Patients with SLE face a cycle of stress and frustration due to the changes in their physical health, their appearance, and their lifestyle that occur as a result of the disease [1]. SLE is an inflammatory autoimmune disorder in which the immune system produces autoantibodies that attack healthy cells, causing inflammation and other complications that can impair organs and systems, including the kidney, skin, blood, and central nervous system (CNS) [1]. As noted, symptoms may include depression, anxiety, impaired joint mobility (and associated movement difficulties), joint pain, vision changes, low-grade fevers, photosensitivity, fatigue/malaise, sleep disturbances, and psychological distress [1]. Stress exacerbates the symptoms of this chronic medical disorder, and symptoms often follow a course of flares and remissions.

Psychological problems may arise at different points in the course of the disease. For example, adjustment reactions are common at the initial diagnosis, while issues related to stress and pain management are ongoing [1]. Psychological services and treatments vary in response to the needs of the individual patient, fluctuations in the disease, stage of the disease, and the debilitating aspects of the disorder [1].

It is believed that there are approximately 1.5 million individuals in the United States with some form of lupus, although estimates of individuals with SLE range from 161,000 to 322,000 [4,5]. Lupus is more common than other better-known disorders, such as leukemia, multiple sclerosis, cystic fibrosis, and muscular dystrophy, affecting more individuals than all of these diseases combined [1].

More than 90% of SLE cases occur in women, with most individuals developing symptoms in their childbearing years (15 to 45 years of age) [7]. New diagnoses of lupus in women older than 45 years of age are uncommon [1]. SLE is most common among African Americans, with African American women having three times the incidence of White American women [7]. The incidence of lupus is also greater in Hispanic, Asian, and Native American women when compared with White women [7,8]. Statistics show that Black and Hispanic women tend to develop the disease at a younger age, are more likely to develop more serious complications (particularly cardiovascular complications and kidney disease), and tend to have a higher mortality rate from the disease as compared to White women [7].

The antinuclear antibody (ANA) test is the most specific and sensitive test for lupus and is therefore the most commonly used autoantibody test. Ninety-seven percent of patients with lupus have a positive ANA blood test [12]. As noted, lupus is a condition that is often difficult to diagnose due to the significant variation of symptoms among individuals. In 2019, the European League Against Rheumatism (EULAR) and the American College of Rheumatology (ACR) published updated classification criteria for lupus [14]. The EULAR/ACR criteria classifies a person as having lupus if they meet entry criterion of an ANA titer of >1:80, followed by additive weighted criteria (seven clinical and three immunologic) in which the patient must meet one clinical criterion and ≥10 points between the clinical criteria and immunologic criteria [14].

Four different forms of lupus have been identified: cutaneous lupus erythematosus (CLE), drug-induced lupus, neonatal lupus, and SLE [13]. CLE mainly affects the skin. It is associated with chronic skin eruptions that, if left untreated, can lead to scarring and permanent disfigurement. Drug-induced lupus is associated with ingestion of various drugs that result in lupus-like symptoms. Neonatal lupus is a rare, non-systemic condition affecting infants of women with lupus; symptoms typically resolve within six months. SLE, which affects multiple organ systems as well as the skin, is considered the most common of the four forms.

Individuals diagnosed with lupus are encouraged to do all of the following [1,10,11,13]:

When conducting a comprehensive psychological or psychiatric evaluation of patients with SLE, it is essential that premorbid cognitive abilities and personality styles and types are determined. Assessments should include a structured interview, observations, review of medical record, educational history, social history, occupational history, determination of the patients spiritual or religious beliefs, review of prior psychological or psychiatric assessments, the Systemic Lupus Erythematosus Needs Questionnaire (SLENQ), cognitive evaluations, personality assessments, mental health evaluations, and medical imaging (e.g., magnetic resonance imaging) or other scans, as needed. If cognitive test measures are administered, the tools should be sensitive and specific.

The first step of assessing cognitive level of functioning is determining if the patient is medically stable by evaluating disease activity and identifying recent and current complications. As noted, cognitive impairment test scores will fluctuate as a result of natural variations in the disease process, especially if CNS involvement has been detected [3].

In the interpretation of assessment results, the examiner should determine if the findings are the result of true cognitive impairment or if other factors are affecting assessment results. Many factors can influence the results of psychological evaluations, including [2]:

A variety of health and behavioral interventions may be used in the treatment of patients with SLE, and practitioners will benefit from the use of a multi-method, eclectic, theoretical approach [16]. It is important to adjust theoretic practices and borrow from both Eastern and Western theories in order to address the symptoms and stages of SLE. Approaches that have been successfully used in the treatment of patients with SLE include:

Considerable emotional support may be required to help patients with lupus to cope with the chronic disease. More than 50% of all individuals with lupus experience emotional problems secondary to their illness [11]. Darner found that women with lupus who had been diagnosed for longer periods of time had a healthier psychosocial adjustment [18]. Therefore, those newly diagnosed with lupus may require more support and interventions to aid in psychosocial adjustment. Some individuals are overwhelmed with having a disease and may find professional counseling to be an important means of managing their condition.

Findings indicate that "support groups, self-help groups, and peer counseling…may facilitate the individual's achievement of a positive adjustment to the newly diagnosed illness" [18]. Self-help groups offer patient education on lupus disease management, and it is recommended that those newly diagnosed with lupus receive support via peer groups. It has been noted that "participating in a support group can provide emotional assistance, boost self-esteem and morale, and help to develop or improve coping skills" [10]. Successful support groups can assist patients to gain insights into how to live with their lupus [17]. Support groups provide an avenue for the exchange of feelings and ideas regarding lupus. Robert Phillips, founder of the Center for Coping, stated "self-help or support groups can be incredibly helpful and are some of the best sources of support for people with lupus" [11]. Support groups also restore a sense of autonomy and self-reliance, resulting in a reduction in dependency for the group participants [19]. These groups can provide ideas on how to effectively cope with serious illness and manage problems associated with the condition. Lupus support groups can help members "realize they have the inner strength to cope with existential dilemmas of life as well as the comfort of knowing there are others like themselves" [17]. Gartner states that "in the case of most chronic illnesses, the issue is care not cure, and the mutual-support group can play a powerful role in helping individuals cope with their illness" [19].

Referral for specialized care is indicated if patients have evidence of CNS involvement, pain, persistent sleep disturbances, or other complicated issues related to physical or psychological symptoms. A multidisciplinary approach, with close collaboration among the patient's physician, mental health providers, occupational therapist, and other team members, may improve outcomes.

Research indicates that patients with SLE do not always report their needs to their health or mental healthcare providers [20]. In a sample of 112 subjects with SLE who completed the SLENQ, all subjects reported at least one unmet need [20]. African American participants reported a greater number of unmet needs related to health services and information compared with their White counterparts, and older patients experienced more unmet needs related to physical and psychological functioning than younger patients. In total, 98% of the patients had at least one unmet need related to physical health and functioning, most commonly fatigue (90.2%). Psychological and existential needs were reported by 91% of the subjects, and the most common psychological/existential needs were related to [20]:

In general, patients with SLE report more psychiatric symptoms than general medical inpatients [22]. A study of 326 women with SLE used the Composite International Diagnostic Interview (CIDI), the Systemic Lupus Activity Questionnaire (SLAQ), the Systemic Lupus Activity Measure (SLAM), and the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) to determine the lifetime prevalence of psychiatric disorders [2]. The results indicated that 65% of the sample had a lifetime mood or anxiety diagnosis, and usually more than one disorder was found [2]. The most common disorders were [2]: