Assessment of symptom burden and information needs helps tailoring palliative care consultations 113 Data collection using the conversation guide: the Leiden Guide on Palliative care The conversation guide comprises two parts (Figure 1). Part 1 consists of the Utrecht Symptom Diary (USD, an adapted and translated version of the Edmonton Symptom Assessment System, ESAS) and includes twelve 0-10 numeric rating scales (0 = no symptom burden; 10 = worst symptom burden imaginable) to assess pain, sleeping problems, dry mouth, swallowing problems, loss of appetite, constipation, nausea, shortness of breath, fatigue, anxiety, depression and wellbeing.20, 23 Patients can prioritise symptoms and problems with the item “In your opinion, which problem(s) should be solved first?”. The USD is used to monitor burden over time and to assess treatment effects on often-experienced symptoms in the palliative phase. Using the USD, patients can score experienced wellbeing and severity of their symptoms.12 Part 2 consists of a question prompt list about palliative care to assess the information needs of the patient and family. The question prompt list was translated from Clayton et al. and adapted, and now consists of 35 conversation topics and 40 sample questions (75 items in total) grouped in six categories (Figure 1 and Supplement 1).18, 21 Patients are instructed to tick the boxes of the topics and/or questions in the conversation guide they would like to discuss during consultations. The Center of Expertise in Palliative Care keeps duplicates of all conversation guides that patients have used, for purposes of care evaluation. In this study, we collected the data on symptom burden and information needs that patients had reported via the conversation guide. Analyses Descriptive statistics were used to describe patient characteristics, patient-reported symptom burden, prioritised symptom(s) and the topics and questions that patients and families selected in the question prompt list. Survival from consultation to death or study closure was calculated using Kaplan-Meier’s methodology. We used a log-rank test to compare survival between patients in the disease-modifying phase versus symptommanagement phase and rounded up to whole weeks. Symptom burden ratings were analysed both as continuous and as categorial outcomes; for the latter, ratings were classified as mild (rating <4), clinically relevant (burden requiring more comprehensive assessment, rating ≥4), or serious (rating ≥7).24, 25 Patients could fill in more than one symptom to prioritise; for purposes of analysis, the first four symptoms reported as priorities were included. Also for purposes of analysis we clustered questions from the question prompt list by topic and category (Supplement 2). We assessed the associations between patient-reported symptom burden, prioritised symptom(s), and information needs about symptoms with Chi-square tests, Fisher’s exact tests, or and Mann– Whitney U tests (for not-normally distributed continuous variables) as appropriate; these tests were also used to compare patients in the disease-modifying versus symptom6
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