Kevin A. Hommel

Pediatric Self-management: A Framework for Research, Practice, and Policy

Self-management of chronic pediatric conditions is a formidable challenge for patients, families, and clinicians, with research demonstrating a high prevalence of poor self-management and nonadherence across pediatric conditions. Nevertheless, effective self-management is necessary to maximize treatment efficacy and clinical outcomes and to reduce unnecessary health care utilization and costs. However, this complex behavior is poorly understood as a result of insufficient definitions, reliance on condition-specific and/or adult models of self-management, failure to consider the multitude of factors that influence patient self-management behavior, and lack of synthesis of research, clinical practice, and policy implications. To address this need, we present a comprehensive conceptual model of pediatric self-management that articulates the individual, family, community, and health care system level influences that impact self-management behavior through cognitive, emotional, and social processes. This model further describes the relationship among self-management, adherence, and outcomes at both the patient and system level. Implications for research, clinical practice, and health care policy concerning pediatric chronic care are emphasized with a particular focus on modifiable influences, evidence-based targets for intervention, and the role of clinicians in the provision of self-management support. We anticipate that this unified conceptual approach will equip stakeholders in pediatric health care to (1) develop evidence-based interventions to improve self-management, (2) design programs aimed at preventing the development of poor self-management behaviors, and (3) inform health care policy that will ultimately improve the health and psychosocial outcomes of children with chronic conditions.

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. RESULTS Youth diagnosed with eosinophilic gastrointestinal disorder and obesity had lower HRQOL than other pediatric conditions by parent report. Caregivers reported lower HRQOL by proxy report than youth self-reported across most subscales. CONCLUSIONS Use of brief, easily administered, and reliable assessments of psychosocial functioning, such as HRQOL, may provide clinicians additional opportunities for intervention or services targeting improved HRQOL relative to the needs of each population.

Quality of life in paediatric migraine: characterization of age‐related effects using PedsQL 4.0

The aim of this study was to measure quality of life (QOL) across a broad age range of paediatric migraine patients. Children and adolescents (n = 686) with migraine completed the Pediatric Quality of Life Inventory, version 4.0 (PedsQL 4.0) and a standardized headache assessment at an initial clinic visit. The sample size for each PedsQL age group was: age 2-4 = 21, age 5-7 = 86, age 8-12 = 298, and age 13-18 = 281. Mean total score was 72.7 ± 14.8, significantly less than healthy norms (P < 0.01). Teens reported lower School Functioning than older and young children (P < 0.05) and young children reported lower Social Functioning than older children and teens (P < 0.001). A moderate relation was found between self and parent report. Age-related effects on QOL have implications for the evaluation and management of migraine in paediatric practice. The self and parent report forms of the PedsQL can be used in a practice setting.

Medication Adherence and Quality of Life in Pediatric Inflammatory Bowel Disease

OBJECTIVE To examine the relationship between medication adherence and quality of life (QOL) in adolescent patients with inflammatory bowel disease (IBD) utilizing a multimethod adherence assessment approach. METHODS Medication adherence in 36 adolescents with IBD was assessed via interviews, pill counts, and biological assays. QOL was assessed via patient and parent report. Pediatric gastroenterologists provided disease severity assessments. RESULTS Hierarchical multiple regression analyses revealed that adherence contributed significant variance to patient-reported QOL but not parent-reported QOL. Nonadherence to 6-MP/azathioprine was related to poorer patient-reported physical health QOL. Greater self-reported 5-ASA adherence was related to poorer overall psychological health QOL, and particularly social functioning QOL. CONCLUSIONS Results provide preliminary support for the negative effects of 6-MP/azathioprine nonadherence on QOL and an inverse relationship between 5-ASA adherence and QOL in this population. Adherence burden in patients and the utility of multimethod adherence assessment in research are discussed.

Medication adherence and health care utilization in pediatric chronic illness: a systematic review.

BACKGROUND AND OBJECTIVE: Advanced understanding of modifiable predictors of health care use in pediatric chronic illness is critical to reducing health care costs. We examined the relationship between medication non-adherence and health care use in children and adolescents who have a chronic medical condition. METHODS: A systematic review of articles by using PubMed, PsycINFO, and CINAHL was conducted. Additional studies were identified by searching reference sections of relevant manuscripts. Studies that tested the relationship between medication non-adherence and health care use (ie, hospitalizations, emergency department visits, outpatient visits) or cost in children and adolescents (mean age ≤18 years) who have a chronic medical condition were included. Extraction of articles was completed by using predefined data fields. RESULTS: Ten studies met our inclusion criteria. Nine of the 10 studies reviewed (90%) demonstrated a relationship between medication non-adherence and increased health care use. The directionality of this relationship varied depending on the outcome variable of interest. CONCLUSIONS: Medication non-adherence is related to increased health care use in children and adolescents who have a chronic medical condition and should be addressed in clinical care. Future studies should include randomized controlled trials examining the impact of adherence promotion efforts on health care use and costs.

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.

Objective versus Subjective Assessment of Oral Medication Adherence in Pediatric Inflammatory Bowel Disease

Background: The objective was to examine the prevalence and frequency of oral medication nonadherence using a multimethod assessment approach consisting of objective, subjective, and biological data in adolescents with inflammatory bowel disease (IBD). Methods: Medication adherence was assessed via pill counts, patient/parent interview, and 6‐thioguanine nucleotide (6‐TGN)/6‐methylmercaptopurine nucleotide (6‐MMPN) metabolite bioassay in 42 adolescents with IBD. Pediatric gastroenterologists provided disease severity assessments. Results: The objective nonadherence prevalence was 64% for 6‐MP/azathioprine (AZA) and 88% for 5‐aminosalicylate (5‐ASA) medications, whereas subjective nonadherence prevalence was 10% for 6‐MP/AZA and 2% for 5‐ASA. The objective nonadherence frequency was 38% for 6‐MP/AZA and 49% for 5‐ASA medications, and subjective nonadherence frequency was 6% for 6‐MP/AZA and 3% for 5‐ASA. The bioassay data revealed that only 14% of patients had therapeutic 6‐TGN levels. Conclusions: The results indicate that objectively measured medication nonadherence prevalence is consistent with that observed in other pediatric chronic illness populations, and that objective nonadherence frequency is considerable, with 40%–50% of doses missed by patients. Subjective assessments appeared to overestimate adherence. Bioassay adherence data, while compromised by pharmacokinetic variation, might be useful as a cursory screener for nonadherence with follow‐up objective assessment. Nonadherence in 1 medication might also indicate nonadherence in other medications. Clinical implications and future research directions are provided. (Inflamm Bowel Dis 2008)

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.

Barriers to Oral Medication Adherence for Adolescents with Inflammatory Bowel Disease

OBJECTIVE To identify family-reported, adherence-related barriers for adolescents with inflammatory bowel disease (IBD) and examine their relationship to 6-MP/azathioprine and 5-ASA medication adherence. METHODS Participants included 74 adolescents, aged 13-17 years, diagnosed with IBD and their caregivers. Adolescents and caregivers jointly completed a measure of barriers to medication adherence. Adherence to medication was measured by family-report, pill-count, and serum assay. RESULTS Families endorsed one to seven total barriers to medication adherence. The most commonly reported barriers included forgetting, being away from home, and interference with an activity. Neither demographic nor disease severity variables were related to the total number of reported barriers. Fewer total reported barriers was related to better adherence by adolescent and maternal report. CONCLUSION Most families experience at least one barrier to treatment adherence. Effective problem-solving around these barriers and its integration into future treatment protocols may help improve medication adherence in the pediatric IBD population.

PedsQL eosinophilic esophagitis module: feasibility, reliability, and validity.

Objective: Eosinophilic esophagitis (EoE) is a chronic esophageal inflammatory condition with a paucity of information on health-related quality of life (HRQOL). The objective of the study was to report on the measurement properties of the PedsQL EoE Module. Methods: The PedsQL EoE Module was completed in a multisite study by 196 pediatric patients with EoE and 262 parents of patients with EoE. Results: The PedsQL EoE Module scales evidenced excellent feasibility (0.6%–3.1% missing), excellent group comparison reliability across total scale scores (patient &agr; 0.93; parent proxy &agr; 0.94), good reliability for the 7 individual scales (patient &agr; 0.75–0.87; parent proxy &agr; 0.81–0.92), excellent test–retest reliability (patient intraclass correlation coefficient 0.88; parent intraclass correlation coefficient 0.82), demonstrated no floor effects and low ceiling effects, and demonstrated a high percentage of scaling success for most scales. Intercorrelations with the PedsQL Generic Core Scales were in the medium (0.30) to large (0.50) range. PedsQL EoE Module scores were worse among patients with active histologic disease (≥5 eos/hpf) compared with those in remission (patient self-report: 63.3 vs 69.9 [P < 0.05]; parent proxy report: 65.1 vs 72.3 [P < 0.01]), and those treated with dietary restrictions compared with those with no restrictions (patient self-report: 61.6 vs 74.3 [P < 0.01]; parent proxy report: 65.5 vs 74.7 [P < 0.01]). Conclusions: The results demonstrate excellent measurement properties of the PedsQL EoE Module. Patients with active histologic disease and those treated with dietary restrictions demonstrated worse PedsQL scores. The PedsQL EoE Module may be used in the evaluation of pediatric EoE disease-specific HRQOL in clinical research and practice.