Path to Diagnosis Is Long, Frustrating, Damaging for Women With SLE

A new study outlining the experiences of women with systemic lupus erythematosus (SLE) finds many women feel their initial symptoms are downplayed by providers, leading to costly delays in diagnosis.

Despite new therapies having improved the treatment of systemic lupus erythematosus (SLE), a new report shows that for many women, simply getting to a diagnosis is a major ordeal with significant health implications.

Study authors described the experiences of women with SLE in a study published in The Journal for Nurse Practitioners. They said the issue is important because SLE can affect multiple organs and delays in diagnosis can result in extensive damage to the musculoskeletal, renal, vascular, and neurological systems, among others.

“It is posited that a delay in the diagnosis of SLE is attributable to insufficient health care provider knowledge of clinical manifestations and diagnostic criteria and leads to amplified morbidity and mortality,” they wrote.

In the new study, the authors reviewed the existing literature and then outlined themes that emerged from interviews with 18 women with SLE who were recruited from a Houston chapter of the Lupus Foundation of America. Those themes included a long search for symptom relief, a feeling of not being heard by providers from whom they sought out care, and a sense that by the time they received the correct diagnosis, significant damage had already been done.

The authors began by noting that, among the approximately 1.5 million people in America with SLE, Black, Asian-Americans, Hispanic, and Native American populations are overrepresented. Black women, in particular, are 3 to 4 times more likely than White women to be affected by SLE, they noted. For many of the women with SLE, the start of their journey was marked by experiences of joint pain and swelling and repeated visits to the doctor.

“In many cases, the participants voiced the inability to adequately verbalize the significance of the symptoms experienced and were in some cases viewed as seeking pain medicine,” the authors said.

Some patients were referred to therapists and counselors. Some even began to question themselves. “Some of the women in the study reported ‘feeling maybe it’s all in my mind,’” the authors said.

Patients also reported having difficulty conveying their struggles to friends and family, since they outwardly appeared to be fine.

“Women with SLE experience the emotional impact of repeated rejection by family, friends, and sometimes health care providers,” the study authors wrote. “Several patients shared that their family did not see anything wrong with them.”

The women in the study, 17 of whom were Black and 1 of whom was Hispanic, reported an average gap of 8 years between the time they started having symptoms and received a correct diagnosis. During that wait, many patients saw their disease progress to include organ damage, including lupus nephritis and end-stage renal disease.

“After months of repeated hospitalizations, one woman reported end-stage renal disease and stated, ‘now I have to be on dialysis,’” the authors recounted. “The literature indicates a higher prevalence of kidney disease in Black women.”

Other women reported permanent lung dysfunction and chronic heart arrhythmias as a result of their delayed diagnoses. Previous research suggests such damage might be prevented with earlier recognition and diagnosis of SLE.

The authors said their study findings suggest providers can improve outcomes by doing a better job of showing concern about patients’ complaints, improving their communication with patients, and better familiarizing themselves with the diagnostic tests that can identify SLE.

The authors said nurse practitioners (NPs) can play an important role in improving early diagnosis of SLE.

“NPs have the unique opportunity to actively listen to patient complaints and provide comprehensive evaluation and early testing or referral,” they said. “It is vital that NPs intervene with the initial onset of symptoms in order to improve health outcomes and quality of life among SLE patients.”

Broadway-Duren JB, Cesario SK. The lived experiences of women seeking a diagnosis of systemic lupus erythematosus. J Nurse Pract.2022;18(5):534-538. doi:10.1016/j.nurpra.2022.01.019

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