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Original Investigation
May 9, 2019

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

Author Affiliations
  • 1Department of Plastic and Reconstructive Surgery, Great Ormond Street Hospital, London, United Kingdom
  • 2Director of Standardisation and Latin America, International Consortium for Health Outcomes Measurement, Mexico City, Mexico
  • 3Division of Plastic and Reconstructive Surgery, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada
  • 4Division of Facial Plastic and Reconstructive Surgery, Harvard Medical School, Boston, Massachusetts
  • 5Section of Physical Therapy, Department of Orthopedics, Radboud University Medical Center, Nijmegen, the Netherlands
  • 6Oregon State University, Corvallis
  • 7Division of Plastic and Reconstructive Surgery, Hospital General Dr Manuel Gea Gonzalez, Postgraduate Division, Universidad Nacional Autonoma de Mexico, Mexico City, Mexico
  • 8Department of Plastic and Maxillofacial Surgery, Royal Children’s Hospital, Melbourne, Victoria, Australia
  • 9The Hospital for Sick Children, Toronto, Ontario, Canada
  • 10Facial Retraining LLC, Madison, Wisconsin
  • 11Facial Nerve Clinic, Division of Otolaryngology–Head and Neck Surgery, University of Wisconsin Hospital and Clinics, Madison
  • 12La Paz University Hospital, Madrid, Spain
  • 13Patient representative, Brighton, East Sussex, United Kingdom
  • 14Johns Hopkins Hospitals, Baltimore, Maryland
  • 15Corneoplastic Unit, Queen Victoria Hospital NHS Foundation Trust, East Grinstead, United Kingdom
  • 16The Portland Hospital for Women and Children, London, United Kingdom
  • 17Facial Paralysis and Bell’s Palsy Foundation, Beverly Hills, California
  • 18Facial Nerve Center, Massachussetts Eye and Ear Infirmary, Boston
  • 19Department of Plastic Surgery, Helsinki University Hospital, Helsinki, Finland
  • 20Department of Plastic and Reconstructive Surgery, Kyorin University School of Medicine, Tokyo, Japan
  • 21Global Patients for Patient Safety, WHO Advisory Group, Mexico City, Mexico
  • 22California State Polytechnic University, Los Angeles
  • 23University College London, London, United Kingdom
  • 24The Royal Free Hospital, London, United Kingdom
  • 25Great Ormond Street Hospital, London, United Kingdom
JAMA Facial Plast Surg. 2019;21(5):351-358. doi:10.1001/jamafacial.2019.0224
Key Points

Question  How may consensus be reached in developing outcome measurement tools for evaluating the quality of care provided to pediatric patients with facial palsy?

Findings  In this study involving 21 health care professionals, researchers, and patient representatives, a standard set of outcome measurements was established, including patient-, clinician-, and patient proxy–reported clinimetric and psychometric tools deemed essential to determining the outcomes most important to children with facial palsy.

Meaning  Comprehensive outcome measurement is considered essential to evaluating different interventions, facilitating benchmarking of clinicians, and introducing value-based reimbursement strategies in the pediatric facial palsy field.


Importance  Standardization of outcome measurement using a patient-centered approach in pediatric facial palsy may help aid the advancement of clinical care in this population.

Objective  To develop a standardized outcome measurement set for pediatric patients with facial palsy through an international multidisciplinary group of health care professionals, researchers, and patients and patient representatives.

Design, Setting, and Participants  A working group of health care experts and patient representatives (n = 21), along with external reviewers, participated in the study. Seven teleconferences were conducted over a 9-month period between December 3, 2016, and September 23, 2017, under the guidance of the International Consortium for Health Outcomes Measurement, each followed with a 2-round Delphi process to develop consensus. This process defined the scope, outcome domains, measurement tools, time points for measurements, and case-mix variables deemed essential to a standardized outcome measurement set. Each teleconference was informed by a comprehensive review of literature and through communication with patient advisory groups. Literature review of PubMed was conducted for research published between January 1, 1981, and November 30, 2016.

Main Outcomes and Measures  The study aim was to develop the outcomes and measures relevant to children with facial palsy as opposed to studying the effect of a particular intervention.

Results  The 21 members of the working group included pediatric facial palsy experts from 9 countries. The literature review identified 1628 papers, of which 395 (24.3%) were screened and 83 (5.1%) were included for qualitative evaluation. A standard set of outcome measurements was designed by the working group to allow the recording of outcomes after all forms of surgical and nonsurgical facial palsy treatments among pediatric patients of all ages. Unilateral or bilateral, congenital or acquired, permanent or temporary, and single-territory or multiterritory facial palsy can be evaluated using this standard set. Functional, appearance, psychosocial, and administrative outcomes were selected for inclusion. Clinimetric and psychometric outcome measurement tools (clinician-, patient-, and patient proxy–reported) and time points for measuring patient outcomes were established. Eighty-six independent reviews of the standard set were completed, and 34 (85%) of the 40 patients and patient representatives and 44 (96%) of the 46 health care professionals who participated in the reviews agreed that the standard set would capture the outcomes that matter most to children with facial palsy.

Conclusions and Relevance  This international collaborative study produced a free standardized set of outcome measures for evaluating the quality of care provided to pediatric patients with facial palsy, allowing benchmarking of clinicians, comparison of treatment pathways, and introduction of value-based reimbursement strategies in the field of pediatric facial palsy.

Level of Evidence  NA.