THE DIAGNOSIS OF SCLERODERMA AS A TRAUMATIC EXPERIENCE:
PATIENTS’ REACTIONS TO THE DIAGNOSTIC PROCESS
Introduction
Both the process of being diagnosed with a chronic illness and the illness itself can be traumatic experiences for patients. Diagnosis often does not happen quickly and learning that one has a potentially life-threatening disease for which there is no cure can create negative reactions and a fear of the unknown. This is a growing issue due to the increased prevalence of chronic illness worldwide. The current study examines the diagnosis of a chronic illness, systemic sclerosis (SSc), as a traumatic experience.
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 messages about scleroderma have you received, how did you react to the diagnosis). Two researchers independently categorized responses; discrepancies were resolved by discussion. One researcher reviewed patients’ records.
Results
Seventeen percent of patients received potentially traumatic messages from a health care provider (HCP) during the diagnostic process. For example, one patient reported learning there was no treatment for scleroderma and that it would continue to get worse, another patient was told she/he had a 5+ year life expectancy, one reported being told she/he was dying (before scleroderma was diagnosed), and another reported physicians involved in the diagnostic process were dismissive of independent and seemingly unrelated symptoms.
Fear was the most common patient reaction (78%). For example, 48% of patients reported being afraid of the future and 30% reported being afraid of dying. Twenty percent of patients reported feeling upset about not having a diagnosis (before scleroderma was diagnosed), 17% were concerned because of the disease progression they witnessed in others, and 14% reported anticipatory grief (e.g., grieving potential future loss
of hand functioning). Thirty percent of patients learned about scleroderma on the internet and many found this fear-provoking. Sixty-eight percent of patients reported their rheumatologist helped to reduce their concerns.
Conclusions
Diagnosing and treating chronic illness can be difcult for both patients and practitioners; all involved face ambiguity regarding the course illness can take. These data underscore the importance of physicians attending to the way information regarding scleroderma is conveyed to patients. Given the diagnostic process for scleroderma can be lengthy, patients may be feeling afraid and/or traumatized for years. HCP working with scleroderma patients should address patients’ emotions and the causes of them (e.g., internet, statement by HCP) and know that their conversations with patients can make a difference.
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