Marisa E. Hilliard

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.

Self-report measures of medication adherence behavior: recommendations on optimal use

Medication adherence plays an important role in optimizing the outcomes of many treatment and preventive regimens in chronic illness. Self-report is the most common method for assessing adherence behavior in research and clinical care, but there are questions about its validity and precision. The NIH Adherence Network assembled a panel of adherence research experts working across various chronic illnesses to review self-report medication adherence measures and research on their validity. Self-report medication adherence measures vary substantially in their question phrasing, recall periods, and response items. Self-reports tend to overestimate adherence behavior compared with other assessment methods and generally have high specificity but low sensitivity. Most evidence indicates that self-report adherence measures show moderate correspondence to other adherence measures and can significantly predict clinical outcomes. The quality of self-report adherence measures may be enhanced through efforts to use validated scales, assess the proper construct, improve estimation, facilitate recall, reduce social desirability bias, and employ technologic delivery. Self-report medication adherence measures can provide actionable information despite their limitations. They are preferred when speed, efficiency, and low-cost measures are required, as is often the case in clinical care.

Diabetes Resilience: A Model of Risk and Protection in Type 1 Diabetes

Declining diabetes management and control are common as children progress through adolescence, yet many youths with diabetes do remarkably well. Risk factors for poor diabetes outcomes are well-researched, but fewer data describe processes that lead to positive outcomes such as engaging in effective diabetes self-management, experiencing high quality of life, and achieving in-range glycemic control. Resilience theory posits that protective processes buffer the impact of risk factors on an individual’s development and functioning. We review recent conceptualizations of resilience theory in the context of type 1 diabetes management and control and present a theoretical model of pediatric diabetes resilience. Applications to clinical care and research include the development of preventive interventions to build or strengthen protective skills and processes related to diabetes and its management. The ultimate goal is to equip youths with diabetes and their families with the tools to promote both behavioral and health-related resilience in diabetes.

Perspectives From Before and After the Pediatric to Adult Care Transition: A Mixed-Methods Study in Type 1 Diabetes

OBJECTIVE Among the many milestones of adolescence and young adulthood, transferring from pediatric to adult care is a significant transition for those with type 1 diabetes. The aim of this study was to understand the concerns, expectations, preferences, and experiences of pretransition adolescents and parents and posttransition young adults. RESEARCH DESIGN AND METHODS Participants completed questionnaires and responded to open-ended qualitative questions regarding self-management, self-efficacy, and their expectations and experiences with pediatric and adult care providers across the transition process. RESULTS At a mean age of 16.1 years, most pretransition adolescents had not yet discussed transferring care with their parents or doctors. Although many posttransition young adults reported positive, supportive interactions, several described challenges locating or establishing a relationship with an adult diabetes care provider. Qualitative themes emerged related to the anticipated timing of transfer, early preparation for transition, the desire for developmentally appropriate interactions with providers, the maintenance of family and social support, and strategies for coordinating care between pediatric and adult care providers. CONCLUSIONS Standardizing transition preparation programs in pediatric care and introducing transition-oriented clinics for late adolescents and young adults prior to adult care may help address patients’ preferences and common transfer-related challenges.

User Preferences and Design Recommendations for an mHealth App to Promote Cystic Fibrosis Self-Management

Background mHealth apps hold potential to provide automated, tailored support for treatment adherence among individuals with chronic medical conditions. Yet relatively little empirical research has guided app development and end users are infrequently involved in designing the app features or functions that would best suit their needs. Self-management apps may be particularly useful for people with chronic conditions like cystic fibrosis (CF) that have complex, demanding regimens. Objective The aim of this mixed-methods study was to involve individuals with CF in guiding the development of engaging, effective, user-friendly adherence promotion apps that meet their preferences and self-management needs. Methods Adults with CF (n=16, aged 21-48 years, 50% male) provided quantitative data via a secure Web survey and qualitative data via semi-structured telephone interviews regarding previous experiences using apps in general and for health, and preferred and unwanted features of potential future apps to support CF self-management. Results Participants were smartphone users who reported sending or receiving text messages (93%, 14/15) or emails (80%, 12/15) on their smartphone or device every day, and 87% (13/15) said it would be somewhat or very hard to give up their smartphone. Approximately one-half (53%, 8/15) reported having health apps, all diet/weight-related, yet many reported that existing nutrition apps were not well-suited for CF management. Participants wanted apps to support CF self-management with characteristics such as having multiple rather than single functions (eg, simple alarms), being specific to CF, and minimizing user burden. Common themes for desired CF app features were having information at one’s fingertips, automation of disease management activities such as pharmacy refills, integration with smartphones’ technological capabilities, enhancing communication with health care team, and facilitating socialization within the CF community. Opinions were mixed regarding gamification and earning rewards or prizes. Participants emphasized the need for customization options to meet individual preferences and disease management goals. Conclusions Unique capabilities of emerging smartphone technologies (eg, social networking integration, movement and location detection, integrated sensors, or electronic monitors) make many of these requests possible. Involving end users in all stages of mHealth app development and collaborating with technology experts and the health care system may result in apps that maintain engagement, improve integration and automation, and ultimately impact self-management and health outcomes.

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.

Validation of the Cough Quality-of-Life Questionnaire in patients with idiopathic pulmonary fibrosis.

BACKGROUND Cough is a pervasive and disabling symptom of idiopathic pulmonary fibrosis (IPF) and is an independent predictor of disease progression. The Cough Quality-of-Life Questionnaire (CQLQ) is a validated measure of cough-specific quality of life that could be used as an outcome measure in therapeutic trials for IPF. This study aimed to assess the reliability and validity of the CQLQ in individuals with IPF. METHODS The CQLQ was administered as an outcome within a previously published 27-week, placebo-controlled, crossover trial of thalidomide for cough in IPF. Participants were adults with IPF and chronic cough. A cough visual analog scale (VAS) and the St. Georges Respiratory Questionnaire (SGRQ) were administered to establish concurrent validity of the CQLQ. RESULTS Internal consistency was high (Cronbach α > .70) for the CQLQ total and four of six subscale scores. The CQLQ total score demonstrated concurrent validity through significant correlations with scores on the cough VAS and SGRQ total and subscale scores (r range, 0.63-0.81; P < .05). The intraclass correlation coefficient for the CQLQ completed at baseline and after a therapeutic washout period at week 15 was 0.87, indicating very good test-retest reliability. CONCLUSIONS This study supports the use of the CQLQ as a valid and reliable instrument in IPF and should be used to assess cough-specific quality of life in therapeutic trials.

The emerging diabetes online community.

Abstract: Background Diabetes self-management is complex and demanding, and isolation and burnout are common experiences. The Internet provides opportunities for people with diabetes to connect with one another to address these challenges. The aims of this paper are to introduce readers to the platforms on which Diabetes Online Community (DOC) participants interact, to discuss reasons for and risks associated with diabetes-related online activity, and to review research related to the potential impact of DOC participation on diabetes outcomes. Methods Research and online content related to diabetes online activity is reviewed, and DOC writing excerpts are used to illustrate key themes. Guidelines for meaningful participation in DOC activities for people with diabetes, families, health care providers, and industry are provided. Results Common themes around DOC participation include peer support, advocacy, self-expression, seeking and sharing diabetes information, improving approaches to diabetes data management, and humor. Potential risks include access to misinformation and threats to individuals’ privacy, though there are limited data on negative outcomes resulting from such activities. Likewise, few data are available regarding the impact of DOC involvement on glycemic outcomes, but initial research suggests a positive impact on emotional experiences, attitudes toward diabetes, and engagement in diabetes management behaviors. Conclusion The range of DOC participants, activities, and platforms is growing rapidly. The Internet provides opportunities to strengthen communication and support among individuals with diabetes, their families, health care providers, the health care industry, policy makers, and the general public. Research is needed to investigate the impact of DOC participation on self-management, quality of life, and glycemic control, and to design and evaluate strategies to maximize its positive impact.

Stress and A1c Among People with Diabetes Across the Lifespan.

Stress is known to negatively affect health and is a potentially serious barrier to diabetes-related health outcomes. This paper synthesizes what is known about stress and glycemic control among people with type 1 and type 2 diabetes across the lifespan. Chronic stress—especially in relation to living with diabetes—was most strongly associated with A1c, particularly among subgroups that face disproportionate stress, such as minority groups or adolescents/young adults. Mechanisms of the stress-A1c association include physiological, psychological, behavioral, and environmental links. Understanding the dimensions of stress as they relate to health in diabetes can be of significant clinical importance, and interventions targeting mechanisms that either exacerbate or buffer stress have reported modest improvements in A1c.

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.