Asking questions can help: development and preliminary evaluation of a question prompt list for palliative care patients

Abstract

Question prompt lists (QPLs) have been shown to be an inexpensive and effective communication tool for patients in oncology consultations. We aimed to develop and pilot a QPL for palliative care (PC) patients. In order to identify suitable questions for inclusion in the QPL, we conducted focus groups and individual interviews with 19 patients, 24 carers and 22 PC health professionals. A further 21 health professionals reviewed the draft document. The draft QPL was piloted in 23 patients. In total, 112 questions were identified and grouped into eight categories. All participants felt that the QPL, in booklet form, could be a useful tool. Out of 23 patients in the pilot study, 22 agreed that the QPL was helpful, contained useful questions, was easy to understand and would be useful in the future. State anxiety (STAI) decreased after receiving the booklet and seeing the doctor in 16 out of 19 patients (overall anxiety decreased by a median of 8, IQR 1 -13). Participants in the pilot study endorsed the inclusion of end-of-life issues in the QPL, despite some reservations expressed about this by health professionals in the individual interviews. We have identified a specific QPL that might facilitate useful dialogue between PC patients and their doctor. The QPL has strong support from patients, their carers and relevant health professionals.

A question prompt list for patients with advanced cancer in the final year of life: Development and cross-cultural evaluation

“…[13] QPLs have been developed for patients seeing medical oncologists, radiation oncologists or surgeons for the first time, [14,15] and patients and carers newly referred to palliative care. [16] No QPL has been developed for patients with advanced cancer outside the palliative care setting. Such patients newly face deterioration and eventual death, experiencing challenges in eliciting and adapting to information about prognosis and endof-life issues.…”

“…As they remain well enough to participate in Advance Care Planning (ACP), from authors. [14][15][16][21][22][23][24] Where possible, items were adapted from existing QPLs if they focussed on issues relevant for the target population and purpose of the QPL including; prognosis, treatment options and decisions with non-curative intent, end-of-life issues, ACP and supportive or palliative care services for the patient, carer or family.…”

Development of a question prompt sheet for cancer patients receiving outpatient palliative care.

“…14 Clayton et al developed a 20-page, 112-item QPS for palliative care patients by conducting focus groups and individual interviews in 19 patients, 24 caregivers, and 22 palliative care physicians, followed by a pilot study on 23 patients. 16 They found that participants perceived the QPS as useful in their communication with their doctors. We used this study as the basis for the development of our prompt sheet since it was thoroughly conducted with the participation of healthcare professionals, patients, and caregivers.…”

“…However, in the pilot study that followed the QPS development, patients and caregivers perceived those end-of-life questions as helpful in facilitating hitherto difficult discussions regarding the topic and readily endorsed them. 16 The expert panel consisted of members with great experience in caring for patients with advanced cancer and hence were well equipped to provide the most needed information for the development of the QPS (Table 1). When panel members have an in-depth knowledge of the topic under investigation, this greatly enhances content validity.…”

“…A thorough literature review on the development of a prompt sheet was conducted by the authors and an initial list of 119 questions was adapted from a previous study by Clayton et al and other studies. 13,14,16 A web-based survey was then developed with the adapted list of questions using Qualtrics online software (Qualtrics Labs, Inc., Provo, UT). Those who consented to participate in the study were provided with a link to the webbased questionnaire.…”