Heather L Thompson1, Ann Blanton2, Barbara Franklin2, Vanessa L Merker2, Kevin H Franck2, D Bradley Welling2. 1. From the Department of Communication Sciences and Disorders (H.L.T.), California State University, Sacramento; Department of Communication Disorders and Sciences (A.B.), SUNY Cortland, NY; REiNS Patient Representative for NF2 (B.F.); Department of Neurology and Cancer Center, Massachusetts General Hospital, Boston (V.L.M.); Center for Healthcare Organization and Implementation Research (CHOIR) (V.L.M.), Edith Nourse Rogers Memorial Veterans Hospital, Bedford; and Departments of Audiology (K.H.F.) and Otolaryngology and Head and Neck Surgery (D.B.W.), Massachusetts Eye and Ear Hospital and Massachusetts General Hospital, Boston. heather.thompson@csus.edu. 2. From the Department of Communication Sciences and Disorders (H.L.T.), California State University, Sacramento; Department of Communication Disorders and Sciences (A.B.), SUNY Cortland, NY; REiNS Patient Representative for NF2 (B.F.); Department of Neurology and Cancer Center, Massachusetts General Hospital, Boston (V.L.M.); Center for Healthcare Organization and Implementation Research (CHOIR) (V.L.M.), Edith Nourse Rogers Memorial Veterans Hospital, Bedford; and Departments of Audiology (K.H.F.) and Otolaryngology and Head and Neck Surgery (D.B.W.), Massachusetts Eye and Ear Hospital and Massachusetts General Hospital, Boston.
Abstract
OBJECTIVE: To systematically evaluate published patient-reported outcome measures for the assessment of hearing function and hearing-related quality of life (QoL) and recommend measures selected by the Response Evaluation in Neurofibromatosis and Schwannomatosis International Collaboration (REiNS) as endpoints for clinical trials in neurofibromatosis type 2 (NF2). METHODS: The REiNS Patient-Reported Outcomes Working Group systematically evaluated published patient-reported outcome measures of (1) hearing function and (2) hearing-related QoL for individuals with hearing loss of various etiologies using previously published REiNS rating procedures. Ten measures of hearing functioning and 11 measures of hearing-related QoL were reviewed. Measures were numerically scored and compared primarily on their participant characteristics (including participant age range and availability of normative data), item content, psychometric properties, and feasibility for use in clinical trials. RESULTS: The Self-Assessment of Communication and the Self-Assessment of Communication-Adolescent were identified as most useful for adult and pediatric populations with NF2, respectively, for the measurement of both hearing function and hearing-related QoL. Measures were selected for their strengths in participant characteristics, item content, psychometric properties, and feasibility for use in clinical trials. CONCLUSIONS: REiNS recommends the Self-Assessment of Communication adult and adolescent forms for the assessment of patient-reported hearing function and hearing-related QoL for NF2 clinical trials. Further work is needed to demonstrate the utility of these measures in evaluating pharmacologic or behavioral interventions.
OBJECTIVE: To systematically evaluate published patient-reported outcome measures for the assessment of hearing function and hearing-related quality of life (QoL) and recommend measures selected by the Response Evaluation in Neurofibromatosis and Schwannomatosis International Collaboration (REiNS) as endpoints for clinical trials in neurofibromatosis type 2 (NF2). METHODS: The REiNS Patient-Reported Outcomes Working Group systematically evaluated published patient-reported outcome measures of (1) hearing function and (2) hearing-related QoL for individuals with hearing loss of various etiologies using previously published REiNS rating procedures. Ten measures of hearing functioning and 11 measures of hearing-related QoL were reviewed. Measures were numerically scored and compared primarily on their participant characteristics (including participant age range and availability of normative data), item content, psychometric properties, and feasibility for use in clinical trials. RESULTS: The Self-Assessment of Communication and the Self-Assessment of Communication-Adolescent were identified as most useful for adult and pediatric populations with NF2, respectively, for the measurement of both hearing function and hearing-related QoL. Measures were selected for their strengths in participant characteristics, item content, psychometric properties, and feasibility for use in clinical trials. CONCLUSIONS: REiNS recommends the Self-Assessment of Communication adult and adolescent forms for the assessment of patient-reported hearing function and hearing-related QoL for NF2 clinical trials. Further work is needed to demonstrate the utility of these measures in evaluating pharmacologic or behavioral interventions.
Authors: H Jia; M M El El Sayed; M Smail; I Mosnier; H Wu; O Sterkers; M Kalamarides; D Bernardeschi Journal: Neurochirurgie Date: 2018-10-09 Impact factor: 1.553