Assessment of symptom burden and information needs helps tailoring palliative care consultations 135 i The 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)”. This question was often asked in the context of decreased appetite during consultations of the Center of Expertise Palliative Care. See 2b and 3b: these questions were formulated as one question to support self-management of patients and family. j The 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)”. This question was often asked in the context of fatigue during consultations of the Center of Expertise Palliative Care. See 2b and 3b: these questions were formulated as one question to support self-management of patients and family. k This question occurred in an older version of this QPL combining questions 4 and 5. l This question was added based on experience from palliative care consultants. Dutch patients often wish to stay independent and autonomous as long as possible, and often express this in questions about their physical fitness. m The original questions in Clayton et al. are: “How can I deal with depression if this occurs?” and “Is there someone I can talk to about my fears and concerns?” See 1a: these questions were combined into one question. n T he original question in Clayton et al. is: “How can I remain close and intimate with my partner (physically and/or emotionally)?” See 2a: this question was formulated more directly. o The original question in Clayton et al. is: “Please tell me the side effects of any new medication you prescribe. How likely are they to occur?”. Because patients often ask these questions, this question was split into two questions. p The questions about morphine are all based on the questions in the section “Morphine” in the original QPL by Clayton et al. In their QPL, the question “Is it OK for me to drive?” was placed in the section Lifestyle & Quality of Life, but this question was added in this QPL as a question about morphine-like medication. In addition, nausea as a side effect of morphine was added as a question. q The original question in Clayton et al. is: “Can you give me advice about treatment decisions that I am discussing with other doctors? For example, whether to stop or start chemotherapy or other treatments”. See 3a: this question was re-formulated, as the palliative care consultants do not make treatment decisions, but can explain the future scenarios related to treatment. r The original question in Clayton et al. is: “Can someone help me to communicate with other members of my family about what is happening to me?” See 2b and 3b: these questions were formulated as one question to support self-management of patients and family. s The original question in Clayton et al. is: “What support is available for other people in the family, such as my carer or my children?” The aspect about children was formulated into a new question. t Questions on how to manage care at home (home care and household care) were added to empower the atient and family to self-manage their care. u In the Netherlands, the general practitioner or medical specialist remains the coordinator of care; the palliative care consultant is not a co-practitioner (see 3a). Therefore, no specific questions about who to contact in which situation were provided, only the open question. v This question replaced the original question in Clayton et al.: “Is there a program of activities available through the palliative care service? (e.g., physiotherapy, massage, spa, breathlessness clinic, day centre)”, because palliative care is a consultation-based service and may give advice about certain activities (see 3a). w Because palliative sedation and especially euthanasia are part of end-of-life care in the Netherlands, this question was added. x T he original question in Clayton et al. is: “What costs will I have during my illness (e.g. for any equipment required or medications)?” See 3c: palliative and terminal care are covered by Dutch insurance companies; only questions about the costs of hospice care arose during consultation. y In the original question prompt list by Clayton et al., the category “End of life issues” comprises several questions about the end of life. This question attempted to summarize these questions into one. z T hese questions were added to the question prompt list, because these were questions that were often asked during consultations with palliative care consultants of our Center of Expertise Palliative Care. 6
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