Optimizing of a question prompt list to improve communication about the heart failure trajectory in patients, families, and health care professionals

Discussing the Heart Failure (HF) trajectory with patients and their families is recommended in clinical guidelines worldwide [1‐3]. Health care professionals working in HF care should openly discuss any issue related to the illness trajectory, including prognosis, symptom management, options and preferences for palliation and end-of-life care as well as deactivation of devices with patients and their families. By doing so, the professionals help them to be prepared to live with a life-limiting illness and for the last phase of life [4, 5]. However, this open approach to communication about the HF trajectory is not widely implemented in clinical practice. Conversations in HF care mostly focus on disease management and less on patient preferences and goals for future care [6]. Discussing end-of-life care often becomes “the elephant in the room”, i.e. a topic which is rarely discussed as the patient waits for the professional to initiate the discussion, while professionals wait for a cue or a question from the patient to start such conversations [6]. At the same time, the amount of information about the HF trajectory wanted by the patient and the family member varies. Therefore, it is important for health care professionals to tailor their information according to the needs and preferences of each individual patient and family member [7, 8].

One way to improve communication about sensitive topics in clinical practice is by using a communication tool [9]. A tool that previously has been used in other chronic illnesses is a Question Prompt List (QPL): a prepared list of questions which is provided to the patient and a family member which enables them to identify those questions they wish to ask the health care professional [10, 11]. Studies involving QPLs report that patients and family members find such a tool useful to frame questions and prepare them for clinical visits and that they become more involved in the care and the decision-making process [10, 12] .

Previous research on QPLs are mostly from cancer care where such a tool has helped cancer patients and their families to give cues that they wished to discuss prognosis and end-of-life care with health care professionals [13]. Specially for cardiac patients, local or national information material is sometimes available, for example the “Difficult Conversations guide”, developed by the British Heart Foundation which supports health care professionals to talk about the HF trajectory and end-of-life care in a sensitive and supportive way with patients and their families [14]. A Dutch research project has recently identified characteristics of a tool to assess palliative care needs in HF patients and family members, and one important part of that tool is to facilitate conversations about palliative care needs [15]. Another example is the website heartfailurematt​ers.​org, an educational tool provided by the Heart Failure Association of the European Society of Cardiology that has a specific section which intends to help patients and families to discuss living with HF and plan for the end-of-life [16]. In other areas, checklists have been developed to assess palliative care needs of patients and family members [17, 18] however, conversation guides and similar materials that help patients and families to initiate discussions about the HF trajectory are scarce.

Recently, our research group including researchers from Sweden and the Netherlands, developed a QPL with the aim of improving communication about the HF trajectory in HF care. The first version of the QPL was developed in a co-design process [19] in Sweden and later on, translated to Dutch. In the co-design process, the concepts “Ideas groups” and “Prototyping” were used as described in the Health Service Co-design toolkit [20]. Patients with HF, their family members and health care professionals (physicians and nurses) from palliative and HF care participated in two ideas groups. In the first ideas groups, the participants suggested the need for a communication tool to improve communication about the HF trajectory, in the second ideas groups, the first prototype of the QPL was made, and the participants suggested useful questions and wording that could be included in the list. Following the second ideas group, the QPL was further refined by the researchers, based on the suggestions from the participants and relevant literature [21]. Finally, the revised QPL was sent to the participants in the ideas groups for a final evaluation. The QPL contained 45 questions grouped into 5 sections: 1) Heart failure and its impact on daily life, 2) Help and support when the illness deteriorates, 3) End-of-life, 4) Other questions family members may want to discuss, and 5) Other questions for patients with a heart failure pacemaker or an implantable cardioverter defibrillator [22].

To ensure the QPL is connected to clinical practice and has the potential to be used in the “real world”, further testing among patients, family members and health care professionals is needed. Accordingly, we know from previous studies in cancer care that QPLs developed in one country might need to be adapted for other countries depending on differences in how cultures approach sensitive topics [9]. Also, as there might be discrepancies in health care systems as well as cultural factors that may influence the content of the QPL [23], it is appropriate to tailor the QPL culturally [9], and include samples from both Sweden and the Netherlands in the testing.

The aim of this study was to optimize a Question Prompt List which is designed to improve communication about the heart failure trajectory among patients, family members, and health care professionals.

This study describes the optimizing of a QPL to improve communication about the HF trajectory in HF care. The QPL was previously developed in a co-design process [19] together with the future users (patients/families and health care professionals) as it is known that for QPLs to impact communication positively, they need to be designed specifically for the intended population [27]. There is to our knowledge, no previous QPL developed for discussing the HF trajectory. In one study, Martinali et al. describe a checklist which aimed to prepare cardiac patients for a visit to the cardiologist [28]. The checklist included questions about medication, available treatments, risk factors and lifestyle, but few questions in that checklist were related to the HF trajectory. The QPL tested in our study focuses specifically on questions about the HF trajectory and end-of-life issues and is supposed to be used in discussions among patients, their families, and several health care professionals, not only by a cardiologist in physician- patient communication. Results from a systematic review in cancer care indicated that QPL is often one component of a complex intervention. When including a QPL it seems to increase patient participation, decrease psychological distress and improve recall of given information [23].

The QPL, designed for communication about the HF trajectory, has successfully been adapted into one Swedish version and one Dutch version. It includes questions that patients, their families, and health care professionals perceived as relevant to discuss with health care professionals about the HF trajectory. Overall, patients and family members were not worried about the content in the QPL and if used in accordance with patients’ and family members’ preferences, the QPL can help to improve communication about the heart failure trajectory. The QPL is ready to be used in clinical HF care in Sweden and the Netherlands. Further research is needed to examine the optimal way of delivery of the QPL into clinical practice and to examine how patients/family/professionals experience using the QPL in daily practice.