Genomic sequencing research in pediatric cancer care: Decision making, attitudes, and perceived utility among adolescents and young adults and their parents.

PURPOSE: Professional guidelines recommend engaging adolescents and young adults (AYAs) in medical decision making (DM), including whether to undergo genomic sequencing (GS). We explored DM around GS and attitudes after return of GS results among a diverse group of AYAs with cancer and their parents. METHODS: We surveyed AYAs with cancer (n = 75) and their parents (n = 52) 6 months after receiving GS results through the Texas KidsCanSeq study. We analyzed AYAs' DM role in GS research enrollment and their satisfaction with that role. We compared AYAs' and parents' self-reported understanding of, attitudes toward, and perceived utility of the AYA's GS results. RESULTS: Most AYAs reported equally sharing DM with their parents (55%) or leading DM (36%) about GS research. Compared with their cancer care DM role, 56% of AYAs reported the same level of involvement in GS research DM, whereas 32% were more involved, and 13% were less involved (P = .011). AYAs were satisfied (99%) with their DM role regarding GS study participation. AYAs and parents had similar self-reported understanding of, attitudes toward, and perceived utility of the GS results. CONCLUSION: Our results support engaging AYAs in DM about GS research and provide insights into AYAs' DM preferences and positive attitudes toward GS.

Psychosocial services for pediatric oncology patients in low- and middle-income countries from health care providers' perspectives: A survey-based report from the SIOP Global Health Network Psychosocial Working Group.

OBJECTIVES: While pediatric cancer survival rates have improved in high-income countries, they remain much lower in low- and middle-income countries (L/MICs). While much focus in recent years has been on remediating the survivorship gap, less is known about the psychosocial needs and availability of psychosocial services for this population. METHODS: A questionnaire was created by the SIOP Global Health Network Psychosocial Working Group to assess psychosocial needs and services in L/MIC. The questionnaire was distributed to pediatric oncology professionals, both in-person at the SIOP Annual Congress in Lyon (2019) conference and then electronically. Individuals not part of SIOP were also invited to participate via social media posts. RESULTS: Sixty-six respondents from 31 countries completed the questionnaire. The majority of participants were physicians, followed by nurses. Participants from low- and lower-middle-income countries (L/LMICs) perceived patients as having higher rates of anxiety and caregivers as having higher rates of depression as compared to those in upper-middle-income countries (UMICs). Across all L/MICs represented, 85% of physicians reported that psychosocial issues sometimes, frequently, or always affect their clinical obligations. Participants reflected on the availability of professionals who treat mental health concerns; the availability of social workers, psychologists, and non-professional volunteers differed significantly between L/LMICs and UMICs. Treatment abandonment and myths/disinformation were highlighted as the most pressing psychosocial priorities. CONCLUSION: Our study highlights pediatric oncology providers' perceptions of psychosocial concerns. Based on responses, proposals for minimum standards of care are made, as well as the importance of training existing providers and funding additional psychosocially-focused professionals.

Pediatric Consultation-Liaison Psychology: Insights and Lessons Learned During the COVID-19 Pandemic.

COVID-19 has presented a variety of challenges to the provision of psychology services. In the first month of the pandemic, pediatric consultation-liaison (CL) psychologists reported significant changes in methodology of service delivery (Steinberg et al. in Clin Pract Pediatr Psychol 9:1, 2020). To better understand how and if these changes persisted, as well as other emerging trends, a follow-up study examined changes and challenges six months into the pandemic. An anonymous questionnaire assessed topics related to pediatric CL psychology including practice changes, perception of changes, and institutional support. The questionnaire was sent to the APA Society of Pediatric Society's special interest group listservs. Thirty responses were analyzed. Quantitative results showed participants' beliefs that telemedicine is equally efficacious to in-person services for outpatient psychological care, but less effective for inpatient care. Participants reported their perception of how institutions supported their safety, psychology trainee safety and training goals, and patient care. Qualitative results demonstrated that most psychologists experienced changes related to their dynamics with medical teams, which included changes in team efficiency, workload, transition, and team collaboration.

Short report: sticks and stones may break my bones, but words can also hurt me: understanding language interpreters' perceptions of stress/growth and needs in a pediatric medical setting.

An increased focus on quality, trauma-informed patient care also warrants examination of providers' experiences of stress in medical settings. However, little is known about language interpreters' experiences of stress in the pediatric hospital setting, despite their involvement in acute and difficult patient encounters. This pilot study evaluated language interpreters' experiences and perceptions of stress in a large children's hospital. Descriptive and qualitative analyses, using a novel survey measure of interpreters' experiences, were performed to evaluate language interpreters' experiences with stressful patient encounters and identification of available and desired supports. All interpreters surveyed endorsed experiencing stress during challenging patient encounters in the hospital, though the majority also identified positive changes to their worldview as a result of their work. Results highlighted interpreters' strategies to cope with stress and perceived institutional needs to manage stressful encounters. Interpreters' experiences of stress in the pediatric hospital underscores needs for prevention and intervention efforts aimed at helping interpreters manage job-related stress. Preliminary, trauma-informed recommendations for working with and supporting interpreters are proposed.

The Role of Pediatric Psychologists in Critical Care: Lessons Learned and Future Directions in Integrating Mental Health Care Into PICUs.

Pediatric psychologists are essential staff in the PICU. Their role in caring for critically ill children aligns with clinical practice guidelines for the mental health care needs of this population of patients. This article highlights the role of pediatric psychology in the PICU through illustrative case examples. We discuss lessons learned and future directions for the development and provision of mental health services in PICUs. We address relevant ways for critical care providers to understand the importance of evidence-based psychological care and advocate for the inclusion of psychologists on multidisciplinary PICU teams. As the critical care field continues to focus on an improved understanding of post-intensive care syndrome in pediatrics and the psychological needs of critical care patients, it will be important to consider the vital roles of psychologists and to advocate for improved integration of mental health care in PICUs.

Psychometric properties of the 52-, 25-, and 10-item English and Spanish versions of the Social Problem-Solving Inventory-Revised.

Objective: The Social Problem-Solving Inventory-Revised (SPSI-R) is a widely used instrument to assess problem-solving ability. This study examined the factor structure of the 52-, 25-, and 10-item versions of the SPSI-R and assessed factorial invariance across English- and Spanish-speaking participants. In addition, the internal consistency, test-retest reliability and sensitivity to detect change in problem-solving skills over time were assessed across the three different versions of the SPSI-R. Methods: Data from three randomized controlled trials, in which caregivers of children with cancer (N = 1,069) were assigned to either a problem-solving skills intervention (N = 728) or a control condition (N = 341), were combined. The SPSI-R was administered at baseline (T1) and immediately post intervention (T2). Reliability and multigroup analyses were performed with confirmatory factor analysis (CFA). Sensitivity to change analyses were performed using repeated measures ANOVA. Results: Confirmatory factor analysis at T1 showed good fit statistics and internal consistency for the 52- and the 25-item versions, but not for the 10-item version. Factorial invariance was demonstrated across time (T1-T2) and language (Spanish-English) for both the 52- and 25-item versions. Adequate sensitivity to change over time was shown. Conclusion: The 52- and 25-item versions of the SPSI-R appear reliable and valid for assessment of problem-solving skills in English- and Spanish-speaking caregivers of children with newly diagnosed cancer. The 25-item SPSI-R can be used as a short version measuring problem-solving ability; the 10-item version cannot be considered a reliable measure for this population.

Psychological and Psychiatric Comorbidities in Youth with Serious Physical Illness.

An estimated one in six children in the United States suffers from a mental disorder, including mood, anxiety, or behavioral disorders. This rate is even higher in children with chronic medical illness. This manuscript provides a concise review of the symptoms that comprise mental conditions often observed in children with chronic illness or at the end of life. It further provides some guidance to help clinicians distinguish normative from pathological presentations. Evidence-based psychotherapy interventions, potentially applicable to the acute inpatient setting, are briefly summarized. Broad recommendations are made regarding both psychotherapeutic as well as pharmacotherapeutic interventions, with a review of common or serious medication side effects. Finally, delirium recognition and management are summarized.

"It Made Me the Person I Am Today ": Survivors of Childhood, Adolescent, and Young Adult Cancer Reflect on Their Experiences.

Purpose: As survival rates of childhood, adolescent, and young adult (YA) cancers improve, there is a growing population of YA cancer survivors who can provide insight into the lived experience of cancer. The goal of this study was to improve understanding of the cancer experience through interviews with YA-aged survivors. Methods: A convenience sample of survivors (age ≥18; remission ≥5 years) was recruited from an urban pediatric hospital. Participants responded to demographic questions, open-ended questions about cancer experience, and optional verbal interview. Responses to questions (written and verbal) were transcribed and coded using thematic analysis to identify common themes. Results: Participants were 18 cancer survivors (M age = 22.17 ± 3.96, 50% male, 33.3% Latino/Hispanic). The main themes reported were as follows: (1) importance of mind-set (reported by 94% of participants); (2) positive transformation (61%); (3) importance of support from medical team (61%); (4) importance of social support (56%); and (5) burden of cancer (44%). Conclusions: Themes of resilience and optimism were pervasive throughout responses. YA-aged survivors were both proponents of adapting a positive mind-set when undergoing treatment, and appeared to maintain this positive mind-set into survivorship by describing cancer as a transformative experience. Cognition, positive change, and social support, are all concepts that could be addressed through targeted screenings and interventions. Fostering a positive lens may help with overall adjustment and mood during treatment, and be protective for physical and mental health.

In-person vs. web-based administration of a problem-solving skills intervention for parents of children with cancer: Report of a randomized noninferiority trial.

BACKGROUND: Bright IDEAS (BI) problem-solving skills training is an evidence-based intervention designed to help parents manage the demands of caring for a child with cancer. However, the resource intensiveness of this in-person intervention has limited its widespread delivery. We conducted a multicenter, randomized trial with a noninferiority design to evaluate whether a web-based version of BI requiring fewer resources is noninferior to in-person administration. METHODS: 621 caregivers of children with newly diagnosed cancer were randomly assigned to standard BI delivered face-to-face or a web-based version delivered via mobile device. The primary outcome was caregiver-reported problem-solving skills. The noninferiority margin was defined as 0.2 standard deviation units of the change from baseline to end of intervention. Secondary outcomes included caregiver-reported mood disturbance, depression, and posttraumatic stress symptoms. The study was registered with ClinicalTrials.gov Identifier: NCT01711944. FINDINGS: The effect of the standard treatment was preserved; parents in the standard BI arm improved their problem-solving (effect size = 0.53, t = 8.88, p < .001). Parents in the web-based BI group also improved their problem-solving (effect size = 0.32, t = 5.32, p < .001). Although the web-based intervention preserved 60% of the standard treatment effect, the test of noninferiority was non-significant (effect size = -0.21, p = 0.55). Similarly, the web-based intervention preserved > 60% of the standard intervention effect on all secondary outcomes; however, tests of noninferiority were non-significant. INTERPRETATION: Noninferiority of web-based BI relative to standard face-to-face administration was not established. Further development of the web-based BI is needed before it can be recommended as a stand-alone intervention. However, the documented benefits of the web-based intervention as well as the advantages of low resource utilization and ease of delivery suggest that further development of web-based BI is indicated, and that it may play a valuable role in alleviating distress in caregivers of children with serious or chronic illness. FUNDING: National Institutes of Health (U.S.), R01 CA159013 (P.I. Sahler).

Information needs among adolescent bariatric surgery patients and their caregivers.

BACKGROUND: Bariatric surgery is an invasive medical treatment for morbid obesity that requires behavioral maintenance for physical success. Patient knowledge, motivation, and adherence are important factors in optimizing results. OBJECTIVES: The purpose of the present study was to identify perceived informational gaps of adolescent and young adult bariatric surgery patients with morbid obesity (body mass index≥40 kg/m(2)). SETTING: This study took place in a pediatric tertiary care academic medical center. METHODS: Thirty-one adolescents/young adults who had undergone Roux-en-Y gastric bypass surgery at the authors' institution were recruited to complete questionnaires at their postsurgical visits (≥3 months postsurgery). Seventeen caregivers also participated in this study. The questionnaire used in the present study prompted patients and caregivers to reflect on information they wish they had known before surgery; questionnaire items included multiple choice and open-ended questions. RESULTS: Participants indicated that their informational needs were generally well met before surgery, although there were more needs noted by patients than by caregivers. Adolescent/young adult participants expressed a desire to have had more information about the necessity of taking vitamins daily and about having more gas. An association between informational needs and satisfaction was also found. Qualitative data revealed the importance of conveying cognitive-behavioral aspects of surgery to families (e.g., adherence, motivation). CONCLUSION: Despite most patients and caregivers being satisfied with the adolescent bariatric surgery program at the authors' institution, informational gaps exist. Teen-friendly ways to disseminate information would be helpful in influencing patients' satisfaction.