PATHWAY TO SCLERODERMA: CONCERNING PATIENTS’ EXPERIENCES DURING THE DIAGNOSTIC PROCESS
Introduction
Receiving a diagnosis of systemic sclerosis (SSc) can be straightforward process for some, whereas others have a circuitous route. To explore these differences, we retrospectively examined the process patients with SSc experienced from the point of first symptoms through diagnosis.
Material and Methods
Patients with SSc were approached to participate by their rheumatologist (specializing in scleroderma) during an office visit. Sixty-four patients (42% diffuse, 45% limited, 13% unknown) completed open-ended questions (e.g., what was your experience when you first felt unwell and when you were diagnosed with scleroderma). Two researchers independently categorized responses; discrepancies were resolved by discussion. One researcher reviewed patients’ records.
Results
Regarding length of time from first symptoms to SSc diagnosis, 48% of patients reported being diagnosed within one year, 31% within 1-4 years, and 21% were diagnosed more than 4 years after the first symptoms appeared.
Overall, 75% of patients reported an initial symptom(s) involving their hands (53% Raynaud’s). The 25% without symptoms involving hands commonly reported pain (50%), shortness of breath (31%), and gastrointestinal issues (19%).
Patients reported seeing up to seven health care providers (HCP) during the diagnostic process (M=2.64). When patients first noticed symptoms, 33% saw their primary care physician (PCP) and/or a rheumatologist (27%), and 19% saw their PCP subsequently. Thirty-one percent of patients had a HCP suspect scleroderma before it was diagnosed (13% of HCPs were a rheumatologist who referred them to a scleroderma specialist,
6% were their PCP). One-third of patients were diagnosed with another condition before receiving the scleroderma diagnosis. Some of these were a mis-diagnosis (e.g., carpel tunnel syndrome, lupus); others likely did have scleroderma as the underlying, but unrecognized, cause (e.g., arthritis, pulmonary arterial hypertension). Fifty percent of patients reported a scleroderma diagnosis from a scleroderma specialist, 38% from a different rheumatologist, and 3% from their PCP.
Conclusions
With 1 in 5 of patients being undiagnosed for more than four years, and only about 30% of patients having a HCP suspect a scleroderma diagnosis, educational efforts should make scleroderma a more salient diagnosis for HCPs. Three-quarters of patients reported initial symptoms involving their hands. About half of patients saw their PCP at some point in the diagnostic process, but only 9% reported their PCP suspected scleroderma.
Taken together, these data suggest educational efforts targeting PCPs and specialists to consider scleroderma more readily as a diagnostic possibility. Scleroderma should be, but often is not, included in differential diagnosis of persistent hand complaints.
REVIEW AND CHECK OF THE SUBMITTED INFORMATION
DR. NANCY DORR (DORRN@STROSE.EDU)
LIST OF AUTHORS:
Ms. Patricia Fennell, MSW, LCSW-R – Presenting Author
Specialty: Health Psychology
Job Title: President & CEO, Albany Health Management Associates, Steffans Scleroderma Foundation, Albany USA
Dr. Lee Shapiro, MD
Specialty: Rheumatology
Job Title: Clinical Professor, Albany Medical College; Director of Scleroderma Center, Community Care Rheumatology, Albany USA
Professor Nancy Dorr, PhD
Specialty: Health Psychology
Job Title: Professor of Psychology, The College of Saint Rose – Department of Psychology, Albany USA
Ms. Roberta Lukasiewicz, BS
Specialty: Health Administrator
Job Title: Research Coordinator, Steffans Scleroderma Foundation, Albany USA
Mr. Frank Houser, BS
Specialty: Psychology
Job Title: Research Assistant, The College of Saint Rose – Department of Psychology, Albany USA
Ms. Madison Taylor, BS
Specialty: Public Health
Job Title: Research Assistant, The College of Saint Rose – Department of Psychology, Albany USA