Looking for trouble -- patient preference, misdiagnosis and overtesting: a teachable moment.

Story From the Front Lines A 74-year-old woman with systemic sclerosis was referred to a rheumatology clinic to reestablish care after a 5-year hiatus. Diagnosed as having scleroderma 30 years earlier, her disease manifestations of sclerodactyly, Raynaud phenomenon, gastroesophageal reflux, and calcinosis were consistent with the limited cutaneous subtype of systemic sclerosis, and she had never required anything more than a proton pump inhibitor to control her symptoms. Over the course of the visit, she made it clear that as long as she felt well enough to spend time with her family and tend to her garden, she wished to avoid invasive medical testing. She mentioned that she discontinued routine cancer screening several years earlier because, “At this stage in my life, I don’t want any more uncomfortable tests if I don’t really need them. No point in looking for trouble if I feel good.” Although she had no symptoms of cardiopulmonary disease, after learning that pulmonary hypertension and interstitial lung disease are leading causes of death in patients with systemic sclerosis and that it is common practice to screen for these complications at regular intervals,1 she agreed to undergo an echocardiogram and high-resolution computed tomography (CT) of the chest. These would not be invasive tests, she reasoned, and she did not recall being screened for these conditions previously. There was very little discussion of the potential risks of screening or alternatives. Her echocardiogram was unremarkable, and high-resolution CT did not show evidence of interstitial lung disease; however, it did reveal esophageal dilation and several small pulmonary nodules. Her primary care physician subsequently referred her for upper endoscopy and follow-up chest CT; esophageal biopsy results showed long-term changes consistent with scleroderma, and repeated imaging showed stable pulmonary nodules. Months later, she reflected on how stressful the experience had been and wondered what good, if any, had come of all the testing.