Assessing quality of life after pulmonary embolism: Comparing results from the PEmb‐QoL with semistructured interviews

BACKGROUND: The Pulmonary Embolism Quality of Life questionnaire (PEmb‐QoL) assesses quality of life (QoL) in patients with previous pulmonary embolism (PE). OBJECTIVE: Our aim was to assess the agreement between the PEmb‐QoL and interviews and to explore other QoL concerns in patients diagnosed with PE. METHODS: This mixed‐method study included interviews with 21 patients about QoL after PE, followed by the PEmb‐QoL questionnaire. In interviews, patients were asked about their lived experiences and impact of PE. Our analysis identified the frequency and severity of decreased QoL in qualitative interviews and compared with the PEmb‐QoL score. Excerpts that described the effect of PE on QoL in interview transcripts were transcoded to match the answers corresponding to the 1 to 6 numeric values for each question from the PEmb‐QoL using a predetermined matrix (eg, “constant” and “daily” = all of the time = value 1) and directly compared with responses on the PEmb‐QoL in the areas of emotional complaints and activities of daily living/social limitations. RESULTS: Interviews showed more functional impairment than predicted by PEmb‐QoL. For fear of recurrence, 86% of participants had disagreements between PEmb‐QoL scores and transcoded interview scores. We found 42% disagreement between reported descriptions of the inability to do or enjoy hobbies in interviews and the PEmb‐QoL score. CONCLUSION: Patient interviews showed discordances compared with a validated psychometric tool. To capture a more detailed and accurate picture of the effect of PE on QoL, providers and researchers should consider the addition of qualitative methods to assess outcomes.