Connections: New team streamlines care for sarcoidosis | Winter 2022

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From the OHSU Knight Cardiovascular Institute

In the literature, you’ll see references to sarcoidosis as a rare disease. However, an explosion of modern research shows that this multisystem, autoinflammatory disorder of unknown etiology is growing in prevalence.

As available testing and treatment strategies improve, physicians are now more deliberately testing for sarcoidosis, especially outside of the lungs and lymph nodes.

OHSU currently has a large and rapidly growing cohort of sarcoidosis patients. To better serve these patients, OHSU has assembled specialists from 10 disciplines to form the OHSU Collaborative Sarcoidosis Program.

We believe this co-managed approach is critical for avoiding fragmented care and unnecessary delays for patients. At the same time, this approach maximizes the unique perspective that each specialist team member brings to the evaluation of this multisystem disease and facilitates real-time decision-making.

Finally, this co-management approach and combined multispecialty clinics consolidates patient visits into as few trips as possible. This results in streamlined care that is better for all patients, but especially for those traveling long distances within our large catchment area.

Combined clinics and team review Sarcoidosis most often affects the lungs, but can cause disease in the skin, eyes, nervous system and, often dangerously, in the heart. The OHSU Collaborative Sarcoidosis Program strategy results in timely patient evaluation by the appropriate specialties. With this multidisciplinary resource, we improve clinical outcomes as well as patient convenience and satisfaction. After initial patient consultation in a combined clinic, our process allows for expedient multidisciplinary review of challenging cases or new diagnostic dilemmas.

  • Combined Pulmonology/Rheumatology Clinic: Our pulmonary sarcoidosis patients are often first seen in this joint clinic, usually seeing both specialists at the initial appointment. As an inflammatory condition, the only direct disease modifying therapy for sarcoidosis is immunosuppression. When required, early treatment improves outcomes and minimizes irreversible damage.
  • Cardiology and Electrophysiology Clinic: Sarcoidosis patients with suspected cardiac involvement are seen by a cardiology team — a general cardiologist, an advanced heart failure cardiologist and an electrophysiologist evaluate our patients, often in a single setting. When sarcoidosis affects the heart, the result can be an abrupt onset of dangerously slow or fast heart rhythms and various forms of heart failure, is most often diagnosed at autopsy. Based on each patient’s presentation, this cardiology team can recommend and provide treatment ranging from pacemaker/defibrillator implantation, antiarrhythmic medications, catheter ablation of arrhythmias, heart failure medications or even cardiac transplantation.

The OHSU Collaborative Sarcoidosis Program can assist you by:

  • Advising on appropriate selection of diagnostic testing and procedures.
  • Screening for multiorgan involvement, e.g., cardiac, ophthalmologic, neurologic, etc.
  • Assessing the need for aggressive immune-system modulation to avoid irreversible end-organ damage.
  • Facilitating access to single-center and multicenter sarcoidosis research studies.
  • Advanced interventional procedures to treat disease sequelae when appropriate.

When to refer

  • Patients with complex or multiorgan sarcoidosis disease requiring multidisciplinary care
  • Patients with diagnostic studies suspicious for sarcoidosis requiring a second opinion
  • Patients with known or suspected cardiac sarcoidosis requiring advanced imaging and/or voltage-guided endomyocardial biopsy