Psychometric properties of patient-related outcome measures used for patients surviving a pulmonary embolism: A systematic review

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BACKGROUND: Patients who survive a pulmonary embolism (PE) often suffer several negative long-term physical and mental consequences, limiting their ability to stay physically- and socially active ultimately deteriorating their quality of life. Patients with PE therefore need evidence-based rehabilitation, targeting what is important to each individual patient. Valid and reliable patient-reported outcome measures (PROMs) are crucial to help clinicians plan and track rehabilitation outcomes in a reliable manner. PURPOSE: A systematic review to generate an overview over psychometric properties (reliability, validity, responsiveness, floor/ceiling effect and accessibility) of 34 PROMs used to assess PE, identified in a previous review by the research group. METHODS: A literature search was performed in PUBMED, CINAHL and EMBASE from inception to September 2024 and included psychometric studies of 34 specific PROMs. The evidence for each psychometric property was evaluated according to the COSMIN criteria for good measurement properties and graded according to the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) approach for systematic reviews. Methodological quality was assessed using the COSMIN Risk of Bias checklist for PROMs. RESULTS: The literature search yielded 3.801 records after removal of duplicates; 3.778 records were excluded based on title and abstract and further 10 articles were excluded during full-text reading leaving 13 articles evaluating the psychometric properties of PROMs. The Pulmonary Embolism Quality of life Questionnaire (PEmb-QoL) was assessed in 10 studies, showing very good internal consistency, reliability, criterion validity, construct validity, responsiveness and floor/ceiling effects. Structural validity for the PEmb-QoL was considered inadequate. One study found moderate evidence for the EQ-5D-5l showing adequate convergent construct validity. EQ-5D-5L also showed very good divergent construct validity, as well as good floor/ceiling effects and acceptability but inadequate structural validity. Low evidence for Perception of anticoagulation treatment questionnaire (PACT-Q) showed very good construct validity and internal consistency as well as adequate structural validity. Structural validity for the PACT-Q was acceptable, while content validity was doubtful and poor floor/ceiling effects. Finally moderate to high evidence for the Post-VTE functional status scale (PVFS) showing very good construct validity but inadequate structural validity and doubtful content validity. CONCLUSION: Some aspects of psychometric properties has been assessed in four out of the 34 PROMs used to assess patients with PE. Future studies should strive towards assessing all psychometric properties of PROMs used both clinically and in research. IMPLICATIONS: The results from this review put the reliability of tracking patients with PE into question, possibly skewing results from previous studies and more importantly showing an incomplete picture of rehabilitation following PE.

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