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Scleroderma — Pathways to Diagnosis
Pathways to Diagnosis is a pilot study to examine the experience of patients diagnosed with systemic sclerosis as they have gone through the process of being diagnosed with the disease.
It is clear from clinical experience that some patients experience a relatively straightforward path to diagnosis, while others experience symptoms for years and are referred to various specialists before finally being referred to a rheumatologist. Thus, we sought to describe and examine correlates of different pathways to scleroderma diagnosis.
We asked patients of Dr. Lee Shapiro at the Center for Rheumatology with a diagnosis of systemic sclerosis if they would be interested in participating.
Preliminary results indicate that (subject to change upon further analysis):
On average, it took 3 years from the onset of the first symptoms until patients received a diagnosis of scleroderma (with a huge range… for some it was a couple months between onset of symptoms and diagnosis, with the longest time between these points was almost 30 years)
Roughly 1/3 of patients reported that their symptoms had been diagnosed as something else (prior to receiving the scleroderma diagnosis). There was no consistent diagnosis given among patients, but more than one patient reported an earlier diagnosis of lupus, arthritis, fibromyalgia, and carpel tunnel syndrome before it was understood that they had scleroderma.
Not surprisingly, the most common initial symptoms related to scleroderma that patients experienced were related to issues with their hands, such as sores/ulcers, swelling, and carpal tunnel syndrome; 70% of patients reported one or more issues with their hands. The single most common response was apx ½ of patients experienced Raynaud’s symptoms in their hands as among the first symptoms related to scleroderma that they experienced.
Other initial common symptoms patients were: shortness of breath, gastrointestinal issues, change in skin texture, thickening, or pigment (with approximately 15% of patients reporting each of these symptoms).
Examining patients reactions to being diagnosed with scleroderma, it is not surprising that many patients reported fear and concern. We were especially encouraged by the resiliency expressed by many patients, including feeling hopeful about the future (~35%) and feeling confident in their ability to cope (~40%).
Over half of patients explicitly reported that Dr. Shapiro’s care has helped them to cope with scleroderma.
Scleroderma: The Truth from Virginia M Orzel
The Steffens Research Foundation presents:
The 2nd Interprofessional Education Event: Focus on Scleroderma
Faculty and students from various area health schools, an expert panel, and a team of patient volunteers engaged in an interactive exercise employing effective strategies of coordinated care between specialties. The goal is encourage collaboration among professonals, who have learned to see their role as members of a diverse team. Scleroderma makes an excellent model due to the numerous and complex needs of a patient with this diagnosis.
Steffens Research Foundation: Breaking the Chains
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