Virtual Reality for Pediatric Oncology Port-A-Cath Access: A Pilot Effectiveness Study.

Introduction: Port-a-cath procedures are among the most distressing aspects of pediatric cancer treatment. The current study aimed to examine the usability of virtual reality (VR) interventions for children undergoing chemotherapy port-access procedures. Methods: Families (N = 20) of children with cancer, 4-17 years old (M = 8.70 years, SD = 3.71), were recruited. Patients and parents rated patients' dizziness, nausea, pain, and distress, and participants were shown how to use VR prior to the use of the procedure. After port-a-cath access, patients and parents rated pain and distress during the intervention. Semistructured interviews were conducted to examine the usability of the intervention. Result: A significant difference was identified for change in children's pain score for younger children, F(2, 11) = 4.16, p < .05. A significant decrease in fear scores was observed on child and parent reports. The VR headset was used during the procedure by 87.5% of the participants, while the rest used it before but took it off during the procedure, and 85.7% wished to use it again. No concerns were reported by 84.6% of the nurses and 92.3% reported no interference with their workflow. Discussion: More research is needed to fully understand the benefits of VR interventions during children's chemotherapy port procedures. The findings of this pilot study suggest that the use of commercially available VR intervention may reduce children's fear and pain levels during the port-a-cath procedure, especially for younger children.

Longitudinal Predictors of Pain in Pediatric Sickle Cell Disease.

OBJECTIVE: Despite the identified pathophysiology of vaso-occlusive pain in sickle cell disease (SCD), predictors of pain in youth with SCD remain elusive. In this study, we measured changes in pain frequency, intensity, and interference over 1 year and examined biopsychosocial risk factors (SCD disease severity, age, female, depression, and sleep quality) as possible longitudinal predictors. METHODS: Medical history was obtained from retrospective chart review for 79 children with SCD (ages 2-18 years; 48.1% female; 100% Black/African American; 83.5% SCD, SS genotype). As part of a clinical screening protocol, caregivers (n = 79) and youth 8-18 years (n = 43) completed psychosocial questionnaires approximately 1 year apart (M = 15.52 months, SD = 5.69). Zero-order correlations, paired t-tests, and hierarchical linear models examined longitudinal predictors of pain. The longitudinal bidirectional relationship between pain and sleep was also examined. RESULTS: The rate of severe SCD disease increased from 41.8% to 55.7% across the year, while most hematologic medical parameters remained stable. Increased depression and pain interference at survey 1 significantly predicted increased pain interference at survey 2. Poor sleep quality and increased pain frequency at survey 1 predicted increased pain frequency at survey 2. Finally, increased pain interference at survey 1 predicted poor sleep quality at survey 2. DISCUSSION: History of pain, depression, and sleep quality were longitudinal predictors of pain over 1 year in youth with SCD. Identifying longitudinal predictors of pain may lead to earlier identification of patients with a high-risk SCD pain phenotype and earlier medical, psychological, and behavioral interventions.

Prevalence of raised body mass index in paediatric sickle cell disease.

AIM: Children with sickle cell disease (SCD) have historically weighed less than their healthy peers. More recently, a retrospective chart review from six institutions in New England reported nearly one-quarter of children and adolescents with SCD had raised body mass index (BMI). This study aimed to examine rates of children with SCD with raised BMI in Mississippi compared to state and national norms and assess the correlation between haemoglobin and BMI. METHODS: A retrospective chart review of paediatric patients with SCD at the University of Mississippi Medical Center (UMMC) was conducted using data from the most recent clinic visit. Mississippi and national weight status estimates for youth 10-17 years were obtained from the 2016-2017 National Survey of Children's Health. RESULTS: For youth 10-17 years with SCD (n = 345), 21.4.% of children with SS/Sß° and 36.1% with SC/Sß+ had raised BMI compared to Mississippi and national rates, 39.2 and 31%, respectively. The prevalence of children with raised BMI with SC/Sß+ did not differ from state and national rates, while children with SS/Sß° were half as likely as their Mississippi peers to have raised BMI. Haemoglobin levels were different among children with SCD who had low BMI (8.80 g/dL), average BMI (9.2 g/dL) and raised BMI (10.5 g/dL) (P < 0.001). CONCLUSIONS: Children with SCD evaluated at UMMC have similar rates of raised BMI compared to state and national norms. Children with raised BMI have higher mean haemoglobin levels compared to children with SCD with low or average BMI. IMPLICATIONS AND CONTRIBUTION: Historically, patients with SCD have been underweight and normal weight. Our paediatric and adolescent patients with SCD now have prevalence rates of raised BMI that approach state and national rates. Further work must be done to determine whether this reflects healthier children with SCD or raises concerns about life-style-related comorbidities.

Impact of COVID-19 Pandemic on Timing of Childhood Cancer Diagnoses.

The COVID-19 pandemic impacted the health care system in unprecedented ways. We reviewed the registry of new cancer patients who presented to the Children's of Mississippi Center for Cancer and Blood Disorders and showed the average number of new pediatric cancer diagnoses dropped during the initial COVID-19 months and rose significantly in June 2020. We must encourage families to seek health care when needed and keep scheduled appointments for routine vaccinations and health maintenance as we know the long-term sequela of delaying health maintenance far outweighs risks at present.

Pain in long-term survivors of childhood cancer: A systematic review of the current state of knowledge and a call to action from the Children's Oncology Group.

Survivors of childhood cancer may be at risk of experiencing pain, and a systematic review would advance our understanding of pain in this population. The objective of this study was to describe: 1) the prevalence of pain in survivors of childhood cancer, 2) methods of pain measurement, 3) associations between pain and biopsychosocial factors, and 4) recommendations for future research. Data sources for the study were articles published from January 1990 to August 2019 identified in the PubMed, PsycINFO, EMBASE, and Web of Science data bases. Eligible studies included: 1) original research, 2) quantitative assessments of pain, 3) articles published in English, 4) cancers diagnosed between birth and age 21 years, 5) survivors at 5 years from diagnosis and/or at 2 years after therapy completion, and 6) a sample size >20. Seventy-three articles were included in the final review. Risk of bias was considered using the Cochrane risk of bias tool. The quality of evidence was evaluated according to Grading of Recommendations Assessment Development and Evaluation (GRADE) criteria. Common measures of pain were items created by the authors for the purpose of the study (45.2%) or health-related quality-of-life/health status questionnaires (42.5%). Pain was present in from 4.3% to 75% of survivors across studies. Three studies investigated chronic pain according the definition in the International Classification of Diseases. The findings indicated that survivors of childhood cancer are at higher risk of experiencing pain compared with controls. Fatigue was consistently associated with pain, females reported more pain than males, and other factors related to pain will require stronger evidence. Theoretically grounded, multidimensional measurements of pain are absent from the literature.

Psychometric evaluation of the pediatric applied cognition scale in pediatric hematology/oncology.

Pediatric patients with hematology and oncology conditions often experience disease- and treatment-related neurocognitive deficits. Well-validated screening tools are critical for identifying patients experiencing cognitive impairments. The Pediatric Applied Cognition scale (PAC) Short Form, developed by the National Institutes of Health, assesses attention and memory concerns. The current study is the first to examine the psychometrics of the PAC in pediatric patients with hematology/oncology conditions. Pediatric patients (n = 222) and caregivers completed the PAC and self-report measures of psychosocial and academic functioning. Results revealed strong internal consistency for the Child (α = 0.81-0.89) and Parent (α = 0.92-0.95) PAC. More cognitive concerns on the Child/Parent PAC were associated with greater psychosocial concerns (e.g. anxiety, depression, and fatigue) and lower reported school grades. The Parent PAC incrementally predicted child reported symptoms of depression, mobility concerns, and school grades beyond the Child PAC. Overall, the PAC Short Form may be useful as an indicator of general academic and psychosocial concerns. Further research validating the PAC in relation to performance-based neurocognitive outcomes and academic achievement is needed in children treated for hematology/oncology conditions.

Longitudinal pain and pain interference in long-term survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.

BACKGROUND: The objective of this study was to characterize the prevalence and risk of pain, pain interference, and recurrent pain in adult survivors of childhood cancer in comparison with siblings. METHODS: This study analyzed longitudinal data from survivors (n = 10,012; 48.7% female; median age, 31 years [range, 17-57 years]; median time since diagnosis, 23 years) and siblings (n = 3173) from the Childhood Cancer Survivor Study. Survivors were diagnosed between 1970 and 1986 at 1 of 26 participating sites. Associations between risk factors (demographics, cancer-related factors, and psychological symptoms) and pain, pain interference, and recurrent pain (5 years apart) were assessed with multinomial logistic regression. Path analyses examined cross-sectional associations between risk factors and pain outcomes. RESULTS: Twenty-nine percent of survivors reported moderate to severe pain, 20% reported moderate to extreme pain interference, and 9% reported moderate to severe recurrent pain. Female sex, a sarcoma/bone tumor diagnosis, and severe/life-threatening chronic medical conditions were associated with recurrent pain. Depression and anxiety were associated with increased risk for all pain outcomes. Poor vitality mediated the effects of anxiety on high pain and pain interference (root mean square error of approximation, 0.002). CONCLUSIONS: A large proportion of adult survivors report moderate to severe pain and pain interference more than 20 years after their diagnosis. Increased screening and early intervention for pain interference and recurrent pain are warranted.

The contribution of neurocognitive functions to academic and psychological outcomes in pediatric cancer: A latent profile analysis.

This study aimed to identify the impact of neurocognitive functioning on academic and psychological domains using a novel person-centered latent profile analysis approach. We further examined the contribution of identified risk factors (e.g., age at diagnosis, treatment) on latent class membership. 101 pediatric oncology patients and survivors (M age = 11.2, 35.6% female; 47.5% African American; M time since diagnosis = 3.4 years) completed neuropsychological evaluations at a university medical center between February 2004 and June 2017. Neurocognitive, academic, and emotional-behavioral functioning were examined using validated measures. Discreet, homogenous neurocognitive subgroups (latent classes) were identified using latent profile analysis. Demographic and medical factors were evaluated as predictors of latent class. A 3-class model indicated excellent class separation (range: .00-.04) and homogeneity (range: .94-.99). Classes were distinguished by differential cognitive patterns. Class 2 (52%) and Class 3 (25%) displayed overall normative functioning; however, Class 3 displayed significantly poorer attention than the other two classes. Class 1 (23%) demonstrated Borderline neurocognitive, low average academic, and poorer emotional-behavioral and inhibition/executive control functioning. Class membership was predicted by race and whole brain radiation dose. Latent profile analysis identified discrete groups in neurocognitive functioning in this heterogeneous pediatric cancer population. Class membership was predicted by race, whole brain radiation dose, and referral source. Other medical variables (e.g., diagnosis, age at diagnosis) were not significant predictors of neurocognitive function in our sample.

Fatigue, Physical and Functional Mobility, and Obesity in Pediatric Cancer Survivors.

BACKGROUND: Survivors of childhood cancer are prone to an increased risk of chronic issues such as cardiovascular disease, fatigue, weight-related problems, and emotional disturbances. OBJECTIVE: This study utilized the biopsychosocial model to examine the hypothesis that greater depression and lower mobility would be significantly associated with greater fatigue and higher body mass index in survivors of childhood cancer. METHODS: Data were analyzed for 144 children treated and followed up for an oncology condition at a southeastern academic medical center. Voluntarily, children completed the Patient-Reported Outcomes Measurement Information System 1.0, and parents completed the Family Symptom Inventory as part of a brief annual psychosocial screening battery. Height and weight were collected by a clinic nurse prior to questionnaire completion. RESULTS: Hierarchical linear regression showed that shorter time since diagnosis (ß = -.154, P < .05), greater child-reported depression (ß = .396, P < .01), and lower mobility (ß = .427, P < .01) significantly predicted greater fatigue (adjusted R = 0.54). Older age (ß = .262, P < .01) and not receiving chemotherapy (ß = -.209, P < .05) significantly predicted higher body mass index (adjusted R = 0.051). CONCLUSIONS: Findings showed that fatigue tends to improve over time after treatment but may be predicted by greater depression symptoms and lower mobility in recent survivors of childhood cancer. IMPLICATIONS FOR PRACTICE: For survivors of childhood cancer with higher levels of fatigue, treating symptoms of depression and maximizing physical and mobility may be of clinical value. With the impact of psychological and social factors not yet understood in pediatric cancer survivors, weight status in recent survivors of childhood cancer is likely a complex interaction between biological and treatment factors.

Daily Associations between Child and Parent Psychological Factors and Home Opioid Use in Youth with Sickle Cell Disease.

BACKGROUND: Opioid analgesics are frequently used in the home setting to manage episodic pain in youth with sickle cell disease (SCD). Given the risk of adverse side effects, including constipation and sedation, understanding factors associated with at-home opioid use is important for maximizing pain relief while minimizing negative side effects. PURPOSE: The present study aimed to evaluate the relationship between individual psychological factors (pain catastrophizing and negative affect), caregiver psychological factors (catastrophizing about child's pain and caregiver negative affect), and home opioid use in youth with SCD. METHODS: Youth with SCD (n = 32) and a caregiver (n = 28) recruited during a routine outpatient hematology visit completed electronic 14 day diaries assessing pain, opioid use, and psychological factors. RESULTS: Approximately 28% of youth (n = 9) reported pain ≥50% of diary days and a third of youth (n = 11, 34%) used opioid analgesics at least one of the diary days. The number of days opioid analgesics were used ranged from 0 to 7 (50% of diary days). Results from generalized linear mixed models indicated greater child negative affect accounted for increased odds of opioid use on a given day when accounting for pain intensity. Greater caregiver catastrophizing about children's pain was also associated with increased odds of children's opioid use. CONCLUSIONS: Child and parent psychological factors relate to child opioid use at home for SCD-related pain. Future research is warranted in larger samples to identify targets for interventions to enhance pain management while reducing opioid-related risk and side effects.

Physical Activity and Pain in Youth With Sickle Cell Disease.

Study objectives were to examine the relationships between physical activity, pain, and psychological distress in youth 8 to 17 years of age with sickle cell disease. Participants were 206 youth with sickle cell disease (M = 11.73 years, 54.9% female, 99.5% African American). Caregivers and youth completed a clinical psychosocial screening battery. Results revealed frequent pain (37.6%), moderate median pain intensity, and elevated median pain interference in youth. Lower caregiver-reported physical activity was associated with worse pain outcomes. Increased anxiety was also associated with worse pain outcomes. A better understanding of the relationship between physical activity/inactivity and pain will guide multifactorial treatment interventions.

Impact of Race and Socioeconomic Status on Psychologic Outcomes in Childhood Cancer Patients and Caregivers.

Complex relationships between race and socioeconomic status have a poorly understood influence on psychologic outcomes in pediatric oncology. The Family Symptom Inventory was used to assess symptoms of depression and anxiety in pediatric patients with cancer and their caregivers. Separate hierarchical linear regression models examined the relationship between demographic variables, cancer characteristics, socioeconomic status, and access to care and patient or caregiver depression/anxiety. Participants included 196 pediatric patients with cancer (mean age, 11.21 y; 49% African American) and their caregivers. On average, caregivers reported low levels of depression/anxiety. Symptoms of depression and anxiety in patients were correlated with poorer mental health in caregivers (r=0.62; P<0.01). Self-reported financial difficulty (ß=0.49; P<0.001) and brain cancer diagnosis for their child (ß=0.42; P=0.008) were significantly associated with depression and anxiety in caregivers. Analysis did not reveal significant associations between race, household income, or access to care and patient or caregiver depression/anxiety. Perception of financial hardship can adversely impact mental health in caregivers of children with cancer. Psychosocial assessment and interventions may be especially important for caregivers of patients with brain tumors and caregivers who report feeling financial difficulty.

Temporal relationship between daily pain and actigraphy sleep patterns in pediatric sickle cell disease.

Limited research is available on the relationship between objective sleep patterns and pain in children with SCD. Research in other chronic pain populations suggests that the effect of sleep disruption on pain may be stronger than the effect of pain on sleep that night. To examine the bi-directional relationship between objective sleep patterns and daily pain in a pediatric SCD sample. Participants were 30 African American children with SCD 8-18 years (13 ± 2.8 years; 66.7% female) with frequent pain. Children and parents completed questionnaires to assess pain, medications, and depression/anxiety. Over a 14-day period, children completed a pain diary and ambulatory actigraphy monitoring to assess nighttime sleep (duration, efficiency and WASO). Greater pain severity was associated with worse sleep efficiency and greater WASO that night, controlling for age, sex, opioid medication, and depression/anxiety symptoms. Worse sleep efficiency was associated with the occurrence of pain and more severe pain the next day. There was no relationship between WASO and pain. Similarly, sleep duration did not influence pain. Results lend support for a bi-directional relationship between sleep parameters and daily pain in pediatric SCD, and identify sleep as a potential target for future research and intervention.

Topical Review: Pain in Survivors of Pediatric Cancer: Applying a Prevention Framework.

Objective: To apply a biopsychosocial framework to understand factors influencing pain in survivors of pediatric cancer to inform pain prevention efforts and highlight the need for interdisciplinary care. Method: This topical review draws from both pediatric cancer survivorship research and chronic noncancer pain research to illustrate how components of a preventative model can be applied to pain in survivorship. Results: Pain is a common experience among long-term survivors of pediatric cancer. The pain experience in survivorship can be conceptualized in terms of biological disease and treatment factors, cognitive and affective factors, and social and contextual factors. We review literature pertinent to each of these biopsychosocial factors and tailor an existing public health prevention framework for pain in survivors of pediatric cancer. Conclusions: Classifying survivors of pediatric cancer into pain risk categories based on their daily experiences of pain, pain-related functional impairment, and distress could help guide the implementation of pain-related prevention and intervention strategies in this population. Future research is needed to establish the efficacy of screening measures to identify patients in need of psychosocial pain and pain-related fear management services, and interdisciplinary pediatric chronic pain management programs in survivors of pediatric cancer.

Daily Pain, Physical Activity, and Home Fluid Intake in Pediatric Sickle Cell Disease.

Objectives: This study examined the temporal relationship between physical activity, fluid intake, and daily pain in children with sickle cell disease (SCD) with frequent pain. Methods: A total of 30 African American children ( M age = 13.9; 53% female; 76.3% type SS) who reported pain more than or equal to once every 2 weeks and their parents completed measures of pain and anxiety/depressive symptoms. Children then completed a daily pain diary and wore a physical activity Actiwatch for 14 days at home. Results: Contrary to physiological theory-based hypotheses, lower physical activity was associated with greater pain during the same day and the next day. Less pain was associated with greater physical activity the next day. There was no relationship between self-reported home fluid intake and daily pain ( p 's < .05). Conclusions: Results lend support for a complex bidirectional relationship between physical activity and daily pain in pediatric SCD, and identify physical activity as a target for future research.

Emotional distress and burden among caregivers of children with oncological/hematological disorders.

INTRODUCTION: Caring for children with oncological and hematological disorders may lead to caregiver emotional distress and caregiver burden; however, little work has examined the relationship between children's symptoms and caregiver's distress and burden. METHOD: This study used self-report survey data from caregivers (N = 96) and a cross-sectional design to examine correlates of caregiver emotional distress and burden. Data collected included caregiver and child demographic data, child symptoms (i.e., sleep problems, pain, and emotional/behavioral problems), caregiver emotional distress, and caregiver burden. RESULTS: Multiple linear regression found that parent reported financial difficulty (ß = 0.29, t = 3.13, p = .003), greater child sleep problems (ß = 0.29 t = 2.81, p = .007), greater child pain (ß = 0.33 t = 3.48, p = .001), and greater child emotional/behavioral problems (ß = 0.27, t = 2.71, p = .009) were all related to higher levels of caregiver emotional distress. Only financial difficulties (ß = -0.35, t = -2.03, p = .04) and child pain (ß = -0.30, t = -2.33, p = .02) were related to caregiver burden. DISCUSSION: Child symptoms may play an important role in the development of caregiver distress and caregiver burden; future research should utilize longitudinal designs to examine temporal and casual relationships. (PsycINFO Database Record

Complementary and Alternative Medicine Use in Pediatric Hematology/Oncology Patients at the University of Mississippi Medical Center.

OBJECTIVE: To examine the prevalence and modalities of complementary and alternative medicine (CAM) use in children with cancer and sickle cell disease; the reasons for use of CAM; and the use of CAM before, during, and after treatment in children with cancer. METHODS: This single-center, observational study administered caregivers a written questionnaire regarding the use of CAM therapies. RESULTS: A total of 101 caregivers completed questionnaires. Including prayer, total CAM use in oncology and sickle cell disease was 64% and 63%, respectively. Non-prayer CAM use was 30% in oncology and 23% in sickle cell disease. Of respondents who reported using any CAM, the three most commonly used types were prayer (62.3% oncology; 60.0% sickle cell disease), vitamins/minerals (14.8% oncology; 10.0% sickle cell disease), and massage (9.8% oncology; 7.5% sickle cell disease). The primary reasons for using CAM were to provide hope, to improve quality of life, and to lessen adverse effects. In oncology patients, CAM use tended to increase during treatment compared with before and after treatment. CONCLUSIONS: The reported prevalence of non-prayer CAM use was lower (23%-30%) in this sample than has been reported in national samples or other geographic regions of the United States. Nonetheless, participants reported many positive reasons for using CAM, including to gain hope, improve quality of life, and control pain. Thus, CAM use appears to be an important aspect of medical care for many pediatric hematology/oncology families and should be a consideration when providers are discussing treatment and quality of care with families.

Brief neurocognitive screening in youth with brain tumours: A preliminary investigation of the Lebby-Asbell Neurocognitive Screening Examination (LANSE).

PRIMARY OBJECTIVE: It is well-documented that survivors of paediatric brain tumour are at risk for neurocognitive deficits resulting in an increased interest in neurocognitive assessment for these youth. Given the scarcity of well-validated brief assessments for this purpose, this study examines the reliability and validity of a brief neurocognitive screening measure. RESEARCH DESIGN: Cross-sectional data on youth (aged 6-17.9) administered a brief neurocognitive screening device and broader neurocognitive batteries was collected via chart review to evaluate the reliability and validity of a brief neurocognitive screening device. METHODS AND PROCEDURES: Fifty-one youth with brain tumours and 26 youth with traumatic brain injury (TBI) were administered The Lebby-Asbell Neurocognitive Screening Examination (LANSE) during clinic visits. A sub-set of children were administered a more comprehensive neurocognitive evaluation and scores from the LANSE and these evaluations were compared to assess preliminary validity. MAIN OUTCOME AND RESULTS: Most LANSE sub-scales demonstrated adequate reliability and preliminary validity with some exceptions. Comparison of youth with brain tumours to those with a TBI revealed a similar pattern of potential neurocognitive impairment across several cognitive domains. CONCLUSIONS: This study demonstrates the preliminary reliability and validity of a brief neurocognitive screening examination for youth with brain tumours.

Development of the family symptom inventory: a psychosocial screener for children with hematology/oncology conditions.

A growing body of literature has begun to underscore the importance of integrating family-based comprehensive psychological screening into standard medical care for children with oncology and hematology conditions. There are no known family-based measures designed to screen for clinically significant emotional and behavioral concerns in pediatric oncology and hematology patients. The aim of this study was to develop and evaluate the Family Symptom Inventory (FSI), a brief screener of patient and family member psychological symptoms. The FSI also screens for common comorbid physical symptoms (pain and sleep disturbance) and is designed for use at any point during treatment and follow-up. A total of 488 caregivers completed the FSI during regular hematology/oncology visits for 193 cancer, 219 sickle cell disease, and 76 hematology pediatric patients. Exploratory factor analysis, confirmatory factor analysis, and tests of reliability and preliminary validity were conducted. Exploratory factor analysis suggested a 34-item, 4-factor solution, which was confirmed in an independent sample using confirmatory factor analysis (factor loadings=0.49 to 0.88). The FSI demonstrated good internal reliability (α's=0.86 to 0.92) and good preliminary validity. Regular psychosocial screening throughout the course of treatment and follow-up may lead to improved quality of care for children with oncology and hematology conditions.