Comprehensive care in systemic sclerosis

Abstract

Patients with Systemic Sclerosis have to cope with an uncertain disease course, varying impact on physical functioning and limited treatment options. There is increasing acknowledgement of the psychological burden that this entails, however, from a medical point of view, the impact of a disease is often expressed as a degree of physical disability . The International Classification of Functioning ( ICF ) WHO describes the functioning of people, but also the factors that affect functioning; the patient is placed central, and the following adherent domains are described: a) disease characteristics (body functions and structures), b ) activities and social participation , c ) contextual factors (available treatment) and d ) personal characteristics of patients. The aim of this thesis was to gain more insight into the impact of SSc on the health of patients with respect the ICF classification. The thesis includes a study of health care need, as well as the influence of systemic sclerosis in oral function, sexual function, hand function, impact of the disease on work status. Also a echogrdiographic technique named speckle tracking strain analysis, evaluating left ventricular function was studied. Finally, a multidisciplinary rehabilitation program was evaluated using an RCT .