Non-specialist palliative care - question prompt list preparation 153 “Well, I would be hesitant to discuss sexuality and intimacy, for example, with these ladies.” (patient 1); however, no-one wanted to exclude the topic. We changed Sexuality and intimacy into Intimacy and sexuality to make the topic easier to discuss. Table 4. Input for improvement of question prompt list by patients, family and clinicians, transcribed consultations and Arthur et al.’s22 consensus list of prompt questions Content added to question prompt lista Source Subject 18 interviews with patients and family • Wishes for the last phase of life • Religion and view on life • Spiritual and psychological help • Treatment possibilities • Contact details for acute situations • Self-care for informal caregivers 17 interviews with clinicians • Relationships and family • (limitations on) hospitalizations • Contact persons in specific situations • Future scenarios 33 transcribed consultations • Independence • Psychological care Comparison with consensus list of prompt questions22,b • Questions about informal caregivers • Questions for informal caregivers Adjusted lay-out and wording of the question prompt list Source Subject Interviews, consultations, and grey literature • Shape of the document was changed from 5 A4 sheets to a 11-page printable booklet (A5) • Lay-out and order of topics and questions were revised • Wording was checked and improved according to Dutch level B1 according to the European Council: “Can understand the main points of clear standard input on familiar matters regularly encountered in work, school, leisure”23 • Cover page with instructions for patients and family was made more clear • Supplemental leaflet with advice for use and to overcome barriers for clinicians a Patients, family, patient/family advocates and clinicians preferred no adaptations to the content of the question prompt list. b Arthur et al.22 published a study in clinicians to list the most important prompt questions, which was used by our research group to compare if content should be added to our question prompt list. Emotional challenge of using the QPL Some clinicians indicated topics that might be emotionally challenging and should not be presented too early in the disease trajectory, meaning not to patients with advanced cancer who still undergo curative treatments. Most patients and family did not feel that using the QPL was more emotionally challenging than being confronted with the knowledge of having a potentially incurable disease. They mentioned that discussing the 7
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