Chronic disease self-management

A chronic disease is defined as any persistent limitation of health that requires medical management and from which an individual isn't expected to spontaneously recover. Common chronic diseases include, but aren't limited to, diabetes, hypertension, heart failure, chronic obstructive pulmonary disease, asthma, depression, and anxiety. Control of symptoms may be dependent on medication use, healthy lifestyle choices, avoidance of triggers, use of adaptive devices, or some combination of these. Although there's no cure, patients may learn to live well with a chronic disease by making healthy choices each day. Like learning to drive, learning self-management skills empowers patients and provides autonomy.1 How can you help your patient assume their active role in the driver's seat? LEARNING TO DRIVE Most new drivers have spent years as a passenger before they're ready to drive. As passengers, they've observed the principles of safe driving but may not have completely considered the reason behind wearing seat belts, stopping at stop signs, and following the posted speed limit. Similarly, a patient with a chronic disease may have lived with the condition for a long time or may have a parent or other family member who has the disease. They may have assumed a passive role; for example, taking a medication as prescribed without fully understanding how it helps. As these patients learn to take a more active role in disease self-management, they need support and guidance. Driving instructors know that each new student comes with a unique set of past experiences. With all students, they start with the basics, and nurses must do the same thing. The first step is to determine what your patient already knows, what they need to know, and how they best learn. Have your patient describe their disease, its symptoms, and actions they're already taking to control it. Ask open-ended questions that encourage your patient to tell their story. Help the patient make a connection between their behavior and its impact on their health. Consider how long it has been since your patient was diagnosed and the severity and expected course of the disease. Determine their level of comfort with assuming more responsibility for the regular management of their chronic disease. Get an idea of your patient's learning style and health literacy level. Be prepared to provide extra support, keeping social determinants of health in mind. Compliment your patient for what they're already doing well and focus on how their actions can influence their health. Actively listen and encourage family involvement if your patient is comfortable with it. Allow your patient to help prioritize topics to address. Many patients live with more than one chronic disease and can be overwhelmed by the complexity of managing multiple conditions. By addressing your patient's concerns first, you can reinforce the message that they're heard and in control.2 Focus on what your patient is doing right and fill in any gaps in their knowledge about their disease and its treatment. Based on the disease, ensure that any major safety concerns are included in the initial education session. For instance, a patient with anxiety must be able to recognize signs and symptoms of a panic attack and should have a plan for managing suicidal ideation. Once any immediate concerns are addressed, you can provide a more complete review of what managing the chronic disease entails. Just as a new driver needs to understand the basics of how to maneuver a car, control its speed, and stop before starting to drive, introduce your patient to the basics of their care plan before they assume control. The importance of individualizing the educational experience can't be overemphasized. Helping your patient make realistic goals involving small changes in health behavior will be rewarded with results that will encourage them to continue.3 THE FIRST MILES New drivers begin by exploring the vehicle they'll be driving, inside and out. Patients should be guided through an overview of their disease, including a clear understanding of how the body should work and what's going wrong, how the disease usually progresses, and how treatments will help improve their condition. Explain the natural disease progression without treatment, and contrast this with the expected progression with optimal therapy. Acknowledge that lifestyle choices and changes are difficult, but they can make a huge impact on how well your patient lives with the disease. Equip your patient with as much information as possible regarding how their actions can control symptoms and slow disease progression. Provide resources for your patient to access as their disease progresses or as they become more comfortable with its management (see Patient self-management resources). Just as drivers need a map to guide them to their desired location, patients need guidance to determine where they are and where they would like to go as they navigate managing a chronic disease. Shared decision-making allows you to work together with your patient to draw a realistic map, acknowledge expected barriers, and plan a way around them. Encourage your patient to view all the possible routes and choose the right roads to health. Understand that different patients have different priorities and may choose different ways to reach their desired destination. Together, you can develop an action plan that serves as a map to health.4 Even small behavior changes can have a positive impact on overall health when applied consistently over time (see Forming an action plan). WARNING SIGNS New and experienced drivers alike need to understand warning signs. Travelers to unfamiliar territory may encounter hazards they haven't seen before. You can help your patient by providing them with a list of warning signs and how to respond to these signs. For example, a specific warning sign for a patient with anxiety is intrusive thoughts that interfere with normal activity. Your patient can use a symptom log to keep track of potential warning signs and a daily review of self-management interventions can keep them on track. Some signs, such as stop signs, are used in virtually all driving environments whereas others, such as a moose crossing sign, are less common. Your patient should be able to recognize both common signs and those that are specific to their chronic disease. Knowing what the signs mean and how to respond to them can prevent serious consequences. Some traffic laws are universal and must always be followed, such as staying on your own side of the road while driving. Speed limits may be compared with dietary rules for a particular condition; some drivers choose to obey them more closely than others, and not following the speed limit may have unwelcome consequences. For most drivers and patients, close adherence to the rules prevents problems and reduces stress. MAINTENANCE Keeping a car on the road and in good condition requires regular maintenance, as does keeping a body healthy. Good drivers learn to regularly refuel their vehicle, and patients learn to fuel their bodies with healthy foods and exercise. Oil changes and lab tests may not be required every day but should be completed as recommended. Licensing and inspection may be compared with an annual physical exam, when a thorough review will ensure that everything is in order and any problems are addressed before causing harm. Knowing how to manage bumps in the road or emergencies is important for both drivers and patients with chronic diseases. Having a plan in place for unexpected problems can prevent the problem from becoming a crisis. Use of tools such as an individualized action plan will help your patient respond when they experience an exacerbation. True emergencies, both on the road and in personal health, require activating the emergency response system by calling 911. Help your patient understand how to get the help they need. Become familiar with resources in your area that help patients with chronic disease self-management. Don't forget about national programs or smartphone apps that your patient can access. Recognize that the need for support groups or resources may change over time. By offering resources repeatedly, your patient and their family are reminded that they can opt in at any time. Families who've successfully navigated the healthcare system may be willing to share their experiences with others. Take the time to review any symptom logs or healthcare apps your patient is using to manage their chronic disease. This provides an opportunity to see firsthand how helpful specific apps are and is an excellent way to reinforce health messages. Give your patient the chance to share how their efforts at self-management have worked and answer any questions regarding problems they're having. Acknowledge your patient's progress and independence as they become more autonomous with chronic disease self-management. KEYS IN HAND In today's healthcare environment, patients are expected to play an active role in their own care. For the millions who live with a chronic disease, effective self-management is especially useful and can improve both quality of life and health outcomes. Nurses are uniquely situated to provide support for patients as they learn to manage symptoms and make decisions that impact their health. On the web Patient self-management resourcesFigureCDC: www.cdc.gov/learnmorefeelbetter/programs/general.htm US Department of Health and Human Services: https://health.gov/news/healthgov-blog/201801/action-planning-breaking-down-health-goals-manageable-steps Forming an action plan Although every patient is different, using a systematic approach to planning can help. For this example, let's consider a patient with anxiety. Help your patient identify cues that indicate they're stressed. Do they have tight shoulders, experience butterflies in the stomach, feel jittery, fidget, or have bothersome thoughts? Be sure to individualize for your patient. Identify and name specific triggers that tend to lead to anxiety. These may include loud noises, exams, or an unfamiliar environment. Again, these are specific for each patient. Together, create a list of calming activities that your patient enjoys. This may include activities such as listening to music, deep breathing, muscle tightening/relaxing, taking a warm bath, talking with a friend, or drawing. Have your patient identify specific steps they can take. Decide together what calming strategies should be used first or in specific situations. Decide together how to proceed for a true emergency, such as suicidal ideation or anxiety that worsens instead of improving when calming strategies are used. Put the action plan in writing and encourage your patient to share it with close friends or family members. Review the action plan with your patient on subsequent visits to see how well it's working and make changes as needed.