Shanna M. Guilfoyle

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.

Blood glucose monitoring and glycemic control in adolescents with type 1 diabetes: meter downloads versus self-report

Guilfoyle SM, Crimmins NA, Hood KK. Blood glucose monitoring and glycemic control in adolescents with type 1 diabetes: meter downloads versus self‐report.

Perceived Barriers to Clinic Appointments for Adolescents with Sickle Cell Disease

Purpose The purpose of this study was to examine perceived barriers to clinic attendance and strategies to overcome these barriers for adolescents with sickle cell disease. Materials and Methods This was a 2-phased study, which used focus groups (n=13) and individual semistructured interviews (n=32) with adolescent patients (aged 13 to 21 y) from 3 pediatric sickle cell clinics in the Midwest. Results Adolescents identified competing activities, health status, patient-provider relationships, adverse clinic experiences, and forgetting as barriers to clinic attendance. Calendars/reminders and parent reminders were the most commonly reported strategies to facilitate clinic attendance. Adolescents also reported the need for flexible scheduling and improved patient-provider communication. Discussion Adolescents with sickle cell disease and their families may benefit from ongoing education about the importance of attending routine clinic visits. Adherence to clinic appointments for adolescents may be enhanced by developing interventions to decrease forgetting (eg, phone call reminders or text messaging) and increase patient satisfaction with clinic visits. Scheduling appointments to accommodate busy schedules/scheduling conflicts (eg, late clinic hours), providing teen-friendly clinic environments, and using technology may also facilitate attendance.

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 childrens hospital in the Midwestern United States. PARTICIPANTS One hundred forty-five dyads composed of an adolescent (aged 13-18 years) with type 1 diabetes mellitus and a parent. MAIN EXPOSURES Adolescent- and parent-rated diabetes-specific family conflict and mean daily BGM frequency obtained through meter downloads. MAIN OUTCOME MEASURE Levels of HbA(1c), abstracted from the medical record. RESULTS In separate general linear models, higher adolescent-rated family conflict scores at baseline predicted less frequent BGM at 6 months (β = -0.08 [P = .01]) and higher HbA(1c) levels at 12 months (β = 0.08 [P = .02]). In the multivariate model including baseline conflict and BGM as predictors of HbA(1c) levels, BGM was a significant predictor (β = -0.24 [P = .007]) and conflict was no longer significant (β = 0.05 [P = .11]), supporting the mediation hypothesis. Post hoc probing showed that BGM explained 24% of the variance in the conflict-HbA(1c) link. The mediation between parent-reported conflict and HbA(1c) levels via BGM adherence was partially supported (conflict predicting HbA(1c) in the zero-order equation, β = -0.24 [P = .004]; multivariate equation, β = 0.06 [P = .02]), and BGM frequency explained 16% of the conflict-HbA(1c) link. CONCLUSIONS Diabetes-specific family conflict in adolescence predicts deteriorations in BGM and subsequent glycemic control for at least 1 year. Results support ongoing intervention research designed to reduce family conflict and thus prevent a trajectory of declining adherence and glycemic control across adolescence.

Preliminary Feasibility, Acceptability, and Efficacy of an Innovative Adherence Intervention for Children With Newly Diagnosed Epilepsy

OBJECTIVE To report acceptability, feasibility, and preliminary efficacy from a randomized controlled trial of a family-tailored adherence intervention (AI) targeting nonadherence to antiepileptic drugs in pediatric new-onset epilepsy. METHOD 30 children with new-onset epilepsy (7.2 ± 3.1 years old, 47% male) and their caregivers participated. At baseline, participants were given adherence electronic monitors. After a 1-month run-in period, participants with good adherence (≥90%) were monitored. Participants with adherence <90% were randomized to the AI or Treatment-As-Usual (TAU) group. The AI group received four adherence promotion intervention sessions over >2 months. Follow-up adherence data were collected. RESULTS 8 families were randomized (AI, n = 4; TAU, n = 4). Families perceived AI to be feasible and acceptable. Preliminary results demonstrated that the AI group had improved adherence from baseline to post-test. CONCLUSIONS A family-tailored AI appears promising and needs to be tested with a larger pediatric epilepsy sample.

Barriers to Treatment Adherence for Pediatric Patients With Sickle Cell Disease and Their Families

This study systematically identified adherence barriers and strategies in 31 adolescents with sickle cell disease (SCD) and 71 caregivers. Qualitative data indicated that forgetting was the primary barrier and caregiver reminders were the primary strategies identified by both caregivers and adolescents. However, adolescents reported significantly more barriers for pain management (p < .01) than their caregivers. Caregivers and adolescents seem to experience similar as well as a few unique barriers and strategies across multiple components of the SCD treatment regimen. Multidisciplinary treatment teams have the opportunity to facilitate dialogue with patients and their families about adherence barriers and strategies.

Parenting stress impacts obesity-specific health-related quality of life in a pediatric obesity treatment-seeking sample.

Objective: To document parenting stress in caregivers of treatment-seeking youth with obesity and examine whether parenting stress is a predictor of pediatric health indicators, including body mass index and weight or obesity-specific health-related quality of life. Method: Youth (5–18 years) and their caregivers presenting to a pediatric medical weight management program initial visit completed several self-report questionnaires assessing demographics, parenting stress, and weight or obesity-specific health-related quality of life. Youths height and weight were measured by trained clinic nurses and abstracted from the patient medical records. Study staff measured caregivers height and weight. Results: Participants included 120 caregivers and their youth (Mage = 11.0, 65.8% female, and 50% African-American). At treatment initiation, caregivers were primarily obese (Mbody mass index = 35.8). One fifth of caregivers of school-aged children (18%) had clinically increased levels of parenting stress, and 25% reported increased spousal discord specific to parenting. Parenting stress did not significantly predict youth body mass index. Parenting stress significantly predicted obesity-specific parent-proxy health-related quality of life for school-aged children but not self-reported obesity-specific health-related quality of life. Conclusion: Given that caregivers are critical components of pediatric weight management interventions, those with clinically increased levels of parenting stress would likely benefit from brief problem-solving interventions and anticipatory guidance to address common obstacles when fostering healthier lifestyles for their youth.

Development and reliability of a correction factor for parent-reported adherence to pediatric antiepileptic drug therapy.

Purpose:  Study aims were (1) to document and examine associations between parent‐report and electronic monitoring (EM) of pediatric antiepileptic drug (AED) adherence, (2) to determine the sensitivity and specificity of parent‐reported adherence, and (3) to develop a correction factor for parent‐reported adherence.

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; &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.

Applying Quality Improvement Methods to Implement a Measurement System for Chronic Pain-Related Disability

OBJECTIVE This article describes the application of quality improvement methodology to implement a measurement tool for the assessment of functional status in pediatric patients with chronic pain referred for behavioral intervention. METHODS The Functional Disability Inventory (FDI), a validated instrument for assessment of pain-related disability, was chosen as the primary clinical outcome measure. Using improvement science methodology, PDSA (Plan-Do-Study-Act) cycles were run to evaluate: (a) regular FDI administration, (b) two administration methods, (c) regular patient feedback, and (d) documentation methods. RESULTS Within 1 month, psychologists were administering the FDI at least 80% of the time to patients. A high level of reliability using two administration methods (92.8%) was demonstrated. The FDI was feasible to integrate into clinical practice. Modifications to electronic records further enhanced clinician reliability of documentation. CONCLUSIONS Quality improvement methods are an innovative way to make process changes in pediatric psychology settings to dependably gather and document evidence-based patient outcomes.