Abstract

Abstract Aim To identify and evaluate the methodological quality of the quality of life (QoL) instruments used for patients with acute or chronic pancreatitis. Method Prospective studies that evaluated QoL in acute or chronic pancreatitis were identified from systematic review of MEDLINE, EMBASE, and Web of Science until 5th August 2021 (PROSPERO: CRD42021274743). Characteristics of QoL instruments were extracted, and their methodological quality assessed using COSMIN guidelines and GRADE approach. A narrative synthesis was conducted, with recommendations for instrument use based on COSMIN criteria regarding internal consistency and content validity (evaluated according to WHO QoL domains: physical health, psychological health, social relationships, level of independence, environment, and personal values). Results From 3850 records screened, 43 QoL instruments were identified across 131 studies included, involving 20,331 patients. The majority (69.8%, n = 30) were designed to assess general health related QoL, with 7 (16.3%) specific to abdominal pathologies, and 6 (14.0%) specific to chronic pancreatitis. Approximately half of the instruments (51.1%, n = 22) demonstrated sufficient content validity, incorporating items in ≥3 WHO QoL domains. However, only a minority of instruments incorporated public and patient involvement (34.8%, n = 15) or had undergone validation (22.3%, n = 10). Only the “Gastrointestinal Quality of Life Index” met the criteria to be recommended for use based on COSMIN methodological assessment. Conclusions There is significant heterogeneity in instruments used to assess QoL after pancreatitis, with almost all studies incorporating instruments with either insufficient methodological quality or construct validity. Robust, validated, and relevant instruments are needed to better understand and determine appropriate interventions to improve QoL for these patients.

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