Development of a questionnaire investigating the physical and psychological well-being and need for rehabilitative strategies in patients with pulmonary embolism

TL;DR

This paper introduces a new questionnaire to assess the physical and psychological well-being of patients with pulmonary embolism and their need for rehabilitation.

Contribution

The paper presents a novel questionnaire developed using ISO-QOL guidelines to evaluate PE patients' well-being and rehabilitation needs.

Findings

The questionnaire achieved a 72% response rate from 82 Danish PE patients.

Most patients did not feel safe about being discharged, and few received physical therapy or psychological support.

Abstract

Quantitative questionnaires can provide a deeper understanding of the health-related physical and psychological well-being in patients who have experienced a pulmonary embolism (PE). This paper describes the development of a questionnaire aiming to assess physical and psychological well-being and the need for rehabilitative strategies among patients diagnosed with PE.

The International Society for Quality-of-Life Research (ISO-QOL) recommendations for patient-reported outcomes were used. Conceptualization was conducted through literature review and expert interviews, followed by operationalization where items (questions) were constructed. To test content validity, the questionnaire was reviewed by experts and a series of cognitive interviews were performed. Finally, the questionnaire was distributed digitally to 82 randomly selected patients with PE in Denmark.

The questionnaire reached a response rate of 72%. The median age of responders was 71.5 years [inter quartile range: 64.2; 77.0], with 51.9% being female. Most patients did not feel safe about being discharged, with only 9.3% responding that they felt safe to some or a high degree. Approximately 15% were offered physical therapy, 7.9% were offered educational activities addressing psychological reactions, and 3.9% received psychological support.

The questionnaire showed good content validity and a high response rate. The results from the questionnaire have the potential to increase focus and awareness of the potential clinical and social impact of PE. It will facilitate optimized medical interventions and guide physicians in providing appropriate follow-up care for patients with PE.

The online version contains supplementary material available at 10.1186/s41687-025-00933-x.

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