Asking questions can help: development and preliminary evaluation of a question prompt list for patients living with Heart Failure

Abstract

Abstract Funding Acknowledgements Type of funding sources: None. Background Discussing disease trajectories with patients living with chronic illnesses is recommended in guidelines worldwide and Heart Failure [HF] is no different. Discussions are centered around day-to-day disease management and less on illness trajectory including prognosis, symptoms, treatment options, preferences, and advanced care planning. Lack of open communication is common leading to prolonged suffering and unnecessary admissions [1] and can be improved when patients are able to initiate discussions, ask questions that are of concern to them, and engage in healthcare decision making [2,3]. A range of approaches have been employed to promote patient participation and empowerment. One such approach is the use of Question Prompt Lists [QPL]. Studies show that QPLs are linked to more questions asked, increased satisfaction, and reduced unmet information needs [3,4]. Despite this, they are less commonly used in non-oncology contexts and not available in Lebanon. Health system differences and cultural factors may influence content and impact of QPLs and as such cross-cultural adaptation is essential [5]. As the need for disclosure can vary among cultures, examining QPLs through an anthropological lens is imperative. Purpose To develop a culturally sensitive QPL designed to improve communication about HF illness trajectory. Methods A review of literature on HF QPLs was done. To address cultural and country specific needs, studies on HF from Lebanon and the Middle East were reviewed. This comprised the initial draft of a QPL that included context specific challenges and concerns. A Delphi survey inviting an interdisciplinary team of healthcare providers caring for HF patients was used to seek expert consensus regarding the draft. Sixteen experts rated each question for relevance, using a Likert scale from 0 to 4, clarity, and need to rephrase and suggested additional questions. Ratings were analyzed to determine the level of consensus. Questions that received less than 80% favorable answers [Very Relevant/Relevant and/or more than 20% indicated lack of clarity or the need to rephrase] were discussed in the second round of Delphi. Experts met and reviewed the comments provided on some questions and questions that were rated unfavorably, suggested for deletion, as well as those added by the panelists. Clarity of questions and suggestions for wording improvements was ensured. Results During the second round of Delphi, 12 questions were rephrased, one was dropped, and one was added. A final QPL of 42 questions and 6 categories was reached. Conclusion This is the first step of more research work that will aim at developing Arabic QPLs in the Middle East. The immediate next step would be repeating the Survey with patients, caregivers, and HF providers. Data will be analyzed using central tendency and levels of dispersion to assess consensus. The final QPLs will be translated to Arabic, culturally validated, and pilot tested in Lebanon.