Telehealth behavioral treatment for medication nonadherence: a pilot and feasibility study.

OBJECTIVE: To evaluate an individually tailored multicomponent nonadherence treatment protocol using a telehealth delivery approach in adolescents with inflammatory bowel disease. METHODS: Nine participants, age 13.71±1.35 years, completed a brief treatment online through Skype. Medication nonadherence, severity of disease, and feasibility/acceptability data were obtained. RESULTS: Adherence increased markedly from 62% at baseline to 91% for mesalamine (δ=0.63), but decreased slightly from 61% at baseline to 53% for 6-mercaptopurine /azathioprine. The telehealth delivery approach resulted in cost savings of $100 in mileage and 4 h of travel time/patient. Treatment session attendance was 100%, and the intervention was rated as acceptable, particularly in terms of treatment convenience. CONCLUSION: Individually tailored treatment of nonadherence through telehealth delivery is feasible and acceptable. This treatment shows promise for clinical efficacy to improve medication adherence and reduce costs. Large-scale testing is necessary to determine the impact of this intervention on adherence and health outcomes.

Psychosocial issues in pediatric inflammatory bowel disease: report of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.

Pediatric inflammatory bowel disease (IBD) can affect many areas of psychosocial functioning, and comprehensive medical care includes consideration of psychosocial issues as well as disease factors. The purpose of this clinical report is to review research on psychosocial functioning in pediatric IBD and to provide recommendations for care providers in the areas of psychopathology, health-related quality of life, and social, family, and school functioning. Youth with IBD are at increased risk for difficulty in all areas reviewed, and many psychosocial factors are associated with disease activity, which highlights the importance of monitoring psychosocial functioning as part of clinical care. Several interventions have empirical support or show promise for addressing psychosocial difficulty, and recommendations for monitoring and treating these issues are provided.

Evaluation of a group-based behavioral intervention to promote adherence in adolescents with inflammatory bowel disease.

OBJECTIVE: To pilot test the feasibility and acceptability of a family-based group behavioral intervention and to improve medication adherence in adolescents diagnosed with inflammatory bowel disease. METHODS: Participants were 40 adolescents aged 11-18 years diagnosed with inflammatory bowel disease and their primary caregivers, who were randomized to either a four-session Family-Based Group Behavioral Treatment or Usual Care over a 6-week period. Adherence was measured using a multi-method, multi-informant assessment involving caregiver-report and patient-report, pill count data, and electronic monitoring. RESULTS: Adherence rates ranged from 66 to 89% for 6-mercaptopurine/azathioprine and 51 to 93% for mesalamine across assessment methods. The intervention was feasible, as evidenced by the 99% treatment session attendance rate, and acceptable based on patient and caregiver report. Repeated measures analysis of variance tests revealed nonsignificant differences between the conditions from baseline to post-treatment assessments for pill count, electronic monitor, and primary caregiver-reported adherence (P's>0.05). There was a statistically significant improvement in patient-reported mesalamine adherence represented by a significant main effect for Condition (F=22.24, P<0.01; δ=0.79) and Condition×Time interaction (F=13.32, P<0.05; δ=0.69). CONCLUSION: Findings suggest potential for use of behavioral intervention to improve medication adherence in this population. This intervention may be more effective with more complex regimens (e.g. multiple doses per day) such as those prescribed with mesalamine. Further research is needed to examine this type of intervention in more diverse samples with more active disease. Use of alternative adherence measurement approaches, including electronic pill boxes and/or real-time self-report (e.g. by text messaging, electronic diaries, etc.) is also recommended.

Incorporating electronic monitoring feedback into clinical care: a novel and promising adherence promotion approach.

This paper presents case examples that document the preliminary clinical utility of using electronic monitoring (EM) feedback to tailor empirically validated adherence-promoting interventions, delivered in standard clinical practice. Challenges of utilizing EM in standard clinical practice as well as future directions are also discussed. Two adolescents referred for behavioral adherence promotion intervention are described. Each youth was provided a MEMS® bottle and one oral medication was chosen jointly by the therapist, family, and medical provider for adherence monitoring. Graphical MEMS® feedback was provided to families during intervention visits and subsequently used to tailor adherence interventions to target each family's unique needs. EM feedback was a feasible and clinically rich supplement to adherence-promoting interventions. EM facilitated identification of adherence barriers and successes, and open and non-adversarial discussions regarding adherence between patients, families, and clinicians, and provided real-time representations of patients' medication administration. These case presentations suggest that EM feedback can be a clinically useful tool when used as a supplement to an empirically supported intervention delivered in standard psychological practice aimed at adherence promotion among chronically ill youth.

Who benefits from emotional expression? An examination of personality differences among gynaecological cancer patients participating in a randomized controlled emotional disclosure intervention trial.

The present study examined the role of neuroticism and extraversion in the effects of written emotional disclosure in patients diagnosed with gynaecological cancer. It was hypothesized that high levels of neuroticism would be associated with an increase in distress after emotional disclosure as mediated by heightened negative affect and avoidance post-disclosure. Conversely, we expected high extraversion to be associated with decreased distress as mediated by heightened positive moods and a decrease in avoidance. Eighty-eight participants were randomly assigned to participate in an expressive writing task versus a control writing task. Distress and avoidance were assessed at baseline and 6 months post-writing. Negative and positive mood were assessed immediately following writing. Multiple regression confirmed that neuroticism but not extraversion moderates the effects of emotional disclosure on distress, however no significant mediating relationships were found.

Psychological screening in adolescents with type 1 diabetes predicts outcomes one year later.

AIMS: Adolescents with type 1 diabetes are at increased risk for depression and anxiety, which can adversely affect diabetes management, glycemic control, and quality of life (QOL). However, systematic psychological screening is rarely employed. We hypothesized that higher depression and anxiety screener scores would predict higher HbA1c, less frequent blood glucose monitoring (BGM), and poorer QOL one year later. Raw screener scores were expected to be more robust predictors than cutoff scores. METHODS: 150 adolescents age 13-18 with type 1 diabetes completed depression and anxiety screeners. One year later, blood glucose meters were downloaded to assess BGM frequency, HbA1c values were obtained, and caregivers rated the participants' QOL. Separate regressions were conducted for each outcome, including demographic and medical covariates. RESULTS: Higher depression scores predicted less frequent BGM (b=-0.05, p<.05) and poorer QOL (b=-0.71, p<.01), and higher state anxiety scores predicted higher HbA1c (b=0.07, p<.05). Continuous screener scores identified risk for 12-month outcomes more robustly than clinical cut-off scores. CONCLUSIONS: Psychological screeners predict diabetes outcomes one year later. Future clinical research studies should explore whether psychological screening and referral for appropriate intervention can prevent deteriorations in diabetes management and control commonly seen during adolescence.

Individually tailored treatment of medication nonadherence.

OBJECTIVE: Nonadherence is a significant health care issue in pediatric inflammatory bowel disease (IBD) that requires intervention to improve outcomes. This pilot randomized controlled trial was designed to evaluate the feasibility, acceptability, and preliminary efficacy of an individually tailored behavioral treatment for nonadherence in adolescents with IBD. PATIENTS AND METHODS: Fourteen adolescents ages 14.89 ± 2.01 years were randomly assigned to immediate care or wait list control conditions and received a manualized individually tailored behavioral intervention for nonadherence. Medication adherence, measured by pill count, served as the primary endpoint. Parents provided demographic data and ratings of intervention acceptability and patients provided disease-severity data. RESULTS: Feasibility of the treatment was demonstrated by 100% treatment session attendance for all of the patients enrolled in the trial. Both parent and patient acceptability ratings were favorable. Comparison of baseline with posttreatment percent adherence across both conditions demonstrated that treatment resulted in a 4% gain in 6-mercaptopurine/azathioprine adherence (52% at baseline; 56% at posttreatment; δ = 0.07) and a 25% gain in mesalamine adherence (43% at baseline; 68% at posttreatment; δ = 0.57). CONCLUSIONS: Individually tailored treatment of nonadherence in adolescents with IBD is feasible and may result in substantial improvement in medication adherence. Differential effect of the intervention on medications requires further investigation, but it may reflect differences in regimen complexity, concerns about medication adverse effects, and/or patient/parent preference to target more complex regimens. Large-scale testing of this intervention is needed to demonstrate effect on clinical outcomes.

Patient and parent psychosocial factors associated with health-related quality of life in pediatric inflammatory bowel disease.

OBJECTIVES: The aim of the study was to examine the mediating role of youth depressive symptoms in the relation between parent distress and youth health-related quality of life (HRQOL) in a sample of adolescents with inflammatory bowel disease (IBD). PATIENTS AND METHODS: Sixty-two adolescents, ages 13 to 17 years, with a confirmed diagnosis of IBD completed assessments of depressive symptoms and HRQOL. Each adolescent's primary caregiver completed a measure of parent stress related to his or her child's illness. Pediatric gastroenterologists provided data for disease severity assessments. RESULTS: Multiple regression analyses revealed that adolescent depressive symptoms fully mediated the relation between parent distress and several dimensions of HRQOL (ie, general well-being, emotional functioning, social functioning, and total HRQOL). Moreover, mediation was observed after statistically controlling for the effect of disease severity, IBD diagnosis, and significant demographic parameters on HRQOL. CONCLUSIONS: Findings suggest that adolescent depressive symptoms may serve as the mechanism through which parent distress is linked to poorer HRQOL in adolescents with IBD. Close monitoring of parent illness-related distress and adolescent depressive symptoms, as well as clinical interventions targeting these factors, is needed to promote optimal outcomes in adolescents with IBD.

Explaining the family conflict-glycemic control link through psychological variables in adolescents with type 1 diabetes.

To examine whether individual psychological variables mediate the family conflict-glycemic control relationship. During three study visits spanning 9 months, 147 adolescents with type 1 diabetes completed questionnaires measuring anxiety and depressive symptoms, and diabetes-specific worry. Caregivers similarly completed a measure of diabetes-specific family conflict. Blood glucose monitoring frequency and glycemic control were also obtained during study visits. Separate mediation analyses revealed that anxiety was the only individual psychological variable that mediated the caregiver-reported family conflict-glycemic control link. Anxiety accounted for 20% of the family conflict-glycemic control link, compared to 8.5% for depression and 6% for diabetes-specific worry. Results suggest that anxiety symptoms may be promoted in a family environment characterized by conflict and these symptoms have detrimental effects on glycemic control. Continued monitoring of family functioning and adolescents' anxiety symptoms, as well as refinement of interventions, is needed to promote positive health outcomes.

Perceived social support and its association with obesity-specific health-related quality of life.

OBJECTIVE: To (1) describe type and source of social support perceived by obese youth and examine associations with sociodemographic/anthropometric characteristics, and (2) examine relationships between social support and obesity-specific health-related quality of life (HRQOL). METHODS: Seventy-four obese youth and their primary caregivers participated. Youth completed the Child and Adolescent Social Support Scale and an obesity-specific HRQOL measure, Sizing Me Up. RESULTS: Close friends and parents provided the most social support and were rated most important, except for teacher informational support. Classmates and schools provided the least social support. Body mass index z-score was correlated with teacher support frequency (r = -.26, p < .05) and minority youth reported more parent support (t(72) = -2.21, p < .05). Compared with other support providers, classmate support significantly predicted most HRQOL scales (p < .001). CONCLUSIONS: Close friends, parents, and teachers are significant sources of support to youth with obesity; however, classmates play a unique role in the HRQOL of obese youth.

Family functioning and health-related quality of life in adolescents with pediatric inflammatory bowel disease.

OBJECTIVES: To examine the relationship between family functioning and health-related quality of life (HRQOL) in a sample of adolescents with inflammatory bowel disease (IBD), and to specify the domains of family functioning with which these families experience difficulties. METHODS: Sixty-two adolescents, aged 13-17 years, with a confirmed diagnosis of IBD completed assessments of HRQOL. Each adolescent's primary caregiver completed a measure of family functioning. Pediatric gastroenterologists provided data for disease severity assessments. RESULTS: A series of multivariate analyses of variance showed that adolescents from families with clinically elevated difficulties in problem solving, communication, and general family functioning endorsed lower HRQOL (i.e., social functioning, general well-being) after statistically controlling the effects of disease severity and diagnosis. As many as 25% of families reported clinically elevated difficulties across domains of family functioning. CONCLUSIONS: Findings suggest that family functioning may be an important predictor of HRQOL among the adolescents with IBD, and that many families experience difficulties in their daily interactions. Close monitoring of family functioning may be a salient feature for prevention and intervention efforts and beneficial in promoting optimal psychosocial outcomes among the adolescents with IBD.

Transitioning cognitively impaired young patients with special health needs to adult-oriented care: collaboration between medical providers and pediatric psychologists.

PURPOSE OF REVIEW: Cognitive disability places adolescents with special health needs at risk for poor health outcomes. Consequently, medical providers are faced with the challenge of deciding how to prepare cognitively impaired young adults for successful transition from child-centered to adult-oriented care. We provide a case example to illustrate this complex issue, describe research linking cognitive impairments to functioning in the context of chronic disease management, summarize current transition practices, offer recommendations to facilitate transition planning, and discuss how pediatric psychologists can assist this process. RECENT FINDINGS: Concurrent cognitive impairments and pediatric chronic illness impose significant limitations on adolescents' self-care, disease management, and transition to adult care. There is also great variability in transition practices across pediatric centers, despite published transition guidelines, and little is known about how to develop successful transition planning for cognitively impaired adolescents. SUMMARY: Transitioning cognitively impaired adolescents is a salient challenge in need of greater attention and further research. A multidisciplinary approach to transition that is tailored to the developmental, cognitive, and adaptive needs of this population can maximize the likelihood that transition will be successful.

Family functioning in the context of pediatric chronic conditions.

OBJECTIVE: The aims were to describe and compare generic family functioning in children with five different chronic conditions and healthy comparisons, and to examine the relations between family functioning and sociodemographic variables. METHODS: A secondary data analysis from six independent studies including 301 children (cystic fibrosis: n = 59; obesity: n = 28; sickle cell disease: n = 44; inflammatory bowel disease: n = 43; epilepsy: n = 70; healthy comparison group: n = 57) was conducted. In each study, parents completed the Family Assessment Device. RESULTS: Across all five chronic conditions, between 13% and 36% of families endorsed levels of functioning in the "unhealthy" range, with the greatest proportions in the following domains: communication, roles, and affective involvement. No significant group (i.e., between all six groups, namely five chronic conditions as well as healthy comparisons) differences were observed on Family Assessment Device scales (model F [35, 1335] = 0.81, p = .79). Older child age, fewer children living in the home, and lower household income were significantly related to poorer family functioning in the areas of communication, roles, affective involvement, and general functioning. CONCLUSIONS: Families of children with and without chronic conditions do not differ significantly from each other on generic family functioning. However, risk factors for poor family functioning include older child age, less children in the home, and lower household income. These risk factors combined with data suggesting that a subset of families exhibit "unhealthy functioning" warrants the need for close monitoring of how families function in the context of a pediatric condition.

Anxiety symptoms in adolescents with type 1 diabetes: association with blood glucose monitoring and glycemic control.

OBJECTIVE: To examine the prevalence of anxiety symptoms and their association with blood glucose monitoring (BGM) and glycemic control in adolescents with type 1 diabetes. METHODS: 276 adolescents and their caregivers completed measures of anxiety symptoms. Adolescents completed a measure of depressive symptoms. Demographic and family characteristics were obtained from caregiver report. Diabetes duration, regimen type, BGM frequency, and glycemic control were also collected. RESULTS: Trait anxiety symptoms that suggest further clinical assessment is needed were present in 17% of adolescents; the rate was 13% for state anxiety symptoms. Higher levels of state anxiety symptoms were associated with less frequent BGM F(14, 261) = 6.35, p < .0001, R(2) = .25, and suboptimal glycemic control, F(15, 260) = 7.97, p < .0001, R(2) = .32. State anxiety symptoms were correlates of BGM frequency and glycemic control independent of depressive symptoms. CONCLUSIONS: State anxiety symptoms are associated with less frequent BGM and suboptimal glycemic control in adolescents with type 1 diabetes.

Interactions with parents and friends among chronically ill children: examining social networks.

OBJECTIVE: Children with medical conditions often experience a combination of positive and negative social interactions with parents and friends. Adult research examining cross-domain buffering effects has documented that supportive social ties can make up for shortcomings in other social relationships. This study examined whether negative effects of strained relationships with loved ones can be buffered when children feel supported by individuals in different support networks (i.e., cross-domain buffering effects). METHOD: Children with Type I diabetes (n = 56), chronic asthma (n = 54), and cystic fibrosis (n = 17) completed questionnaires during an outpatient hospital visit that assessed perceptions of support and strain from parents and friends, quality of life, self-concept, and emotional/behavioral difficulties. Parental strain was conceptualized as parental overprotection and parental rejection. RESULTS: Hierarchical regression analyses showed that friend support buffered the adverse effects of parental strain on child quality of life, self-concept, and emotional/behavioral difficulties. Interestingly, parental support did not buffer the negative effects of experiencing strained relationships with friends; only main effects on outcome were found. These findings partially support our hypotheses of cross-domain buffering. CONCLUSIONS: In this study, friendships were a protective factor for children who experienced strained relationships with parents. In contrast, although parent support had a direct impact on child outcome, it did not make up for feeling rejected by friends. Because close relationships are often strained during medical stressors, findings underscore the importance of promoting social connectedness in chronically ill children to maximize opportunities for experiencing positive social relationships.

Gender and stress: differential psychophysiological reactivity to stress reexposure in the laboratory.

Research has shown that women are more prone to the development of depression and anxiety disorders throughout their lifetimes. Stress reactivity and adaptation to repeated stressors have been linked to depression and anxiety, but studies examining gender differences in psychophysiological responses to repeated stressors are very limited. This study examined gender differences in response to initial and repeated exposure to a laboratory stressor as well as potential mechanisms for these differences. Participants viewed a Holocaust video on two occasions with a 2-day interval between sessions. Self reported negative affect and cardiovascular reactivity were recorded at both sessions. Although gender differences were not found following initial exposure, women exhibited significantly greater heart rate (HR) and negative affect (NA) reactivity to the second exposure as compared to men. Women also reported significantly greater intrusive thoughts and avoidance after the first exposure than men, but these were not found to be significant mediators. The findings indicate that women may be more vulnerable to repeated stress exposures compared to men suggesting sensitization. The implications of our findings and suggestions for future research are discussed.

The relationship between threat appraisal and social constraints in cancer survivors and their spouses.

: Social constraints stem from unsupportive social environments and are associated with reluctance to discuss stressor-related thoughts and feelings. Support deterioration and erosion models provide a framework for explaining how a cancer patient's threat appraisal contributes to a spouse's inadvertent constraint on the patient's emotional expression. Also, based on social comparison theory and the convoy model, a discrepancy in threat appraisal between patient and spouse may create social constraints. Contrary to social cognitive processing theories, we hypothesized that threat appraisals may be an antecedent of social constraints, rather than a consequence. Cancer patients (n=75) and their spouses (n=75) completed questionnaires assessing cancer-related threat appraisals and perceived spousal social constraints at two time points. Cross-lagged panel design results suggested that patient appraisal precedes and predicts patients' perception of social constraints. However, patient and spouse appraisals did not significantly interact in predicting spousal constraints. Limitations and implications are discussed.

Math weaknesses in survivors of acute lymphoblastic leukemia compared to healthy children.

Difficulties in math are the most frequently reported area of academic deficit in survivors of acute lymphoblastic leukemia (ALL) and the most frequent academic complaint among parents of ALL survivors. However, previous studies that included measures of math skills have been limited by the use of only a single measure of math skills, most often a measure of written calculations, without any assessment of math reasoning or math application skills. Further, the nature of these math difficulties has not been adequately investigated. The purpose of this study was to examine the performance of ALL survivors using multiple measures of math skills. Performance was compared to a group of healthy controls matched for age and sex as well as to normative levels. Other measures of neuropsychological function were also administered, and the relationships between these measures and the math measures were explored. Converging evidence for math difficulties in ALL survivors compared to healthy controls and normative levels was found. While ALL survivors generally performed within the average range on measures of math skills, math performance was mostly related to memory function and dominant-hand psychomotor speed. By contrast, math performance of healthy children was mostly related to basic reading skills and visual-motor integration. These findings shed light on the nature of math difficulties in ALL survivors and have implications for intervention.