Mary Joanne Verhoef

Assessment of symptom burden and information needs helps tailoring palliative care consultations 125 REFERENCES 1. World Health Organisation (2018) WHO Definition of Palliative Care. http:​//www.who.int/ cancer/palliative/definition/en/. Accessed 05-10-2018. 2. Just because we can, doesn’t mean we should. Appropriate end-of-life care. 2015. Utrecht, the Netherlands: Royal Dutch Medical Association. 3. Taber JM, Ellis EM, Reblin M, et al. Knowledge of and beliefs about palliative care in a nationally-representative U.S. sample. PLoS One 2019; 14: e0219074. 2019/08/16. DOI: 10.1371/journal.pone.0219074. 4. Hebert RS, Schulz R, Copeland V, et al. What questions do family caregivers want to discuss with health care providers in order to prepare for the death of a loved one? An ethnographic study of caregivers of patients at end of life. J Palliat Med 2008; 11: 476-483. 2008/03/28. DOI: 10.1089/jpm.2007.0165. 5. Janssen DJ, Spruit MA, Wouters EF, et al. Daily symptom burden in end-stage chronic organ failure: a systematic review. Palliat Med 2008; 22: 938-948. 2008/09/20. DOI: 10.1177/0269216308096906. 6. Rainbird K, Perkins J, Sanson-Fisher R, et al. The needs of patients with advanced, incurable cancer. Br J Cancer 2009; 101: 759-764. 2009/08/06. DOI: 10.1038/sj.bjc.6605235. 7. Kirk P, Kirk I and Kristjanson LJ. What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. BMJ 2004; 328: 1343. 2004/05/21. DOI: 10.1136/bmj.38103.423576.55. 8. Parker SM, Clayton JM, Hancock K, et al. A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/ caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage 2007; 34: 81-93. 2007/05/29. DOI: 10.1016/j.jpainsymman.2006.09.035. 9. van der Zwaard J, Francke A and Gamel C. Informatiebehoeften van patiënten die palliatieve zorg ontvangen en hun naasten: Een literatuurstudie. Verpleegkunde 2003; 18: 8-20. 10. Wise J. Dying remains a taboo subject for patients and GPs, finds survey. BMJ (Clinical research ed) 2012; 344: e3356. 11. Pieters J, Dolmans D, Verstegen DML, et al. Palliative care education in the undergraduate medical curricula: students’ views on the importance of, their confidence in, and knowledge of palliative care. BMC Palliat Care 2019; 18: 72. 2019/08/29. DOI: 10.1186/s12904-0190458-x. 12. de Graaf E, Zweers D, de Graeff A, et al. Symptom Intensity of Hospice Patients: A Longitudinal Analysis of Concordance Between Patients’ and Nurses’ Outcomes. J Pain Symptom Manage 2018; 55: 272-281. 2017/09/20. DOI: 10.1016/j.jpainsymman.2017.09.005. 13. Pakhomov SV, Jacobsen SJ, Chute CG, et al. Agreement between patient-reported symptoms and their documentation in the medical record. Am J Manag Care 2008; 14: 530-539. 2008/08/12. 14. Stromgren AS, Groenvold M, Pedersen L, et al. Does the medical record cover the symptoms experienced by cancer patients receiving palliative care? A comparison of the record and patient self-rating. J Pain Symptom Manage 2001; 21: 189-196. 2001/03/10. DOI: 10.1016/s0885-3924(01)00264-0. 15. Li B, Mah K, Swami N, et al. Symptom Assessment in Patients with Advanced Cancer: Are the Most Severe Symptoms the Most Bothersome? J Palliat Med 2019; 22: 1252-1259. 2019/05/08. DOI: 10.1089/jpm.2018.0622. 16. Stromgren AS, Sjogren P, Goldschmidt D, et al. Symptom priority and course of symptomatology in specialized palliative care. J Pain Symptom Manage 2006; 31: 199-206. 2006/03/28. DOI: 10.1016/j.jpainsymman.2005.07.007. 6

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