Daniel P Butler1, Alethse De la Torre2, Gregory H Borschel3, Tessa A Hadlock4, Carien Beurskens5, Kathleen Bogart6, Alexander Cárdenas Mejía7, Christopher Coombs8, Jocelyne Copeland9, Jacqueline Diels10,11, Teresa González-Otero12, Louise Graham13, Lisa Ishii14, Raman Malhotra15, Adelaida Martinez16, Lisa McKinley17, Mara W Robinson18, Sinikka Suominen19, Akihiko Takushima20, Evangelina Vazquez Curiel21, Faye L Wachs22, Adriaan O Grobbelaar23,24,25. 1. Department of Plastic and Reconstructive Surgery, Great Ormond Street Hospital, London, United Kingdom. 2. Director of Standardisation and Latin America, International Consortium for Health Outcomes Measurement, Mexico City, Mexico. 3. Division of Plastic and Reconstructive Surgery, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada. 4. Division of Facial Plastic and Reconstructive Surgery, Harvard Medical School, Boston, Massachusetts. 5. Section of Physical Therapy, Department of Orthopedics, Radboud University Medical Center, Nijmegen, the Netherlands. 6. Oregon State University, Corvallis. 7. Division of Plastic and Reconstructive Surgery, Hospital General Dr Manuel Gea Gonzalez, Postgraduate Division, Universidad Nacional Autonoma de Mexico, Mexico City, Mexico. 8. Department of Plastic and Maxillofacial Surgery, Royal Children's Hospital, Melbourne, Victoria, Australia. 9. The Hospital for Sick Children, Toronto, Ontario, Canada. 10. Facial Retraining LLC, Madison, Wisconsin. 11. Facial Nerve Clinic, Division of Otolaryngology-Head and Neck Surgery, University of Wisconsin Hospital and Clinics, Madison. 12. La Paz University Hospital, Madrid, Spain. 13. Patient representative, Brighton, East Sussex, United Kingdom. 14. Johns Hopkins Hospitals, Baltimore, Maryland. 15. Corneoplastic Unit, Queen Victoria Hospital NHS Foundation Trust, East Grinstead, United Kingdom. 16. The Portland Hospital for Women and Children, London, United Kingdom. 17. Facial Paralysis and Bell's Palsy Foundation, Beverly Hills, California. 18. Facial Nerve Center, Massachussetts Eye and Ear Infirmary, Boston. 19. Department of Plastic Surgery, Helsinki University Hospital, Helsinki, Finland. 20. Department of Plastic and Reconstructive Surgery, Kyorin University School of Medicine, Tokyo, Japan. 21. Global Patients for Patient Safety, WHO Advisory Group, Mexico City, Mexico. 22. California State Polytechnic University, Los Angeles. 23. University College London, London, United Kingdom. 24. The Royal Free Hospital, London, United Kingdom. 25. Great Ormond Street Hospital, London, United Kingdom.
Abstract
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.
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.
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