Patients with systemic lupus erythematosus (SLE) need better appraisal and more informational and social support, according to a new study on health-related quality of life in these patients.1
The phenomenological study, comprising qualitative interviews with patients in the Lupus Clinic at the Washington University School of Medicine, St. Louis, Mo., also found a need for interventions to enhance sources of social support by integrating community organizations, physicians and patients’ friends and family.
“There are a vast amount of data that demonstrate a link between quality of life and outcomes in SLE,” says rheumatologist Al Kim, MD, PhD, co-director of the Lupus Clinic at the Washington University School of Medicine. “Social support directly feeds into quality of life, [so] restoration of lost support will likely contribute to improved SLE outcomes.”
The study got its start when Washington University medical anthropology undergraduate Jerik Leung began shadowing Dr. Kim at the Lupus Clinic as part of his interest in becoming a physician. “The more I listened to patients’ interactions with Dr. Kim,” Mr. Leung says, “the more I realized patients coming into the Lupus Clinic just seemed to be really sad and did not seem to be getting better even though their lab results were improving.”
Mr. Leung’s observations prompted Dr. Kim to consider what other factors might be affecting patient experiences with SLE.
The study’s findings indicate that when both formal and informal sources provide insufficient appraisal and informational support to SLE patients, health-related quality of life is negatively affected. The data also indicate a reciprocal association and show that integrating community organizations, physicians and patients’ friends and family into capacity-building interventions can enhance this social support.
“We were concerned that traditional quantitative research approaches—for example, using surveys—do not completely capture the patient experience because the questions are produced by clinicians or researchers,” Dr. Kim says. Mr. Leung’s “qualitative approach enabled our patients to discuss at length their a priori concerns. We were surprised at how rich the data set was, and I think [Mr. Leung’s] qualitative approach was critical.”
The researchers conducted 10 semi-structured interviews with six recruited, consented adult patients with SLE (as classified by the ACR or the Systemic Lupus International Collaborating Clinics criteria2,3) to determine their health-related quality of life. The transcribed interviews were analyzed using an iterative process, and findings were presented to an interactive public forum with SLE patients, patients’ family members and friends, and healthcare professionals to assess accuracy.
Four themes emerged: