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:
1) Ambiguous, Inconsistent & Unpredictable Symptoms
Despite visits to multiple physicians in a variety of subspecialties, answers and a diagnosis linking a wide range of initial symptoms (e.g., constant fatigue, joint pain, rash and photosensitivity) in the pre-diagnosis stage proved difficult to come by.
Even after a diagnosis of SLE, patients still experienced ambiguity associated with their symptoms, which could change within a patient over the course of the disease during flares affecting different organs. Variability in pain, fatigue and other symptoms affected employment and social engagements, and made an impact on an SLE patient’s ability to plan their days.
Additionally, symptoms may vary a great deal from patient to patient, meaning respondents had difficulty finding a common pattern of symptoms between themselves and others with SLE.
According to Mr. Leung, one strategy that emerged from the 2019 Lupus meeting from the Duke University Lupus Clinic is to use a simple subclassification to categorize patients’ clinical symptoms.
“Type 1 symptoms refer to the standard things rheumatologists are concerned with, such as inflammation, damage, activity and organ involvement,” Mr. Leung says. “Type 2 symptoms refer to aspects of lupus that are usually of primary concern to the patient, such as fatigue, bodywide pain, sleep deprivation and depression. Medication typically only addresses type 1 symptoms.”
Using these classifications can improve physician-patient communication because it acknowledges that patients’ type 1 lupus and type 2 lupus symptoms can change independently.
2) Poor Communication
Respondents struggled with their healthcare providers’ lack of knowledge and misconceptions about SLE and expressed the need for more information about SLE from these health professionals. They also expressed general confusion about some aspects of their disease. They mentioned wanting their rheumatologists to fulfill the role of providing this information, and they also wanted these professionals to do a better job of listening to patient questions and concerns. Some felt their rheumatologists had preconceived notions (based on other patients or medical texts) of how their symptoms were supposed to present rather than accepting what their patients were telling them about their symptoms.
“We all need social support, regardless of presence of disease,” Mr. Leung says. “With lupus, what may be going on is that specific aspects of the disease, namely the variability and inconsistency of symptoms, prevent patients from maintaining sources of social support. Part of this maintenance is done through communication with friends, family and physicians. But when specific aspects of lupus prevent patients from effectively communicating, those sources of social support begin to erode.”
3) Experience Not Validated
Poor communication with both physicians and loved ones can lead a patient to feeling invalidated. Although some of this may result from the disease process itself, respondents said their own lack of sharing about the disease made it difficult for people to validate their experience.
“In particular, the general public does not understand that SLE does not just involve having a symptom, but that it is a disease in which there is variability of symptom presentation. Respondents felt this lack of awareness, coupled with the variety of symptoms with variable severity, made people in their social network not believe them and provide validation,” the study says.
Being denied validation that their disease and its symptoms were real, respondents developed a sense that they could not rely on others for help when needed, significantly deteriorating their social networks.
4) Problematic Aspects of Social Support, Including Role Changes
Respondents reported receiving support they perceived as not useful. They also reported changes in social roles that impaired their ability to provide support to others and changed their self-identity. One respondent noted well-meaning friends and family believed they were aiding them by advising against doing activities that might exacerbate their symptoms, but that this created a barrier to maintaining relationships. “Respondents noted that changes in their ability to fulfill previous social roles was challenging,” the study says.
Dr. Kim and Mr. Leung undertook the study along with Elizabeth Baker, PhD, a professor of behavioral science and health education at Saint Louis University’s College for Public Health and Social Justice in St. Louis, Mo., whose career has focused on applying community-based participation research approaches to understand how social determinants of health, such as social support, influence health outcomes. “[Dr. Baker’s] expertise enabled us to more deeply understand the patient’s perspective, providing a richness to the data set,” Dr. Kim says.
Historically, public health officials facilitate supportive partnerships, but for these partnerships to succeed, Mr. Leung says, there must be buy-in from physicians, community organizations, other academics and patients alike.
Although a variety of organizations formed both by patients themselves (e.g., Kathleen Arntsen’s Lupus and Allied Diseases Association) and nonprofits (e.g., the Lupus Foundation of American and the ACR) have implemented programs to address the information gap and enhance awareness of the presence and impact of social support erosion in SLE, patients still say social support erosion is a problem. “This suggests that current efforts need to be revamped to better address our patients’ concerns,” Dr. Kim says. “How this will be implemented will be challenging.”
Possibilities include further developing both in-person support groups and web-based or mobile apps. Tools such as the Duke classification system facilitate actionable discussions between patients and their rheumatologists. Ultimately though, Dr. Kim says, the rheumatologist must help their patient identify and refine what needs are not being adequately addressed, because the patient likely has the closest relationship with their provider regarding their SLE.
According to Mr. Leung, there has not been a lot of involvement of social science/public health in the SLE world until the past two decades. “Additionally,” he says, “clinical research often does not involve patient perspectives in generating research questions, so the areas of research may not always align with aspects of disease most important to patients.”
From a clinical standpoint, the biggest takeaway, Mr. Leung adds, is the importance of true empathy and effective communication during the medical visit, and the importance for rheumatologists to reflect on how their interactions with patients impact patient quality of life.
“What we saw in our work in SLE specifically is that even the act of making the patient feel heard is both desired and an unmet need among our patients,” he says.
Renée Bacher is a frequent contributor to publications on health and medicine, and a longtime member of the American Society of Journalists & Authors.
What Patients Say …
“I just break down sometime[s]. [The rheumatologist] asked me these asinine questions. But the answer I give is not good enough for [my rheumatologist]. It’s not what [my rheumatologist] wants to hear. [My rheumatologist says to me] ‘Oh no, you shouldn’t have that [those symptoms].’ But I do.”
“It [lupus] attacks in different areas in different moments. Some people look at it—how is something making your head hurt and giving sores in your mouth? How is something making your body hurt? I don’t really hang out with a lot of people. They just don’t really believe it. And I don’t like them anymore.”
“Even when I’m healthy, I still need help. If you [I] try to do too much. Just because you feel good today, don’t do everything. You could feel bad all week [if you try to do too much]. I’m trying to get him [my partner] to understand that. I think that the most important thing is that, no one in my family understands it. No one in my family. They don’t ask me anything. They don’t come see me. There is no help. There is nothing.”
- Leung J, Ra J, Baker E, et al. ‘… Not having the real support that we need:’ Patients’ experiences with ambiguity of systemic lupus erythematosus and erosion of social support. ACR Open Rheumatology. 2019 May 22;1(3):135–144.
- Hochberg MC. Updating the American College of Rheumatology revised criteria for the classification of systemic lupus erythematosus. Arthritis Rheum. 1997 Sep;40(9):1725.
- Petri M, Orbai AM, Alarcón GS, et al. Derivation and validation of the Systemic Lupus International Collaborating Clinics classification criteria for systemic lupus erythematosus. Arthritis Rheum. 2012 Aug;64(8):2677–2686.