Personalized Facial Rehabilitation Program for Adults with Systemic Sclerosis Improving Mouth Function and Quality of Life

What this Trial Is About

This research focuses on systemic sclerosis, a rare autoimmune disease that affects the skin and tissues, especially the face. Facial involvement causes stiffness, joint problems, dry mouth, and difficulties with mouth opening, eating, dental care, and weight loss. These issues significantly affect daily life and appearance, but are often overlooked and not well treated with current medicines. The study aims to evaluate if a personalized facial rehabilitation program can improve these facial problems compared to standard care in patients with systemic sclerosis. Participants in the study will be randomly assigned to one of two groups. The experimental group will receive a personalized rehabilitation program consisting of three 2-hour sessions over two weeks at the hospital. These sessions include physiotherapy with facial and mouth massages and exercises, speech therapy for swallowing and speech, educational workshops on dry mouth and oral care, therapeutic makeup, motivational interviewing, a personalized self-rehabilitation notebook, and a video tutorial. They will also perform facial self-rehabilitation at home. The comparison group will receive a standard prescription for facial rehabilitation. During the study, participants will be assessed using the Mouth Handicap In Systemic Sclerosis MHISS score at weeks 2, 6, and 12 to evaluate facial function and aesthetics. Other measures include mouth opening distance, skin scoring on the face, pain scale, quality of life questionnaires, weight, and rehabilitation session details. The study involves regular evaluations over 12 weeks to monitor progress, with the main outcome measured at week 6. The total study duration and follow-up will extend to at least 12 weeks.

Efficacy of a Personalized Rehabilitation Program of Facial Involvement in Systemic Sclerosis