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.

Evidence-based health information about pulmonary embolism: Assessing the quality, usability and readability of online and offline patient information.

Objective: Pulmonary embolism (PE) is the third most common cardiovascular disease worldwide. However, public awareness is considerably lower than for myocardial infarction or stroke. Patients suffering from PE complain about the lack of (understandable) information and express high informational needs. To uncover if reliable information is indeed scarce, this study evaluates the quantity and quality of existing patient information for tertiary prevention using an evidence-based health information paradigm. Methods: We conducted a quantitative content analysis (n = 21 patient information brochures; n = 67 websites) evaluating content categories addressed, methodical quality, usability, and readability. Results: Results show that there is not enough patient information material focusing on PE as a main topic. Existing patient information material is mostly incomplete, difficult to understand, and low in actionability as well as readability. Conclusion: Our systematic analysis reveals the need for more high-quality patient information on PE as part of effective tertiary prevention. Innovation: This is the first review analyzing content, methodical quality, readability, and usability of patient information on PE. The findings of this analysis are guiding the development of an innovative, evidence-based patient information on PE aiming to support patients' informational needs and their self-care behavior.