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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...
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 ...
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