Effective Self-Management Interventions for Patients With Lupus: Potential Impact of Peer Mentoring

Abstract

Systemic lupus erythematosus (SLE) is associated with significant mortality, morbidity and cost for the individual patient and society. In the United States, African Americans (AAs) have 3-4 times greater prevalence of lupus, risk of developing lupus at an earlier age and lupus-related disease activity, organ damage and mortality compared with whites. Evidence-based self-management interventions that incorporate both social support and health education have reduced pain, improved function and delayed disability among patients with lupus. However, AAs and women are still disproportionately affected by lupus. This article presents the argument that peer mentoring may be an especially effective intervention approach for AA women with SLE. SLE peers with a track record of success in lupus management and have a personal perspective that clinicians often lack. This commonality and credibility can establish trust, increase communication and, in turn, decrease disparities in healthcare outcomes.

Introduction

Systemic lupus erythematosus (SLE or lupus) is a significant global public health problem. The prevalence of lupus ranges from approximately 40 cases per 100,000 persons among Northern Europeans to more than 200 per 100,000 persons among blacks.1, 2, 3 In the United States, the number of patients with lupus exceeds 250,000. Although the life expectancy of lupus patients has improved from an approximate 4-year survival rate of 50% in the 1950s to a 15-year survival rate exceeding 80% today, a patient diagnosed with lupus at 20 years of age still has a 1 in 6 chance of death by 35 years of age.⁴ In the United States, the highest lupus morbidity and mortality rates are among African American (AA) women.5, 6, 7 SLE affects approximately 1 in 250 AA women of childbearing age, and AAs overall have 3-4 times greater prevalence of lupus, risk of developing lupus at an earlier age and lupus-related disease activity, organ damage and mortality compared with whites.1, 2, 3, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19 Annual costs associated with SLE are estimated to be $10,000-50,000 more than those for patients without SLE, with severe flares and more major organ involvement incurring the highest costs.20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30, 31, 32, 33, 34, 35, 36, 37, 38, 39, 40 Major cost drivers include areas where AAs with lupus are disproportionately represented, such as inpatient hospitalizations,36, 41, 42 long disease duration, high disease activity and organ damage, poor physical and mental health and low education and employment levels.

SLE is a chronic autoimmune disease with periodic flare-ups of severe symptoms affecting any organ system and resulting in potentially life-threatening complications.43, 44, 45 Patients often experience a high degree of psychological symptoms (45-65% of patients), including anxiety, psychiatric and mood disorders, with depression appearing most frequently.46, 47, 48, 49, 50, 51, 52, 53, 54 All domains of the health-related quality of life in patients with SLE are significantly worse and decline at an earlier age when compared to females in the general U.S. population and patients with other common chronic diseases such as hypertension, diabetes and myocardial infarction.51, 52, 55, 56, 57, 58, 59, 60, 61, 62, 63, 64, 65, 66, 67, 68, 69, 70, 71

Studies have shown that the disproportionate burden of lupus among AAs negatively affects quality of life72, 73, 74, 75, 76 and coping ability.⁷⁷ Some have positioned elevated rates of SLE in AA women in the context of “immune cognition”. This suggests that the disease, for these women, is a physical manifestation of patterns of stress, discrimination and social disadvantage.58, 74, 75, 78, 79, 80, 81, 82, 83, 84, 85, 86, 87, 88, 89, 90, 91, 92 In addition to managing disease-specific stressors, it has been suggested that AAs are exposed to a unique set of risk factors that lead to a pattern of cumulative disadvantage over time.78, 79 High rates of unemployment, poverty, violent crime, incarceration and homicide among AA adults reflect this accumulation of disadvantage at multiple transition points during their development and across the life course.80, 81, 82, 83, 84, 85, 86, 87, 88, 89, 90, 91, 92

Programs are needed to address the barriers AA women face in effectively managing their disease because of the implications of poor disease control in this population. Several studies have evaluated barriers to patient adherence. Most relate to understanding the medical regimen, trust in the provider and communication with providers. Much of this hinges on patient subjective norms, cultural, social support networks, mental health and education.⁹³ For instance, depression is an independent predictor of medication adherence and use of emergency room visits in patients with SLE.⁶⁸ Many patients lack the education, social support, self-efficacy and trust necessary for effective medication and appointment adherence.⁹⁴ Many of the differences in outcomes parsed by self-described race may not be genetic in origin and, therefore, may be modifiable. Thus, it is critical to address the modifiable risk factors in patients with SLE to reduce health disparities in this high-risk group. Peer mentoring interventions are effective in other chronic conditions that disproportionately affect minorities, such as diabetes, human immunodeficiency virus and kidney disease, but there is currently no empirically tested peer mentoring intervention developed for patients with SLE. This review focuses on peer mentoring interventions for AA women with SLE as an approach to improving measures of disease condition.

Although SLE has no known cure, successful treatment depends upon addressing both symptoms and the underlying inflammation. Treatment of SLE includes a variety of medications, including nonsteroidal anti-inflammatory medications, corticosteroids, antimalarials, cytotoxic agents, B-cell targeting biologics and immunosuppressive drugs.95, 96, 97 However, lifestyle modifications, such as avoiding overexposure to sunlight, stress management, smoking cessation and a diet low in saturated and trans fats, are also very important.95, 96

A large body of evidence has suggested that therapeutic interventions should be proposed to reduce psychological distress to improve quality of life and possibly moderate the evolution of chronic and unpredictable diseases like SLE.⁹⁸ Cognitive behavioral stress management techniques have resulted in short-term improvement in pain, psychological function and perceived physical function in SLE.⁸⁸ Additionally, psychoeducation⁹⁹ and graded aerobic exercise¹⁰⁰ have been shown to be useful in the management of fatigue. Programs designed to reduce stress levels of chronically ill patients have also included support therapy, lifestyle interventions incorporating elements of yoga or other similar disciplines and minisessions on depression, adaptive coping strategies and body image.88, 89, 90

Disease self-management has also demonstrated significant impact on disease and general wellness.11, 101, 102, 103, 104, 105, 106, 107, 108, 109, 110, 111, 112, 113, 114 Evidence-based self-management interventions designed to enhance social support and provide health education, among patients with lupus, have reduced pain, improved function and delayed disability.11, 101, 103, 104, 105, 106, 107, 108, 109, 110, 111, 112, 113, 114, 115 Although there is no generally accepted self-management program available for SLE,⁵⁸ 2 programs that have been shown to be successful in improving conditions in patients with arthritis are the Arthritis Self-Management Program and the generic Chronic Disease Self-Management Program. Each program incorporates 6 weeks of peer-led sessions ranging in disease-specific and more general self-help content. Arthritis self-management education delivered by small-group, home study, computer and Internet modalities have demonstrated significant improvements in health distress, self-reported global health and activity limitation, with trends toward improvement in self-efficacy and mental stress management.92, 112, 117, 118, 119, 120, 121, 122, 123, 124, 125, 126, 127, 128, 129, 130, 131, 132, 133, 134, 135, 136, 137, 138 AAs and women are still disproportionately affected by lupus.1, 2, 68, 72, 73, 74, 75, 76, 77, 139, 140 Persistent disparities may be due to the nonresponsiveness of existing programs to the unique needs of AAs and women with lupus.3, 116, 141, 142, 143, 144, 145, 146, 147, 148, 149

As illustrated in the Figure, evidence suggests that many patients with SLE have treatment and disease management needs that are not addressed by current care methods. In a study of patients with SLE, Danoff-Burg and Friedberg⁵⁸ found that AA patients were more likely than white patients to have higher levels of unmet needs related to health services and information. These domains included issues such as (1) receiving adequate information from medical staff about treatment side effects, (2) having access to telephone support and advisory services and (3) having assistance with knowing which symptoms should trigger a doctor visit.⁵⁸ Their findings have been supported by other studies that have documented similar patient concerns around unmet information and support needs.150, 151, 152, 153, 154, 155, 156, 157, 158

Overall, AA patients with lupus face multiple illness-related problems, and evidence suggests that some of these problems can be ameliorated with cognitive behavioral interventions without adverse effect. Several studies have emphasized the need to design interventions that address barriers to participation and curtail noncompliance,159, 160, 161, 162 particularly for AA patients. Practicing physicians continue to struggle with patient compliance, poor adherence to therapeutic regimens and failure of patients to keep scheduled appointments. For example, Gladman et al (2000) found that physicians rated African Americans as less globally adherent than whites (43.5% versus 66.3% adherent, respectively).¹⁶³ Compliance is also a persistent problem in standardized arthritis self-management education programs. One study reported that less than 50% of a closed eligible population participated, even when Internet and small-group programs were offered repeatedly over many years.¹⁶⁴ This suggests that interventions may not be reaching the largest portion of patients with lupus, and many vulnerable populations have not been included in study samples.122, 124, 127, 132, 165, 166, 167, 168

This combination of persistent unmet needs in AA women with SLE and evidence of the effectiveness of programming in reducing risk suggests that the ideal interventional approach for this unique population will reinforce self-management skills in a format that is socially and culturally consistent. For patients with SLE, the perception of not having their experience understood by others may lead to social isolation and otherwise negatively affect personal and professional interactions.3, 141, 142 Peers who have experience in managing their lupus may be in a better position to share knowledge and experience with which others may often not be able to relate. This can establish trust and, in turn, decrease disparities in healthcare outcomes. Table 1 summarizes the major benefits of peer mentoring presented and specific unmet needs of AA women with SLE that this model could potentially address.

The need for such a program is further reinforced by a qualitative study of predominantly AA women with SLE from medically underserved communities, in which 69% favored a peer support intervention to improve care.¹⁴⁹ This information indicates that a peer mentoring program for AA women with SLE is generally favored by the population affected and could lead to notable increases in positive health outcomes.