Chapter 6 134 Construction of the question prompt list The Center of Expertise Palliative Care of Leiden University Medical Center constructed a Dutch version of Clayton et al.’s question prompt list (QPL) on palliative care in 2013. In teammeetings with the palliative care consultants, it was concluded that the QPL needed practical, cultural and organizational adaptations. The QPL consisted of 35 topics and 40 questions in 6 categories. The QPL became part of a conversation guide, the Leiden Guide on Palliative Care, which also included the Utrecht Symptom Diary for assessing symptom burden on symptom assessment scales. 1. Practical: a. Palliative care consultants estimated that many of their patients would lack energy and time to view all questions in Clayton et al.’s QPL. Therefore, they selected the most important questions and formulated a topic prompt list consisting of all relevant topics, which preceded the list with questions. Questions on “Spiritual and Cultural support” were left out. b. Questions about symptoms were specified for each symptom, because these would support the symptom assessment scales that the palliative care consultants also used as part of their consultations. c. Patients often asked questions about the truths and falsehoods about morphine and morphine-like medication, thus questions about this topic were made more specific. d. Questions for family were excluded in this first version, because palliative care consultants focused primarily on the patient. e. The palliative care consultation team already used a folder containing information sources (flyers, leaflets and websites), which they could hand out to patients and family during consultations. f. Contact details of the palliative care consultation team were not a part of the QPL because they had their own business card to hand out. 2. Cultural: a. Some questions were formulated more directly, which many Dutch people are used to. b. Personal autonomy is a highly respected principle in the Netherlands; some questions were therefore formulated in such way that patients can maintain self-control. 3. Organizational: a. In the Netherlands, palliative care consultants are often consulted to get their advice, and do not have the role of co-practitioners. They therefore do not actively participate in decisions about the treatment of the patient ’s disease. b. The aim of a palliative care consultation is to empower patients and family and to improve selfmanagement. The formulation of some questions in Clayton et al.’s QPL was changed into a more active form, so that the patient can ask what he or she can do or organize care. c. Palliative care is covered by Dutch insurance companies, so questions about financial support were omitted. Adaptations made to the question prompt list a T he original question in Clayton et al. is: “If I have symptoms, what can be done to improve them? (e.g. pain or discomfort, constipation, shortness of breath, nausea or feeling sick, lack of appetite, tiredness, dry mouth)”. The Center of Expertise Palliative Care experienced that patients would rather have the question divided into one question for each symptom. b The original questions in Clayton et al. are: “Can you help to control my pain?” and “Can you help to control my other symptoms?”. See 2a: this question was formulated more directly. c The original questions in Clayton et al. are: “Can you help me to control my other symptoms?” and “What are the different options available for controlling my pain?” See 2a: this question was formulated more directly. d The original question in Clayton et al. is: “How can I make the most of my life?” See 1b: the relation to symptoms was added to the formulation of the question. e The original question in Clayton et al. is: “What can I expect to be able to do?” f The original questions in Clayton et al. are: “What information is available about palliative care and my illness?” and “Are books, videos or pamphlets available?” See 2b and 3b: these questions were formulated as one question to support self-management of patients and family. g The original question in Clayton et al. is: “Can you help to control my pain?” See 2b and 3b: this question was re-formulated to support self-management of patients and family. h The original question in Clayton et al. is: “What are the different options available for controlling my pain?” See 2b and 3b: this question was re-formulated to support self-management of patients and family.
RkJQdWJsaXNoZXIy MTk4NDMw