Post-PICU Cognitive and Psychological Outcomes in Children Receiving Treatments for Acute Lymphoblastic Leukemia.

OBJECTIVES: To examine neurocognitive and psychological outcomes associated with post-PICU admissions in children treated for childhood acute lymphoblastic leukemia (ALL). DESIGN: Observational study from October 2007 to March 2017. SETTING: Pediatric onco-critical care unit. PATIENTS: All patients in this study (n = 296; ages 3-21) were treated for ALL on the St. Jude Total Therapy 16 clinical trial (NCT00549848) from 2007 to 2017. Of these, 104 patients were admitted to the PICU during protocol-directed therapy. All patients completed protocol-directed neurocognitive monitoring prospectively, at the end of cancer-directed therapy. Data on PICU stays were abstracted retrospectively from the medical record. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Demographic and critical illness variables were abstracted from institutional databases and medical records. Neurocognitive and psychosocial outcomes were prospectively obtained at the end of treatment. Children who had a PICU admission experienced significantly lower functioning compared to normative samples in several areas of cognitive functioning (working memory, processing speed, executive functions, inattention, math achievement, fine motor dexterity, and speed), daily living skills, and internalizing problems (all ps < 0.05). Compared with those without PICU admissions, patients with PICU admissions had worse performance on a measure of sustained attention (p = 0.017). The frequency of patients at risk for problems with learning and memory was significantly higher in the PICU group compared with the non-PICU group (25% vs 12%, p = 0.006). Critical illness symptom severity was not associated with neurocognitive or psychological outcomes. CONCLUSIONS: Children with ALL, with or without a PICU admission, experienced lower cognitive and psychological outcomes following treatment. Future research is needed to continue identifying risk factors for post-intensive care syndrome (PICS-p) and post-PICU cognitive and psychological impairments in pediatric patients.

Development of a Structured Peer Mentoring Program for Support of Parents and Caregivers of Children with Cancer.

BACKGROUND: Parents of children newly diagnosed with cancer have increased anxiety, depression, and numerous questions. Many of these concerns can only be answered by parents who have undergone a similar experience. LOCAL PROBLEM: Our institution lacked a formal parent-to-parent mentoring program for parents of children newly diagnosed with cancer. METHODS: The Parent Family Advisory Council (PFAC) recommended implementation of a formalized program that would promote a structured approach to mentoring, with a formal referral process and designated parent mentors who had been vetted, trained, and supported by the institution. INTERVENTION: In 2010, a pilot parent-to-parent mentoring program was initiated. RESULTS: Since the programs initiation, 4062 encounters have been documented. This represents an annual average of 72 mentees paired with 20 mentors, averaging 677 annual encounters. Parents view the mentoring relationship as positive and report that they feel understood, less anxious, and less isolated. CONCLUSION: We show that a parent-to-parent mentoring program is feasible and sustainable over time. Our model is now transitioning from a staff referral to self-referral, as well as incorporating real-time mentoring into the new commons area for patients and their families. A formal volunteer mentoring program can assist parents in navigating the trajectory of childhood cancer, decreasing isolation.

Venetoclax in combination with cytarabine with or without idarubicin in children with relapsed or refractory acute myeloid leukaemia: a phase 1, dose-escalation study.

BACKGROUND: Outcomes for children with relapsed or refractory acute myeloid leukaemia remain poor. The BCL-2 inhibitor, venetoclax, has shown promising activity in combination with hypomethylating agents and low-dose cytarabine in older adults for whom chemotherapy is not suitable with newly diagnosed acute myeloid leukaemia. We aimed to determine the safety and explore the activity of venetoclax in combination with standard and high-dose chemotherapy in paediatric patients with relapsed or refractory acute myeloid leukaemia. METHODS: We did a phase 1, dose-escalation study at three research hospitals in the USA. Eligible patients were aged 2-22 years with relapsed or refractory acute myeloid leukaemia or acute leukaemia of ambiguous lineage with adequate organ function and performance status. During dose escalation, participants received venetoclax orally once per day in continuous 28-day cycles at either 240 mg/m2 or 360 mg/m2, in combination with cytarabine received intravenously every 12 h at either 100 mg/m2 for 20 doses or 1000 mg/m2 for eight doses, with or without intravenous idarubicin (12 mg/m2) as a single dose, using a rolling-6 accrual strategy. The primary endpoint was the recommended phase 2 dose of venetoclax plus chemotherapy and the secondary endpoint was the proportion of patients treated at the recommended phase 2 dose who achieved complete remission or complete remission with incomplete haematological recovery. Analyses were done on patients who received combination therapy. The study is registered with ClinicalTrials.gov (NCT03194932) and is now enrolling to address secondary and exploratory objectives. FINDINGS: Between July 1, 2017, and July 2, 2019, 38 patients were enrolled (aged 3-22 years; median 10 [IQR 7-13]), 36 of whom received combination therapy with dose escalation, with a median follow-up of 7·1 months (IQR 5·1-11·2). The recommended phase 2 dose of venetoclax was found to be 360 mg/m2 (maximum 600 mg) combined with cytarabine (1000 mg/m2 per dose for eight doses), with or without idarubicin (12 mg/m2 as a single dose). Overall responses were observed in 24 (69%) of the 35 patients who were evaluable after cycle 1. Among the 20 patients treated at the recommended phase 2 dose, 14 (70%, 95% CI 46-88) showed complete response with or without complete haematological recovery, and two (10%) showed partial response. The most common grade 3-4 adverse events were febrile neutropenia (22 [66%]), bloodstream infections (six [16%]), and invasive fungal infections (six [16%]). Treatment-related death occurred in one patient due to colitis and sepsis. INTERPRETATION: The safety and activity of venetoclax plus chemotherapy in paediatric patients with heavily relapsed and refractory acute myeloid leukaemia suggests that this combination should be tested in newly diagnosed paediatric patients with high-risk acute myeloid leukaemia. FUNDING: US National Institutes of Health, American Lebanese Syrian Associated Charities, AbbVie, and Gateway for Cancer Research.

Ethical issues in the care of adolescent and young adult oncology patients.

The diagnosis and treatment of cancer leads to short-term and long-term challenges for every patient. This is especially true for adolescents and young adults (AYAs) with cancer who strive to gain independence, autonomy, confidence, and social status while developing into adulthood. In this article, we review prominent ethical issues in AYA oncology that are related to autonomy, shared decision-making, care refusal or abandonment, end-of-life care, truth telling, and fertility preservation. Clinicians should recognize that AYA patients develop at their own pace; the onus lies with clinicians to determine the patient's interests, values, maturity, and desire to participate in decision-making.

Parent Management Training and Collaborative & Proactive Solutions: A Randomized Control Trial for Oppositional Youth.

This study examined the efficacy of Collaborative & Proactive Solutions (CPS) in treating oppositional defiant disorder (ODD) in youth by comparing this novel treatment to Parent Management Training (PMT), a well-established treatment, and a waitlist control (WLC) group. One hundred thirty-four youth (ages 7-14, 61.9% male, 83.6% White) who fulfilled Diagnostic and Statistical Manual of Mental Disorders (4th ed.) criteria for ODD were randomized to CPS, PMT, or WLC groups. ODD was assessed with semistructured diagnostic interviews, clinical global severity and improvement ratings, and parent report measures. Assessments were completed pretreatment, posttreatment, and at 6 months following treatment. Responder and remitter analyses were undertaken using intent-to-treat mixed-models analyses. Chronological age, gender, and socioeconomic status as well as the presence of comorbid attention deficit/hyperactivity and anxiety disorders were examined as predictors of treatment outcome. Both treatment conditions were superior to the WLC condition but did not differ from one another in either our responder or remitter analyses. Approximately 50% of youth in both active treatments were diagnosis free and were judged to be much or very much improved at posttreatment, compared to 0% in the waitlist condition. Younger age and presence of an anxiety disorder predicted better treatment outcomes for both PMT and CPS. Treatment gains were maintained at 6-month follow-up. CPS proved to be equivalent to PMT and can be considered an evidence-based, alternative treatment for youth with ODD and their families.

Fertility as a priority among at-risk adolescent males newly diagnosed with cancer and their parents.

PURPOSE: Infertility is a frequent consequence of cancer therapy and is often associated with psychological distress. Although adult survivors prioritize fertility and parenthood, this issue remains unexplored among adolescent males. This study examined future fertility as a priority (relative to other life goals) at time of diagnosis for at-risk adolescents and their parents. METHODS: Newly diagnosed adolescent males (n = 96; age = 13.0-21.9 years) at increased risk for infertility secondary to cancer treatment prioritized eight life goals: to have school/work success, children, friends, wealth, health, a nice home, faith, and a romantic relationship. Patients' parents (fathers, n = 30; mothers, n = 61) rank-ordered the same priorities for their children. RESULTS: "Having children" was ranked as a "top 3" life goal among 43.8 % of adolescents, 36.7 % of fathers, and 21.3 % of mothers. Fertility ranked third among adolescents, fourth among fathers, and fifth among mothers. Future health was ranked the top priority across groups, distinct from all other goals (ps < 0.001), and fertility ranked higher than home ownership and wealth for all groups (ps < 0.001). For adolescents, low/moderate fertility risk perception was associated with higher fertility rankings than no/high risk perceptions (p = 0.01). CONCLUSIONS: Good health is the most important life goal among adolescents newly diagnosed with cancer and their parents. In this relatively small sample, adolescents prioritized fertility as a top goal, parents also rated fertility as being more important than home ownership and financial wealth. Health care providers should communicate fertility risk and preservation options at diagnosis and facilitate timely discussion among families, who may differ in prioritization of future fertility.

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.

Case Series: Neurobehavioral Profile of Adolescents with PTEN Hamartoma Tumor Syndrome.

Background: PTEN Hamartoma Tumor Syndrome (PHTS) is a rare genetic condition caused by germline mutations in the phosphatase and tensin homologue (PTEN) gene with a phenotype that includes macrocephaly, cancer predisposition, developmental delay, increased risk for autism spectrum disorder (ASD), and learning difficulties. Studies characterizing neurobehavioral profiles are limited. Methods: This single-site, retrospective case series was completed in children who have PHTS followed in a cancer predisposition clinic. Demographic and clinical, data were abstracted from the medical record for 12 patients (mean age at clinic entry = 8.83 years; 42% female). Neuropsychological data were abstracted for 3 of 12 patients that were referred for testing (17-year-old female with attention-deficit/hyperactivity disorder [ADHD]; 15-year-old male with academic concerns and ASD, 12-year-old male with academic concerns). Results: Of the 12 patients, macrocephaly was present in 100%, 58% had developmental delays during early childhood, and 17% had an ASD diagnosis. Results from neuropsychological testing showed Borderline to Average range global intellectual functioning (Standard Score range: 77 to 95) along with deficits in non-verbal reasoning, visual-motor integration, math achievement, and caregiver-rated adaptive skills. Conclusion: Individuals with PHTS may present with cognitive difficulties that impact everyday functioning, with or without a neurodevelopmental diagnosis. Routine neurocognitive assessment should be considered in management guidelines.

Rebuilding trust.

Lack of trust is a major problem in our current health care system and is increasingly becoming a focus in the literature and in national discussions on how to better understand, address, and resolve. In this narrative essay, I share how I wrestled with rebuilding trust after my own adverse experiences with medical error, surgery complications, and communication challenges. This perspective highlights the critical importance of physician communication and trust in the patient-physician relationship.

Beginning Restorative Activities Very Early: Implementation of an Early Mobility Initiative in a Pediatric Onco-Critical Care Unit.

INTRODUCTION: Children with underlying oncologic and hematologic diseases who require critical care services have unique risk factors for developing functional impairments from pediatric post-intensive care syndrome (PICS-p). Early mobilization and rehabilitation programs offer a promising approach for mitigating the effects of PICS-p in oncology patients but have not yet been studied in this high-risk population. METHODS: We describe the development and feasibility of implementing an early mobility quality improvement initiative in a dedicated pediatric onco-critical care unit. Our primary outcomes include the percentage of patients with consults for rehabilitation services within 72 h of admission, the percentage of patients who are mobilized within 72 h of admission, and the percentage of patients with a positive delirium screen after 48 h of admission. RESULTS: Between January 2019 and June 2020, we significantly increased the proportion of patients with consults ordered for rehabilitation services within 72 h of admission from 25 to 56% (p<0.001), increased the percentage of patients who were mobilized within 72 h of admission to the intensive care unit from 21 to 30% (p=0.02), and observed a decrease in patients with positive delirium screens from 43 to 37% (p=0.46). The early mobility initiative was not associated with an increase in unplanned extubations, unintentional removal of central venous catheters, or injury to patient or staff. CONCLUSIONS: Our experience supports the safety and feasibility of early mobility initiatives in pediatric onco-critical care. Additional evaluation is needed to determine the effects of early mobilization on patient outcomes.

Clinical correlates of comorbid obsessive-compulsive disorder and depression in youth.

A burgeoning body of literature addresses the comorbidity of depression and OCD in adults. The purpose of this study was to extend this area of research to children and adolescents by examining the clinical correlates associated with co-occurring depressive disorders in a clinical sample of youth with OCD. Participants included children and adolescents seeking treatment at a university-based research clinic. One group was comprised of 28 children (ages 10-17 years) who met diagnostic criteria for OCD but had no comorbid depressive disorders, whereas the second group consisted of 28 children matched for age and gender who met diagnostic criteria for OCD and co-occurring depressive disorder. The two groups were compared on measures of broad-band psychopathology, internalizing problems, social difficulties, and family characteristics. As anticipated, findings revealed comorbid depression and OCD was associated with more severe internalizing problems, more extensive obsessive-compulsive symptomatology, and more social problems. Youth with comorbid depression and OCD also had higher family conflict and lower family organization compared to those with OCD and no depression. These results may have implications for the treatment of youth with comorbid OCD and depression.

Beyond clinical practice in pediatric psychology: Illustrative experiences in influencing practice changes, public opinion, and governmental policies.

Consistent with the core underpinnings of advocacy within the field of pediatrics, the discipline of pediatric psychology places an emphasis on advocating for children through clinical and research efforts as well as through a systems approach of interdisciplinary collaboration and partnering with others. In the current article, the role of advocacy efforts for pediatric psychologists within children's hospitals are highlighted. Various forms and models of advocacy are discussed, particularly as they relate to individual and organizational advocacy within children's hospitals, as well as interdisciplinary collaboration and shared advocacy with other health care providers and leadership. Training of pediatric psychologists in advocacy is also addressed, including limitations in development and application of advocacy skills for pediatric psychologists. Examples of policy change at the hospital/institutional, state, and national levels are also provided. While pediatric psychologists are in unique positions to advocate for their patients within interdisciplinary health care settings, challenges in advocacy exist. Future directions for improving advocacy for pediatric psychologists are explored. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Parent-child agreement in the assessment of obsessive-compulsive disorder.

The purpose of the current study was to extend research regarding parent-child agreement in the assessment of anxiety disorders to include youth with obsessive-compulsive disorder (OCD). Ninety-three children and adolescents with OCD (50 female, 43 male), ages 6 to 17 years, and their parents were administered the Anxiety Disorders Interview Schedule for Children. Data were obtained from a review of records of children and their parents seeking services from a university-based research and treatment clinic. Consistent with previous research on the assessment of anxiety disorders in youth, results indicated that parent-child agreement in the assessment of OCD is relatively poor at both the diagnostic and symptom levels. Our findings highlight the importance of multiple informant diagnostic systems in assessing childhood OCD.