Measuring neurobehavioral side effects of corticosteroids in pediatric acute lymphoblastic leukemia: A scoping review.

Corticosteroids are essential to curative acute lymphoblastic leukemia (ALL) treatment, yet have significant neuropsychiatric side effects that decrease quality of life for patients and families. We conducted a scoping review, following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines, to describe the existing measurement tools used to evaluate neurobehavioral side effects of corticosteroids in pediatric ALL. From various databases and registers, 4047 studies were identified. Twenty-four articles met inclusion criteria. Clinical assessment was most used to evaluate these symptoms. Twelve validated measures were identified. Existing data about neuropsychiatric side effects of corticosteroids in pediatric ALL are extremely heterogeneous, creating challenges for standardized assessment and management.

Validation of the Psychosocial Assessment Tool Sibling Module Follow-Up Version.

OBJECTIVE: Psychosocial screening is recommended to connect siblings of youth with cancer to psychosocial services, but the lack of validated sibling-specific screening tools is a barrier to routine screening. The current study aimed to validate and establish a clinical cutoff for the recently developed Psychosocial Assessment Tool (PAT) Sibling Module follow-up version to address this barrier. METHODS: Parents (N = 246) completed the PAT Sibling Module follow-up version for all siblings within their families ages 0-17 years (N = 458) at three time points between 6- and 24-month post-cancer diagnosis. For one target sibling within each family aged 8-17 years, parents also completed the Strengths and Difficulties Questionnaire, and the target sibling completed the Child PTSD Symptom Scale. Cross-sectional and longitudinal analyses examined internal consistency and convergent and predictive validity. Receiver operator characteristic analyses were used to establish a maximally sensitive and specific clinical cutoff. RESULTS: Internal consistency was acceptable for all age versions (Kuder-Richardson 20s ≥ 0.79), except for the ages 0-2 version, which had low internal consistency at 18 months post-diagnosis (Kuder-Richardson 20 = 0.57). Convergent (r values >0.7, p values <.001) and predictive (r values >0.6, p values <.001) validity were strong at each time point. An optimal clinical cutoff of 0.32 was identified (range: 0.00-1.00). CONCLUSIONS: The PAT Sibling Module follow-up version is a reliable and valid screener for sibling psychosocial risk following cancer diagnosis. Validation of a sibling-specific screener and establishment of a clinical cutoff are necessary first steps to addressing siblings' unmet psychosocial needs and improving trajectories of sibling functioning.

Initial validation of a new psychosocial screener for siblings of youth with cancer: The Psychosocial Assessment Tool Sibling Modules.

OBJECTIVE: Psychosocial screening can facilitate the identification of families who have difficulty adjusting to and managing serious pediatric illness. Despite siblings' roles within the family and increased psychosocial risk, a systematic approach to screening siblings of youth with cancer remains rare. One barrier to systematic sibling screening is the lack of a validated screener. We aimed to establish initial validity of the new parent-reported Psychosocial Assessment Tool (PAT) Sibling Modules for siblings ages 0-2, 3-4, 5-9, and 10+. METHODS: Families (N = 64) completed the PAT Sibling Modules and the Strengths and Difficulties Questionnaire (SDQ) regarding siblings' functioning at cancer diagnosis (13-23 items, depending on age version) and 6 months later (17-42 items). Cross-sectional and longitudinal analyses examined internal consistency and convergent and predictive validity of the PAT Sibling Modules. RESULTS: Baseline and follow-up versions of the modules have strong internal consistency (Kuder-Richardson 20 range: 0.82-0.93) and convergent validity at diagnosis (r-values ≥0.4, p-values <0.01) and follow-up (r-values >0.4, p-values <0.05). Predictive validity was supported by significant correlations between baseline PAT Sibling Module scores and 6 month SDQ scores (r = 0.86, p < 0.001). CONCLUSIONS: Findings provide initial evidence that the PAT Sibling Modules are valid measures of sibling psychosocial risk. Availability of a validated screener is a first step toward addressing siblings' unmet psychosocial needs.

Adaptation and Psychometric Evaluation of the Parenting Concerns Questionnaire-Advanced Disease.

PURPOSE: When patients with advanced cancer have minor children (age < 18), their health-related quality of life is closely linked to their concerns about the impact of progressive illness and death on their children. The Parenting Concerns Questionnaire (PCQ), a validated measure for parents with cancer, does not capture the full range of concerns in advanced cancer. The aim of this was study was to adapt and establish psychometrics for the PCQ for advanced disease (PCQ-AD). METHODS: After generating an initial item-bank, we conducted concept elicitation interviews with clinicians (n = 8) and cognitive interviews with patients (n = 23) for face validity. New items addressed concerns about impact of parental death, making every moment count, communication, and financial impact of cancer on children. We administered 21 candidate items to 151 parents with advanced cancer. We conducted confirmatory factor analysis (CFA), calculated internal consistency, and assessed convergent and known-groups validity. RESULTS: We removed 8 redundant items due to residual covariation between items. CFA of the 13-item PCQ-AD demonstrated satisfactory fit (CFI = 0.971, TLI = 0.966, RMSEA = 0.081) and high internal consistency (Cronbach's alpha = 0.94, composite reliability = 0.95). The PCQ-AD demonstrated convergent validity and known-groups validity; patients with poor functional status reported higher scores than patients with better functional status (Cohen's d = 0.56, p = 0.002). CONCLUSION: Adaptation of the PCQ yielded the addition of constructs important in advanced cancer. The PCQ-AD appears to be a reliable and valid measure of parenting concerns in advanced cancer, but future studies are needed to examine measure performance in diverse populations and responsiveness of the PCQ-AD to interventions.

Disparities in pediatric psychosocial oncology utilization.

BACKGROUND: Integratedbehavioral health models have been proposed as care delivery approaches to mitigate mental health disparities in primary care settings. However, these models have not yet been widely adopted or evaluated in pediatric oncology medical homes. METHODS: We conducted a retrospective cohort study of 394 children with newly diagnosed cancer at Dana-Farber/Boston Children's Cancer and Blood Disorders Center (DF/BCH) from April 2013 to January 2017. Baseline sociodemographic characteristics and psychiatry utilization outcomes at 12 months following diagnosis were abstracted from the medical record. The severity of household material hardship (HMH), a concrete poverty exposure, at diagnosis and race/ethnicity were characterized by parent report using the Psychosocial Assessment Tool 2.0 (PAT). Associations between sociodemographic characteristics and receipt of psychiatry consultation were assessed with multivariable logistic regression models. RESULTS: Among 394 children, 29% received a psychiatric consultation within 12 months postdiagnosis. Of these, 88% received a new psychiatric diagnosis, 76% received a psychopharmacologic recommendation, and 62% received a new behavioral intervention recommendation. In multivariable logistic regression adjusting for age, cancer diagnosis, and PAT total score, there was no statistically significant association between HMH severity or household income and psychiatry utilization. Children who identified as racial/ethnic minorities were significantly less likely to receive a psychiatry consultation (OR = 0.48, 95% CI = 0.27-0.84). CONCLUSIONS: In a pediatric oncology medical home with an integrated behavioral health model, socioeconomic status was not associated with disparate psychiatry utilization. However, there remained a profound racial/ethnic disparity in psychiatry utilization, highlighting the need for additional research and care delivery intervention.

Burnout in psychosocial oncology clinicians: A systematic review.

OBJECTIVE: Few studies have examined burnout in psychosocial oncology clinicians. The aim of this systematic review was to summarize what is known about the prevalence and severity of burnout in psychosocial clinicians who work in oncology settings and the factors that are believed to contribute or protect against it. METHOD: Articles on burnout (including compassion fatigue and secondary trauma) in psychosocial oncology clinicians were identified by searching PubMed/MEDLINE, EMBASE, PsycINFO, the Cumulative Index to Nursing and Allied Health Literature, and the Web of Science Core Collection. RESULTS: Thirty-eight articles were reviewed at the full-text level, and of those, nine met study inclusion criteria. All were published between 2004 and 2018 and included data from 678 psychosocial clinicians. Quality assessment revealed relatively low risk of bias and high methodological quality. Study composition and sample size varied greatly, and the majority of clinicians were aged between 40 and 59 years. Across studies, 10 different measures were used to assess burnout, secondary traumatic stress, and compassion fatigue, in addition to factors that might impact burnout, including work engagement, meaning, and moral distress. When compared with other medical professionals, psychosocial oncology clinicians endorsed lower levels of burnout. SIGNIFICANCE OF RESULTS: This systematic review suggests that psychosocial clinicians are not at increased risk of burnout compared with other health care professionals working in oncology or in mental health. Although the data are quite limited, several factors appear to be associated with less burnout in psychosocial clinicians, including exposure to patient recovery, discussing traumas, less moral distress, and finding meaning in their work. More research using standardized measures of burnout with larger samples of clinicians is needed to examine both prevalence rates and how the experience of burnout changes over time. By virtue of their training, psychosocial clinicians are well placed to support each other and their nursing and medical colleagues.

Risk factors for steroid-induced affective disorder in children with leukemia.

Corticosteroids are essential to treating childhood acute lymphoblastic leukemia (ALL), and can cause significant neuropsychiatric side effects. This retrospective chart review is a preliminary exploration of characteristics associated with psychiatry consultation and steroid-induced affective disorder (SIAD) during ALL treatment. Of 125 ALL patients (ages 1-10 years), 56 (44.8%) received psychiatry consultation. Thirty-nine (31.2%) of the total cohort were diagnosed with SIAD. SIAD was significantly associated with family psychiatric history, but not with steroid exposure, CNS radiation, sociodemographic factors, developmental delay, Trisomy 21, or prior psychiatric history. Gathering family psychiatric history may help identify children at increased risk of SIAD.

Longitudinal Patterns of Social Problem-Solving Skills in an Ethnically Diverse Sample of Pediatric Patients with Cancer and their Caregivers.

Pediatric patients with acute lymphoblastic leukemia and lymphoblastic lymphoma are prescribed a daily oral chemotherapy medication named 6-mercaptopurine. Adherence to this medication is vital for survival and decreased risk for disease relapse. Adaptive problem-solving strategies are important for adhering to this complex regimen. This manuscript examined ethnic and racial differences in social problem-solving domains (Social Problem-Solving Inventory) among patients aged 7-19 years old who were diagnosed with cancer; and, their caregivers (N = 139). This was a 15-month longitudinal study. We also examined differences in medication adherence based on behavioral adherence measures. Our study found significant differences between minority and non-minority reporters across multiple social problem-solving domains (p < 0.05). However, there were no significant differences observed for medication adherence. Our findings underscore the importance of implementing culturally sensitive interventions in clinical care that could ultimately positively impact health behaviors, interactions with healthcare providers, and long-term health outcomes.

What do surviving children wish for from a dying parent? A qualitative exploration.

Legacy may play an important role in how children integrate the loss of a parent. Sixteen adults (19-40 years old, 69% women) who experienced the death of a parent from an illness before age 12 were interviewed, exploring legacies from their deceased parent. Transcribed interviews were iteratively analyzed by three independent coders. Extracted themes described their experiences and wish for remembrances and specific communication left for them, information about the parent's values and feelings about them, and personal possessions. This study provides novel data about legacies that bereaved children wish for in adulthood.

Parental awareness of sibling adjustment: Perspectives of parents and siblings of children with cancer.

Childhood cancer is a significant psychosocial stressor, and sibling adjustment ranges from resilience to clinically significant psychopathology. Siblings and parents often describe siblings' psychosocial functioning differently, which may reflect parental unawareness of siblings' adjustment to cancer and increase the risk for negative sibling outcomes. The present study characterizes siblings' and parents' perceptions of parents' awareness of siblings' psychosocial functioning and describes how family functioning influences parental awareness. Parents (N = 13) and siblings (N = 17, ages 8-17) from 13 families completed in-depth qualitative interviews regarding siblings' psychosocial adjustment to cancer. Interviews were coded for dimensions of family functioning based on the McMaster Model and analyzed using applied thematic analysis. Families were stratified based on higher or lower levels of parental awareness (i.e., knowledge of the presence, severity, or content of siblings' cancer-related feelings). Themes related to communication, affective involvement, roles, problem-solving, and affective responsiveness influenced parental awareness. Parental awareness was hindered by siblings' reluctance to communicate their feelings to parents due to the messages they received about cancer (e.g., be positive/helpful), siblings' hesitancy to rely on parents for emotional support, and parents not consistently asking about siblings' emotions. Additionally, parents' cancer-related stress and family disruptions reduced parental focus on siblings and decreased parents' tolerance of siblings' negative emotions. Higher parental awareness was facilitated by closer relationships prediagnosis, consistent communication, and affective problem-solving in response to cancer-related changes. Findings provide a more comprehensive understanding of the family processes underlying parental awareness and inform best practices for sibling assessment and support. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Parental psychological distress and cancer stage: a comparison of adults with metastatic and non-metastatic cancer.

PURPOSE: Parents with cancer have unique and often under-recognized psychological distress about the impact of their illness on their children. Relatively little is known about how parenting concerns may differ among patients by cancer stage. METHODS: This is a secondary data analysis of 203 adults with cancer who had children < 18 years old from two geographically distinct areas. We used an analysis of covariance to estimate the mean differences in PCQ, depression symptom severity and anxiety symptom severity (Hospital Anxiety and Depression Scale, HADS) scores between participants with metastatic and non-metastatic disease, and Pearson's correlation coefficients to assess associations between HADS and PCQ scores by cancer stage. RESULTS: Seventy-two percent of participants (n = 146) had metastatic solid tumor cancer. In adjusted analyses, mean PCQ scores did not significantly differ between parents with metastatic and non-metastatic disease (2.0 vs. 2.2, p = 0.06). Differences in mean PCQ scores were driven by a single question concerning the impact of death on children (2.3 vs. 2.9, p = 0.004). Mean HADS scores did not significantly differ between groups, although PCQ scores explained a greater amount of variance in HADS scores for the metastatic group as compared to the non-metastatic group. CONCLUSIONS: With the exception of concerns about death, intensity of parenting concerns, as measured by the PCQ, was similar between parents with metastatic and non-metastatic cancer. However, parenting concerns may be more strongly linked to overall psychological distress in patients with metastatic disease. Further research is needed to clarify how parenting concerns uniquely relate to advanced stage illness.

The multidisciplinary pediatric psycho-oncology workforce: A national report on supervision for staff and training opportunities.

OBJECTIVE: This paper presents data on licensure/certification status, supervision of multidisciplinary pediatric psychosocial staff, and training opportunities in pediatric cancer programs in the United States, data that are critical to provide care aligned with the Standards of Psychosocial Care in Pediatric Cancer (Psychosocial Standards). METHODS: An online survey of psychosocial care consistent with the Psychosocial Standards was completed from a national sample of pediatric cancer programs (144/200). Licensure/certification status, availability and format of supervision for multidisciplinary staff (social workers, psychologists, psychiatrists, child life specialists/recreational therapists), and types and number of psychosocial trainees were reported. RESULTS: Nearly all pediatric psychosocial providers were licensed/certified. Peer consultation was the most frequently endorsed form of staff supervision although a sizeable group of centers reported no systematic ongoing supervision. Trainees in social work and child life were most common although the size of trainee cohorts is generally small. Psychosocial trainees are more prevalent in sites with pediatric hematology/oncology medical fellowship programs and in larger programs. CONCLUSIONS: A properly trained and supported psychosocial workforce is essential to providing evidence-based care consistent with the Psychosocial Standards. Psychosocial providers are appropriately licensed. However, supervision opportunities are variable and may be inadequate for the intensity of the work. It is important to address the limited opportunities for trainees in pediatric cancer programs, which may influence the pipeline for ongoing and future work in this area.

The "Liaison" in Consultation-Liaison Psychiatry: Helping Medical Staff Cope with Pediatric Death.

Pediatric consultation-liaison clinicians are well positioned to provide support, guidance, and systemic recommendations about how to help medical clinicians cope with the stresses of working with dying children. Interventions to support sustainability in this work need to occur at the institutional and team-based levels as well as in individual practice. Shared clinical work around challenging cases provides opportunities to engage with medical clinicians about their difficult experiences and provide reflection and support. Psychiatry services may also be in a role of advocating for institutionally based interventions that can help their medical colleagues.

Feasibility of systematic poverty screening in a pediatric oncology referral center.

BACKGROUND: Based on the strong link between poverty and child health outcomes, both the American Academy of Pediatrics (AAP) and national pediatric oncology associations have advocated for routine clinical poverty screening. Systematic implementation of this recommendation in pediatric oncology is not yet standard, and feasibility data are needed. We report the feasibility of routine poverty screening in a pediatric oncology referral center and baseline poverty characteristics of this population. METHODS: From 2013 to 2017, 448 families with newly diagnosed pediatric cancer at Dana-Farber/Boston Children's Cancer and Blood Disorders Center were offered the Psychosocial Assessment Tool 2.0 (PAT) as part of routine care. The PAT includes a two-item screen for household material hardship (HMH). All families were asked about annual household income by a resource specialist. Data were abstracted with sociodemographic and child/disease characteristics. Descriptive statistics are reported. RESULTS: Four hundred and thirteen families completed the PAT (response rate 92%), of whom 394 (95%) completed specific questions assessing for HMH. Ninety-four percent of families who met with a resource specialist disclosed their annual household income. One quarter (27%) of families was ≤200% federal poverty level at diagnosis, and 44% of families endorsed at least one domain of HMH. The most frequent domains of HMH included housing (24%), utilities (20%), and transportation (20%). CONCLUSIONS: Systematic poverty screening per AAP and pediatric oncology psychosocial standards of care is feasible in routine cancer care. There is a high baseline incidence (44%) of HMH in at least one domain in families with newly diagnosed pediatric cancer who may benefit from early identification and resource intervention.

Development of a Psychosocial Risk Screener for Siblings of Children With Cancer: Incorporating the Perspectives of Parents.

Objective: Although many siblings experience distress after a child's cancer diagnosis, their psychosocial functioning is seldom assessed in clinical oncology settings. One barrier to systematic sibling screening is the lack of a validated, sibling-specific screening instrument. Thus, this study developed sibling-specific screening modules in English and Spanish for the Psychosocial Assessment Tool (PAT), a well-validated screener of family psychosocial risk. Methods: A purposive sample of English- and Spanish-speaking parents of children with cancer (N = 29) completed cognitive interviews to provide in-depth feedback on the development of the new PAT sibling modules. Interviews were transcribed verbatim, cleaned, and analyzed using applied thematic analysis. Items were updated iteratively according to participants' feedback. Data collection continued until saturation was reached (i.e., all items were clear and valid). Results: Two sibling modules were developed to assess siblings' psychosocial risk at diagnosis (preexisting risk factors) and several months thereafter (reactions to cancer). Most prior PAT items were retained; however, parents recommended changes to improve screening format (separately assessing each sibling within the family and expanding response options to include "sometimes"), developmental sensitivity (developing or revising items for ages 0-2, 3-4, 5-9, and 10+ years), and content (adding items related to sibling-specific social support, global assessments of sibling risk, emotional/behavioral reactions to cancer, and social ecological factors such as family and school). Conclusions: Psychosocial screening requires sibling-specific screening items that correspond to preexisting risk (at diagnosis) and reactions to cancer (several months after diagnosis). Validated, sibling-specific screeners will facilitate identification of siblings with elevated psychosocial risk.

The Effectiveness of a Hospital-Based School Liaison Program: A Comparative Study of Parental Perception of School Supports for Children With Pediatric Cancer and Neurofibromatosis Type 1.

Childhood survivors of central nervous system (CNS) cancers (defined as cancers whose diagnosis or treatment affect the CNS) are at increased risk for educational related difficulties, as are children affected by neurofibromatosis type 1. This study evaluated the effectiveness of and satisfaction with a model of psychoeducation, consultation, and advocacy provided by a School Liaison Program (SLP) for families and schools of children with CNS-involved cancers compared with a control group of parents of children with a diagnosis of neurofibromatosis type 1 who did not receive school-based services. Results indicated significant between-group differences in parents' belief that their child is meeting academic potential, with parents who received SLP services reporting greater satisfaction with their child's progress, better understanding of their child's learning needs, and an increased ability to access school supports. The strong, positive impact associated with the consultation, psychoeducation, and parental advocacy training provided by the SLP suggests that a similar model of care would potentially benefit other groups of children whose neurocognitive functioning is compromised by chronic medical conditions.