Collaborative Management of Chronic Illness

Chronic conditions, defined as illnesses that last longer than 3 months and are not self-limiting, affect almost half of the U.S. population. Persons with chronic illnesses account for three quarters of health care costs in the United States [1]. Experimental studies have shown a gap between the health care services intended to improve outcomes in chronic illness and the care that patients usually receive. This disparity calls for reassessment of the current organization of health care so that chronically ill patients are more likely to receive services that help them live as well as they can for as long as they can. Patients and their families are the primary caregivers in chronic illness [2-4]. Self-care [2, 3, 5, 6] refers to 1) engaging in activities that promote health, build physiologic reserve, and prevent adverse sequelae; 2) interacting with health care providers and adhering to recommended treatment protocols; 3) monitoring physical and emotional status and making appropriate management decisions on the basis of the results of self-monitoring; and 4) managing the effects of illness on the patient's ability to function in important roles and on emotions, self-esteem, and relationships with others. Self-care and medical care are sometimes viewed as competing rather than complementary strategies. When self-care implies limited access to health care, it may carry negative connotations for patients and health care providers. At the same time, medical care for chronic illness is rarely effective in the absence of adequate self-care. Self-care and medical care are both enhanced by effective collaboration among chronically ill patients and their families and health care providers. Collaborative management occurs when patients and care providers have shared goals, a sustained working relationship, mutual understanding of roles and responsibilities, and requisite skills for carrying out their roles. We identified essential elements of collaborative management of chronic illness in light of behavioral principles and empirical evidence about enhancement of self-care. Although families and lay caregivers play a critical role in managing chronic illness, we focused on the role of health care systems in improving care. We then discuss critical next steps to improve care of chronic illness in organized health care systems. Collaborative Management Behavioral Principles Interventions that improve outcomes of chronic illness have been developed on the basis of social learning and self-regulation theories [7-14]. Key principles of these theories include the ideas that 1) illness management skills are learned and behavior is self-directed; 2) motivation and self-confidence [or self-efficacy] in management of illness are important determinants of patients' performance of self-care; 3) the social environment of the family, workplace, and health care system can support or impede self-care [15-17]; and 4) monitoring and responding to changes in disease state, symptoms, emotions, and functioning improves adaptation to illness. For many chronic conditions, interventions developed on the basis of these principles have been shown to improve medical, emotional, and functional outcomes [7, 18-40], particularly when providers and patients work together toward shared goals. For example, Vinicor and colleagues [41] compared three diabetes interventions to usual care: a patient intervention that emphasized goal-setting and contracting, a physician intervention that emphasized problem-oriented protocols, and an intervention that incorporated patient and physician approaches. Relative to usual care, both patient and physician interventions improved fasting blood glucose, glycosylated hemoglobin, body weight, and blood pressure at 26 months; the greatest benefit occurred when patient and physician interventions were combined. Health care providers can use behavioral techniques to improve self-care in chronic illness. Such techniques as setting goals; checking the patient's readiness for self-care; breaking self-care tasks into small, manageable steps; getting personalized feedback; self-monitoring; enlisting social support; and checking patient commitment to key tasks are helpful [42-46]. These techniques may be used singly or in combination: Montgomery and coworkers [47], for example, gave patients with Parkinson disease a computer-generated, individualized self-care program that used many of these behavioral strategies. The program was delivered by mail along with educational materials. Relative to controls, patients who received the intervention had reduced side effects of medication, decreased disease severity, increased levels of exercise and activity, and increased self-confidence in disease management at 6 months of follow-up. In addition to improved disease outcomes, many studies [7, 10, 22, 24, 39, 48, 49] have found that behavioral interventions improve psychosocial outcomes. Even low-intensity behavioral interventions can be effective in changing key health behaviors, such as smoking, medication use, and diet [44, 50, 51]. For example, Litzelman and associates [52] gave diabetic patients brief education on foot care, developed a self-care contract with patients, and gave monthly reminders by telephone and postcard. Providers were given flow sheets on foot care, and reminder stickers were attached to the medical record. Relative to usual care, patients in the intervention group received foot examinations more often and had fewer serious lesions at 1 year of follow-up. These types of behavioral strategies are more likely to be effective when planned in light of patient readiness for self-care and when the level of support is matched to patient needs [53, 54]. Essential Elements On the basis of the behavioral principles underlying self-care and the results of experimental studies that evaluate self-care interventions, we identified four elements of health care that can enhance collaborative management. Collaborative Definition of Problems Collaborative management begins when patients and care providers define problems clearly [11, 55-57]. Providers usually define problems in terms of diagnosis, poor compliance with treatment, or continuation of unhealthy behaviors (such as smoking or a sedentary lifestyle). Patients are more likely to define problems in terms of pain, symptoms, interference with functioning, emotional distress, difficulty carrying out treatments or lifestyle changes, or fears about unpredictable health consequences of illness. Patients are more likely to benefit when these two perspective are harmonized. Even small steps, such as asking a patient to identify the biggest problems faced in managing illness, may provide a basis for improved collaboration. Greenfield and colleagues [27] had an assistant prepare patients with diabetes for a clinic visit by identifying medical decisions that were likely to arise, relevant lifestyle issues, and patient preferences. Negotiation skills and obstacles were discussed and rehearsed. Relative to controls, prepared patients more effectively elicited information and had better functional and physiologic outcomes at 12 weeks. Targeting, Goal Setting, and Planning Focusing on a specific problem, establishing realistic objectives, and developing an action plan for attaining those objectives are beneficial steps in managing chronic illness [3, 12, 54]. Targeting is critical because patients and providers often initiate many changes at once, which can lead to poor adherence and discouragement. There is growing consensus that targeting should be done on the basis of both the importance of the problem and patient motivation and readiness for self-care [53, 58]. Once patients and physicians define a problem and agree that it is important, they can establish a behavioral goal and an action plan for achieving it that allows patients and providers to monitor progress. Action planning consists of identifying a menu of options for achieving a goal, choosing one option, developing specific implementation plans, foreseeing obstacles, and making a commitment to put the plan into effect [3, 6]. Case management and group interventions are effective methods for setting goals and implementing an action plan [7, 10, 59, 60]. Interactive, computer-based methods are being developed to serve these purposes [61-64], but practical experience is limited and adequate testing is needed. Creating a Continuum of Self-Management Training and Support Services Patients' abilities to care for themselves are enhanced by services that teach skills needed to carry out medical regimens, guide health behavior change, and provide emotional support. Because needs differ, a variety of services should be available, ranging from minimal, self-help approaches to more intensive case management [54, 65]. Many effective ways of teaching skills and providing support exist, including individual and group instruction [3, 6, 23, 66], high-quality educational materials with personalized feedback [47, 54], and interactive instruction given by computer [61-63]. Structured programs that target a health behavior relevant to many patients with chronic illness can also be effective. For example, boosting physical activity produces positive effects on patients' physical and psychological health in many chronic conditions [67, 68]. Exercise classes, walking groups, and graded exercise programs are effective formats for increasing physical activity [69-75]. It is important that these kinds of services be individualized, tailored to each patient's motivation and readiness [58], and aligned with priorities agreed upon by patient and provider. Glasgow [54] advocated stepped-care approaches in which all patients receive low-intensity interventions and only higher-risk patients receive more expensive and intensive interventions. Such individualized approaches are compatible with interventions that mix patients with different chronic conditions