented GOC (n = 29; 13%) or other ACP conversations (n = 81; 37%). A subset of patients (n = 28; 13%) had no documented ACP. Most of the 201 patients age ≥18 years had a documented AD/MO (n = 172; 86%). No tested factors were significantly associated with documentation of ADs/MOs. GOC and other ACP conversations were more likely to occur in patients with a palliative care consult, and patients with a malignant diagnosis were also more likely to engage in GOC conversations. More than 50% of the documentation occurred in the subset of 39 deceased patients, with one-half of AD/MO documentation in the last 67 days of life, one-half of other ACP documentation in the last 20 days of life, and one-half of GOC documentation in the final 2 days of life. Although the majority of AYA patients receiving HSCT did have documentation of ADs/MOs, few patients had documented GOC or other ACP conversations. The bulk of all ACP conversations occurred in patients that ultimately died and who were very close to the end of life. Our results support ongoing efforts to improve the implementation of ACP in this vulnerable population, particularly for those undergoing HSCT for nonmalignant conditions.

Considerations for conducting and reporting digitally supported cognitive interviews with children and adults.

BACKGROUND: Cognitive interviewing is a well-established qualitative method used to develop and refine PRO measures. A range of digital technologies including phone, web conferencing, and electronic survey platforms can be leveraged to support the conduct of cognitive interviewing in both children and adults. These technologies offer a potential solution to enrolling underrepresented populations, including those with rare conditions, functional limitations and geographic or socioeconomic barriers. In the aftermath of the COVID-19 pandemic, the use of digital technologies for qualitative interviewing will remain essential. However, there is limited guidance about adapting cognitive interviewing procedures to allow for remote data capture, especially with children. METHODS: Synthesizing the literature and our research experiences during the COVID-19 pandemic, we examine considerations for implementing digitally supported cognitive interviews with children, adolescents, and adults. We offer recommendations to optimize data quality and empirical rigor and illustrate the application of these recommendations in an ongoing cognitive interviewing study to develop and refine a new pediatric PRO measure. RESULTS: Good research practices must address participant and researcher preparation for study-related procedures and should anticipate and pre-emptively manage technological barriers. Field notes should detail interview context, audio/video cues, and any impact of technological difficulties on data quality. The approaches we recommend have been tested in an ongoing cognitive interviewing study that is enrolling children/adolescents with cGVHD ages 5-17 and their caregivers [NCT04044365]. The combined use of telephone and videoconferencing to conduct cognitive interviews remotely is feasible and acceptable and yields meaningful data to improve the content validity of our new PRO measure of cGVHD symptom bother. CONCLUSION: Digitally supported cognitive interviewing procedures will be increasingly employed. Remote data collection can accelerate accrual, particularly in multi-site studies, and may allow for interviewer personnel and data management to be centralized within a coordinating center, thus conserving resources. Research is needed to further test and refine techniques for remote cognitive interviewing, particularly in traditionally underrepresented populations, including children and non-English speakers. Expansion of international standards to address digitally supported remote qualitative data capture appears warranted.

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.

Navigating the terrain of moral distress: Experiences of pediatric end-of-life care and bereavement during COVID-19.

OBJECTIVE: Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers' moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC). METHOD: The Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs. RESULTS: A total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents' depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic. SIGNIFICANCE OF RESULTS: The COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.

Exploring the Impact of the Coronavirus Pandemic on Pediatric Palliative Care Clinician Personal and Professional Well-Being: A Qualitative Analysis of U.S. Survey Data.

CONTEXT: The COVID-19 pandemic has had a dramatic impact on palliative care delivery and patient experiences. Less is known about the experiences and responses of palliative care clinicians. OBJECTIVE: We aimed to describe the pandemic's impact on pediatric palliative care clinicians' personal and professional well-being. METHODS: The Palliative Assessment of Needed DEvelopments & Modifications In the Era of Coronavirus (PANDEMIC) cross-sectional online survey was posted on 7 professional listservs between May and June 2020. We conducted a conventional content analysis of written responses to three open-ended questions regarding the lasting impact of COVID-19. RESULTS: Of 207 multidisciplinary respondents from 80 US cities, 148 (71%) provided written responses to open-ended questions, and 62 responses (42%) were related to personal, professional, or existential well-being. These responses were sorted into 4 major categories: personal burdens, professional burdens, personal benefits, and professional benefits. Respondents described burdens more commonly than they did benefits (67% vs. 33% of comments, respectively). Personal burdens related to increased fear and uncertainty, fear of bringing the virus home, and a sense of collective grief. Professional burdens included a sense of exhaustion, a challenge with work-life balance, personal experiences with colleagues infected with the virus, and considerations of leaving health care altogether. Personal benefits included lessons learned, an evolving sense of what matters, and improved work-life balance. Professional benefits included opportunities for professional development and a sense of professional purpose. CONCLUSION: Pediatric palliative care clinicians perceive a breadth of impacts from the COVID-19 pandemic. Ongoing clinician assessment is important as the pandemic continues.

Impact of the Coronavirus Pandemic on Pediatric Palliative Care Team Structures, Services, and Care Delivery.

Objectives: Define the impact of the coronavirus pandemic on pediatric palliative care team structures, communication, and workflow; and describe the roles, responsibilities, and reflections of interdisciplinary team members. Methods: Cross-sectional online surveys were posted on seven professional Listservs from May 2020 to June 2020. Data were summarized descriptively and with semantic content analyses. Results:N = 207 surveys were completed by pediatric palliative program representatives from 80 cities, inclusive of physicians, nurses, child life, social workers, chaplains, and psychologists. Teams consulted on <20% of potential or presumed COVID-19 cases in their centers. Sixty percent of personnel were deemed "essential" during the pandemic. One-third of personnel remained in their usual work locale, with some shifting to support adult palliative services and others working remotely. Over 60% reported a sense of team "distance" compared with "close" team cohesion, associated with physical location of team members (p < 0.01) and frequency of team counseling, education, or support meetings (p < 0.02). All programs adopted a form of telehealth for patient care, although 41% did not receive telehealth training and 73% perceived unequal care quality with virtual care. Absence of pediatric patients' family members due to visitation policies, missing human presence and physical touch, concern for personal and colleague health, and fear of financial sustainability for programs were notable stressors. Conclusions: While the number of children diagnosed with COVID-19 receiving hands-on care from pediatric palliative care teams was reportedly low, the coronavirus pandemic vastly impacted pediatric palliative care team structure, daily services, and communication models warranting attentiveness to lessons learned and future direction.