Michele Herzer

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.

Psychosocial Issues in Pediatric Inflammatory Bowel Disease: Report of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition

ABSTRACT 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.

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 (&dgr;=0.63), but decreased slightly from 61% at baseline to 53% for 6-mercaptopurine /azathioprine. The telehealth delivery approach resulted in cost savings of

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

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.

Evaluation of a group-based behavioral intervention to promote adherence in adolescents with 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 adolescents primary caregiver completed a measure of parent stress related to his or her childs 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.

Individually tailored treatment of medication nonadherence.

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; &dgr;=0.79) and Condition×Time interaction (F=13.32, P<0.05; &dgr;=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

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; &dgr; = 0.07) and a 25% gain in mesalamine adherence (43% at baseline; 68% at posttreatment; &dgr; = 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.

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

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

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 adolescents 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.