Because the path to lupus diagnosis differs so much among patients, the types of physicians initially involved in the care of SLE also vary. Family physicians, pediatricians, and general internists are often the first physicians involved when patients come to the attention of the medical care system, but eventually specialists are typically involved. Rheumatologists are essential for the basic assessment of the status of SLE, the development of a care plan, and taking care of musculoskeletal manifestations. Depending on symptoms, dermatologists, nephrologists, cardiologists, neurologists, psychiatrists, obstetricians or others also may become key care providers.
The range of organ systems involved in SLE requires a “captain of the ship” to lead the team of medical professionals. This role is usually performed by primary care physicians for most medical problems. However, because of the relative rarity of SLE the primary care model may not work very well. This is because primary care physicians may not get much experience in providing lupus care and because of the inherent complexity of managing the range of organ systems involved. Lupus can be further complicated by the twists and turns in disease activity and cumulative damage associated with organ systems.
A recent study showed that in basic indicators of the quality of SLE care, the specialty of the main SLE physician mattered in the quality of care received by the patient.8
Lupus can serve as the disease upon which to consider and model coordination of complex care.
As you consider the team-based approach required to effectively care for patients with lupus, consider the following:
- How, if at all, does the coordination model change when resources are plentiful?
- When providers are not in close proximity to one another or the patient?
- When communication challenges exist?
- When they do not appear to exist?
8Yazdany J, Trupin LS, Tonner C, Schmajuk G, Gillis JZ, Panopalis P, Julian LJ, Criswell LA, Katz PP, Yelin EH. Quality of care in patients with systemic lupus erythematosus. Presented at the 74th annual meeting of the American College of Rheumatology; Atlanta, GA; 11/06-11/10. Arthritis & Rheumatism. 2010; 62(10-supp): S884, #2113; Yelin EH, Yazdany J, Trupin LS, Tonner C. Schmajuk G, Katz PP, Criswell LA, Julian LJ, Gillis JZ, Panopalis P. The effect of health insurance and physician speciality on quality of care for SLE. Presented at the 74th annual meeting of the American College of Rheumatology; Atlanta, GA; 11/06-11/10. Arthritis & Rheumatism. 2010; 62(10-supp): S330, #789.
Patient as part of the team. The empowered patient and patient-centered care.
These days, patients, including lupus patients, have wide-ranging access to information about disease and treatment. While the quality of internet and media coverage of developments in science and medicine varies, it appears that patients who are informed and participate actively in their care may accrue less organ damage than those who do not.9 A main reason for this may be that informed patients participate in the design of their treatment plans, and perhaps, as a result, better adhere to those plans. Indeed, at least one study suggests that the apparent relationship between ethnicity and lupus-related renal disease may be mediated through differences in adherence.10
Likewise, studies have found associations between patient-centered communication (where physicians ascertain and incorporate patients’ expectations, feelings, and illness beliefs) and improved psychological status of SLE patients.11 Trust in physicians can be improved by using a patient-centered approach, being sensitive to patient concerns, and providing adequate clinical information.12 Patients appear to be more willing to disclose concerns when physicians use a patient-centered communication style.13 Moreover, in patients with SLE, it is possible that trust in physicians is significantly associated with patients’ ethnicity and their perceptions about specific components of physicians’ communication style.14 On the other hand, information about whether patient-centered care impacts ultimate outcomes is mixed.15
Doctors and patients are becoming aware that the successful management of chronic diseases, like lupus, involves a partnership based on a mutual understanding of specific treatment goals, which is the best way to minimize morbidity and improve clinical outcomes.<sup>16</sup>
Lupus can serve as the springboard for discussion about the extent to which it is appropriate to limit or encourage patient participation in the design of treatment plans, the best practices for doing so and how to measure the success of a patient/provider partnership.
9Chambers S, Rahman A, Isenberg D. Treatment adherence and clinical outcome in systemic lupus erythematosus. Rheumatology. 2007;46(6):895-8
11Maisiak R, Austin JS, West SG, Heck L. The effect of person-centered counseling on the psychological status of persons with systemic lupus erythematosus or rheumatoid arthritis: a randomized, controlled trial. Arthritis Care Res. 1996;9(1):60–6.
12Berrios-revera J, Street R, Popa-lissenanu M. Trust in physicians and elements of the medical interaction in patients with rheumatoid arthritis and systemic lupus erythematosus. Arthritis Care Res. 2006;55(3):385-93
15>Swenson S, Buell S, Zettler P, White M, Ruston D, Lo B. Patient-centered Communication Do Patients Really Prefer It? Journal of General Internal Medicine. 2004;19(11): 1069-79
16Chambers S, Rahman A, Isenberg D, Treatment adherence and clinical outcome in systemic lupus erythematosus. Rheumatology. 2007;46(6): 895-8