Physical, psychological and social impact of scleroderma in Europe and Brazil

Abstract

Scleroderma involves several physical changes in visible parts of the body, as face and hands. Scleroderma affects body image and is associated with depressive and anxiety symptoms and sexual dysfunction. These physical disfiguring changes are in visible and important interpersonal contact body parts. Scleroderma symptoms can be painful, such as digital ulcers, Raynaud's phenomenon, skin changes, joint contractures and gastroesophageal reflux, and the severity of these symptoms is associated with depression. This study aims mainly to characterize the most common symptoms of scleroderma, the impact felt by patients, assess satisfaction with medical care, psychological symptoms and illness perception. This study has 563 participants belonging to various European countries and Brazil. These participants are mostly woman. The instruments used in this study were the Canadian Scleroderma Patient Survey of Health Concerns and Research Priorities and The Brief Illness Perception Questionnaire. The five most common symptoms reported by patients were: joint pain, fatigue, Raynaud's, muscle pain and hardening / tightening skin. Fatigue was the symptom reported as having more impact on the daily lives of participants. Participants who reported more symptoms, also reported higher impact of symptoms. 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. Almost a third of participants reported that they do not have access to all medical care due to its cost. In sum, almost half the participants showed that scleroderma affects their ability to work. Regarding depression, 38% of participants have sensitivity for sever depression, and younger participants reported more symptoms of depression. Depressive symptoms are associated with the impact perceived of symptoms and not with the frequency of symptoms. In relation to anxiety, 32% of participants reported symptoms of generalized anxiety and participants with worse body image reported more symptoms of anxiety. Participants with symptoms of generalized anxiety reported more symptoms of pain. The symptoms of social phobia are reported by 30% of the participants. More than half of participants reported that they avoid activities which they are the center of attention. Participants with social phobia reported worse body image. Participants reported a high degree of concern with scleroderma and 84% reported concerns with body image due scleroderma.