Knowledge of Required Medical Surveillance Among Adolescent and Young Adult Survivors of Childhood Cancer.

PURPOSE: Adolescent and young adult (AYA) cancer survivors experience treatment-related late effects so guidelines recommend providing a treatment summary, yearly follow-up, and risk-adapted testing. AYA survivors' knowledge of surveillance follow-up was studied. RESULTS: Survey responses for 73 AYAs were stratified: low (0 to 1 correct; n=18; 24.7%) versus high knowledge (2 to 4 correct; n=55; 75.3%) of their required testing. Patient-reported Outcomes Measurement Information System (PROMIS) scores fell within average ranges for participant age ( T -scores: 52.4 for physical function, 49.3 for anxiety, 46.3 for depression, and 44.7 for fatigue). Younger age at survivorship visit was a significant predictors of improved knowledge scores. CONCLUSION: Despite attendance at a survivorship clinic, minority of participants (9.5%) demonstrated complete knowledge of surveillance testing needs. Most survivors are aware of some of their surveillance needs. PROMIS scores were not associated with surveillance knowledge.

Examining Indirect Effects of Anxiety on Glycated Hemoglobin via Automatic Negative Thinking and Diabetes-Specific Distress in Adolescents With Type 1 Diabetes.

OBJECTIVES: In this study, we examined the indirect effects of anxiety on glycated hemoglobin (A1C) via automatic negative thinking and diabetes distress among adolescents with type 1 diabetes (T1D) during the follow-up interval of a randomized controlled trial of an intervention targeting resilience promotion/depression prevention. METHODS: Adolescents (N=264) participating in the Supporting Teen Problem Solving clinical trial were included and assessed at 8, 12, 16 and 28 months postbaseline. A serial, double-mediation model was used to examine path effects from anxiety to A1C through automatic negative thinking, through diabetes distress and through both automatic negative thinking and diabetes distress. Relevant demographic and clinical covariates were included. RESULTS: Anxiety significantly predicted increases in both automatic negative thinking and diabetes distress. Automatic negative thinking was not found to mediate the association between anxiety and A1C, but diabetes distress did mediate the association. The double-mediation path through automatic negative thinking and diabetes distress together was significant. The indirect effect of anxiety on A1C through diabetes distress was significant and greater than the indirect effect of the double-mediator path. Anxiety did not predict A1C independent of its effects on automatic negative thinking and diabetes distress. Inclusion of demographic covariates did not substantively change the results. CONCLUSIONS: Analyses suggest that automatic negative thinking and diabetes distress mediate the relationship between anxiety and A1C among adolescents with T1D. Diabetes distress appears to be a robust factor linking anxiety to A1C. Diabetes distress should be further examined as a mediator of glycemic variability in anxious youth with T1D.

Psychosocial Aspects of Diabetes Technology Use: The Child and Family Perspective.

This article offers a systematic review of the literature on psychosocial aspects of technology use in children and adolescents with type 1 diabetes and their families, searching for relevant articles published the past 5 years. Topics included continuous subcutaneous insulin infusion, continuous glucose monitoring, predictive low-glucose suspend, and artificial pancreas systems. The review indicates there are positive and negative psychosocial aspects to diabetes technology use among youth and their families. Although consistent findings were revealed, contradictions exist. Discussed are recommendations for future research and implications for how health care providers can collaborate with families to discuss and manage diabetes technology.

You, me, and diabetes: Intimacy and technology among adults with T1D and their partners.

OBJECTIVE: Limited research has examined the impact of technology on intimacy and relationships among individuals with type 1 diabetes (T1D). The current study examined the experiences of individuals with T1D and their partners and evaluated the expectations for how advances in technology such as automated insulin delivery systems may impact physical intimacy. METHOD: The Insulin Delivery Systems: Perceptions, Ideas, Reflections and Expectations (INSPIRE) study is a multisite study examining expectations for automated insulin delivery systems among adults and youth with T1D as well as partners and caregivers. For the current analysis, data regarding the impact of diabetes on relationship intimacy were extracted from focus groups or individual semistructured interviews with adults with T1D (n = 113) and partners of individuals with T1D (n = 55). RESULTS: Three independent coders conducted thematic analysis utilizing NVivo software. Two primary themes were identified: vulnerability in romantic relationships because of managing diabetes and the unique challenges of physical intimacy because of the use of diabetes technology. CONCLUSIONS: Participants expressed the hope that diabetes technology, and automated insulin delivery systems in particular, will offer opportunities for flexibility in their diabetes management. These options may decrease their sense of vulnerability through provision of greater control over diabetes management and when/whether to disclose diabetes, minimizing discomforts in the context of sexual intimacy, and reduction of fear about diabetes complications. Patient-reported outcomes and expectations for diabetes technology should be incorporated into patient-provider conversations about sensitive issues. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Patient-Reported and Parent Proxy-Reported Outcomes in Pediatric Medical Specialty Clinical Settings: A Systematic Review of Implementation.

OBJECTIVE: Youth with chronic illness are at higher risk for psychosocial difficulties, leading to a call for screening via patient-reported outcomes (PROs). The purpose of the current review is to summarize PRO implementation in pediatric medical specialty settings. A literature review of PRO implementation in these settings, conceptual issues, value and approach, legal and ethical concerns, as well as a case example of PROA in type 1 diabetes are presented. METHODS: A systematic review was conducted to identify relevant articles published since the most recent Journal of Pediatric Psychology Special Issue on Evidence-Based Assessment in Pediatric Psychology (2008). RESULTS: Thirty-two articles were identified and reviewed. The majority of studies reported that PROA was feasible, did not disrupt clinic flow, identified psychosocial issues warranting intervention, and was acceptable to families and providers. Response to elevated scores and impact on behavioral health referrals varied. CONCLUSION: While many evidenced-based assessment measures are well-validated within pediatric chronic illness groups, the literature regarding implementation of PROs is still emerging. Research findings are promising, with PROs being feasible, acceptable, and leading to increased discussion of psychosocial issues when integrated into pediatric medical settings. Additional research is needed to evaluate the longitudinal impact of PROs and the optimal manner of responding to assessment data, particularly when clinically-elevated. Ultimately, identifying psychosocial issues in pediatric medical settings can promote optimal health and well-being of youth with chronic illness and their families.

Preferences for cancer survivorship care among adolescents and young adults who experienced healthcare transitions and their parents.

PURPOSE: This study aimed to elucidate experiences and preferences for survivorship care delivery among adolescent and young adult (AYA) childhood cancer survivors who experienced healthcare transitions. METHODS: Eight focus groups were conducted with two groups of AYA survivors and their parents: (1) those who recently completed cancer treatment and are beginning follow-up care and (2) those who disengaged in follow-up care after the transition from pediatric to adult survivorship clinics. Interviewers used a structured interview guide that contained questions about perceptions and preferences for survivorship care models, resources, and tools (e.g., a survivorship care plan). We employed directed content analysis techniques to identify and organize relevant themes. RESULTS: Results of this study support six primary themes for optimizing survivorship care models for AYA: (1) improve knowledge of late effects and need for LTFU; (2) provide supportive services that help to address fear and uncertainty about health; (3) adapt survivorship care to be consistent with AYA developmental factors; (4) increase support surrounding healthcare transitions; (5) improve survivorship care communication and coordination between patients and families, and between providers; and (6) incorporate digital health tools. CONCLUSIONS: These groups represent vulnerable patient populations in AYA survivorship care and their perspectives highlight potential clinical and research priorities for enhancing long-term care models. IMPLICATIONS FOR CANCER SURVIVORS: Elucidating AYA and parent recommendations for survivorship care delivery can help to promote continuous engagement in care, target unmet needs, and promote health through survivorship models that are deemed acceptable to both patients and families.

Psychometric Properties of the Parent and Child Problem Areas in Diabetes Measures.

OBJECTIVE: Children with type 1 diabetes and their parents face daily self-care demands, leading to diabetes-specific emotional distress. A standardized measure of diabetes distress can guide clinical care and prevent negative outcomes. METHODS: This study evaluated the psychometric properties of child- and parent-report measures of the Problem Areas in Diabetes Scale, adapted for children ages 8-12 (PAID-C) and their parents (P-PAID-C). Participants were from 42 diabetes camps in the United States. Children (N = 804; mean age = 10.3 ± 1.1) and parents (N = 968) completed measures of diabetes distress, diabetes-related strengths, and self-care skills. Half of the sample was used for exploratory factor analyses (EFA) with direct oblimin rotation and the other half for confirmatory factor analyses (CFAs). RESULTS: For the PAID-C, EFA and CFAs supported an 11-item two-factor measure, Cronbach's α = .91, accounting for 54.6% of the variance. For the P-PAID-C, analyses resulted in a 16-item measure, Cronbach's α = .92, accounting for 51.9% of the variance. PAID-C and P-PAID-C scores were positively correlated with HbA1c (rchild = .08, p = .04; rparent = .18, p < .001), and negatively correlated with diabetes-related strengths (rchild = -.38, p < .001, rparent = -.29, p < .001) and parent report of child self-care skills (rparent = -.13, p < .001; rchild = -0.07, p = ns). CONCLUSIONS: Initial psychometrics suggest that the PAID-C and P-PAID-C reliably and validly capture diabetes-specific emotional distress for children and their parents. Associations with glycemic control, self-care, and diabetes strengths demonstrate criterion validity. Both measures have potential applications for routine, clinic-based assessments of diabetes distress and may guide clinical decision-making.

Bone marrow adipocytes resist lipolysis and remodeling in response to ß-adrenergic stimulation.

Bone marrow adipose tissue (BMAT) is preserved or increased in states of caloric restriction. Similarly, we found that BMAT in the tail vertebrae, but not the red marrow in the tibia, resists loss of neutral lipid with acute, 48-hour fasting in rats. The mechanisms underlying this phenomenon and its seemingly distinct regulation from peripheral white adipose tissue (WAT) remain unknown. To test the role of ß-adrenergic stimulation, a major regulator of adipose tissue lipolysis, we examined the responses of BMAT to ß-adrenergic agonists. Relative to inguinal WAT, BMAT had reduced phosphorylation of hormone sensitive lipase (HSL) after treatment with pan-ß-adrenergic agonist isoproterenol. Phosphorylation of HSL in response to ß3-adrenergic agonist CL316,243 was decreased by an additional ~90% (distal tibia BMAT) or could not be detected (tail vertebrae). Ex vivo, adrenergic stimulation of lipolysis in purified BMAT adipocytes was also substantially less than iWAT adipocytes and had site-specific properties. Specifically, regulated bone marrow adipocytes (rBMAs) from proximal tibia and femur underwent lipolysis in response to both CL316,243 and forskolin, while constitutive BMAs from the tail responded only to forskolin. This occurred independently of changes in gene expression of ß-adrenergic receptors, which were similar between adipocytes from iWAT and BMAT, and could not be explained by defective coupling of ß-adrenergic receptors to lipolytic machinery through caveolin 1. Specifically, we found that whereas caveolin 1 was necessary to mediate maximal stimulation of lipolysis in iWAT, overexpression of caveolin 1 was insufficient to rescue impaired BMAT signaling. Lastly, we tested the ability of BMAT to respond to 72-hour treatment with CL316,243 in vivo. This was sufficient to cause beiging of iWAT adipocytes and a decrease in iWAT adipocyte cell size. By contrast, adipocyte size in the tail BMAT and distal tibia remained unchanged. However, within the distal femur, we identified a subpopulation of BMAT adipocytes that underwent lipid droplet remodeling. This response was more pronounced in females than in males and resembled lipolysis-induced lipid partitioning rather than traditional beiging. In summary, BMAT has the capacity to respond to ß-adrenergic stimuli, however, its responses are muted and BMAT generally resists lipid hydrolysis and remodeling relative to iWAT. This resistance is more pronounced in distal regions of the skeleton where the BMAT adipocytes are larger with little intervening hematopoiesis, suggesting that there may be a role for both cell-autonomous and microenvironmental determinants. Resistance to ß-adrenergic stimuli further separates BMAT from known regulators of energy partitioning and contributes to our understanding of why BMAT is preserved in states of fasting and caloric restriction.

Mobile health intervention for youth with sickle cell disease: Impact on adherence, disease knowledge, and quality of life.

BACKGROUND: Adherence to illness self-management among youth with sickle cell disease (SCD) positively impacts health outcomes and decreases overall healthcare costs. Despite this, children with SCD face several barriers to adherence, with adherence rates that remain moderate to low. The current feasibility study examined the Intensive Training Program (ITP), a mobile health (mHealth) intervention for youth with SCD designed to promote disease knowledge, adherence, and patient-provider communication. PROCEDURE: Youth with SCD prescribed hydroxyurea between ages 7-18 completed baseline disease knowledge and psychosocial assessments and then were provided with the ITP app. Youth participated in the 90-day ITP, during which they completed three education modules, tracked adherence through daily self-recorded videos on the app, and received video messages from providers. Participants completed poststudy knowledge, psychosocial, and feasibility questionnaires. Medication possession ratio (MPR) was obtained via pharmacy-refill rates. RESULTS: Thirty-two youths (mean age = 13.0 years) participated, with an average adherence tracking rate of 0.6 (standard deviation = 0.34). All participants demonstrated increased MPR (0.57-0.74, P < 0.001, d = 0.75) and disease knowledge (59.6-88.6%, P < 0.001). There was variable engagement in the ITP; completers demonstrated significantly better SCD-related functioning (P < 0.05), higher parent-reported treatment functioning (P < 0.05), and lower pain impact than noncompleters of the ITP (P < 0.05). CONCLUSIONS: Results support the ITP can feasibly be implemented to promote adherence among youth with SCD. All participants demonstrated increased adherence and disease knowledge. However, there was variable engagement and only intervention completers showed improvements in psychosocial outcomes. Further research is needed to evaluate long-term outcomes and ways to promote engagement in mHealth interventions among the youth.

Family-Based Interventions Targeting Improvements in Health and Family Outcomes of Children and Adolescents with Type 1 Diabetes: a Systematic Review.

PURPOSE OF REVIEW: A systematic review was conducted of family-based interventions to improve glycemic control, adherence, and psychosocial outcomes in children and adolescents with type 1 diabetes (T1D). Electronic databases were searched for randomized controlled trials (RCTs) published since the seminal Diabetes Control and Compliance Trial (DCCT). Interventions are summarized and findings reviewed to help guide clinical practice and future research. RECENT FINDINGS: Twenty-five RCTs are reviewed. The majority of studies (n = 15) focused on interventions targeting both children and adolescents and their caregivers and were delivered in diabetes clinics, outpatient settings, mental health clinics, or participants' homes. Family-based interventions for youth with T1D appear effective at improving diabetes and family-centered outcomes. Additional research is needed to examine the pathways to improvement in glycemic control, as outcomes were mixed. Future research should also involve measures beyond HbA1c given new markers for sustained health improvement and outcomes are being explored.

Utilizing a Novel Mobile Health "Selfie" Application to Improve Compliance to Iron Chelation in Pediatric Patients Receiving Chronic Transfusions.

Iron chelation therapy can prevent iron overload for pediatric patients with sickle cell disease and ß-thalassemia major; however, adherence is suboptimal. Therefore, we developed an intensive training program (ITP), to improve medication management and disease knowledge. The objectives were to determine feasibility of the ITP and its preliminary impact on adherence, disease knowledge, and health outcomes. Pediatric patients were recruited to participate in the ITP over a 90-day period and were followed for 6 months. The ITP consisted of 3 components: (1) provider-led education modules; (2) patient recording daily videos of at-home medication administration; and (3) provider feedback through video messages through the ITP app. Eleven patients participated (mean=12.4 y). Initially, patients endorsed high satisfaction and ease of use and tracked their medication usage 81% (24 out of 30) of days. At 90 days, adherence rates remained consistent (80%) and disease knowledge retention was high (96%). At 6 months, participants exhibited a clinically relevant decrease in serum ferritin, which trended toward statistical significance (P=0.068). Medication possession ratio did not significantly increase (0.65 to 0.72; not significant). The mobile ITP was feasibly implemented in a clinical setting; in addition, high levels of compliance, disease knowledge retention, and acceptance encourage larger studies evaluating mobile health technology to improve child health parameters.

[Formula: see text]Executive functioning and health-related quality of life in pediatric sickle cell disease.

Research consistently indicates that children with sickle cell disease (SCD) face multiple risk factors for neurocognitive impairment. Despite this, no empirical research to date has examined the impact of neurocognitive functioning on quality of life for this pediatric group. Thus, the current study aims to examine the relationship between executive functioning and quality of life in a sample of children with SCD and further explore psychosocial and family/caregiver resources as moderators of this relationship. A total of 45 children with SCD aged 8 to 16 years and their caregivers completed measures of quality of life, behavioral ratings of executive functioning, and psychosocial functioning. Hierarchical linear regression models were utilized to determine the impact of executive functioning on quality of life and further test the interaction effects of proposed moderating variables. Controlling for age, pain, and socioeconomic status (SES), executive functioning was found to significantly predict child- and parent-reported quality of life among youth with SCD. Psychosocial resources of the primary caregiver or family was not found to moderate the relationship between executive functioning and quality of life. These results provide the first empirical evidence that lower executive skills negatively predict quality of life for children with SCD, supporting clinical and research efforts which aim to establish efficacious interventions that target cognitive decrements within this pediatric population.

Fatigue in Children With Sickle Cell Disease: Association With Neurocognitive and Social-Emotional Functioning and Quality of Life.

Children with sickle cell disease (SCD) report fatigue in addition to acute and chronic pain, which can decrease overall health-related quality of life (HRQL). The primary objective of the current study was to investigate the relationship between fatigue and HRQL. Given limited prior research, secondary objectives included investigation of associations between fatigue and functional outcomes, including child neurocognitive and social-emotional functioning. Children aged 8 to 16 years (N=32) and a caregiver completed measures of fatigue, HRQL, pain, and neurocognitive and social-emotional functioning. Controlling for pain and number of SCD-related hospitalizations, hierarchical linear regression models were used to determine the impact of child-reported and parent-reported fatigue on child HRQL. Correlational analyses were used to explore the relationship between fatigue and additional child outcomes. Data indicated that children with SCD experience clinically relevant levels of fatigue, which independently predicts lower HRQL. Fatigue was also associated with lower working memory, executive functioning, and higher levels of internalizing symptoms. Given its observed impact on HRQL and relationship to functional outcomes, fatigue may be an important target of clinical, home, or school interventions. This practice may attenuate the burden of fatigue in these patients, and in turn, help improve the quality of life of children living with SCD.

Family-Based Treatment of Pediatric Obsessive-Compulsive Disorder: Clinical Considerations and Application.

Pediatric obsessive-compulsive disorder (OCD) can be effectively treated with family-based intervention by expanding and enhancing family members' behavioral repertoire to more effectively manage OCD symptoms and affected family interactions. This article provides an overview and practical understanding of the implementation of family-based treatment of pediatric OCD. Special attention is given to relevant contextual family processes that influence symptom presentation, current empirical support for family-based treatment, and the clinical application of family-based cognitive-behavioral therapy. Case vignettes illustrate important clinical considerations for providers.

Rationality and emotionality: serotonin transporter genotype influences reasoning bias.

Reasoning often occurs under emotionally charged, opinion-laden circumstances. The belief-bias effect indexes the extent to which reasoning is based upon beliefs rather than logical structure. We examined whether emotional content increases this effect, particularly for adults genetically predisposed to be more emotionally reactive. SS/SL(G) carriers of the serotonin transporter genotype (5-HTTLPR) were less accurate selectively for evaluating emotional relational reasoning problems with belief-logic conflict relative to L(A)L(A) carriers. Trait anxiety was positively associated with emotional belief-bias, and the 5-HTTLPR genotype significantly accounted for the variance in this association. Thus, deductive reasoning, a higher cognitive ability, is sensitive to differences in emotionality rooted in serotonin neurotransmitter function.