The Development and Initial Validation of PUMC Localized Scleroderma Facial Aesthetic Index: A Pilot Study.

BACKGROUND

Localized scleroderma (LoS) is an autoimmune connective tissue disorder leading to serious long-term aesthetic impairment on patients. Objective evaluation methods are badly needed to facilitate the evaluation of the surgical treatment on individual patients and clinical studies.

OBJECTIVE

To develop and assess the reliability and validity of Peking Union Medical College LoS facial aesthetic index (PUMC LoSFAI).

METHODS

Twelve experts devoted their time and resources in the development and validation. LoS patients in the stable phase were recruited. Reliability and validity was then assessed. LoS patients were evaluated by two plastic surgeons using PUMC LoSFAI and LoS skin damage index (LoSDI). The PUMC LoSFAI comprises 4 domains for the local assessment (surface area of lesion, dyspigmentation, skin thickness and soft tissue atrophy) and 3 domains for the overall assessment (facial symmetry, proportion and profile) to describe LoS facial aesthetic impairment. Face-Q was completed by patients at each visit.

RESULTS

Thirty-two LoS patients had 96 visits, during which 138 lesions were assessed. PUMC LoSFAI and 7 domains demonstrated substantial to excellent inter- and intra-rater reliability (ICC 0.995, κ 0.72-0.91, r 0.85-0.99, respectively). Seven domains considered to be important to extremely important variables (mean rank 3.2-3.8) had high I-CVI (> 0.78) and S-CVI (0.93). PUMC LoSFAI correlated excellently with LoSDI (r = 0.933, P < 0.001), and correlated fairly with Face-Q (r = - 0.399, P = 0.001).

CONCLUSIONS

PUMC LoSFAI was developed and evaluated to play as a tool of aesthetic impairment assessment for LoS patients, which may facilitate the evaluation of the treatment on individual patients and clinical studies. PUMC LoSFAI demonstrated high reliability and validity, and further study in larger patient samples is needed to confirm these preliminary findings.

LEVEL OF EVIDENCE IV

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