Assessment of symptom burden and information needs helps tailoring palliative care consultations 121 in the last six months of life, and a systematic review among patients with incurable cancer.26, 27 The high percentage of patients in the palliative phase with clinically relevant burden from having a dry mouth was also reported in study among UK hospice patients.28 Our patients most often prioritised Pain, Fatigue and Shortness of breath, even though these did not always cause the highest burden. This is in line with previous studies on how patients prioritise symptoms and suggests that patient-reported symptom burden does not fully reflect symptom experience.15, 16 Also, in hospital care, there may be more focus on physical symptom burden compared to symptom burden in other dimensions (psychological, social, and existential), influencing the symptoms patients may worry about. Moreover, patients may not be aware that some symptoms, such as a dry mouth, are treatable or occur frequently in the palliative phase. Additionally, pain, fatigue, and shortness of breath significantly impact daily life, and patients and family may fear the occurrence of these symptoms, which might explain why they prioritised them.15 Anxiety was reported to be more severe among patients in the disease-modifying phase than those in the symptom-management phase. The difference may be small, but according to Hui et al. a difference in burden of ≥1 is clinically relevant.30 This difference may be due to a difference in situational anxiety: patients in the diseasemodifying phase may experience more anxiety caused by uncertainties associated with life-prolonging treatment and what the future will look like, whereas patients in the symptom-management phase have had more time to deal with their situation, and have more certainty about their prognosis. Additionally, there may be a difference in organic anxiety, which entails somatic causes of anxiety such as side effects of treatment.31 Zweers et al. found that experienced anxiety may be associated with having accepted that disease-modifying treatment is not an option anymore.32 Since Utrecht SymptomDiary symptoms are often multidimensional problems, discussion about these symptoms should extend to psychological distress, social impact and existential aspects to foster optimal care. We hypothesise that patients and families may also worry about symptoms that they associate with death approaching, such as pain and shortness of breath. Clinicians should therefore discuss not only symptom scores, but also possible future symptoms to tailor information-provision.17 A study in hospice patients demonstrated that although patients scored “0” on the anxiety scale using the Utrecht Symptom Diary, they still may experience tension, or worries.32 Using a question prompt list in addition to symptom assessment may support a more comprehensive symptom assessment by adding information about the symptoms patients and family worry about. Having a comprehensive insight into symptoms, information needs, and wishes helps to support them better. 6
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