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.

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.

Contrasting Case Definitions: The ME International Consensus Criteria vs. the Fukuda et al. CFS Criteria.

This article contrasts the Myalgic Encephalomyelitis International Consensus Criteria (ME-ICC) (Carruthers et al., 2011) with the Fukuda et al. (1994) CFS criteria. Findings indicated that the ME-ICC case definition criteria identified a subset of patients with more functional impairments and physical, mental and cognitive problems than the larger group of patients meeting the Fukuda et al. (1994) criteria. The sample of patients meeting ME-ICC criteria also had significantly greater rates of psychiatric comorbidity. These findings suggest that utilizing the ME-ICC may identify a more homogenous group of individuals with severe symptomatology and functional impairment. Implications of the high rates of psychiatric comorbidity found in the ME sample are discussed.

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

Examining the energy envelope and associated symptom patterns in chronic fatigue syndrome: does coping matter?

OBJECTIVE/Hypothesis The objective of this study was to examine sub-types of individuals with chronic fatigue syndrome based on variables that are associated with the energy envelope theory and to examine the role of coping strategies in explaining the differences found between the subtypes. METHODS Cluster analysis was used. Grouping variables included physical functioning, post-exertional malaise severity, and the extent to which an individual was outside of the energy envelope. These clusters were evaluated using discriminant function analysis to determine whether they could be differentiated based on coping styles. RESULTS Cluster analysis identified three groups. Clusters 1 and 2 were consistent with the energy envelope theory. However, Cluster 3 was characterized by patients with the most impairment, but they were to a lesser extent exceeding their energy envelope. Coping strategies explained a small percentage (10%) of the variance in differentiating the clusters. DISCUSSION Energy maintenance may be associated with improved functioning and less severe symptoms for some. However, patients in Cluster 3 were closer to remaining within their energy envelope and also used higher levels of adaptive coping but were more impaired than Cluster 2. This suggests that adaptive coping strategies were not associated with improved health, as members of Cluster 3 were severely limited in functioning.

Adolescent peer relationships and behavior problems predict young adults' communication on social networking websites.

This study examined online communication on social networking web pages in a longitudinal sample of 92 youths (39 male, 53 female). Participants' social and behavioral adjustment was assessed when they were ages 13-14 years and again at ages 20-22 years. At ages 20-22 years, participants' social networking website use and indicators of friendship quality on their web pages were coded by observers. Results suggested that youths who had been better adjusted at ages 13-14 years were more likely to be using social networking web pages at ages 20-22 years, after statistically controlling for age, gender, ethnicity, and parental income. Overall, youths' patterns of peer relationships, friendship quality, and behavioral adjustment at ages 13-14 years and at ages 20-22 years predicted similar qualities of interaction and problem behavior on their social networking websites at ages 20-22 years. Findings are consistent with developmental theory asserting that youths display cross-situational continuity in their social behaviors and suggest that the conceptualization of continuity may be extended into the online domain.