On the road to better care for patients with systemic sclerosis

Liem, S.I.E.

My thesis primarily focused on projects concerning the role of autoantibodies in patients with systemic sclerosis (SSc), disease outcomes, and the assessment of non-pharmacological interventions for this group. SSc is a rare and complex disease that presents challenges in both diagnosis and management. Further understanding of the role of autoantibodies in SSc would aid in risk stratification and potentially offer new treatment avenues. In the first part of my thesis, we identified possible indications for a pathogenic role of SSc-specific autoantibodies, particularly anti-topoisomerase I antibodies (ATA). Regarding disease outcomes, we gained deeper insight into the trajectory of the Health Assessment Questionnaire, disease duration and severity in SSc patients from the Leiden CCISS cohort. In the last part, we evaluated two non-pharmacologic interventions: silver fiber gloves and physical therapy. We conducted a randomized controlled cross-over trial to assess the effect of...Show moreMy thesis primarily focused on projects concerning the role of autoantibodies in patients with systemic sclerosis (SSc), disease outcomes, and the assessment of non-pharmacological interventions for this group. SSc is a rare and complex disease that presents challenges in both diagnosis and management. Further understanding of the role of autoantibodies in SSc would aid in risk stratification and potentially offer new treatment avenues. In the first part of my thesis, we identified possible indications for a pathogenic role of SSc-specific autoantibodies, particularly anti-topoisomerase I antibodies (ATA). Regarding disease outcomes, we gained deeper insight into the trajectory of the Health Assessment Questionnaire, disease duration and severity in SSc patients from the Leiden CCISS cohort. In the last part, we evaluated two non-pharmacologic interventions: silver fiber gloves and physical therapy. We conducted a randomized controlled cross-over trial to assess the effect of silver fiber gloves on the burden of Raynaud’s Phenomenon in SSc patients. Lastly, we evaluated the levels of physical activity in SSc patients, assessed the contents, use, and preferences of physical therapy care from the perspective of patients and their physical therapists, and proposed recommendations for improved communication between physical therapists, patients, and other healthcare providers, as well as postgraduate education on SSc for physical therapists.
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On the road to better care for patients with systemic sclerosis

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