An International Collaborative Standardizing Patient-Centered Outcome Measures in Pediatric Facial Palsy

Area of Science:

• Pediatric Otolaryngology
• Health Outcomes Research
• Patient-Centered Care

Background:

• Pediatric facial palsy lacks standardized outcome measurement, hindering clinical care advancement.
• A patient-centered approach is crucial for developing relevant and effective outcome measures.

Purpose of the Study:

• To develop a standardized outcome measurement set for pediatric facial palsy.
• Involve an international multidisciplinary group, including patients and representatives, in the development process.

Main Methods:

• An international working group (21 experts and patient representatives) conducted 7 teleconferences over 9 months.
• A 2-round Delphi process, informed by literature reviews and patient advisory groups, was used to reach consensus.
• The process defined scope, outcome domains, measurement tools, time points, and case-mix variables.

Main Results:

• A standard set of outcome measurements was designed for all pediatric facial palsy types (congenital/acquired, unilateral/bilateral, etc.).
• Included functional, appearance, and psychosocial outcomes using clinician-, patient-, and proxy-reported measures.
• High agreement (85-96%) was achieved among participants regarding the set's relevance to patient-important outcomes.

Conclusions:

• An international collaborative effort produced a free, standardized outcome measure set for pediatric facial palsy.
• This set enables quality of care evaluation, clinician benchmarking, and treatment pathway comparison.
• Facilitates the introduction of value-based reimbursement strategies in pediatric facial palsy care.