Fostering Self-Management and Patient Activation

and Justin Vandergrift²

(1)

Chapel Hill, North Carolina, USA

(2)

Charlotte, North Carolina, USA

Keywords

Self-managementAdherencePatient activationCo-production

Introduction

As chronic medical conditions, such as inflammatory bowel disease (IBD), predominate as a reason for seeking medical care, both patients and their healthcare providers have increasingly recognized the importance of their forging a long-term partnership in which both take actions to achieve clinical goals. In this model, the provider provides guidance, advice, and feedback, while the patient engages in behaviors aimed at achieving and maintaining health – and there is a degree of shared responsibility for outcomes. The patient side of this bargain is often described as self-management.

Below, we outline what self-management is, highlight evidence that self-management can improve clinical outcomes, and provide guidance on how healthcare providers can cultivate strong self-management of children living with IBD – all from the perspective of parents of young patients with Crohn disease.

Defining Self-Management

Although often equated with adherence to medication and clinic visits, self-management entails a number of complex, evolving, and lifelong activities, of which adherence is but one part. Therefore, successful self-management of chronic disease is not pegged to any one action but is characterized by the cultivation of a number of behaviors and strategies that lead to a better quality of life and increased likelihood for improved disease-related outcomes.

A concise and useful conceptualization of self-management includes tasks that need to be undertaken and the set of skills that are required to help achieve them (Fig. 57.1) [1]. Clinicians can help patients identify unfulfilled tasks and work to help develop the skills that may be lacking.

Fig. 57.1

Tasks (outer circle) and skills (inner circle) that support disease self-management [1, 2]

Self-Management Tasks

The model calls for three major tasks: medical management, role management, and emotional management. Medical management addresses some of the most obvious elements of taking care of one’s self including adhering to medication or a specific diet or nutritional intervention. Role management involves the patient making minor or major lifestyle and activity adjustments in response to disease – for example, having specific accommodations at school or avoiding certain sports for those with colostomies. In emotional management, the many fears, anxieties, and frustrations that accompany a chronic illness are acknowledged and addressed as part of handling life with the disease.

For each task there are obvious leverage points that clinicians can use to make the patient aware of the problem and work together to arrive at a solution. Importantly, though, efforts to successfully develop these self-management tasks will require cognizance of a patient’s perceptions and priorities. For example, in the case of a child living with IBD for whom avoiding abdominal cramps is a primary focus, the medical, role, and emotional management has to be conducted largely within the stated context of reducing pain and discomfort – even if the clinician’s priority is ensuring control of inflammation and promoting proper growth. Therefore, clinician recommendations regarding the need to take daily oral medication (medical), eliminating trigger foods (role), and referral to a clinical psychologist (emotional) are, in the case above, all couched as being part of the plan to keep the pain away.

Self-Management Skills

These key tasks can be achieved through developing a set of six skills that Loring and Holman recently added and which provide a greater sense of the work involved in self-management [2]. These skills include problem-solving, decision-making, resource utilization, patient-provider partnership, action planning, and self-tailoring. As described below, each skill can call on innate resources of the patient and family and/or be fostered and supported through intervention.

Problem-solving is a core self-management skill. Obstacles to well-being and quality of life are inevitable, and being able to tackle them is critical to managing chronic illness. To do this, patients need to be capable of defining the problem, developing potential solutions, implementing these solutions, and evaluating the results. Advice and support from family, providers, and community may be necessary. For example, an 11-year-old with indeterminate colitis dreads going to the clinic to get his anti-TNF infusion. He finds it boring, and “not fun,” and he hates feeling sedated by the premedication. His parents discuss the problem with the physician, and she considers infusion without premedication. His parents suggest that they download favorite TV shows for him to watch during the infusion and then go out to his favorite pizza shop afterward.

Decision-making can follow problem-solving and is enhanced by education and training. When a 15-year-old with Crohn disease receiving weekly methotrexate injections developed a fever of 101 degrees Fahrenheit on the day of his shot, based on instructions they had received at the clinic, he and his parents decide to hold the injection and contact the on-call clinician the next day.

Resource utilization is becoming an increasingly important element of disease management. Paradoxically, as more information becomes available and accessible to patients regarding their condition, particularly online, there is less clarity as to which sources provide the most relevant and valuable advice. In pediatric IBD, the Crohn’s and Colitis Foundation of America (CCFA) website (www.ccfa.org) is a trove of reliable information in written and video format. ImproveCareNow (ICN), a large network of pediatric IBD programs dedicated to quality improvement, supports blogs and patient/parent discussion forums (www.improvecarenow.org). The North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) also has a site for families to learn more about digestive diseases including IBD (www.gikids.org). Teaching patients and families to access these and other reliable resources has become integral to successful self-management.

Patient-provider partnering can be considered the keystone skill for managing a chronic disease – one on which all other self-management skills rely – but is also the most complex. The doctor-patient relationship model has traditionally been “vertical,” with the healthcare provider issuing orders that the patient was expected to dutifully follow. While this model may be more applicable to the management of acute medical problems (e.g., appendicitis), it is ill-suited for longer-term care. In recent years, patients have advocated for a more “horizontal” or level relationship with their healthcare providers – clinics and hospitals, vying for healthcare dollars, have obliged. Strong partnerships between children with IBD, their families, and the clinician lead to greater trust, adherence, and engagement.

Action planning can be thought of as a next step to problem-solving and decision-making and entails skills for making a behavior change and sticking with it. A college freshman at an out-of-state school has been using nightly tube feeds to help keep her Crohn disease in remission since she was 12 years old. Now living in a single-room dorm, she often feels like not “dropping the tube,” especially on weekends, and is missing feeds. During her clinic visit, she is able to discuss the problem with the clinician and nutritionist, and together they develop an action plan to take weekends off from the tube and use oral supplements these days instead. The patient feels she can do this and implements the plan.

Self-tailoring calls for a practical approach to using the self-management skills. Not every self-management skill is needed at all times, and there must be some adaptation of response to fit the current demand. However, this tailoring is conducted by the patient/family. Therefore, the high school senior learning how to reorder his own medications from a specialty pharmacy calls on problem-solving and action-planning skills to keep his refills from running out.

Self-Management for Kids

Together these skills and the core tasks are intended to provide a path toward minimizing the deleterious effects of a chronic illness while maximizing opportunities to maintain well-being and quality of life. It should be recognized that this self-management framework was developed following work with adult patients. For children, particularly those who are younger, much of the self-management heavy lifting is done by parents. The “self” in self-management, therefore, is not “myself” but is “my child living with IBD” and perhaps “my other family members affected by my child’s illness.” This is an important distinction and the literature speaks even less to this self-management-by-proxy model than it does to traditional self-management.

That said, the principles of self-management can be applied to and adopted by the parent of a child living with IBD. Naturally, over time, there is a shift from parent management to self-management by the patient. This transition process can be smooth, or not, as discussed in Chap. 60 and below.

For the healthcare provider, supporting and motivating health-promoting behaviors for a parent or caregiver is going to look different than it will for a child.

Does Self-Management Really Matter?

Intuitively, good self-management could be expected to produce better health outcomes. While this is a reasonable assumption, medicine is replete with examples where good sense did not translate into good results. An evidence-based approach to the incorporation of self-management into medical care in general has been challenged by its complexity and a lack of uniformity in its definition. Most of the work in this area has focused on medication adherence, which via self-report, pill count, and pharmacy refill can be more readily estimated and quantified.

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