Moderating Effect of Depression on Glycemic Control in an eHealth Intervention Among Black Youth With Type 1 Diabetes: Findings From a Multicenter Randomized Controlled Trial.

BACKGROUND: Black adolescents with type 1 diabetes (T1D) are at increased risk for suboptimal diabetes health outcomes; however, evidence-based interventions for this population are lacking. Depression affects a high percentage of youth with T1D and increases the likelihood of health problems associated with diabetes. OBJECTIVE: Our aim was to test whether baseline levels of depression moderate the effects of a brief eHealth parenting intervention delivered to caregivers of young Black adolescents with T1D on youths' glycemic control. METHODS: We conducted a multicenter randomized controlled trial at 7 pediatric diabetes clinics located in 2 large US cities. Participants (N=149) were allocated to either the intervention group or a standard medical care control group. Up to 3 intervention sessions were delivered on a tablet computer during diabetes clinic visits over a 12-month period. RESULTS: In a linear mixed effects regression model, planned contrasts did not show significant reductions in hemoglobin A1c (HbA1c) for intervention adolescents compared to controls. However, adolescents with higher baseline levels of depressive symptoms who received the intervention had significantly greater improvements in HbA1c levels at 6-month follow-up (0.94%; P=.01) and 18-month follow-up (1.42%; P=.002) than those with lower levels of depression. Within the intervention group, adolescents had a statistically significant reduction in HbA1c levels from baseline at 6-month and 18-month follow-up. CONCLUSIONS: A brief, culturally tailored eHealth parenting intervention improved health outcomes among Black adolescents with T1D and depressive symptoms. TRIAL REGISTRATION: ClinicalTrials.gov NCT03168867; https://clinicaltrials.gov/study/NCT03168867.

Diabetes distress in urban Black youth with type 1 diabetes and their caregivers: associations with glycemic control, depression, and health behaviors.

OBJECTIVES: Adolescents with type 1 diabetes (T1D) and their caregivers endorse high diabetes distress (DD). Limited studies have documented the impact of DD on Black youth. The aims of the present study were to (1) describe DD among a sample of Black adolescents with T1D and their caregivers, (2) compare their DD levels with published normative samples, and (3) determine how DD relates to glycemic outcomes, diabetes self-management, parental monitoring of diabetes, and youth depressive symptoms. METHODS: Baseline data from a multicenter clinical trial were used. Participants (N = 155) were recruited from 7 Midwestern pediatric diabetes clinics. Hemoglobin A1c (HbA1c) and measures of DD, parental monitoring of diabetes care, youth depression and diabetes management behaviors were obtained. The sample was split into (1) adolescents (ages 13-14; N = 95) and (2) preadolescents (ages 10-12; N = 60). Analyses utilized Cohen's d effect sizes, Pearson correlations, t-tests, and multiple regression. RESULTS: DD levels in youth and caregivers were high, with 45%-58% exceeding either clinical cutoff scores or validation study sample means. Higher DD in youth and caregivers was associated with higher HbA1c, lower diabetes self-management, and elevated depressive symptoms, but not with parental monitoring of diabetes management. CONCLUSIONS: Screening for DD in Black youth with T1D and caregivers is recommended, as are culturally informed interventions that can reduce distress levels and lead to improved health outcomes. More research is needed on how systemic inequities contribute to higher DD in Black youth and the strategies/policy changes needed to reduce these inequities.

Racial Residential Segregation and the Health of Black Youth With Type 1 Diabetes.

OBJECTIVES: Black youth with type 1 diabetes (T1D) are at heightened risk for suboptimal glycemic control. Studies of neighborhood effects on the health of youth with T1D are limited. The current study investigated the effects of racial residential segregation on the diabetes health of young Black adolescents with T1D. METHODS: A total of 148 participants were recruited from 7 pediatric diabetes clinics in 2 US cities. Racial residential segregation (RRS) was calculated at the census block group level based on US Census data. Diabetes management was measured via self-report questionnaire. Hemoglobin A1c (HbA1c) information was gathered from participants during home-based data collection. Hierarchical linear regression was used to test the effects of RRS while controlling for family income, youth age, insulin delivery method (insulin pump versus syringe therapy), and neighborhood adversity. RESULTS: HbA1c was significantly associated with RRS in bivariate analyses, whereas youth-reported diabetes management was not. In hierarchical regression analyses, whereas family income, age, and insulin delivery method were all significantly associated with HbA1c in model 1, only RRS, age, and insulin delivery method were significantly associated with HbA1c in model 2. Model 2 explained 25% of the variance in HbA1c (P = .001). CONCLUSIONS: RRS was associated with glycemic control in a sample of Black youth with T1D and accounted for variance in HbA1c even after controlling for adverse neighborhood conditions. Policies to reduce residential segregation, along with improved screening for neighborhood-level risk, hold the potential to improve the health of a vulnerable population of youth.

Psychometric properties of the diabetes skills checklist for adolescents with type 1 diabetes and their parents.

OBJECTIVE: Among adolescents with type 1 diabetes, research has found that their perception of their diabetes management is an important predictor of actual diabetes management. There is a need for measures that assess adolescents' perception of their ability to independently complete daily diabetes self-care tasks. The current study examined the psychometric properties of the Diabetes Skills Checklist Teen-Report (DSC-T) and DSC Parent of Teen-Report (DSC-PT), which assess perceived independence in diabetes self-care skills. RESEARCH DESIGN AND METHODS: Data were from 1450 adolescents aged 12 to 18 years and their parents who participated in the Diabetes Camp Matters Study. Families completed the DSC as well as other questionnaires online assessing demographic and diabetes-related information, diabetes strengths, and diabetes-specific emotional distress. RESULTS: Exploratory factor analysis revealed a 14-item DSC-T and 12-item DSC-PT, both with excellent internal consistency and concurrent validity. Both the DSC-T and DSC-PT were found to be positively correlated with diabetes strengths and negatively correlated with HbA1c, and the DSC-PT was significantly correlated with parent-reported diabetes distress. Adolescents who used insulin pumps and continuous glucose monitoring reported higher perceived independence in diabetes self-care skills compared to adolescents who used insulin pens/syringes or blood glucose meters. No differences were found based on demographic characteristics. CONCLUSIONS: The DSC-T and DSC-PT have strong potential to be used during diabetes clinic visits to spark discussion regarding adolescents' self-care, which would allow for a more successful transfer of diabetes care from parent to adolescent, and eventually, the transition from pediatric to adult healthcare.

Optimizing Recruitment of Black Adolescents into Behavioral Research: A Multi-Center Study.

OBJECTIVES: Adolescents of color are underrepresented in behavioral health research. Study aims were to quantify the amount and types of outreach effort needed to recruit young Black adolescents with type 1 diabetes and their primary caregiver into a clinical trial evaluating a parenting intervention and to determine if degree of recruitment difficulty was related to demographic, diabetes-related, or family characteristics. METHODS: Data were drawn from a multi-center clinical trial. Participants (N = 155) were recruited from seven pediatric diabetes clinics. Contact log data were used to quantify both number/type of contacts prior to study enrollment as well as length of time to enrollment. Families were coded as having expedited recruitment (ER) or prolonged recruitment (PR). Baseline study data were used to compare ER and PR families on sociodemographic factors, adolescent diabetes management and health status and family characteristics such as household organization and family conflict. RESULTS: Mean length of time to recruit was 6.6 months and mean number of recruitment contacts was 10.3. Thirty-nine percent of the sample were characterized as PR. These families required even higher levels of effort (mean of 9.9 months to recruit and 15.4 contacts). There were no significant between-group differences on any baseline variable for ER and PR families, with the exception of family income. CONCLUSIONS: Researchers need to make persistent efforts in order to successfully enroll adolescents of color and their caregivers into clinical trials. Social determinants of health such as family resources may differentiate families with prolonged recruitment within such samples.

Effects of family and neighborhood risks on glycemic control among young black adolescents with type 1 diabetes: Findings from a multi-center study.

While individual and family risk factors that contribute to health disparities in children with type 1 diabetes have been identified, studies on the effects of neighborhood risk factors on glycemic control are limited, particularly in minority samples. This cross-sectional study tested associations between family conflict, neighborhood adversity and glycemic outcomes (HbA1c) in a sample of urban, young Black adolescents with type 1 diabetes(mean age = 13.4 ± 1.7), as well as whether neighborhood adversity moderated the relationship between family conflict and HbA1c. Participants (N = 128) were recruited from five pediatric diabetes clinics in two major metropolitan US cities. Diabetes-related family conflict was measured via self-report questionnaire (Diabetes Family Conflict Scale; DFCS). Neighborhood adversity was calculated at the census block group level based on US census data. Indictors of adversity were used to calculate a neighborhood adversity index (NAI) for each participant. Median family income was $25,000, suggesting a low SES sample. In multiple regression analyses, DFCS and NAI both had significant, independent effects on glycemic control (ß = 0.174, P = 0.034 and ß = 0.226 P = 0.013, respectively) after controlling for child age, family socioeconomic status and insulin management regimen. Tests of effects of the NAI and DFCS interaction on HbA1c found no significant moderating effects of neighborhood adversity. Even within contexts of significant socioeconomic disadvantage, variability in degree of neighborhood adversity predicts diabetes-related health outcomes in young Black adolescents with type 1 diabetes. Providers should assess social determinants of health such as neighborhood resources that may impact adolescents' ability to maintain optimal glycemic control.

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.

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.

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.

Parent-adolescent dyadic diabetes distress: Associations with A1c and diabetes-related strengths.

INTRODUCTION: This study examined concordance and discordance between parent-adolescent report of diabetes-specific emotional distress and associations with A1c and diabetes-related strengths. Diabetes strengths refer to adaptive behaviors and attitudes that enhance resilience in living with diabetes. METHOD: One thousand two hundred sixteen adolescent-parent dyads completed measures of diabetes distress and adolescent-reported diabetes strengths. Polynomial regression with response surface analysis assessed concordant and discordant reports of adolescent-parent distress and independent associations of each reporter's distress on measures of diabetes strengths and A1c. RESULTS: A1c was lower in concordantly lower distress dyads compared to concordantly higher distress dyads. For discordant dyadic reports, A1c was higher when distress was higher for parents and lower for adolescents compared to low-parent-high-adolescent distress. Greater diabetes-related strengths were reported when distress was concordantly low among dyads and fewer strengths were reported when distress was concordantly higher. Greater strengths were reported when distress was lower for adolescents and higher for parents compared to high-adolescent/low-parent distress. Dyadic distress for both A1c and diabetes strengths were robust when adjusted for significant demographic predictors of outcome including age, race, income, pump use, and continuous glucose monitoring use. DISCUSSION: A1c and diabetes strengths are associated with degree of concordant and discordant reports of diabetes distress among adolescent-parent dyads. Programmatic interventions should target parents and adolescents, particularly when diabetes distress is higher among both adolescents and their parents. (PsycINFO Database Record

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.

Screening and support for emotional burdens of youth with type 1 diabetes: Strategies for diabetes care providers.

Multiple sources of burden for youth with type 1 diabetes (T1D) impact key outcomes including quality of life, self-management, and glycemic control. Professional diabetes organizations recommend diabetes care providers screen for psychosocial and behavioral challenges and implement strategies to support youth with T1D. The purpose of this article is to review the literature and recommend practical strategies medical providers can use for screening and behavioral support for youth with diabetes and their families. As part of their routine medical care, diabetes care providers are well-positioned to identify and intervene to address emotional distress related to the burdens of living with diabetes. In collaboration with multidisciplinary team members, including psychologists and mental health professionals, medical providers may be able to successfully implement brief behavioral strategies for screening and providing emotional support.

Psychometric Properties of the Problem Areas in Diabetes: Teen and Parent of Teen Versions.

Objective: This study adds to the literature on the psychometric properties of the Problem Areas in Diabetes-Teen (PAID-T) and Parent (P-PAID-T) Versions. It also aims to shorten the measures of diabetes-specific distress, determine construct validity, and establish cutoff scores. Methods: Data are from two independent studies (N = 1,265). Adolescent-caregiver dyads completed measures of emotional distress, diabetes strengths, hemoglobin A1c, blood glucose checks, and average blood glucose. Exploratory and confirmatory factor analyses assessed factor structures for each measure. Correlational analyses provided support for concurrent validity. Receiver-operating characteristic curves identified cutoff scores based on clinically meaningful groups identified with latent profile analysis. Results: Analyses supported a 14-item PAID-T and a 15-item P-PAID-T, with preliminary cutoff scores ≥44 and ≥54, respectively. Measures were associated with emotional and health outcomes as hypothesized. Conclusions: The PAID-T and P-PAID-T are valid, reliable, and useful measures of diabetes-specific distress for teenagers with type 1 diabetes and parents of teenagers.

An assessment of fatigue in patients with postural orthostatic tachycardia syndrome.

Individuals with postural orthostatic tachycardia syndrome share many symptoms with those who have chronic fatigue syndrome; one of which is severe fatigue. Previous literature found that those with chronic fatigue syndrome experience many forms of fatigue. The goal of this study was to investigate whether individuals with postural orthostatic tachycardia syndrome also experience multidimensional fatigue and whether these individuals can be clustered into subgroups based on the types of fatigue they endorse. A convenience sample of 138 participants (aged 14-29) with postural orthostatic tachycardia syndrome completed questionnaires that assessed fatigue, brain fog symptom severity, activities that improve brain fog, and brain fog-related disability. An exploratory factor analysis was conducted on the Fatigue Types Questionnaire, and a three-factor solution was produced. Factor scores were then used to cluster the patients into groups using a TwoStep cluster analysis. This resulted in two clusters, a high severity group and a low severity group. The clusters were then compared on a number of items related to symptom expression. Individuals within the more severe cluster had significantly more brain fog at the beginning and end of the survey when compared to cluster two. Those in the more severe cluster also described more activity impairment as well as more frequent, more severe, and more debilitation from postural orthostatic tachycardia syndrome and brain fog. The findings of the factor analysis suggest that patients with postural orthostatic tachycardia syndrome experience fatigue as a multidimensional construct and they also can be subgrouped based on symptom severity.

Caring for people with severe myalgic encephalomyelitis: An interpretative phenomenological analysis of parents' experiences.

Experiences of parents who care for sons or daughters with severe myalgic encephalomyelitis are rarely discussed within the literature. Narratives of parent-carers in Lost Voices from a Hidden Illness were analyzed using interpretative phenomenological analysis. This study aimed to give voices to those who care for individuals with myalgic encephalomyelitis and are often stigmatized and inform future research supporting parent-carers. Results included themes of identity change, guilt, feeling like outsiders, uncertainty, changing perceptions of time, coping mechanisms, and improvement/symptom management. Findings could inform the development of carer-focused interventions and provide vital information to health professionals about parent-carers' lived experience.

Are Myalgic Encephalomyelitis and chronic fatigue syndrome different illnesses? A preliminary analysis.

Considerable discussion has transpired regarding whether chronic fatigue syndrome is a distinct illness from Myalgic Encephalomyelitis. A prior study contrasted the Myalgic Encephalomyelitis International Consensus Criteria with the Fukuda and colleagues' chronic fatigue syndrome criteria and found that the Myalgic Encephalomyelitis International Consensus Criteria identified a subset of patients with greater functional impairment and physical, mental, and cognitive problems than the larger group who met Fukuda and colleagues' criteria. The current study analyzed two discrete data sets and found that the Myalgic Encephalomyelitis International Consensus Criteria identified more impaired individuals with more severe symptomatology.

A Cross Cultural Comparison of Disability and Symptomatology Associated with CFS.

Few studies have compared symptomatology and functional differences experienced by patients with chronic fatigue syndrome (CFS) across cultures. The current study compared patients with CFS from the United States (US) to those from the United Kingdom (UK) across areas of functioning, symptomatology, and illness onset characteristics. Individuals in each sample met criteria for CFS as defined by Fukuda et al. (1994). These samples were compared on two measures of disability and impairment, the DePaul Symptom Questionnarie (DSQ) and the Medical outcomes study 36-item short-form health survey (SF-36). Results revealed that the UK sample was significantly more impaired in terms of mental health and role emotional functioning, as well as specific symptoms of pain, neurocognitive difficulties, and immune manifestations. In addition, the UK sample was more likely to be working rather than on disability. Individuals in the US sample reported more difficulties falling asleep, more frequently reported experiencing a sudden illness onset (within 24 hours), and more often reported that the cause of illness was primarily due to physical causes. These findings suggest that there may be important differences in illness characteristics across individuals with CFS in the US and the UK, and this has implications for the comparability of research findings across these two countries.

Prevalence and Severity of Symptoms in a Sample of African Americans and White Participants.

According to the Centers for Disease Control and Prevention (2013), African Americans have a substantially greater prevalence of a range of health conditions when compared to other racial or ethnic groups. Many of these conditions have been attributed to the historical and contemporary social and economic disparities faced by the African American community. While many health conditions occur at a higher rate in African Americans, it is unclear whether there are specific symptom clusters that may also be more prevalent in African Americans as a result of these disparities. Potential differences in symptomology have not been thoroughly examined between African Americans and White populations. The current study compares the prevalence and pain severity of symptoms among a sample of African Americans and White participants. Significant differences in symptom prevalence were found in disturbed sleep and reproductive areas. African Americans also experience more pain due to symptoms related to orthostatic intolerance. Implications of this finding are discussed.

Chronic Fatigue Syndrome and Myalgic Encephalomyelitis: Toward An Empirical Case Definition.

Current case definitions of Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) have been based on consensus methods, but empirical methods could be used to identify core symptoms and thereby improve the reliability. In the present study, several methods (i.e., continuous scores of symptoms, theoretically and empirically derived cut off scores of symptoms) were used to identify core symptoms best differentiating patients from controls. In addition, data mining with decision trees was conducted. Our study found a small number of core symptoms that have good sensitivity and specificity, and these included fatigue, post-exertional malaise, a neurocognitive symptom, and unrefreshing sleep. Outcomes from these analyses suggest that using empirically selected symptoms can help guide the creation of a more reliable case definition.