The feasibility and acceptability of mobile ecological momentary assessment to evaluate sleep, family functioning, and affect in patients with pediatric craniopharyngioma.

PURPOSE/OBJECTIVES: We aimed to assess the feasibility and acceptability of mobile ecological momentary assessment (mEMA) for youth with craniopharyngioma and evaluate daily associations among family functioning, affect, and sleep difficulties. DESIGN/RESEARCH APPROACH: Youth completed two mEMA diaries per day for one week. SAMPLE/PARTICIPANTS: Thirty-nine youth who underwent surgery and proton radiotherapy (when indicated) for craniopharyngioma. METHODS/METHODOLOGICAL APPROACH: Descriptive statistics and multi-level modeling were used to examine feasibility and acceptability of mEMA and daily associations among family functioning, affect, and sleep. FINDINGS: Youth reported satisfaction and minimal burden from completing daily mEMA diaries. Poorer family functioning was not related to lower sleep efficiency. CONCLUSIONS/INTERPRETATION: mEMA is an acceptable and feasible method for evaluating sleep and related variables in children and adolescents with craniopharyngioma. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS OR POLICY: Results highlight the utility of gathering mEMA data in youth at elevated risk for sleep difficulties as a function of their illness/treatment.

Sleep-related challenges and family functioning in children and adolescents previously treated for craniopharyngioma.

PURPOSE: We investigated sleep-related challenges and their association with family functioning in children and adolescents previously treated for craniopharyngioma. DESIGN: Quantitative approach using psychometrically validated measures. SAMPLE: Thirty-nine children and adolescents who had been treated for craniopharyngioma and their primary caregivers. METHODS: Caregivers and youth completed measures of family functioning, family routines, daytime sleepiness, and children's sleep patterns. FINDINGS: Children and adolescents with craniopharyngioma had significantly higher ratings of self-reported excessive daytime sleepiness, bedtime fears/worries, and restless legs symptoms compared to their relatively healthy peers. Lack of family routines and poor family functioning were related to poor sleep-related outcomes and increased excessive daytime sleepiness. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: Providers should consider assessing sleep difficulties in pediatric brain tumor survivors from a family systems perspective. Intervening on family-related factors may help improve sleep and other health-related outcomes, whereas intervening on sleep may help improve family functioning.

Longitudinal neurocognitive effects of nonmyeloablative hematopoietic stem cell transplant among older adolescents and adults with sickle cell disease: A description and comparison with sibling donors.

Sickle cell disease (SCD) is associated with increased risk of neurocognitive deficits. However, whether functioning changes following nonmyeloablative hematopoietic stem cell transplant (HSCT) remains unclear. This study aimed to examine changes in neuropsychological functioning pre- to post-transplant among patients with SCD and compare patients and siblings. Adults with SCD (n = 47; Mage = 31.8 ± 8.9) and their sibling stem cell donors (n = 22; Mage = 30.5± 9.2) enrolled on a nonmyeloablative HCST protocol completed cognitive and patient-reported outcome assessments at baseline and 12 months post-transplant. Path analyses were used to assess associations between pre-transplant variables and sibling/patient group status and post-transplant function. Mean patient cognitive scores were average at both timepoints. Patient processing speed and somatic complaints improved from baseline to follow-up. Baseline performance predicted follow-up performance across cognitive variables; patient/sibling status predicted follow-up performance on some processing speed measures. Results suggest that patients with SCD demonstrate slower processing speed than siblings. Processing speed increased pre- to post-HSCT among patients and siblings, and on some measures patients demonstrated greater improvement. Thus, HSCT may improve processing speed in patients, although further confirmation is needed. Findings provide promising evidence that neurocognitive functioning remains stable without detrimental effects from pre- to 12-months post nonmyeloablative HSCT in individuals with SCD.

Impact of the coronavirus pandemic on mental health and health care in adults with neurofibromatosis: Patient perspectives from an online survey.

The coronavirus pandemic increased anxiety and stress and prevented access to health care worldwide; it is unclear how COVID-19 affected adults with a multisystem genetic disorder such as neurofibromatosis (NF). An anonymous online survey was distributed through an international registry and foundations to adults with NF (June-August 2020) to assess the impact of the pandemic on mental health and NF health care. Six hundred and thirteen adults (18-81 years; M = 45.7) with NF1 (77.8%), NF2 (14.2%), and schwannomatosis (7.8%) provided complete responses. Respondents rated moderate-to-high amounts of worry about the impact of COVID-19 on their emotional (46.3%) and physical health (46.7%), and 54.8% endorsed moderate-to-high pandemic-related stress. Adults with diagnosed/suspected mental health disorders or moderate-to-severe NF symptom impact as well as females endorsed higher COVID-19 stress (ps < 0.01). Less than half who missed a doctor's appointment for their NF care (43.4%) used telehealth. Of these, 33.3% and 46.2% reported that telehealth met their needs to a moderate or high degree, respectively. Results indicated that subgroups of adults with NF experience higher COVID-19-related worries and stress and may need additional support. Furthermore, telehealth is under-utilized and could help NF providers connect with patients, although improved delivery and patient training may facilitate expanded use of these services.

Family factors and health-related quality of life within 6 months of completion of childhood cancer treatment.

OBJECTIVE: The transition from active cancer treatment to survivorship represents a period of uncertainty for youth and their families, but factors associated with adaptation during this period are understudied. We evaluated associations among cancer and treatment-related variables, family factors (family functioning, caregiver health-related quality of life [HRQL], and caregiver distress), and patient HRQL after treatment completion. We assessed the indirect effects of neurocognitive difficulties on youth HRQL through family factors. METHODS: One hundred fifty-four caregivers (of patients' ages 0-18 years) and 52 youth (ages 7-18 years) completed questionnaires assessing family factors, neurocognitive difficulties, and HRQL for patients within 6 months following treatment completion. Electronic health records were reviewed for cancer and treatment-related information. Bootstrapping analyses assessed whether neurocognitive function had indirect effects on HRQL through family factors. RESULTS: Family factors were associated with self- and caregiver reports of children's HRQL. Controlling for demographic, cancer, and treatment covariates, caregiver reports of their child's neurocognitive difficulties had an indirect effect on their reports of child physical HRQL through family functioning. Caregiver reports of their child's neurocognitive difficulties indirectly related to caregiver reports of child psychosocial HRQL through family functioning and caregiver HRQL. Indirect effects for self-reported neurocognitive difficulties and HRQL were not supported. CONCLUSIONS: Findings highlight the need for routine psychosocial screening for youth and caregiver reports of family adjustment and HRQL during the transition off treatment. Providers are encouraged to offer interventions matched to specific needs for families at risk for poor family functioning to improve patient outcomes as they transition off treatment.

Patterns of family relationships in pediatric oncology: implications for children's adjustment upon treatment completion.

OBJECTIVE: Family characteristics influence children's adaptation following a cancer diagnosis. Little is known about the importance of family relationships on children's social and emotional health immediately after treatment completion. In this study, we identify subtypes of family relationships and evaluate how these profiles relate to child adjustment upon treatment completion. METHODS: Youth (N = 77; ages 7-14) who completed cancer treatment within the past 7 months provided their perceptions of their relationships with their caregivers and siblings. Caregivers and teachers rated participants' internalizing and externalizing symptoms, while participants and caregivers reported on child social and overall functioning. Latent profile analyses identified patterns of family relationships, and we examined associations between these patterns and youth outcomes. RESULTS: A four-profile solution best characterized families as (1) low closeness/high sibling-only discord (12.4%); (2) low closeness/high discord (6.6%); (3) high closeness/low discord (47.6%); and (4) moderate closeness/moderate discord (33.4%). Family relationship profiles were differentially associated with self, caregiver, and teacher ratings of adaptation. Participants from families characterized by low closeness/high discord reported more difficulties with peer interactions than participants with high closeness/low discord in their families. Caregivers and teachers reported significantly higher externalizing symptoms for participants from low closeness/high discord and low closeness/high sibling discord families in comparison to participants with high closeness/low discord in their family. CONCLUSIONS: Findings underscore the importance of assessing children's perceptions of family relationships in pediatric oncology and providing support to the family during and after treatment. Future directions include assessing how these profiles predict outcomes over time.

Two-Year Gender Differences in Satisfaction With Appearance After Burn Injury and Prediction of Five-Year Depression: A Latent Growth Curve Approach.

OBJECTIVES: To use latent growth curve and longitudinal structural equation modeling to examine the 2-year trajectory of satisfaction with appearance in adults with burn injury, and that trajectory's effect on depression 5 years after burn injury. DESIGN: Data were collected at discharge after burn injury hospitalization and at 6 months, 1 year, 2 years, and 5 years postdischarge. SETTING: The Burn Model Systems (BMS) program consisted of a data center and 5 participating burn centers. PARTICIPANTS: The sample consisted of adults (N=720) who were hospitalized for a burn injury, enrolled in the BMS database, and completed measures at least once throughout the 5-year study duration. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Satisfaction With Appearance Scale and Patient Health Questionnaire-9 (depression). RESULTS: Women with burn injury reported higher levels of dissatisfaction with their appearance in comparison to their male counterparts over the 2 years after discharge. Individuals with a larger total body surface area (TBSA) affected by a burn also reported greater body dissatisfaction across the postdischarge 2-year period. Results did not support significant gender or TBSA differences in the rate of change of body dissatisfaction trajectories across these 2 years. Individuals with greater body dissatisfaction at 6 months postdischarge tended to have higher depressive symptoms at 5 years. Six month postdischarge, body dissatisfaction scores also mediated the effects of gender and TBSA on depressive symptoms 5 years later. CONCLUSIONS: It is recommended that individuals with heightened body image dissatisfaction after a burn, particularly women and those with larger TBSA, participate in evidence-based psychosocial interventions to improve long-term adjustment.

Parent-child discrepancies in reports of child psychosocial functioning in neurofibromatosis type 1.

Children with neurofibromatosis type 1 (NF1) are at an increased risk for social-emotional difficulties. These difficulties, including depression and anxiety, are typically measured through parental report of child functioning in research and rarely have children with NF1 rated their own well-being. Discrepancies between parent proxy- and child self-report of psychosocial functioning in other populations have been shown to relate to socioemotional problems and distress. This study examined the concordance of parent proxy- and child self-report of child behavioral and social-emotional functioning on selected Behavior Assessment System for Children-Second Edition subscales in families of children with NF1 and plexiform neurofibroma tumors (pNFs). We also sought to explore possible child, family, and community factors relating to discrepancies in reporting for youth with NF1 and pNFs. Overall, parents reported higher symptoms across psychosocial domains (anxiety, depression, and atypicality) in comparison to their children. Furthermore, characteristics like child sex, attention-deficit hyperactivity disorder diagnosis, and family functioning significantly predicted differences in ratings of child functioning. These findings indicate that multi-informant studies are crucial to understanding multiple perspectives among family members in symptom-reporting and risk factors for these discrepancies. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Children's appraisals of threat in pediatric cancer☆.

PURPOSE: Although many children with cancer cope well with challenges, some experience distress that results in poor adjustment. Children's perceptions of threat may be one explanation for heterogeneity in outcomes, but relatively little is known about what children find threatening. This study aimed to describe the threats that children report. METHOD: Youth (4-18 years old) newly diagnosed with cancer and their primary/parent caregivers (PC) participated in a multi-method study. Appraisals of threat were assessed via self-report and a narrative technique at two weeks post-diagnosis. PCs reported children's anxiety and depressive symptoms three months post-diagnosis and children reported their quality of life (QOL) six months post-diagnosis. RESULTS: Youth reported various types of threatening events (e.g., receiving the cancer diagnosis, fear or pain of procedures) across multiple domains (e.g., threat to self, physical threat, threat of loss). Adolescents tended to report threat to life (e.g., the seriousness of the diagnosis itself) whereas younger children reported other threats (e.g., procedural pain). Children with high perceived threat to self had higher subsequent anxiety symptoms and lower QOL compared to those with low appraisals of threat to self. There was also a significant mean difference between high and low appraisals of threat of loss in child reported QOL. CONCLUSIONS: Youths' reported threats, as well as how threat appraisals related to adjustment outcomes in distinct ways, underscores the developmental nature of how youth interpret medically stressful events and the utility of developmentally sensitive assessment. Understanding perceived threat could ultimately inform efforts to foster positive long-term adaptation for youth with cancer.

Discrepancies between parent and self-reports of adolescent psychosocial symptoms: Associations with family conflict and asthma outcomes.

Discrepancies often exist between self-reported and parent-reported symptoms when assessing youth psychosocial functioning. Parent-child discrepancies in ratings may be important for understanding psychopathology and patterns of family functioning, particularly during adolescence and for youth with chronic illness. This study examined patterns of multirater reporting discrepancies in a pediatric asthma population. Adolescents (n = 707; 11-17 years old) and their primary caregivers completed ratings of adolescents' psychological symptoms. Latent profile analysis identified five profiles of parent-adolescent discrepancies, including one group with highly discordant ratings, two groups in agreement, and two groups with slightly discordant ratings. Adolescents who agreed with their parents on the presence of elevated symptoms and those who had significant discrepancies in ratings, such that parents reported elevated symptoms compared to youth self-report, had poor pulmonary functioning and elevated reports of parent-rated family conflict. Results suggest the need to assess internalizing and externalizing symptoms in adolescents with asthma using a multirater approach while also highlighting the complexity in interpreting patterns of discrepancies. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

Family functioning and child asthma severity: A bio-behavioral approach.

INTRODUCTION: Family factors are directly associated with the psychosocial adjustment of children with chronic illnesses such as asthma (Kaugars, Klinnert, & Bender, 2004). Research indicates that negative family factors may also contribute to child disease severity via bio-behavioral mechanisms of effect. For instance, children from more conflicted families often experience greater internalizing symptoms that subsequently impact their asthma severity (Wood et al., 2006). These pathways have yet to be examined with a comprehensive focus on strength-based family factors. This study examined whether factors such as family cohesion, problem-solving abilities, and communication influence asthma severity via their effects on child depression and anxiety symptoms. METHOD: Participants were 215 children (136 males and 79 females), ages 5 to 12 years old, and their families. Primary caregiver, child, and teacher ratings of child and family functioning in addition to objective measures of parent-child interactions and asthma severity were collected. RESULTS: Using structural equation modeling, the authors identified significant indirect associations between family factors and child asthma severity via child depressive symptoms; however, these associations were not present in models with child anxiety symptoms. DISCUSSION: Results suggest an indirect effect of family functioning on children's lung function, with differential roles of anxiety and depression in these pathways. This article also highlights the importance of incorporating multirater multimethod measures to understand children's experiences in pediatric asthma. (PsycINFO Database Record

Impact of Mental Health Comorbidities on the Community-Based Pediatric Treatment and Outcomes of Children with Attention Deficit Hyperactivity Disorder.

OBJECTIVE: Children with attention deficit hyperactivity disorder (ADHD) often exhibit psychiatric comorbidities, which may impact illness presentation, diagnosis, and treatment outcomes. Guidelines exist for dealing with these complex cases but little is known about how comorbidities are being handled in community pediatric settings. The purpose of this study was to evaluate how mental health comorbidities affect community physicians' ADHD care practices and patients' symptom trajectories. METHOD: Medical charts of 319 children presenting at primary care clinics for ADHD-related concerns were reviewed. Physician assessment and treatment behaviors were extracted and parents rated ADHD symptoms at the time of diagnosis and at 3, 6, and 12 months. Baseline ratings were used to group children, as no comorbid mental health condition, internalizing, or externalizing comorbid condition. Multilevel analyses compared community physician care behaviors and ADHD symptom trajectories across groups. RESULTS: Approximately, 50 percent of the sample met screening criteria for a comorbid mental health condition. For children diagnosed with ADHD and treated with medication, community physician care largely did not differ across groups, but children with internalizing comorbidities made significantly smaller improvements in inattentive and hyperactive/impulsive symptoms compared with children with no comorbidities. CONCLUSION: Children with ADHD and mental health comorbidities, particularly internalizing disorders, exhibit less robust response to ADHD medication and may require additional testing before starting medication and/or alternative treatment approaches. Potential barriers to conducting comprehensive assessments and to providing multi-modal treatment are discussed.