Psychosocial characterization, symptoms and illness perception in scleroderma patients: an international study

Introduction: Scleroderma, also known as systemic sclerosis, is a rare, complex and autoimmune disease, with unknown origin and cause (Coelho, Oliveira, & Kroon, 2008). It affects the connective tissue and is characterized by vascular dysfunction, inflammatory and fibrotic of multiple organ systems (Nadashkevich, Davis, &Fritzer, 2004). The symptoms that suggest the existence of scleroderma include: Raynaud phenomenon, skin thickening, calcinosis and telangiectasia (Li, Sahhar, & Littlejohn, 2008). In addition to the swelling of the fingers and hands that may hinder mobility and become a very painful phenomenon (Li et al, 2008), the alterations in internal organs results in significant morbidity and mortality (Assassi, del Junco, Sutter, McNearney, Reveille, Karvanas, …,Gourh, 2009). Despite its severity, the disease remains unknown to many health professionals and may take several years before those affected are diagnosed. This disease is associated with pain, fatigue and progressive disability. Among the physical changes with more psychological impact are the changes in the skin (Malcarne, Hansdottir, Greenbergs, Clements & Weisman, 1999). Due to the disfigurement and physical changes that are typical of the disease, psychological morbidity is high and includes depression, body image problems. Method: The participants in this study are 563 scleroderma patients from 12 European countries and Brazil. These participants are mostly women. The instruments used in this study were the “Canadian Scleroderma Patient Survey of Health Concerns and Research Priorities” and “The Brief Illness Perception Questionnaire (Brief IPQ)”. Results: The most common symptoms and with more impact on the lives of the participants were joint pain, fatigue and Raynaud’s. Just under one fifth of the participants had a diagnosis of scleroderma with the first doctor consulted. Participants with more years of diagnosis revealed to be more satisfied with the medical care they receive. Participants reported a high degree of concern with scleroderma and 84% reported concerns with body image due scleroderma. Depression, anxiety and social phobia are common among scleroderma patients. Conclusion: Due to gravity, lack of knowledge, unpredictability and disfigurement of scleroderma, the existence of psychological disorders in these patients is common.

Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.