Massachusetts Chapter of the American College of Surgeons

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Patient Reported Outcomes in Parry-Romberg Syndrome: A Pilot Study on the Functional and Psychosocial Impact of Disease in Children and Young Adults
Alex Cappitelli1, Laura Nuzzi1, Olivia Langa1,Fatma Dedeoglu2, Ruth Ann Vleugels3 Ingrid Ganske11
1Department of Plastic & Oral Surgery, Boston Children's Hospital, Boston, MA; 2Rheumatology Program, Boston Children's Hospital, Boston, MA; 3Department of Dermatology, Brigham & Women's Hospital, Boston, MA

Parry-Romberg Syndrome is a rare craniofacial disorder characterized by progressive unilateral atrophy of the face. This study aimed to assess the functional and psychosocial impact of facial atrophy in pediatric and young adult populations.

This a prospective review of patient-reported outcomes for patients with Parry-Romberg Syndrome who were seen clinically between 2019 and 2020. Evaluations were collected from 18 patients, aged 7-23, using the FACE-Q Craniofacial Module. Patients responded to questions across several FACE-Q domains, including functional (Facial Function, Facial Appearance, Forehead Appearance, Cheek Appearance, Jaw Appearance, Adverse Effects) and psychosocial domains (Appearance Distress, School Functioning, Social Functioning, Psychological Functioning). Scores in each domain were converted on a 0-100 RASCH Transformed Scale, with higher scaled scores corresponding to greater overall functioning. Analyses were performed to calculate the median scores for all patients across FACE-Q domains, identify differences between younger (age 7-14) and older (15+) patients, and identify the frequency of adverse effects using the Adverse Effects domain.

Median scores were highest in the Facial Function domain (median score = 100, IQR =13) and lowest in the Facial Appearance domain (median score = 61, IQR = 24.5). There were no significant differences in median scores across all FACE-Q domains between age groups (p>.05). Twelve patients reported Adverse Effects, including firmness of the face (n=7), tightness (n=6), and itchiness (n= 5).

Further longer term patient-reported outcome data will help characterize the impact of this disease on patients and may be useful in assessing patient satisfaction following reconstructive procedures to improve facial symmetry.

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