Adherence and Self-Management in Pediatric Populations

Avani C. Modi, Kimberly A. Driscoll

• Publisher: Academic Press
• Year: 2020
• ISBN:
  9780128160015
• Topic: Psychology
• Subtopic: Applied Psychology
• Index: Psychology

Adherence and Self-Management in Pediatric Populations addresses the contemporary theories, evidence-based assessments, and intervention approaches for common pediatric chronic illnesses. An introductory chapter summarizes the state of the field and provides a general foundation in adherence and self-management. Subsequent chapters focus on specific diseases, ensuring that the scope of knowledge contained therein is current and thorough, especially as the assessments and interventions can be specific to each disease. Case examples are included within each chapter to illustrate the application of these approaches. The book ends with an emerging areas chapter to illuminate the future of adherence science and clinical work.

This book will be extremely helpful to professionals beginning to treat youth with suboptimal adherence or for those who conduct adherence research. Experts in the field will benefit from the synthesized literature to aid in clinical decision-making and advancing adherence science.

• Organized by disease for quick reference
• Provides case examples to illustrate concepts
• Incorporates technology-focused measurement and intervention approaches (mobile and electronic health) throughout

Chapter 1

Introduction

Kimberly A. Driscoll ¹ , and Avani C. Modi ^{2 , 3 1} Department of Clinical & Health Psychology, College of Public Health and Health Professions, University of Florida, Gainesville, FL, United States ² Division of Behavioral Medicine and Clinical Psychology, Center for Adherence and Self-Management, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States ³ Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, United States

Abstract

Adherence to medical treatment regimens has been a topic of research and clinical interest in the field of pediatric psychology since its inception. With advances in adherence and self-management research and clinical practice, the ultimate goal is to continue to improve the physical health and psychosocial outcomes of youth with chronic conditions and their families. The state of the field of pediatric adherence and self-management is described in this book with individual chapters focusing on specific chronic conditions. The introduction chapter serves as a primer to subsequent chapters to understand the field of pediatric adherence science, including the terminology and taxonomy of adherence, general measurement approaches, application of theories, and examination of adherence interventions.

Keywords

Adherence; Pediatric; Self-management research; Treatment nonadherence; Quality of life

Adherence to medical treatment regimens has been a topic of research and clinical interest in the field of pediatric psychology since its inception. Virtually all children with chronic conditions are asked to engage in treatment or self-management tasks. These treatment tasks include taking oral medications, performing various therapies (e.g., nebulizer, physical and occupation therapy, airway clearance), following dietary and physical activity recommendations (e.g., increased fluid intake, healthy food choices, increased physical activity), and avoidance of triggers of disease symptoms (e.g., avoid asthma or seizure triggers, avoidance of particular foods). Adhering to these treatment regimens on a daily basis is difficult for adults, much less children who simply want to do what their peers and siblings are doing. Thus, it is not surprising that adherence rates average 50% and that these rates have not changed in several decades (Rapoff, 2010). Unfortunately, the consequences of nonadherence are often dire for youth with chronic conditions. Treatment nonadherence leads to greater morbidity and mortality, resulting in higher healthcare utilization and healthcare charges and costs (Hommel et al., 2017). For example, youth with leukemia with suboptimal adherence are 2.5 times more likely to relapse than those with optimal adherence (Bhatia et al., 2012). Similarly, youth with epilepsy are 3.24 times more likely to have seizures when they are nonadherent versus adherent (Modi, Rausch, & Glauser, 2014; Modi, Wu, Rausch, Peugh, & Glauser, 2014 ). In addition to these deleterious physical health outcomes, treatment nonadherence results in greater family distress and lower quality of life, which may lead to unnecessary changes in the treatment regimen (e.g., dose escalation or discontinuation of medication) in clinical practice (Goodhand et al., 2013; Modi, Wu, Guilfoyle, & Glauser, 2012). These data highlight the tremendous impact of nonadherence across individual, family, and healthcare system factors.

The pediatric psychology field continues to grow, as evidenced by a cursory search on PubMed of the search terms “treatment adherence” and “pediatric,” with 119 publications in 1998, 322 publications in 2008, and 957 in 2018. With advances in adherence and self-management research and clinical practice, the ultimate goal is to continue to improve the physical health and psychosocial outcomes of youth with chronic conditions and their families. The state of the field of pediatric adherence and self-management is described in this book with individual chapters focusing on specific chronic conditions. The introduction chapter serves as a primer to subsequent chapters to understand the field of pediatric adherence science, including the terminology and taxonomy of adherence, general measurement approaches, application of theories, and examination of adherence interventions.

Adherence definitions and terminology

As mentioned in the preface of this book, we do not intend to debate whether terminology is appropriate or not; we retained the use of the word adherence as it is currently commonly accepted. It is well recognized that no matter the topic or field, terminology frequently goes through a metamorphosis—in that decades ago, a word was appropriate given the culture and context of that time, but as time passes and new education, insight, and reflection are gained, a word or words become inappropriate. Such was the case with compliance, which was introduced in the 1970s by Sackett (Sackett & Snow, 1979), but fell out of favor in the 1990s because compliance was interpreted as the need for an individual (previously a patient as the term patient is currently falling out of favor) to obey their medical provider's treatment recommendations, which was perceived as paternalistic (Vrijens et al., 2012). Although adherence has been the preferred term for more than two decades, health providers still use the term compliance in conversations and the term continues to be used in many recently published studies. The European Society for Patient Adherence, COMpliance, and Persistence published the ABC taxonomy for medication adherence in 2012 (Vrijens et al., 2012), which divides adherence behaviors into four distinct but interrelated phases: initiation (the start of the first dose of a prescribed medicine), implementation (e.g., how an individual's actual dosing of a medication matches what is prescribed), discontinuation (e.g., the point at which the last dose is taken and no subsequent doses are taken), and persistence (e.g., length between initiation and the last dose taken). Use of these terms is rarely seen in pediatric adherence studies, but use of systematic nomenclature could benefit the operationalization and consistency of reporting adherence and self-management research. Importantly, it is unclear how individuals with chronic conditions and their families truly perceive these terms and whether the actual words of “compliance,” “adherence,” or “persistence” truly matter to them. As the chapters in this book highlight, behaviors related to medical treatment are challenging—regardless of which terms or words are used.

Individuals in the field of diabetes recently contested the use of the word adherence, and other words, proposing another shift in how we think about how we communicate about and with individuals with diabetes and even individuals with other chronic conditions. Dickinson and colleagues note that, “For decades, a substantial amount of the language around diabetes has been focused on negative outcomes and laden with judgment and blame, and it has not adequately considered individual needs, beliefs, and choices” (Dickinson et al., 2017). The authors make an excellent point—ask any psychologist who is about to see or has seen a child or adolescent with type 1 diabetes about the judgment they feel about their A1C result (i.e., a numerical representation of the individual's average blood glucose in the previous 2–3 months). Clinical observations suggest that many youth are nervous before appointments or upset and deflated afterward because of the way they were made to feel about “the numbers” that define their health, in this case A1C benchmarks made by the American Diabetes Association. Relatedly, many providers, caregivers, and youth are relieved and overjoyed when the A1C goal is attained. Indeed, that A1C number or other levels or numbers (e.g., FEV1% predicted, renal or liver lab values) place a burden and weight on the shoulders of many individuals with chronic conditions. Similarly, providers are also evaluated based on how the children and adolescents they care for are doing—or at least the clinics in which they work (e.g., U.S. News and World Report rankings).

While it remains unclear what terminology is optimal for use when engaging in conversations about medical treatments, Dickinson and colleagues made the following recommendations about how to communicate about and with individuals with chronic illness (Dickinson et al., 2017). Use language that is (1) neutral, nonjudgmental, and based on facts, actions, or physiology/biology; (2) free from stigma; (3) strengths based, respectful, inclusive, and imparts hope; (4) collaborative between individuals and providers; and (5) person centered. Not only is choice of word(s) important, but tone and expressions of empathy and compassion are equally, if not, more important. Moreover, the majority of adherence research and clinical work focuses on individuals with chronic illness and their families and often neglects important provider level factors, including patient-provider communication and provider adherence to medical guidelines. More research is needed in these areas as adherence and self-management really is a partnership between individuals with chronic illness and their medical teams.

Methods for assessing adherence and self-management behaviors

There are many subjective and objective methods for assessing adherence and self-management behaviors. Despite the wealth of data available from objective methods, as evidenced in many chapters of this book, self-report remains the most common adherence and self-management assessment method regardless of whether the setting is research or clinical (Plevinsky et al., in press; Quittner, Modi, Lemanek, Ievers-Landis, & Rapoff, 2008). However, objective methods are almost exclusively used in research settings and are only recently used in clinical settings (Herzer, Ramey, Rohan, & Cortina, 2011; Hilliard, Ramey, Rohan, Drotar, & Cortina, 2011).

Subjective methods

Patient-reported outcomes

A...

Table of contents

• Cover image
• Title page
• Table of Contents
• Copyright
• Contributors
• Preface
• Acknowledgments
• Chapter 1. Introduction
• Chapter 2. Pediatric asthma
• Chapter 3. Pediatric type 1 diabetes
• Chapter 4. Childhood obesity
• Chapter 5. Cystic fibrosis
• Chapter 6. Chronic pain
• Chapter 7. Pediatric oncology
• Chapter 8. Pediatric sickle cell disease
• Chapter 9. Pediatric epilepsy
• Chapter 10. Spina bifida
• Chapter 11. Inflammatory bowel disease and gastrointestinal disorders
• Chapter 12. HIV/AIDS
• Chapter 13. Solid organ transplant
• Chapter 14. Rheumatic diseases
• Chapter 15. Dermatological disorders
• Chapter 16. Pediatric sleep
• Chapter 17. Emerging areas
• Index