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The Scleroderma Patient-centered Intervention Network (SPIN) Cohort : protocol ...
Kwakkenbos, Linda; Jewett, Lisa R; Baron, Murray; Bartlett, Susan J.; Furst, Dan; Gottesman, Karen; Khanna, Dinesh; Malcarne, Vanessa L.Introduction: Psychosocial and rehabilitation interventions are increasingly used to attenuate disability and improve health-related quality of life (HRQL) in chronic diseases, but are typically not available for patients with rare diseases. Conducting rigorous, adequately powered trials of these interventions for patients with rare diseases is difficult. The Scleroderma Patient-centered Intervention Network (S...
Symptoms of disease and psychological adaptation in Brazilian scleroderma patients
Leite, Catarina da Silva Correia Pereira; Maia, ÂngelaOBJECTIVE: To characterize the prevalence and impact of symptoms of scleroderma in Brazilian patients and to describe their satisfaction with medical care and psychological symptoms. METHODS: One-hundred and twenty eight Brazilian scleroderma patients participated in an online survey by filling out a Portuguese version of the Canadian Scleroderma Patient Survey of Health Concerns and Research Priorities. The m...
Physical, psychological and social impact of scleroderma in Europe and Brazil
Maia, Ângela; Leite, Catarina da Silva Correia PereiraScleroderma 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 contract...
New directions for patient-centred care in scleroderma : the Scleroderma Patien...
Thombs, Brett D.; Jewett, Lisa R.; Assassi, Shervin; Murray, Baron; Bartlett, Susan J.; Maia, Ângela; El-Baalbaki, Ghassan; Furst, Daniel E.Systemic sclerosis (SSc), or scleroderma, is a chronic multisystem autoimmune disorder characterised by thickening and fibrosis of the skin and by the involvement of internal organs such as the lungs, kidneys, gastrointestinal tract, and heart. Because there is no cure, feasibly-implemented and easily accessible evidence-based interventions to improve health-related quality of life (HRQoL) are needed. Due to a ...
Psychosocial characterization, symptoms and illness perception in scleroderma p...
Leite, Catarina da Silva Correia PereiraDissertação de mestrado integrado em Psicologia (área de especialização em Psicologia da Saúde) ; 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, ...
Psychological adaptation to a rare, disfiguring disease : european study with p...
Maia, Ângela; Leite, Catarina da Silva Correia PereiraBackground: Scleroderma is a chronic disorder, characterized by thickening and fibrosis of the skin and disruption of internal organs that affects global functioning and quality of life. Facial skin alterations have an impact on self-esteem and interfere with social interactions, with an association to psychological symptoms, especially depression. The aim of this study, in collaboration with a Canadian team an...
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