Patients’ perceived barriers to active self-management of chronic conditions

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Abstract

Few studies have elicited barriers to patient self-management of chronic conditions, and only one concerned people with two or more conditions. To inform development of Homing in on Health (HioH), a home delivery variant of the Chronic Disease Self-Management Program (CDSMP), we conducted 10 focus groups involving 54 chronically ill people, 46 (85%) of whom had multiple conditions. The goals were to elicit perceived barriers to active self-management and to accessing self-management support resources. Depression, weight problems, difficulty exercising, fatigue, poor physician communication, low family support, pain, and financial problems were the most frequently noted barriers to active self-management. The most common barriers to accessing self-management support resources were lack of awareness, physical symptoms, transportation problems, and cost/lack of insurance coverage. Our findings provided initial support for the Homing in on Health approach, since many of the barriers identified may be more amenable to home-based intervention than to centralized, facility-based programs.

Introduction

Chronic conditions affect nearly half of all individuals in the United States (U.S.) [1]. The tremendous burden of chronic conditions can be expressed in disability-adjusted life years (DALY), the sum of years of life lost due to premature mortality and physical disability [2]. In 1996, a few prevalent chronic illnesses, including diabetes mellitus (DM), chronic obstructive pulmonary disease (COPD), arthritis, depression, and congestive heart failure (CHF), accounted for more than 60% of the 34.5 million DALY due to all medical disorders in the U.S. [2]. Despite this burden, troubling gaps exist in the quality of care for chronic conditions in the U.S. [3], [4], which has led to global change models for achieving higher quality care [3], [5].

A common aim of these models is to increase patients’ involvement in care by teaching them to develop and articulate their personal care goals, thereby fostering greater adherence to complex self-care regimens. Better adherence to a self-care regimen, a characteristic of active patient self-management [6], can reduce mortality and disability, improve quality of life, and reduce health care costs [7], [8], [9]. By contrast, poor adherence, a hallmark of passive self-management, results in sub-optimal chronic disease outcomes and unnecessary health care utilization [8], [10]. The universal self-management tasks of individuals with any chronic illness, and the characteristic ways they are handled by active and passive self-managers, are summarized in Table 1 [11].

Active self-management has intrinsic therapeutic value; higher adherence is associated with improved outcomes even when the treatments themselves are ultimately found to be ineffective [7], [8], [9]. In other words, the process of visualizing a personal health-related goal, developing a self-care regimen to make an incremental step toward that goal, and sticking with and revising the regimen as needed over time appears as important as the specifics of the goal and regimen. Thus, developing programs to promote active self-management and determining the mechanisms by which they influence outcomes should become a high priority.

One particularly promising putative mediator of self-management programs is self-efficacy [12], or the expectancies patients have about their ability to successfully execute actions required to achieve valued outcomes [13]. Higher levels of self-efficacy are associated with more optimal self-care behaviors [14], [15], [16], [17], [18], and interventions can strengthen patient self-efficacy and result in positive changes in health behaviors [19] and improved health outcomes [20], [21], [22], [23], [24], [25], [27]. An individual's self-efficacy derives from four sources: previous performance accomplishments, vicarious experiences (e.g. seeing others succeed), verbal persuasion, and mood [28]. Interventions to bolster self-efficacy typically target each of these sources. Probably the most well known such intervention is the Chronic Disease Self-Management Program (CDSMP), developed and refined over the past 30 years by Halsted Holman, Kate Lorig, and colleagues at Stanford University [29]. The CDSMP has been shown to improve self-efficacy, self-management behaviors, and health status while reducing hospitalizations and emergency visits [21], [22], [30]. The program is grounded in self-efficacy theory and includes activities that touch on each of the four sources of influence on self-efficacy described previously. It is a group intervention, conducted in community centers and employing volunteer peer leaders who either have, or have extensive life experience with a chronic illness. Sessions center on group problem solving to overcome difficulties with mastering universal self-management tasks, plus participant-driven personal action plans for making incremental steps toward long-term self-management goals. The CDSMP was designed to be generic and is thus applicable to any chronic condition.

Despite its clear success, two key questions concerning the CDSMP remain. First, does self-efficacy actually mediate the effect of the program on outcomes? A better understanding of the mechanisms of the program's effect might allow for refinements to increase its potency [31]. Second, would the CDSMP be effective in improving outcomes if the group process elements were removed? Individuals with severe functional impairments and/or unreliable transportation may not be able to participate in the current program. Although an Internet variant exists [32], this approach excludes the large number of people who lack consistent Internet access [33]. Such barriers to participation especially effect people in lower socioeconomic strata, who experience disparities in health care [34] including reduced access to self-management resources [35], [36].

Our group is currently conducting research to address these two key unanswered questions about the CDSMP. In collaboration with the Stanford group, we have developed a home delivery adaptation of the CDSMP - “Homing in on Health (HioH)” and will evaluate its impact on self-management self-efficacy and behaviors and chronic illness outcomes in a RCT. The home delivery approach was adopted in an effort to broaden the reach of the CDSMP and overcome the potential access barriers noted previously. In addition, our study was designed to determine whether self-efficacy is the key mediator of the intervention effect as assumed.

To help inform our home delivery modification of the CDSMP, we conducted a series of focus groups comprised of people with one or more chronic illnesses. The main goals were: (1) to elicit perceived barriers to active self-management; and (2) to elicit perceived barriers to accessing self-management support services and resources. Surprisingly few studies have elicited the barriers patients face in self-managing chronic conditions [37], [38], [39], [40], [41], [42], [43], [44], [45], [46], [47], [48], [49], and only one [50] has focused on individuals with two or more conditions. This is a particularly important research gap since most people with a chronic condition have one or more coexisting conditions [51]. Because we anticipate that most individuals in our RCT population will have multiple chronic conditions, we conducted our pre-RCT focus groups to ensure we had as thorough an understanding as possible of their self-management concerns. In this paper, we discuss our findings in the context of the scant prior literature in this area and consider their implications for the development of home chronic illness self-management support interventions.

Section snippets

Recruitment and enrollment

From October through December 2003, we conducted 10 focus groups involving a total of 54 participants (mean group size = 5.4). The characteristics and chronic conditions of the participants are summarized in Table 2. Forty-six participants (85%) had two or more chronic conditions. Each focus group lasted approximately 1 h. A convenience sample of participants was recruited from the 12 offices in the University of California Davis (UCD) Primary Care Network (PCN), which span a 50-mile radius

Depression

Depression kept many isolated and unable to socialize, cope, and “get on with life.” Very few participants had sought professional help to deal with depression. One said getting help for depression was a “cultural taboo,” while a couple others said relatives did not approve of such help. Some participants, particularly those with pain, felt their depression resulted from having other chronic conditions, while others noted it had existed well before they developed other conditions. In a small

Discussion

Our findings have important implications for the design of interventions to enhance active patient self-management of chronic conditions and also led to the generation of two new exploratory hypotheses we will test in our upcoming RCT.

Conclusion

Our qualitative study is one of the few to provide insights regarding the barriers faced by people living with multiple chronic conditions. The findings support and will continue to guide the development of home delivered interventions aimed at promoting active patient self-management of chronic conditions, a critical element of evolving models for improving the process and outcomes of chronic illness care [3], [5]. Finally, our findings also suggested hypotheses regarding the possible

Acknowledgements

This work was funded in part by Agency for Healthcare Research and Quality grant number 1R01HS013603-01. The authors wish to acknowledge the contributions of the following individuals:

Robert DeSaeger and Samantha Earnshaw, HCRI, for their outstanding contributions to the coding of qualitative study data.

Kate Lorig, RN, DrPH, Diana Laurent, MPH, and Katy Matthews, MPH, Stanford University Patient Education Research Center, for their helpful suggestions during the creation of the focus group

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