Lupus is complex enough without working together

A lack of high quality evidence for the management of systemic lupus erythematosus (SLE) and different treatment approaches depending on the clinician’s specialty contribute to inconsistent patient care.

A study, comprising semi-structured interviews with rheumatologists, nephrologists and immunologists from 19 institutions across Australia, revealed specialists ‘felt constrained and uncertain’ given the lack of an evidence base for treatment.

They sometimes resorted to applying evidence from other disease settings to lupus manifestations.

“Different specialists described preferences or inclinations for certain medications in SLE management due their familiarity with therapy gained through clinical training, or its use in treating another disease they commonly managed,” the authors wrote.

“For example, nephrologists preferred prescribing mycophenolate mofetil because of its widespread use in transplantation. Senior rheumatologists tend to prescribe cyclophosphamide as it was widely used in managing SLE during their training.”

And there was evidence of some territory disputes between specialists.

Immunologists and rheumatologists believed they were best suited to manage a multisystem disease and accused nephrologists of stealing lupus patients and undermanaging non-renal manifestations.

“Conversely, it was acknowledge that working in multidisciplinary clinics provide a valuable opportunity for upskilling.”

Researcher Mr David Tunnicliffe, from the Centre for Kidney Research at The Children’s Hospital at Westmead, told the limbic multidisciplinary clinics were also reassuring for patients, less time consuming and less confusing.

“Patients feel they are getting best evidence based care as they are seeing multiple specialties and getting all the relevant opinions as opposed to missing an important one.”

He said better decision-making required more collaborative care, improved communication between specialties and the incorporation of patient priorities and values.

“Patient reported outcomes could be implemented. They are quick and easy to do and give additional insight into the impact the disease is having on a patient’s life.”

He said tools such as Lupus Impact Tracker and Multi-Dimensional Health Assessment Questionnaire/Routine Assessment of Patient Index Data (MDHAQ/RAPID3) could help improve treatment satisfaction, adherence and quality of life.

“There are a lot of studies suggesting variability in treatment is not based on patient’s characteristics and may instead be due to decisions made by specialties and not informed by evidence.”

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