Registry Studies Use Inconsistent Methods to Account for Patients Lost to Follow-up, and Rates of Patients LTFU Are High

Abstract

Purpose To determine methods described in the literature to account for patients lost to follow-up (LTFU) in registry studies and whether rates of patient LTFU are within acceptable margins. Methods A scoping review, where a literature search is conducted for studies from 9 arthroscopy registries, was performed on EMBASE, MEDLINE, and the annual reports of each registry. Inclusion criteria included studies with information on patient-reported outcome measures and being based on 9 national registries identified. Exclusion criteria included review articles, conference abstracts, studies not based on registry data, and studies from regional, claims-based, or multicenter registries. Studies were then divided into categories based on method of LTFU analysis used. Results Thirty-six articles were identified for the final analysis. Categories for LTFU analysis included dropout analyses (n = 10), referencing validation studies (n = 12), contacting nonresponders (n = 4), and sensitivity analyses (n = 1). Referencing validation studies was the most common method (n = 12). Majority (n = 35) of the studies exceeded the recommended maximum rates for LTFU. Conclusions Registry studies use inconsistent methods to account for patient LTFU, and rates of patients LTFU are unacceptably high. Clinical Relevance The impact of patients LTFU in studies related to arthroscopic intervention is unknown. A universal method for accounting for patient follow-up is needed.

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“… 11 The latter 2 are stated as common challenges for all prospective studies such as registries-based observational studies, cohorts, and clinical trials. 12 , 13 , 14 , 15 , 16 , 17 …”