The German version of the Pulmonary Embolism Quality of Life (PEmb-QoL) questionnaire: reliability, responsiveness and structural validity

PURPOSE: The Pulmonary Embolism Quality of Life (PEmb-QoL) questionnaire is the only existing disease-specific instrument for measuring quality of life after pulmonary embolism (PE). It includes six dimensions: frequency of complaints, limitations in activities of daily living, work-related problems, social limitations, intensity of complaints and emotional complaints. The present study aimed to determine the psychometric properties including responsiveness and structural validity of the German version. METHODS: The analysis used data from participants of the LEA cohort study at University Hospital Augsburg. The PEmb-QoL was administered via postal surveys 3, 6 and 12 months post-PE. Internal consistency and test–retest reliability were evaluated by calculating Cronbach’s alpha and intra-class correlation coefficients (ICC). Standardized response means (SRM) were calculated for investigating responsiveness. For evaluating the fit of the factor structure, confirmatory factor analysis (CFA) was conducted. RESULTS: Overall, we used data from 299 patients 3 months after PE. Cronbach’s alpha (0.87–0.97) and ICC (0.53–0.90) were in an acceptable to good range. SRM scores showed good responsiveness of all dimensions. CFA revealed the four-factor model including one general factor to have a good model fit. CONCLUSION: Despite existing floor effect, most standard criteria of reliability and validity were met and indications for appropriateness of the PEmb-QoL summary score could be found. Apart from some restrictions concerning the factor structure and the dimension of social limitations, our results support the use of the PEmb-QoL questionnaire for evaluating PE-specific quality of life. Future studies should seek replication in different samples to ensure generalizability of the findings. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11136-022-03120-3.