Adherence to outpatient oral medication regimens in adolescent hematopoietic stem cell transplant recipients.

Purpose: Hematopoietic stem cell transplantation (HSCT) is an increasingly utilized treatment option for adolescents with many life-threatening diagnoses. Suboptimal adherence may result in compromised treatment effectiveness and increased risk of adverse medical outcomes.

Method: This study examined adherence patterns in six adolescents (ages 12-18) who had undergone HSCT.

Changes in daily activity patterns of caregivers of children with newly diagnosed epilepsy: a case-controlled design.

Having a child diagnosed with a chronic pediatric illness is a major stressor for families that can alter their daily lives. The primary study aim was to use Daily Phone Diaries (DPDs), a cued-recall procedure to track parents through their activities over a 24-hour period, to assess the activity patterns of a group of caregivers with a child diagnosed with new-onset epilepsy (group with NOE; n=30) and a group of matched comparisons (comparison group; n=29). The time caregivers spent in sleep and recreation was evaluated over the first 5.

The clinical utility of health-related quality of life screening in a pediatric inflammatory bowel disease clinic.

Background: Adjusting to symptom flares, treatment regimens, and side effects places youth with inflammatory bowel disease (IBD) at increased risk for emotional and behavioral problems and adverse disease outcomes. Implementation of psychosocial screening into clinical practice remains a challenge. This study examines the clinical utility of health-related quality of life (HRQOL) screening in predicting disease outcome and healthcare utilization.

Self-management in pediatric inflammatory bowel disease: A clinical report of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.

This clinical report aims to review key self-management and adherence issues in pediatric inflammatory bowel disease (IBD) and to provide recommendations for health care providers regarding evidence-based assessment and treatment approaches to promote optimal self-management. Self-management difficulties in the form of nonadherence to treatment regimens are common in pediatric IBD and are influenced by various disease-related, individual, family, and health professional relationship factors. To promote adaptive self-management, health care providers are encouraged to adopt a long-term preventive orientation, which includes routine screening of barriers to self-management and nonadherence in the context of routine clinic appointments.

Impact of blood glucose monitoring affect on family conflict and glycemic control in adolescents with type 1 diabetes.

Background: This longitudinal study examined whether diabetes-specific family conflict and glycemic control were impacted/explained by negative affective responses to blood glucose checks (Negative BGM Affect).

Method: Adolescents (N=150, ages 13-18 years) with type 1 diabetes, and their caregivers, completed measures of Negative BGM Affect, diabetes-specific family conflict, and glycemic control (i.e.

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.

Behavioral functioning and treatment adherence in pediatric eosinophilic gastrointestinal disorders.

Objective:  To examine behavioral predictors of treatment adherence in patients with eosinophilic gastrointestinal disorders (EGID).

Methods:   Participants were 96 patients 2.5-18 yr of age with eosinophilic esophagitis or eosinophilic gastroenteritis and their caregivers (mother, father).

System for integrated adherence monitoring: real-time non-adherence risk assessment in pediatric kidney transplantation.

This study reports initial results of the development of the SIAM, a non-adherence risk assessment system for tacrolimus and sirolimus for the pediatric kidney transplant population. Forty-eight youths between 10 and 25 yr of age diagnosed with chronic kidney disease or a kidney transplant used an electronic pill bottle (EM; time stamps each bottle opening) to dispense their medication for at least 30 days or until their next clinic appointment. Youth also completed a self-report adherence measure, and standard deviations were calculated for the last four medication serum trough levels obtained for each patient.

Psychosocial Assessment Tool 2.0_General: validity of a psychosocial risk screener in a pediatric kidney transplant sample.

To present the preliminary psychometric properties of the PAT2.0_GEN, a brief, caregiver completed screener of psychosocial for children who were recipients of kidney transplants. Caregivers of 45 children and adolescents with kidney transplants completed the PAT2.

Prediction of adolescents' glycemic control 1 year after diabetes-specific family conflict: the mediating role of blood glucose monitoring adherence.

Objective: To test adherence to blood glucose monitoring (BGM) as a mediator between diabetes-specific family conflict and glycemic control (hemoglobin A(1c) [HbA(1c)] levels) for 1 year.

Design: Three waves of prospective data spanning 1 year.

Setting: Diabetes clinic in a large tertiary care children's hospital in the Midwestern United States.

Electronic monitoring feedback to promote adherence in an adolescent with Fanconi Anemia.

Objective: This report describes an intervention to promote medication adherence and treat comorbid psychological symptoms in a 17 year-old female with Fanconi Anemia. The patient presented with a typical adherence rate estimated at 25% and self-reported symptoms of depressed mood and anxiety.

Method: Our comprehensive treatment approach integrated electronic monitoring (EM), an emerging strategy for adherence promotion, and motivational interviewing (MI) within an evidence-based cognitive-behavioral therapy (CBT) framework.

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.

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.

Piloting behavioral family systems therapy to improve adherence among adolescents with HIV: a case series intervention study.

Adolescents with HIV are at high risk for suboptimal adherence but have been ignored by the literature. Treatment outcome and feasibility data for the first-known adaptation of Behavioral Family Systems Therapy (BFST) targeting adherence among adolescents with HIV are presented for four adolescents with suboptimal adherence. The intervention was delivered in an alternating home-based and telehealth format and a multi-method adherence assessment approach was used.

Efficacy and flexibility impact perceived adherence barriers in pediatric kidney post-transplantation.

The alarming rates of medication nonadherence and its detrimental effect on long-term graft survival in pediatric kidney transplantation has called attention to identifying modifiable factors that promote better adherence and subsequent transplant outcomes. In a sample of 45 adolescent kidney transplant recipients (14.7 ± 3.

Oral medication adherence and disease severity in pediatric inflammatory bowel disease.

Objective: The purpose of this study was to examine the relationship of oral medication adherence and perceived adherence barriers with disease severity in a sample of adolescents with inflammatory bowel disease (IBD).

Methods: Participants included 62 adolescents, aged 13-17 years, diagnosed with IBD, and their parents. Data on the measures of parent-rated and patient-rated oral medication adherence and related barriers, behavioral and emotional functioning per parent report and self-report, and disease severity per medical chart reported by a physician were obtained.

Paediatric parenting stress in inflammatory bowel disease: application of the Pediatric Inventory for Parents.

Background: The psychosocial functioning of caregivers of adolescents managing inflammatory bowel disease (IBD) has been understudied; yet, poor caregiver functioning can place youth at risk for compromised disease management. The current study addressed this limitation by examining a sample of caregivers of adolescents with IBD. Study aims included (1) documenting rates of paediatric parenting stress; (2) identifying associated sociodemographic predictors of parenting stress; and (3) comparing previously published rates of parenting stress to those within other paediatric chronic conditions, including cancer, type 1 diabetes, obesity, sickle cell disease, bladder exstrophy.

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.

Treatment adherence in paediatric inflammatory bowel disease: perceptions from adolescent patients and their families.

The objective of this study was to examine patient- and parent-perceived factors that impact adherence to inflammatory bowel disease treatment using a qualitative descriptive individual interview approach. Sixteen adolescents and their parents were recruited from May through August 2007 and interviewed about medication adherence using an open-ended semi-structured interview format. Interviews were audio recorded, transcribed, and coded into themes.

The Allocation of Treatment Responsibility scale: a novel tool for assessing patient and caregiver management of pediatric medical treatment regimens.

The purpose of the current study is to report preliminary psychometric properties of the ATR scale, a brief measure of the distribution of treatment tasks across the family members of children with a kidney transplant. Pediatric patients with renal transplants (ages 7-18 yr) and their caregivers completed the ATR and measures of adherence and family functioning. Internal consistency for the ATR (total score and subscales) was strong (range α = 0.

Preparing for transition? The allocation of oral medication regimen tasks in adolescents with renal transplants.

A mixed-methods design was utilized to examine strategies that families use to manage the post-transplant oral medication regimen of adolescents with renal transplants. Seventeen adolescents and their caregivers were administered structured interviews assessing the tasks that families identified as comprising the oral medication regimen, how tasks were allocated across family members and how the dyad decided on the allocation of tasks. Adherence was assessed via electronic pill bottles and calculated by dividing the number of doses taken by those prescribed.

Interventions with adherence-promoting components in pediatric type 1 diabetes: meta-analysis of their impact on glycemic control.

Objective: To review interventions with adherence-promoting components and document their impact on glycemic control via meta-analysis.

Research Design And Methods: Data from 15 studies that met the following criteria were subjected to meta-analysis: 1) randomized, controlled trial, 2) study sample included youth aged <19 years, 3) youth had type 1 diabetes, 4) study reported results on glycemic control; and 5) study reported use of adherence- or self-management-promoting components.

Results: The 15 studies included 997 youth with type 1 diabetes.

Responsibility sharing between adolescents with type 1 diabetes and their caregivers: importance of adolescent perceptions on diabetes management and control.

Objective: To analyze associations between factor scores for caregiver responsibility for direct and indirect diabetes management tasks with glycemic control and blood glucose monitoring (BGM) frequency.

Methods: Two hundred and sixty one adolescents with type 1 diabetes and their caregivers completed the Diabetes Family Responsibility Questionnaire (DFRQ). Data on diabetes management (e.

Health-related quality of life across pediatric chronic conditions.

Objective: To compare health-related quality of life (HRQOL) across 8 pediatric chronic conditions, including 5 understudied populations, and examine convergence between youth self-report and parent-proxy report.

Study Design: Secondary data from 589 patients and their caregivers were collected across the following conditions: obesity, eosinophilic gastrointestinal disorder, inflammatory bowel disease, epilepsy, type 1 diabetes, sickle cell disease, post-renal transplantation, and cystic fibrosis. Youth and caregivers completed age-appropriate self-report and/or parent-proxy report generic HRQOL measures.