Social adjustment in children diagnosed with sickle cell disease: A retrospective study.

BACKGROUND: Children with sickle cell disease (SCD) are at risk for physical, psychological, and social adjustment challenges. This study sought to investigate social adjustment and related factors in children living with SCD. METHODS: Data from 32 children (50% male, mean age = 10.32 years, SD = 3.27) were retrospectively collected from a neuropsychology clinic at a tertiary care pediatric hospital. Social adjustment was measured using the Behavior Assessment System for Children (BASC-3) parent-proxy, withdrawal subscale, and the Pediatric Quality of Life Inventory (PedsQL) Generic Module Social Functioning self- and parent-proxy subscales. Other measures captured executive functioning (i.e., Behavior Rating Inventory of Executive Function, Second Edition (BRIEF-2) Parent Form) and non-disease-related associations with social adjustment, including number of years in Canada and family functioning (i.e., PedsQL Family Impact Module). RESULTS: Sixteen percent of patients reported elevated social adjustment difficulties. Multiple linear regression found better family functioning [B = .48, t = 2.65, p = .016], and higher executive functioning [B = -.43, t = -2.39, p = .028] were related to higher scores on the PedsQL parent-proxy ratings of social adjustment [F(4,18) = 5.88, p = .003]. Male sex [B = .54, t = 3.08, p = .005], and having lived more years in Canada [B = .55, t = 2.81, p = .009], were related to higher PedsQL self-reported social adjustment [F(4,23) = 3.75, p = .017]. The model examining the BASC-3 withdrawal subscale was not statistically significant [F(4,16) = 1.63, p = .22]. IMPLICATIONS: Social adjustment in children diagnosed with SCD warrants future research to understand the influence of executive function, and non-disease-related factors, particularly focusing on sociocultural factors.

Pediatric Hematopoietic Cell Transplantation: A Longitudinal Assessment of Health-Related Quality of Life of Pediatric Donors.

Pediatric donors may be at increased risk of psychological and social challenges following hematopoietic cell transplantation (HCT). Through a retrospective chart review, we evaluated the health-related quality of life (HRQL) of pediatric donors over time and examined facilitators and barriers to implementing a longitudinal psychosocial assessment. Fifty-one pediatric donors (M = 10.7 years, SD = 3.7) completed an HRQL questionnaire across six time points (T1 to T6) from prior to donation to 2 years after. Change in mean scores was assessed using a linear mixed-effect model for repeated measures design. Facilitators and barriers to implementation were examined. HRQL of pediatric donors improved between T1 and T6 with significant change in physical, emotional, and overall functioning. Facilitators to retention included the support of a clinical coordinator. Barriers to implementation included the absence of infrastructure to maintain contact with pediatric and their families. HRQL of pediatric donors of HCT improved steadily over time. Pattern of results suggests a need to further explore factors that contribute to change across time. Development of a longitudinal standardized assessment protocol that can be prospectively and feasibly implemented is integral to supporting the well-being of this group.

Health related quality of life in children with sickle cell disease: A systematic review and meta-analysis.

This review had three aims: 1) describe the measures used to assess health-related quality of life (HRQL) in pediatric patients diagnosed with sickle cell disease (SCD); 2) document the biopsychosocial factors related to HRQL in pediatric patients diagnosed with SCD; and 3) complete a meta-analysis comparing HRQL in pediatric patients diagnosed with SCD to healthy controls. Included studies were published in English, quantitatively assessed HRQL as a primary aim, in both SCD and controls, and included participants between 0 and 21 years of age. The final review included 66 articles, with a total of 8642 participants with SCD, 4 months-21 years of age, and 62,458 controls, 5-27 years of age. HRQL was predominately measured using the Pediatric Quality of Life Inventory Generic Core and Sickle Cell Disease Module. Meta-analyses revealed children with SCD had significantly worse HRQL compared to healthy controls (standardized mean difference = -0.93, 95% CI = -1.25, -0.61, p < 0.00001). Worse HRQL was associated with more severe SCD, female sex, and pain. The findings indicate that children with SCD are at risk for worse HRQL compared to their healthy peers and their HRQL may be impacted by several biopsychosocial factors. Future research is needed to examine how sociocultural factors uniquely impact this population and their overall quality of life.

Psychosocial risk, symptom burden, and concerns in families affected by childhood cancer.

PURPOSE: The revised Psychosocial Assessment Tool (PATrev) is a common family-level risk-based screening tool for pediatric oncology that has gained support for its ability to predict, at diagnosis, the degree of psychosocial support a family may require throughout the treatment trajectory. However, ongoing screening for symptoms and concerns (e.g., feeling alone, understanding treatment) remains underutilized. Resource limitations necessitate triaging and intervention based on need and risk. Given the widespread use of the PATrev, we sought to explore the association between family psychosocial risk, symptom burden (as measured by the revised Edmonton Symptom Assessment System (ESAS-r)), and concerns (as measured by the Canadian Problem Checklist (CPC)). METHODS: Families (n = 87) with children ≤ 18 years of age (M = 11.72, male: 62.1%) on or off treatment for cancer were recruited from the Alberta Children's Hospital. One parent from each family completed the PATrev and the CPC. Participants 8-18 years of age completed the ESAS-r. RESULTS: Risk category (universal/low risk = 67.8%, targeted/intermediate risk = 26.4%, clinical/high risk = 5.7%) predicted symptom burden (F[2, 63.07] = 4.57, p = .014) and concerns (F[2, 82.06] = 16.79, p < .001), such that universal risk was associated with significantly lower symptom burden and fewer concerns. CONCLUSION: Family psychosocial risk is associated with cross-sectionally identified concerns and symptom burden, suggesting that resources might be prioritized for families with the greatest predicted need. Future research should evaluate the predictive validity of the PATrev to identify longitudinal concerns and symptom burden throughout the cancer trajectory.

Associations Among Health Behaviors and Psychosocial Outcomes in Adolescent and Young Adult Cancer Survivors.

Purpose: Adolescents and young adults (AYA) experience challenges both during and after their cancer treatment. Health behaviors are important contributors to health, yet little research examines health behaviors in AYA cancer survivors. We examined frequencies of health behaviors and associations between health behaviors, psychosocial, and clinical factors in AYA cancer survivors. Methods: Participants were survivors of AYA cancer (n = 60; 38.3% male; mean age = 25.3 years [standard deviation, SD = 4.6]; mean years since therapy completion = 9.0 [SD = 4.2]) from the Alberta Children's Hospital (ACH). Survivors were 13-21 years old at the time of diagnosis. Measures included demographic and clinical data, and the ACH Long-Term Survivor's Questionnaire. Health behaviors were compared with a control group (n = 600) using data from the 2017 Canadian Community Health Survey. Frequencies, conditional logistic regression, and logistic regression analyses were conducted. Results: Compared with controls, survivors reported engaging in physical activity (91.5% vs. 87.5%; odds ratio [OR] = 0.87, 95% confidence interval [CI] = 0.34-2.24; p = 0.77), smoking tobacco (15.3% vs. 19.7%; OR = 1.85, 95% CI = 0.89-3.85; p = 0.10), and street drug use (27.6% vs. 36.5%; OR = 1.60, 95% CI = 0.88-2.91; p = 0.12) at the same rate. Survivors reported binge drinking significantly less (61.0% vs. 76.6%; OR = 0.53, 95% CI = 0.30-0.92; p = 0.024) than controls. Logistic regression analyses revealed a significant model predicting binge drinking [χ2(5, 58) = 23.17, p < 0.001] with greater time off treatment, fear of another health condition, and higher mean body mass index emerging as significant predictors. Conclusion: AYA cancer survivors engage in risky health behaviors at rates similar to their peers. Further research is needed to understand factors mediating survivors' decision to participate in risky health behaviors.