Social determinants of health predict health outcomes following pediatric allogeneic hematopoietic stem cell transplant.

BACKGROUND: Pediatric hematopoietic stem cell transplantation (HCT) is an intensive medical procedure that places substantial financial and logistical burdens on families and is associated with significant health risks, such as graft-versus-host disease (GVHD), and infections. The influence of the social determinants of health (SDoH) on outcomes following pediatric HCT is understudied. This study aimed to examine whether SDoH predicts outcomes following pediatric HCT. PROCEDURE: Data were collected from 84 children who received HCT (Mage  = 5.8 years, SD = 3.7) and their primary caregiver. Detailed demographic information was collected from caregivers at baseline, and child health information was extracted from the electronic medical records. Multivariate logistic regression was used to examine the association between SDoH and health outcomes within a 24-month period following pediatric HCT. RESULTS: After controlling for malignancy as reason for transplant and donor type, lower family income predicted the incidence of chronic GVHD. Neighborhood deprivation, total family income, public health insurance, caregiver relationship status, caregiver educational attainment, and perceived family financial difficulties did not predict acute GVHD or the number of infections. CONCLUSIONS: Total family income is a simple family indicator of SDoH that predicts chronic GVHD after pediatric allogeneic HCT. These findings provide further support for the importance of screening of child and family SDoH risks to ensure that fundamental needs can be met to mitigate potential health disparities for up to 2 years following pediatric HCT.

Pediatric Hematopoietic Stem Cell Transplant Medication Adherence Facilitators and Strategies: A Qualitative Study.

OBJECTIVE: Taking medications as prescribed after hematopoietic stem cell transplant (HCT) is key for ensuring children's survival; however, suboptimal medication adherence is common. Development of evidence-based interventions to improve medication adherence post-HCT is contingent upon understanding what adherence facilitators (i.e., unique traits, characteristics, or resources inherent to the individual, medical treatment, or healthcare team) and strategies (i.e., tools caregivers or medical providers intentionally use) promote medication adherence in this population. Therefore, this study examined caregiver-perceived medication facilitators post-HCT. METHODS: Semi-structured qualitative interviews and demographic questionnaires were completed by 29 caregivers of children (≤12 years) who had received an HCT within the past 2 years. RESULTS: Thematic analysis guided by grounded theory revealed 14 saturated themes that were grouped into 4 categories: family facilitators, medication facilitators, caregiver strategies, and multidisciplinary treatment team strategies. CONCLUSIONS: Overall, findings suggest that caregivers of children who received an HCT are highly resourceful and independently develop many strategies to assist them with medication management after their child's HCT. These facilitators and strategies varied between caregivers and over time. Despite prevalent facilitators and strategies, caregiver burden associated with medication adherence remains high. Caregivers may benefit from the multidisciplinary treatment team providing individualized and multicomponent (educational and behavioral) medication adherence supports to ease this burden particularly shortly after hospital discharge.

A systematic evaluation of primary headache management apps leveraging behavior change techniques.

BACKGROUND: Mobile health apps have the potential to promote adherence to headache management through the use of evidence-based behavior change techniques (e.g., self-monitoring). While many headache management apps exist, the extent to which these apps include behavior change techniques remains unknown. Thus, the present study systematically evaluated the content and quality of commercially available headache management apps. METHODS: Headache apps were identified using a systematic search in the Apple App and Google Play stores. A total of 55 apps were evaluated using the taxonomy of behavior change techniques and app quality using the Mobile App Rating Scale. RESULTS: Headache management apps included 0-14 behavior change techniques (Mean [M] = 5.89) and 0-8 headache management behavior change techniques (M = 4.29). App quality ranged from 2.84-4.67 (M = 3.73) out of 5.00. Three apps, Migraine Trainer, Easeday: Headache & Migraine, and PainScale, included the highest number of overall and headache management behavior change techniques along with good quality scores. CONCLUSIONS: While randomized controlled trials are necessary to determine the efficacy of individual headache apps, most existing apps include evidence-based headache management behavior change techniques. Headache apps often focus on either self-monitoring or stress management via relaxation training, suggesting that patients' needs should be used to inform app selection.

Health-related quality of life, obesity, fragmented sleep, fatigue, and psychosocial problems among youth with craniopharyngioma.

OBJECTIVE: Youth with craniopharyngioma experience weight gain, fragmented sleep, excessive daytime sleepiness (EDS), fatigue, and psychosocial problems that negatively impact their overall health-related quality of life (HRQoL). Greater hypothalamic tumor involvement (HI) may be associated with higher rates or severity of these impairments; however, the direct and indirect impact of HI on the physical and psychosocial consequences associated with pediatric craniopharyngioma remain unclear. The purpose of the current study was to examine relations between HI, body mass index (BMI), fragmented sleep, EDS, fatigue, psychosocial problems, and HRQoL among youth with craniopharyngioma. METHODS: Eighty-four youth with craniopharyngioma (Mage  = 10.27 ± 4.3 years, 53.6% female, 64.3% White) were assessed with actigraphy, nocturnal polysomnography, and multiple sleep latency tests prior to proton therapy, when indicated. Caregivers completed measures of fatigue, psychosocial functioning, and HRQoL. RESULTS: Hypothalamic tumor involvement was associated with greater BMI (Est. = 2.97, p = 0.003) and daytime sleepiness (Est. = 2.53, p = 0.01). Greater fatigue predicted more psychosocial problems (Est. = 0.29, p < 0.001) and lower HRQoL (Est. = 0.23, p = 0.001). Psychosocial problems also predicted lower HRQoL (Est. = -0.34, p = 0.004). Fragmented sleep (Est. = 0.03, p = 0.04) and fatigue (Est. = 0.10, p = 0.02) indirectly predicted lower HRQoL through psychosocial problems. CONCLUSIONS: Youth with craniopharyngioma with greater HI may benefit from weight reduction interventions and management of excessive sleepiness. Patients should be prospectively monitored for sleep problems, fatigue, and psychosocial problems, as these patients may benefit from interventions targeting fatigue and psychosocial health to improve HRQoL.

Brief assessment of diabetes-specific psychological flexibility in racially and income diverse youth with type 1 diabetes.

OBJECTIVE: Diabetes-specific psychological flexibility (the ability to engage in valued behaviors, be open to internal experiences, with present-moment awareness, while living with diabetes) is associated with HbA1c and health-related quality of life in youth with type 1 diabetes (T1D). Having brief diabetes-specific psychological flexibility assessments that perform equivalently across diverse individuals is important for research and clinical work addressing health disparities. The present study aimed to create 9-and 3-item short forms (DAASito-9 and -3) of the Diabetes Acceptance and Action Scale (DAAS-22), and evaluate their validity, reliability, and measurement invariance (MI). RESEARCH DESIGN AND METHODS: Youth with T1D (n = 179, Mage  = 14.64, 50% female, 56% Black/African American) completed self-report measures at an endocrinology clinic visit. HbA1c was extracted from medical records. One-half of the sample was used to develop the DAASitos with the highest reliability, McDonald's 𝜔 ≥ 0.75, and convergent validity (r ≥ 0.90 to DASS-22). Confirmatory factor analyses evaluated structural validity. MI was assessed across demographic (race, gender, grade, household income) and disease characteristic (illness duration, HbA1c) groups. Correlations with measures of psychological flexibility assessed additional convergent validity, and latent mean differences across groups were evaluated after confirming MI. RESULTS: MI was supported. The DAASito-9 and -3 were correlated in expected directions with other psychological flexibility measures, HbA1c, and health-related quality of life. CONCLUSIONS: The psychometric properties of the DAASito-9 and -3 support their use in research and clinical care of diverse youth with T1D. Significant differences in psychological flexibility across race, income, and glycemic health warrant further research and clinical intervention.

Pain, depressive symptoms, and health-related quality of life among survivors of pediatric hematopoietic stem cell transplant.

OBJECTIVE: Pediatric hematopoietic stem cell transplant (HCT) is an intensive medical procedure associated with significant late effects, of which pain is a prominent example. While pain is associated with increased depressive symptoms and health-related quality-of-life (HRQoL) impairments in other pediatric chronic illness populations, associations between these variables are not well understood in pediatric HCT. Clarifying these associations may inform clinical interventions to improve health outcomes following pediatric HCT. This study aimed to investigate the relations between pain intensity, depressive symptoms, and HRQoL in survivors of pediatric HCT. METHOD: Fifty-one survivors of pediatric HCT (Mage  = 14.3 years, standard deviation [SD] = 4.3; 58.8% male; 80.4% White) completed self-report measures of pain intensity, depressive symptoms, and HRQoL. Demographic and disease information was collected via demographic forms and medical record review. Path analysis was used to examine hypothesized associations between pain intensity, depressive symptoms, and HRQoL. RESULTS: Analyses revealed direct effects of pain intensity on depressive symptoms (estimate [Est.] = .23, p < .001) and HRQoL (Est. = -.2, p = .04), and direct effects of depressive symptoms on HRQoL (Est. = -.68, p < .001). Depressive symptoms also mediated the relationship between pain intensity and HRQoL (Est. = -.16, p = .006). CONCLUSIONS: Greater pain intensity was associated directly with increased depressive symptoms and indirectly with HRQoL through depressive symptoms. Results of this study suggest that multitargeted cognitive behavioral interventions that address pain and depressive symptoms may improve HRQoL ratings in survivors of pediatric HCT.

Caregivers' Experience of Medication Adherence Barriers during Pediatric Hematopoietic Stem Cell Transplant: A Qualitative Study.

OBJECTIVE: Medications are critical for reducing morbidity and mortality risk in pediatric hematopoietic stem cell transplant (HCT). Nonetheless, medication adherence is suboptimal in this population. Identifying and managing barriers to medication management (i.e., medication barriers) is a key component of supporting medication adherence. However, understanding how medication barriers uniquely impact the pediatric HCT population and which barriers characterize each treatment stage remain unclear. Therefore, this study examined caregiver-perceived medication barriers over the course of pediatric HCT. METHODS: Semi-structured qualitative interviews and demographic questionnaires were completed by 29 caregivers of children (≤12 years) who had received an HCT in the past 24 months and were either still admitted to, or had been discharged from, the hospital. RESULTS: Grounded methodology revealed 21 qualitative themes grouped into 6 hierarchical categories. Findings reflected barriers to be present across HCT treatment but to differ based on treatment stage with only child medication refusal being a consistent barrier across all stages. Barriers were particularly prevalent after hospital discharge post-HCT when caregivers assumed full responsibility for medication management. In addition, families approaching hospital discharge often lacked insight about these post-discharge barriers such that they did not report anticipating the range of barriers described by caregivers who had already been discharged from the hospital and taken on full responsibility for medication management. CONCLUSIONS: Findings support the benefit of medication barrier assessment across HCT treatment. These results suggest that families may benefit from intervention to address the specific barriers they experience around medication adherence especially during the post-HCT outpatient period.

Development and initial validation of the diabetes family conflict scale (revised)-short form in a racially and income diverse sample.

OBJECTIVE: The purpose of the study was to develop a short form of the revised diabetes family conflict scale (DFCS) in a racially and income diverse sample while retaining strong psychometric properties. METHODS: One seventy nine youth with type 1 diabetes (ages 12-18 years) and caregivers completed the DFCS-Revised as well as assessments of adherence, psychosocial functioning, and diabetes-related stress. Hemoglobin A1c was also obtained. The sample was split at random into a development sample and validation sample. RESULTS: Confirmatory factor analyses in the validation sample supported the use of a six-item short form (DFCS-SF) either as a total score (6-items) or a direct (3-item) and indirect (3-item) score. Variations of the DFCS-SF (three items of the 6-item short form) also had acceptable model fit. The short-form questionnaires had acceptable internal consistency and convergent validity (6-item: Cronbach's a = 0.865, full scale DFCS r = 0.954; 3-item: Cronbach's a = 0.757, full scale DFCS r = 0.912). The DFCS-SF showed measurement invariance across both youth and caregiver respondents. Greater report of the DFCS-SF by both youth and caregivers was significantly associated with higher HbA1c, more diabetes-related stress, and more psychosocial concerns. CONCLUSIONS: The DFCS-SF developed in the present study shows psychometric integrity in a diverse population of youth and can be utilized by providers to rapidly assess and potentially implement interventions to reduce diabetes family conflict, a psychosocial concern which is associated with elevated HbA1c, non-optimal adherence, diabetes-related stress, and psychological distress.

Impact of sleep, neuroendocrine, and executive function on health-related quality of life in young people with craniopharyngioma.

AIM: To examine the impact of clinical factors, cognitive deficits, and sleepiness on health-related quality of life (HRQoL) among young people with craniopharyngioma. METHOD: Seventy-eight patients (67% White; 41 males, 37 females; mean age 10y 8mo, SD 3y 11mo, range 6-20y) with craniopharyngioma were assessed for tumor extent and diabetes insipidus. All patients underwent overnight polysomnography and multiple sleep latency tests after surgical resection. Executive functioning was assessed using parent-reported measures. Patients and their parents completed measures of HRQoL. None had a history of previous radiation therapy. RESULTS: Path analysis was used to test hypothesized relations while controlling for demographic and disease characteristics. Analyses revealed poorer parent-reported HRQoL among young people with greater executive functioning symptoms (estimate -0.83; p<0.001). Direct and indirect effects were found among diabetes insipidus, executive functioning, and parent-reported HRQoL. Diabetes insipidus directly predicted greater global executive functioning impairment (estimate 5.15; p=0.04) and indirectly predicted lower HRQoL through executive functioning impairment (estimate -4.25; p=0.049). No significant effects were found between excessive daytime sleepiness, tumor hypothalamic involvement, diabetes insipidus, executive functioning, and patient-reported HRQoL. INTERPRETATION: These findings suggest that young people with craniopharyngioma presenting with diabetes insipidus may benefit from targeted neurocognitive and psychosocial screening to inform interventions. What this paper adds Children with craniopharyngioma and executive functioning impairment are more likely to have poorer health-related quality of life (HRQoL). Diabetes insipidus, a complication associated with surgery, predicted greater executive functioning impairment. Diabetes insipidus indirectly predicted lower parent-reported HRQoL through executive functioning impairment.

Family Adjustment to Pediatric Hematopoietic Stem Cell Transplant During COVID-19.

OBJECTIVE: The COVID-19 pandemic has been difficult for families across the world due to fears about infection risk, increased social isolation, and significant changes in family roles and routines. Families with a child undergoing pediatric hematopoietic stem cell transplant (HCT) may be at even greater risk for poor adjustment during COVID-19 given their child's increased risk for infection. The purpose of the current study was to qualitatively examine the impact of COVID-19 on family adjustment during pediatric HCT to inform clinical care. METHODS: Twenty-nine caregivers of children (≤12 years) who underwent an HCT within the past 2 years completed semi-structured qualitative interviews and demographic questionnaires in the first 4 months following initial COVID-19 quarantine. RESULTS: Twenty-two themes emerged from the interviews using grounded theory methodology. Although nearly half of caregivers described COVID-19 as a stressor, 69% of caregivers reported adequate adjustment to COVID-19. Caregivers generally attributed their positive adjustment to HCT preparing the family for COVID-19 and more difficult adjustment to increased physical or social isolation and COVID-19 amplifying germ fears. The child's HCT treatment status also had important implications on family adjustment to COVID-19. CONCLUSIONS: Results suggest that families undergoing pediatric HCT are uniquely prepared to cope with the impacts of a global pandemic; however, families experiencing certain risk factors (e.g., more recent transplant, impaired access to social support, reduced access to coping tools) may experience poorer adjustment during pandemics such as COVID-19 and may benefit from increased psychosocial support from their healthcare team.

Predictors of HbA1c Trajectories in Predominantly Black Adolescents With Type 1 Diabetes.

OBJECTIVE: Following the Journal of Pediatric Psychology's special edition on health disparities, calling for Phase 2 research exploring mechanisms of racial groups in health disparities, this study aims to explore social information processing predictors of longitudinal hemoglobin A1c (HbA1c) trajectories in a racially diverse group of adolescents. The social information processing model of glycemic control in type 1 diabetes (T1D) posits that adolescents who make negative attributions about reactions of friends are likely to find adherence difficult in social situations, have increased stress, and have suboptimal glycemic control. METHODS: One hundred eighty-four youth with T1D completed self-report measures and HbA1c at three time points within 1 year was extracted from medical records. Growth mixture modeling empirically derived classes of HbA1c trajectories and explored predictive relationships of social information processing variables, demographics, and diabetes characteristics. RESULTS: Three classes emerged: High Decelerating, Mid-High Accelerating, and Near-Optimal Accelerating. Black/African American participants were highly likely to be in the High and Mid-High groups. Higher anticipated adherence difficulties in social situations predicted increased odds of being in the Mid-High versus Near-Optimal HbA1c group. Increased diabetes stress predicted increased odds of being in the High versus Near-Optimal and Mid-High groups. CONCLUSIONS: Continuing research on mechanisms behind this health disparity is necessary with more representation from varied racial and ethnic groups. Equal access to diabetes technology and psychosocial treatments are recommended and implications for clinical intervention development are discussed.

Toward the Development of a Culturally Humble Intervention to Improve Glycemic Control and Quality of Life among Adolescents with Type-1 Diabetes and Their Families.

Type-1 Diabetes (T1D) is a prevalent and costly disorder associated with substantial morbidity that differentially impacts low-income and/or minority adolescents and their families. The primary study objective was to develop a guiding model to inform culturally humble interventions for Mid-southern youth with T1D presenting with multiple correlates of suboptimal glycemic control and their families. In order to develop a clinic specific guiding model, conceptualizations of health, the need/type of intervention thought to be most helpful, the optimal structure, and strategies to improve the cultural/regional fit was ascertained from (A) youth with T1D (n = 13) and caregivers (n = 11) via qualitative interviews and, (B) pediatric endocrinologists and nurse practitioners (n = 6), and (C) nurses, diabetes educators, dietitians, and social workers (n = 9) via focus groups. Qualitative themes were synthesized to guide the treatment development model whereby Quality of Life and Glycemic Control would be directly enhanced by interventions to promote Coping, Support, Education, and Improved Psychosocial Functioning and indirectly through improved Adherence and T1D Autonomy delivered in a culturally humble way that affirms youths' T1D identify. These finding suggest that existing evidence-based treatments may provide a great fit for low-income, and/or minority youth with T1D and their families living in the mid-south, provided these interventions are delivered in culturally humble manner.

Examining Risk Factors of Health-Related Quality of Life Impairments Among Adolescents with Inflammatory Bowel Disease.

Inflammatory Bowel Disease (IBD) is a chronic, costly, and burdensome disease that is typically diagnosed during adolescence. Despite the use of effective treatments, rates of relapse and intestinal inflammation remain high and put patients at risk for long term physical and psychosocial health complications. Given the costs associated with IBD, it is critical to examine potential risk factors of poor health-related quality of life (HRQoL) among patients for the enhancement and further development of interventions. As such, the aim of the current study was to examine how sociodemographic and disease characteristics, psychosocial problems, and adherence behaviors impact HRQoL among a sample of youth with IBD. 107 adolescents with IBD and their caregiver completed self- and parent-report measures as part of a psychosocial screening service. Medical records were reviewed to obtain information regarding diagnosis, insurance, medication use, illness severity, and disease activity. Results revealed lower HRQoL scores among adolescents with more psychosocial problems (Est. = -3.08; p < .001), greater disease severity (Est. = -.40; p = .001), and those who identified as Black (Est. = -.38; p < .05). Greater disease severity (Est. = .13 p = .004), use of nonpublic insurance (Est. = .32 p = .004), and fewer psychosocial problems (Est. = -.13 p = .04) were associated with greater adherence behaviors. These findings suggest that implementing individually tailored, evidence-based psychological interventions focused on coping with psychosocial problems and symptoms may be important in enhancing adherence behaviors and HRQoL among adolescents with IBD.

Impact of the parent-child relationship on psychological and social resilience in pediatric cancer patients.

OBJECTIVES: The primary objective of this research was to examine patterns of parent-child relationship functioning among pediatric cancer survivors and their caregivers across a variety of relationship indicators (ie, Involvement, Attachment, Communication, Parenting Confidence, and Relational Frustration), and evaluate how these factors relate to psychosocial outcomes in survivors. METHODS: Young survivors aged 10 to 18 and their caregivers (N = 165) completed measures related to posttraumatic stress and general distress. Caregivers also completed assessments of parent-child relationship functioning, and survivors completed assessments of social functioning. Latent profile analysis was performed to identify patterns of relationship functioning. Medical, demographic, and parent functioning variables were examined as predictors, and youth's psychological and social functioning were examined as outcomes. RESULTS: A three-class solution was the best fit to the data. The struggling parent-child relationship profile (15%) evidenced below average levels of parent-child relationship functioning across several domains. The normative parent-child relationship (60%), was characterized by average levels of parent-child relationship functioning across all domains. Finally, the high-involved parent-child relationship profile (25%) demonstrated above average levels of parent-child relationship functioning in involved activities, communication, and attachment and normative levels of functioning across all other domains. Medical and parent functioning factors predicted profile membership. In turn, profile membership was associated with survivor psychological and social outcomes. CONCLUSION: Findings document the importance of extending existing research to examine patterns of parent-child relationship functioning, which may serve as a clinically relevant target to improve psychological and social outcomes in young survivors of childhood cancer.

Measuring psychological flexibility in youth with type 1 diabetes.

OBJECTIVE: To determine reliability and validity of the acceptance and action diabetes questionnaire (AADQ) and the diabetes acceptance and action scale for children and adolescents (DAAS), measures of diabetes-specific psychological flexibility. METHODS: One hundred and eight-one youth with type 1 diabetes completed the AADQ, DAAS, and measures of mindfulness, cognitive fusion, and health-related quality of life. HbA1c was extracted from medical records. Confirmatory factor analysis (CFA) was used to cull items and evaluate the factor structures of the AADQ and DAAS. Bivariate correlations were conducted between all measures to explore content validity. RESULTS: CFAs supported a one-factor structure of the AADQ (for youth and parent report) and a second-order DAAS solution with a total score indicated by avoidance, values impairment, and avoidance subscales. All scales and subscales displayed strong internal consistency (α = .86-.95). The AADQ and DAAS evidence good content validity based on associations with other measures. CONCLUSIONS: The AADQ and DAAS are reliable, valid measures of diabetes-specific psychological flexibility.

The Impact of COVID-19 on Pediatric Adherence and Self-Management.

The COVID-19 pandemic has presented unique circumstances that have the potential to both positively and negatively affect pediatric adherence and self-management in youth with chronic medical conditions. The following paper discusses how these circumstances (e.g., stay-at-home orders, school closures, changes in pediatric healthcare delivery) impact disease management at the individual, family, community, and healthcare system levels. We also discuss how barriers to pediatric adherence and self-management exacerbated by the pandemic may disproportionately affect underserved and vulnerable populations, potentially resulting in greater health disparities. Given the potential for widespread challenges to pediatric disease management during the pandemic, ongoing monitoring and promotion of adherence and self-management is critical. Technology offers several opportunities for this via telemedicine, electronic monitoring, and mobile apps. Moreover, pediatric psychologists are uniquely equipped to develop and implement adherence-promotion efforts to support youth and their families in achieving and sustaining optimal disease management as the current public health situation continues to evolve. Research efforts addressing the short- and long-term impact of the pandemic on pediatric adherence and self-management are needed to identify both risk and resilience factors affecting disease management and subsequent health outcomes during this unprecedented time.

How Peer Conflict Profiles and Socio-Demographic Factors Influence Type 1 Diabetes Adaptation.

OBJECTIVE: This study aimed to (a) validate the factor structure for a measure of peer conflict in youth with type 1 diabetes (T1D); (b) determine empirical patterns of peer conflict in terms of context (friend vs. nonfriend) and content (diabetes-specific vs. general) within a broader context of socio-demographic factors; and (c) examine how these patterns and socio-demographic factors relate to adolescents' T1D adherence, quality of life, and glycemic control (HbA1c). METHODS: Youth with T1D (N = 178), ages 12-18, reported demographic variables, illness duration, adherence, quality of life, and peer conflict. HbA1c was extracted from medical records. Confirmatory factor analysis validated a factor structure for the Diabetes Peer Conflict Scale (DPCS) and latent profile analysis (LPA) determined profiles of peer conflict. RESULTS: A four-factor structure emerged for the DPCS: general friend conflict, general nonfriend conflict, T1D friend conflict, and T1D nonfriend conflict. Using these factors as indicators in LPA, four profiles were confirmed: (a) Low Overall Conflict (LOC) and (b) Moderate Overall Conflict (MOC), (c) a Nonfriend Conflict (NFC), and (d) a Friend Conflict (FC) profile. Differences were not identified between diabetes specific versus general conflict. Socio-demographic variables did not predict class membership. The LOC profile reported the highest quality of life and best glycemic control, whereas the FC profile reported the lowest adherence behaviors. Conclusions: Peer conflict uniquely contributes to diabetes adaptation above and beyond socio-demographic and illness factors.

Actigraphy versus Polysomnography to Measure Sleep in Youth Treated for Craniopharyngioma.

OBJECTIVE/BACKGROUND: Youth with craniopharyngioma are at increased risk for excessive daytime sleepiness and narcolepsy. Polysomnography (PSG) is the gold standard for diagnosing sleep disorders, but is time-intensive, costly, and does not offer an in vivo measure of typical sleep routine. We determined the sensitivity, specificity, and accuracy of actigraphy compared with PSG in measuring nocturnal sleep in pediatric craniopharyngioma. PARTICIPANTS: Fifty youth with craniopharyngioma (age 3-20 years) were assessed by overnight PSG and concurrent actigraphy after surgical resection and before proton therapy. METHODS: PSG and actigraphy data were synchronized utilizing an epoch-by-epoch comparison method. Sensitivity, specificity, and accuracy were calculated using measures of true wake, true sleep, false wake, and false sleep. Bland-Altman plots were conducted to further assess level of agreement. RESULTS: Actigraphy was 93% sensitive (true sleep [TS]) and 87% accurate (ability to detect TS and true wake) in measuring sleep versus wakefulness and was a reliable measure of sleep efficiency (SE) and sleep latency (SL). Specificity (true wake) was poor (55%) and total sleep time (TST) was underestimated by an average of 15.1 min. Wake after sleep onset (WASO) was overestimated by an average of 14.7 min. CONCLUSIONS: Actigraphy was highly sensitive and accurate and was a reliable measure of SE and SL. Although there were differences in TST and WASO measurements by actigraphy and PSG, our findings provide the basis for future studies on the use of actigraphy to monitor treatment response to wakefulness-promoting medications in youth with craniopharyngioma who demonstrate excessive daytime sleepiness.

Validity, Reliability, and Measurement Invariance of the Diabetes Stress Questionnaire-Short Form.

OBJECTIVE: The purpose of this study was to develop a short form of the Diabetes Stress Questionnaire (DSQ) with adequate psychometric properties (i.e., internal consistency, convergent, criterion, discriminant validity, construct validity, and measurement invariance). METHODS: In total, 181 youth with type 1 diabetes (T1D) completed the 65-item DSQ, and archival data were obtained from 142 youth with T1D to serve as an independent cross-validation sample. Twenty-four items were chosen to retain the original eight scales of the DSQ and to maximize internal consistency and correlations to full subscales. Confirmatory factor analyses were used to evaluate the proposed factor structure of the Diabetes Stress Questionnaire-Short Form (DSQ-SF) and to assess invariance of the DSQ-SF across sex, race, grade level, glycemic control, illness duration, and annual income categories. RESULTS: The 24-item DSQ-SF was found to have good internal consistency, factor structure and fit, correlated highly to the full scale (r = .98), and was invariant across sex, race, grade level (<9th grade or >9th grade), glycemic control, illness duration, and annual income. CONCLUSIONS: The DSQ-SF appears to be a psychometrically robust measure of diabetes-specific stress in youth with T1D. Present findings suggest that the DSQ-SF has the potential to be a useful, quick, cost-effective, and comprehensive screening tool for identifying youth with T1D who may benefit from T1D-specific stress reduction interventions as a way to improve health behaviors, psychosocial well-being, and glycemic control.

Psychological Flexibility Among Youth with Type 1 Diabetes: Relating Patterns of Acceptance, Adherence, and Stress to Adaptation.

Psychological flexibility, a complex concept encompassing both acceptance and action related factors, has been identified as a target for intervention for diabetes management. Research suggests acceptance, self-management, and stress, all factors that influence psychological flexibility, have an impact on adaptation to type 1 diabetes (T1D) by youth independently. However, yet to be explored is individually varying patterns of these variables and how they may relate to diabetes adaptation outcomes. The present study aimed to establish individual variations of patterns of these factors to derive profiles of psychological flexibility, and examine their relations to the adaptation outcomes of glycemic control and health-related quality of life. Youth (N = 162, aged 12-17 years) with T1D completed the Acceptance and Action Diabetes Questionnaire, Diabetes Stress Questionnaire, Self-Care Inventory, and Pediatric Quality of Life-Diabetes Module. Hemoglobin A1c values were abstracted from medical records. Latent profile analysis yielded three profiles: High Acceptance & Adherence/Low Stress, Low Acceptance/Moderate Adherence & Stress, and Low Acceptance & Adherence/High Stress. The High Acceptance & Adherence/Low Stress group displayed significantly higher health-related quality of life and lower HbA1c compared to other groups. Fluid psychological variables, such as acceptance and diabetes stress, and adherence behaviors may be salient targets to increase psychological flexibility for individual psychosocial interventions aimed at improving adaptation to type 1 diabetes in youth.