Sandra Cortina

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.

Usefulness of Cellular Text Messaging for Improving Adherence Among Adolescents and Young Adults with Systemic Lupus Erythematosus

Objective. In a cohort of 70 patients with childhood-onset systemic lupus erythematosus (cSLE): to determine the baseline adherence to medications and visits; to investigate the effects of cellular text messaging reminders (CTMR) on adherence to clinic visits; and to study the influence of CTMR on adherence to use of hydroxychloroquine (HCQ). Methods. CTMR were sent to 70 patients prior to clinic visits for 14 months. A subgroup of patients were evaluated for medication adherence to HCQ: 19 patients receiving CTMR prior to each scheduled HCQ dose were compared to 22 patients randomized to standard of care education about HCQ. Visit adherence was measured using administrative databases. Pharmacy refill information, self-report of adherence, and HCQ blood levels were utilized to monitor medication adherence to HCQ. Sufficient adherence to visits or HCQ was defined as estimates > 80%. Disease activity was primarily monitored with the Systemic Lupus Erythematosus Disease Activity Index. Results. At baseline, 32% of patients were sufficiently adherent to HCQ, and 81% to clinic visits. Visit adherence improved significantly by > 80% among those who were nonadherent to clinic visits at the baseline CTMR (p = 0.01). CTMR did not influence adherence to HCQ over time. Conclusion. Patients with cSLE were only modestly adherent to HCQ and clinic visits. CTMR may be effective for improving visit adherence among adolescents and young adults with cSLE, but it does not improve adherence to HCQ.

Schoolteachers' Experiences With Childhood Chronic Illness

The objective of this study was to examine the degree to which educators face problems associated with chronic illness in their pupils, the extent to which they feel responsible for addressing such problems, and the amount of training to deal with these problems. One hundred schools randomly selected from 10 counties in a midwest state stratified on substance abuse deaths, mental health costs, and socioeconomic status (percentage of free lunches) were approached, and 17 agreed to participate. Of the 1,184 eligible educators, 480 provided complete surveys (response rate = 40%). Nearly every respondent (98.7%) reported knowing a student in the school with a chronic illness, and 43% felt moderately to very responsible for dealing with issues of chronic illness, yet 59% reported no academic training and 64% reported no on-the-job training for dealing with issues of chronic illness. Schoolteachers are ill-prepared to deal with issues of chronic illness in the schools. Practice implications are discussed.

Sociodemographic and psychosocial factors associated with continuous subcutaneous insulin infusion in adolescents with type 1 diabetes.

Cortina S, Repaske DR, Hood KK. Sociodemographic and psychosocial factors associated with continuous subcutaneous insulin infusion in adolescents with type 1 diabetes.

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.

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. We used EM data to assess and track medication adherence. The therapist reviewed these data with the patient and family in session and used MI techniques to promote health behavior change. We analyzed changes in adherence rates over time using a time series analysis (Auto-Regressive Moving Average [ARIMA]). In addition, the patient and her mother reported on depression, anxiety, and quality of life at intake and after 12 months, and the therapist treated psychological symptoms with CBT. RESULTS The average adherence rate during the baseline EM phase was ~53%. The mean adherence rate across treatment was ~77%, and after 17 months, the final weekly adherence rate was 82%. Adherence rates significantly improved over the treatment period, ARIMA t = 36.16, p < .01. CONCLUSIONS EM feedback and MI are viable additions to CBT to promote medication adherence in adolescence. This approach has the potential to effectively treat adolescents with adherence problems and psychological symptoms across multiple chronic illness diagnoses, and ultimately to improve health and quality of life outcomes.

Psychological Functioning of Children and Adolescents With Eosinophil-Associated Gastrointestinal Disorders

This study examined health-related quality of life (HRQOL) and adjustment among children with eosinophil-associated gastrointestinal disorders (EGID) compared with an age-matched sample without acute or chronic illness. Participants were youths aged 2 to 18 years. Children and caregivers completed measures of psychological symptoms and HRQOL. Significant group differences were found for child report of depressive, as well as anxiety, symptoms. Significant group differences were also found for caregiver report of psychological symptoms and social skills. Finally, based on parent and youth report, HRQOL and greater school absenteeism were associated with EGID diagnosis.

Clinical Effectiveness of Comprehensive Psychological Intervention for Nonadherence to Medical Treatment: A Case Series

OBJECTIVE To evaluate the effectiveness of an adherence promotion intervention provided to patients and families referred to a clinical service. METHODS 6 patients and their caregivers representing 5 different chronic conditions were seen for comprehensive psychological intervention that was evaluated based on electronic monitoring of adherence to prescribed oral medication. RESULTS Time series analysis (Auto-Regressive Integrated Moving Average) indicated that for each of the 6 cases, treatment adherence increased during the intervention phase relative to nonintervention periods, but for 5 of these 6 patients, adherence decreased during the follow-up period (p < .05). CONCLUSION Comprehensive adherence promotion strategies delivered in standard clinical practice were effective, but the effects did not persist after treatment. Future adherence promotion interventions should focus on sustaining intervention effects.

Adapting Pediatric Psychology Interventions: Lessons Learned in Treating Families From the Middle East

OBJECTIVE Pediatric psychologists are increasingly called upon to treat children from non-Western countries, whose cultures may contrast with a Western medical setting. Research on cultural adaptations of evidence-based treatments (EBTs), particularly for individuals from the Middle East, is sparse. To address this need, we discuss clinical issues encountered when working with patients from the Middle East. METHODS Synthesis of the literature regarding culturally adapted EBTs and common themes in Middle Eastern culture. Case vignettes illustrate possible EBT adaptations. RESULTS Integrating cultural values in treatment is an opportunity to join with patients and families to optimize care. Expectations for medical and psychological treatment vary, and collaborations with cultural liaisons are beneficial. CONCLUSIONS Critical next steps include systematic development, testing, and training in culturally adapting EBTs in pediatric medical settings. Increased dialogue between clinicians, researchers, and cultural liaisons is needed to share knowledge and experiences to enhance patient care.

Genetic Biomarkers of Health-Related Quality of Life in Pediatric Asthma

OBJECTIVES To determine the relationship between single nucleotide polymorphisms in candidate genes associated with multiple asthma phenotypes and health-related quality of life (HRQOL). STUDY DESIGN A cross-sectional study was conducted at a pediatric hospital in 275 school-aged children diagnosed with asthma and their caregivers. Genomic DNA was obtained from children, and caregivers completed a measure of their childs HRQOL. Analysis of variance was used to investigate the association between single nucleotide polymorphisms and HRQOL. RESULTS Children homozygous for the major variant at IL-4RA rs 1805010 had significantly better HRQOL than their counterparts. Significant associations with pulmonary function were not observed. CONCLUSIONS Genes associated with asthma phenotype can be associated with HRQOL at least partly independent of pulmonary function.