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

Abstract

IMPORTANCEStandardization 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 PARTICIPANTSA 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 MEASURESThe 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. RESULTSThe 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 RELEVANCEThis 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.

Systematic review of international Delphi surveys for core outcome set development: representation of international patients

“… 99 Some studies (n=14) excluded non-English-speaking participants, despite recruiting patients and representatives from many countries where English is not the first language. 8 13 18 19 21 22 25 36 55 56 59 60 69 79 …”

“…99 Some studies (n=14) excluded non-English-speaking participants, despite recruiting patients and representatives from many countries where English is not the first language. 8 Open access recruited both HCPs and patients. Patients were recruited in fewer numbers and were less likely to be international and especially from LMICs.…”

Contribution and safety of the side‐to‐end hypoglossal‐to‐facial transfer in multidisciplinary facial reanimation

“…The current treatment of patients with complex FP involves several specialists and should be performed in the context of a FP Unit 13 . There has been a paradigm shift in which there is no longer a single gold standard technique for the patient with complex FP, but a multidisciplinary approach in which a combination of reanimation techniques, eye surgery, static procedures, and specific physical therapy with Botulinum toxin injection leads to the best outcome 12,23 . In this study, a heterogeneous group of patients with FP caused by different etiologies with a wide duration range underwent an HFT combined with major and minor procedures.…”

Raising the Digital Profile of Facial Palsy: National Surveys of Patients’ and Clinicians’ Experiences of Changing UK Treatment Pathways and Views on the Future Role of Digital Technology

“…In addition, because such individuals may give up their original employment [ 57 ], this can lead to a significant long-term societal cost burden, especially if the condition was acquired in early life [ 58 ]. An international collaboration has recently been established, focusing on pediatric patients with FNP (using a patient-centered approach, similar to this study) with the aim of comparing FNP treatment pathways, standardizing outcome measurement, and developing value-based reimbursement strategies [ 59 ].…”