Improving Mental Health Care for People With Systemic Lupus Erythematosus: Time to Take Action

Mental health, encompassing psychological and emotional well-being, is an important aspect of overall health for people with systemic lupus erythematosus (SLE). Mental health problems, such as depression and anxiety, are highly prevalent at 25-50% in people with SLE,^1,2 including those with childhood-onset and adult-onset disease.³ The causes may be multifactorial,^4,5 and even if not directly attributable to SLE, comorbid depression is associated with neuropsychiatric SLE.⁶ Of concern, mental health problems have been shown to affect quality of life,^6,7 educational attainment,³ and disease-related outcomes, such as medication adherence,^8-10 healthcare usage¹¹ and transition to adult care.¹² Despite this, there are gaps in mental health care for people with SLE,¹³ and research is needed to optimize mental health and overall outcomes for this population.

In this issue of The Journal of Rheumatology, Smith et al present the results of an interesting cross-sectional survey study examining physician- and patient-reported barriers to mental health care for adults with SLE in Canada.¹⁴ The sample included 25 Canadian rheumatologists and 235 adults with SLE. Rheumatologists reported current practices, and level of comfort with practices. Patients reported their experiences with mental health, including mental health diagnoses and care received. Both physicians and patients reported perceived barriers to mental health care and preferences for intervention; responses from these groups were analyzed for agreement.

The results showed that only 28% of rheumatologists reported screening for depression or anxiety, and 36% for cognitive impairment in their patients with SLE, whereas 96% relied on family physicians for mental health screening. Almost all reported referring to mental health services, though access was limited at 48% for social work, 28% for psychiatry, and 4% for psychology. The top reported barriers to mental health care were limited availability of mental health providers and limited staff resources for screening; the most favored solution was access to a timely referral system (79%). Responses from patients with SLE indicated prevalent diagnoses of depression (40%) and anxiety (42%), as well as neuropsychiatric symptoms thought to be due to SLE—brain fog (42%), headache (36%), anxiety (24%), and depression (21%). Mental health screening by the family physician had occurred for 47% and by their rheumatologist for 27%. Psychologist or counselor services had been received by 50%, and psychiatry by 17%, with 55% receiving prescriptions for mental health issues. The top barriers to mental health care reported by patients were long wait times, affordability of services, and stigma; the most favorable solution was integrated mental health services in rheumatology clinics (59%). The highest level of agreement between physicians and patients was for standardized mental health screening in primary care (κ 0.64, 95% CI 0.44-0.83) and referral to mental health services (κ 0.57, 95% CI 0.3-0.85). There was lower agreement for both screening and integrated mental health services in the rheumatology clinic, with patients showing higher preference for these options.

Limitations of the study include limited generalizability due to low recruitment rate at 31% for rheumatologists, with the majority practicing in academic settings. The majority of patients responding identified as White (68%), with approximately two-thirds from urban areas, and those participating in the survey may not be representative of the perspectives and experiences of the larger SLE patient population. Additionally for both groups, those responding to the survey may have had a higher interest in mental health compared to nonresponders. There is also potential for several types of bias. There may be social desirability bias such that respondents give responses they believe to be more acceptable rather than those reflecting their true experiences and perceptions. For patient responses, there may also be information and misclassification bias (eg, inaccuracies in SLE and mental disorder diagnoses) due to the self-report nature of the survey.

Although there are a growing number of studies documenting the high prevalence of depression and anxiety, and their adverse impact on outcomes for people with SLE, this survey represents the first, to our knowledge, to examine perspectives from both adult rheumatologists and adults with SLE regarding mental healthcare experiences and preferences.¹⁴ This is a commendable effort and an important step toward advancing mental health care and outcomes for these patients. We agree with the authors that the findings highlight the fact that the status quo for standard care in SLE is not cutting it with regard to addressing mental health.

Yet, it must be noted that a similar survey was undertaken in pediatric rheumatology a decade ago, led by the Mental Health Workgroup for the Childhood Arthritis And Rheumatology Research Alliance (CARRA).¹³ The pediatric survey found low rates (only 2%) of routine use of validated depression and anxiety screening tools among providers caring for youth with SLE in Canada and the United States, and availability of an affiliated mental health provider was reported for less than half of clinics. What differed markedly from the current study¹⁴ was that despite the lack of screening and readily accessible resources, 90% of pediatric rheumatology providers thought they should be screening for at least depression symptoms in clinic, pointing toward a need for practice change. Since then, evidence from the literature shows that screening for depression and anxiety in pediatric rheumatology clinics across North America is both feasible and of high utility for youth with SLE.¹⁵ Moreover, there have been a number of published quality improvement projects over the past several years, dedicated to establishing and increasing mental health screening uptake in pediatric rheumatology clinics.^16-19

Notably, the adult rheumatology providers in this study had limited support for screening for depression and anxiety in their clinics. One potential reason may be differences in the resources available to pediatric rheumatologists compared to those subspecialists on the adult side. In Canada, whereas approximately 90% of pediatric rheumatologists practice in academic settings, about 50% of adult rheumatologists practice in solo or small group private practice settings.²⁰ The divide is even greater in the US, where 95% of pediatric but < 20% of adult rheumatologists are estimated to practice in academic medical centers.²¹ As such, in lacking the resources of a large hospital-based referral network and true multidisciplinary care, many adult rheumatologists may refer out of their practices. It is therefore not surprising that almost the entire respondent pool of rheumatologists in the study reported asking family physicians to conduct mental health screening. Yet, fewer than half of patient respondents reported that their family physician had screened them, similar to a study of pediatric SLE clinics in the US and Canada.¹⁵ This suggests a major deficit in mental health screening for people with SLE if not done in rheumatology clinics, likely translating to under-detection of even the most common mental health symptoms in people with SLE.

Among the most striking findings of the current study by Smith et al¹⁴ is the disconnect between what rheumatologists believe and are prepared to provide, and what patients want with regard to addressing the mental health needs of people with SLE. The findings echo those of a recent qualitative study of adults with SLE, which identified a strong relationship with their rheumatologist as a facilitator for using mental health services, and preference for services from providers who work with people with SLE.²² Similarly, studies of adolescents and young adults with SLE and their caregivers perceived rheumatologists as a preferred source for mental health screening and care.²³ This misalignment between Canadian rheumatology providers and patients may create persistent gaps that patients feel exist in the care they receive in their rheumatology clinics. One way to address this issue is for future work in this arena is to engage patient partners.

In an effort to address the needs of the patient community and align them with clinical practice guidance and research for mental health of pediatric rheumatology patients, the CARRA Mental Health Workgroup has included patient partners. Their perspectives were integrated into the development of the recently published American College of Rheumatology mental health guidance for addressing mental health concerns in youth with pediatric rheumatologic diseases.²⁴ The guidance establishes a standard of care, consisting of 11 evidence-based statements, including a recommendation for regular (at least annually) screening of patients aged ≥ 12 years in the pediatric rheumatology setting. These recommendations achieved consensus in a large, diverse community of pediatric rheumatologists in the CARRA network. In a recent editorial coauthored by several patient organizations in response to the guidance, the authors strongly endorsed what they called “long-overdue” action to recommend mental health screening and mental health care integration in the rheumatology clinic.²⁵ They write, “parents, caregivers, and youth with rheumatologic diseases often see their pediatric rheumatologist as their most trusted provider, not only most knowledgeable about their disease, but about them as a person. Early assessment and intervention in the rheumatology clinic can prevent crises, improve long-term outcomes, and critically impact the lives of many young patients and their caregivers.”²⁵

There is great opportunity for pediatric and adult rheumatologists to join together with patients and families and multidisciplinary stakeholders to advocate for the resources and care that people with SLE desire and deserve. Development of mental health guidance for people with SLE would be an important effort toward setting a standard of care. Such a collaborative effort would optimally include rheumatologists (adult and pediatric), mental health providers, primary care providers (PCPs), patients, and caregivers. Strong coordinated efforts could be made to advocate to hospital and government leadership for the prioritization of mental health infrastructure and resources, and to bolster partnerships with philanthropic and patient organizations to leverage funding sources and educational programming. This would ideally improve access to mental health personnel, enabling standardized care in the rheumatology setting, interprofessional collaboration, and integrated care models. Such models may leverage virtual mental health resources that could be tailored to people with SLE; for example, a remotely delivered cognitive behavioral therapy intervention has been developed for youth with SLE.²⁶ Resources could also be used to strengthen connections between rheumatologists, community mental health providers, and PCPs. Specifically, better education of mental health providers and PCPs on the specific needs of people with SLE would help address the need for tailored mental health care, which was voiced by patients in the current study and other studies.^14,22,23 Additionally, provision of educational resources for patients and families could help reduce the stigma surrounding mental health, another barrier raised in the study by Smith et al and Goldschen et al.^14,22

Encouragingly, most rheumatologists (88%) in the current study felt comfortable at least asking patients about mental health.¹⁴ In pediatric rheumatology, we have seen gradual growth of strong buy-in from providers to be partners in detecting and even addressing mental health symptoms, and an understanding that we cannot rely solely on our primary care clinics to carry this responsibility. Providing even basic mental health education among pediatric rheumatologists has had a marked impact on pediatric rheumatologists’ willingness and comfort with screening in clinic.¹⁶ Over the past 10 years, mental health has been added to the topics covered in the American Board of Pediatrics rheumatology exam. More recently, several in-person and virtual workshops have been given to pediatric rheumatology trainees and practicing providers on topics of mental health knowledge, screening, and even managing common mental health concerns. In the current study by Smith et al, the authors found that the vast majority of respondents received training only in medical school and that merely 8% felt “very comfortable” with screening for depression and anxiety.¹⁴ We agree with their conjecture that additional training in detecting and addressing anxiety and depression would be a helpful initial step in addressing the gap in mental health care that Canadian patients with SLE face.

Overall, despite the advances in understanding how widely prevalent depression and anxiety are in SLE, there still remain major gaps in knowledge regarding our understanding of the crossover between mental health and SLE and the most effective treatments for our patients. Novel interventions that allow for cross-collaborations between rheumatologists and mental health providers are needed to better serve the patient community within the landscape of limited mental health services in Canada and elsewhere. We must take a collaborative approach, including multidisciplinary providers, patients, families, and other stakeholders, to advance mental health research and advocate for better mental health resources and overall care for people with SLE.

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