Assessing the need for a question prompt list that encourages end-of-life discussions between patients with advanced cancer and their physicians: A focus group interview study

Objective Early integration of palliative and cancer care improves the quality of life and is facilitated by discussions about the end of life after cessation of active cancer treatment between patients with advanced cancer and their physicians. However, both patients and physicians find end-of-life discussions challenging. The aim of this study was to assess the need for a question prompt list (QPL) that encourages end-of-life discussions between patients with advanced cancer and their physicians. Methods Focus group interviews (FGIs) were conducted with 18 participants comprising 5 pancreatic cancer patients, 3 family caregivers, 4 bereaved family members, and 6 physicians. Three themes were discussed: question items that should be included in the QPL that encourages end-of-life discussions with patients, family caregivers, and physicians after cessation of active cancer treatment; when the QPL should be provided; and who should provide the QPL. Each interview was audio-recorded, and content analysis was performed. Results The following 9 categories, with 57 question items, emerged from the FGIs: (1) preparing for the end of life, (2) treatment decision-making, (3) current and future quality of life, (4) current and future symptom management, (5) information on the transition to palliative care services, (6) coping with cancer, (7) caregivers’ role, (8) psychological care, and (9) continuity of cancer care. Participants felt that the physician in charge of the patient's care and other medical staff should provide the QPL early during active cancer treatment. Significance of results Data were collected to develop a QPL that encourages end-of-life discussions between patients with advanced cancer and their physicians.

Doctors’ Attitudes to Patient Question Asking, Patient-Generated Question Lists, and Question Prompt Lists: A Qualitative Study

Background Participation by patients in their own health care improves quality and safety. Question prompt lists (QPLs) can improve participation, particularly with doctors’ endorsement. Few data have explored doctors’ attitudes on these tools. We sought the experiences and attitudes of general practitioners and other specialists toward patient question asking and QPLs in their practice. Methods In-depth, semistructured interviews and focus groups with purposively selected Australian doctors were conducted. Interview guides were used to explore doctors’ experiences of patient question asking, patients’ lists, and a sample QPL created using an Australian government-funded online tool, “Question Builder.” Recordings were transcribed verbatim and data analyzed thematically using the method by Braun and Clarke. Results Focus groups with 3 to 9 participants and a further 17 individual interviews were conducted. There was a total of 40 participants, 23 general practitioners and 17 other specialists (e.g., physicians, surgeons, pediatricians). Our analysis was summarized into several themes. 1) The doctors expected, encouraged, and had significant experience of patient question asking and patients’ lists. They described many barriers for patients and their efforts to ensure patients had the information they needed. 2) The doctors felt responsible for creating an environment conducive to patient question asking, the delivery of answers, having strategies for unanswered questions, and balancing the agendas of both parties in the consultation. 3) Structured QPLs that prepared patients and facilitated the consultation agenda were viewed positively. The degree of time pressures participating doctors experienced in their context had a strong influence on how they responded to the sample QPL. Conclusion Doctors in this study expected patients to ask questions and endorsed the benefits of QPLs. However, there were more diverse views about the feasibility of implementing them in practice. Designing QPLs to fit within current workflows, via more succinct and tailored designs, may result in wider doctor acceptance and endorsement, hence maximizing the benefits of QPLs with improved patient participation and patient safety.

Last Year of Life Study-Cologne (LYOL-C) (Part II): study protocol of a prospective interventional mixed-methods study in acute hospitals to analyse the implementation of a trigger question and patient question prompt sheets to optimise patient-centred care

IntroductionThe Last Year of Life Study-Cologne Part I (LYOL-C I) has identified general hospital units as the most important checkpoints for transitions in the last year of life of patients. Yet, satisfaction with hospitals, as reported by bereaved relatives, is the lowest of all health service providers. Thus, the LYOL-C Part II (LYOL-C II) focuses on optimising patient-centred care in acute hospitals for patients identified to be in their last year of life. LYOL-C II aims to test an intervention for hospitals by using a two-sided (healthcare professionals (HCPs) and patients) trigger question-based intervention to ‘shake’ the system in a minimally invasive manner.Methods and analysisProspective interventional mixed-methods study following a two-phase approach: phase I, individual interviews with HCPs and patient representatives to design the intervention to maximise ease of implementation and phase II, exploratory study with two arms and a prepost design with patients in their last year of life. The intervention will consist of the Surprise Question and the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE) for HCPs to identify patients and provide patient-centred care, plus question prompt sheets for patients, encouraging them to initiate discussions with their HCPs. Data on transitions, changes in therapy, quality of care, palliative care integration and death of patients will be analysed. Furthermore, a staff survey (pre/post) and guided interviews with staff, patients and relatives (post) will be conducted. Finally, a formative socioeconomic impact assessment to provide evidence regarding the sustainability of the intervention will be performed.Ethics and disseminationThe study was approved by the Ethics Committee of the Faculty of Medicine of the University of Cologne (#20-1431). Results will be published in peer-reviewed journals and presented at national and international conferences.Trial registration numberDRKS00022378.

A qualitative study on patients’ and their support persons’ preferences for receiving one longer consultation or two shorter consultations when being informed about allogeneic hematopoietic stem cell transplantation

Background Allogeneic hematopoietic stem cell transplantation (alloHSCT) is the only potentially curative treatment option for many patients with hematological disorders but it includes a significant risk of mortality and long-term morbidity. Many patients and their support persons feel overwhelmed when being informed about alloHSCT and may benefit from improvements in consultation style and timing. Aims To explore, qualitatively, in a sample of hematological cancer patients and their support persons, their preferences for receiving one longer consultation or two shorter consultations when being informed about alloHSCT. Participants’ perceptions of when and how different consultation styles should be offered were also examined. Methods Semi-structured face-to-face and phone interviews were conducted. A purposeful sampling frame was used. Data were analysed using framework analysis. Results Twenty patients and 13 support persons were recruited (consent rate: 96%, response rate: 91%). Most patients (60%) and support persons (62%) preferred two shorter consultations over one longer consultation. This helped them digest and recall the information provided, remember questions they had, involve significant others and search for additional information. Patients would have liked to be offered paper and pen to take notes, take a break after 30 min and have their understanding checked at the end of the first consultation, e.g. using question prompt lists. Some patients and support persons preferred both consultations to happen on the same day to reduce waiting times as well as travel times and costs. Others preferred having a few days in-between both consultations to better help them prepare the second consultation. Participants reported varying preferences for different consultation styles depending on personal and disease-related characteristics, such as age, health literacy level and previous treatment. Conclusion To our knowledge, this is the first qualitative study to explore patients’ and their support persons’ preferences for having one longer consultation or two shorter consultations when being informed about alloHSCT. Receiving two shorter consultations may help patients process and recall the information provided and more actively involve their support persons. Clinicians should consider offering patients and their support persons to take a break after 30 min, provide paper and pen as well as question prompt lists.

Impact of using question prompt list on shared decision making in the cancer patient: A systematic review

Background & Aim: Shared decision making belongs to the continuum between the two decision-making paradigms of the paternalistic perspective and the client’s complete independence. Various interventions, including the Question Prompt List have been developed to facilitate patients’ participation in counseling. This study aims to investigate the effects of question prompt list on shared decision making among cancer patients. Methods & Materials: For this study, the researchers performed a systematic review of the manuscripts available in Embase, PubMed, Scopus, and Web of Science databases which were published until January 2021. And then, the eligible studies investigating the effect of question prompt list on shared decision making were included in the study. The quality of the studies was assessed using the Cochrane risk of bias tool. Results: Two eligible papers were included in the study, and it was reported that question prompt list was provided before the patients’ consultation with the physician. Both studies have used OPTION 12 to measure shared decision making. The two articles reported that patient communication aid and question prompt list had no significant effect on improving shared decision making through OPTION 12. Conclusion: The findings of this systematic review could not confirm the impact of using question prompt list on shared decision making. more preliminary studies are needed to answer the question expressed by this systematic review study.