Health literacy in patients with pulmonary embolism: development and validation of the HeLP (Health Literacy in Pulmonary Embolism)-Questionnaire

Background: Pulmonary embolism (PE) is a common cardiovascular disease and health literacy is necessary to deal with its consequences after the acute event. The aim of this study was to develop and validate a new questionnaire to measure PE-specific health literacy. Methods: A mixed-methods design with qualitative and quantitative elements was used in the development process. A literature review about health literacy concepts and instruments and interviews with patients with PE and clinicians were conducted. Quantitative analyses included factor analyses, item response theory with a graded partial credit model, and reliability analyses in different test and validation samples. Furthermore, convergent and known-groups validity and responsiveness were assessed. Results: The qualitative results supported a concept of PE-related health literacy with four main topics: dealing with PE-related health information, disease management, health-related selfcare, and social support. An initial item pool of 91 items was developed. Further interviews and an online survey with patients with PE (n = 1,013) were used to reduce the number of items and to confirm structural validity. Confirmatory factor analyses in the final evaluation study with patients with PE (n = 238) indicated a good model fit of the four-factor structure. The Health Literacy in Pulmonary Embolism (HeLP)-Questionnaire showed good reliability (Cronbach’s alpha: 0.82 to 0.90). All four subscales were responsive toward receiving a brochure with PE-related health information. Conclusion: The newly developed German HeLP Questionnaire comprises 23 items in four domains and showed good psychometric properties. Further evaluation of the questionnaire in different samples of patients with PE is needed

Table_1_On the need for narratives in patient information: Differentiating types and functions of narratives from pulmonary embolism patients' point of view.pdf

The inclusion of narratives in evidence-based patient information is a heavily discussed topic in literature. Narratives elicit intense engagement and emotional insights, but may also cause unintended persuasion effects. There is mixed evidence that adding narratives to non-narrative factual patient information is valuable for patients. In addition, providing patients with narratives about the outcome of treatments has been found to bias treatment decisions, in line with the direction implied by the narratives. This may counteract informed decision making of patients. However, narratives about the process of a treatment and personal experiences with treatments may support the well-being of patients in tertiary prevention. In order to investigate patients' views on narratives and their function in patient information, we conducted 26 semi-structured qualitative interviews with pulmonary embolism patients. Answers were coded using thematic analysis. Results show that patients are especially interested in experience and process narratives when combined with evidence-based patient information. We identified four main functions of experience and process narratives that patients ascribe to these narratives: (1) motivating self-reflection and reflection on the recovery process, (2) reducing the feeling of loneliness, (3) reducing emotional distress, and (4) inspiring mindful mastery.</p