General introduction 21 Table 2. List of multidimensional instruments for assessing palliative care needs, derived from the Dutch quality framework on palliative care.2 Instrument Target population Aim Dimensions addressed Physical Psychological Social Spiritual Lastmeter88 (Distress Barometer) Patients with cancer Signalling experienced burden of disease x x x x USD89 Patients in the palliative phase Signalling and monitoring of symptoms x x CRQ90 Patients with chronic lung disease Monitoring of quality of life x x CaReQoL CHF91 Patients with heart failure Monitoring and targeted assessment of quality of life x x GFI92 Elderly Targeted assessment of frailty in elderly during treatment decisionmaking x x x G893 Elderly patients with cancer Targeted assessment of frailty in elderly during cancer treatment decision-making x x List of abbreviations: USD: Utrecht Symptom Diary; CRQ: Chronic Respiratory Questionnaire; CaReQoL CHF: Care Related Quality of life voor Chronisch Hartfalen; GFI: Groningen Frailty Indicator; G8: Geriatric Assessment 8. The Edmonton Symptom Assessment System (ESAS), developed by Bruera et al. in 1991, was the first tool to use numeric rating scales (from 0, no complaints, to 10, worst complaints) to assess and monitor patient-reported symptom burden for symptoms that are common in the palliative phase: pain, tiredness, nausea, depression, anxiety, drowsiness, decreased appetite, poor sense of well-being, shortness of breath.94 The ESAS has been widely studied since 1991: from the trajectories of symptom burden, to its role as a trigger in identifying palliative care needs and its integration into electronic patient files.95 Symptom scores of ≥4 are considered clinically relevant, warranting more comprehensive assessment and treatment, and scores of ≥7 are considered as serious burden.96 Several studies conclude that a difference of one point on the numeric rating scales is a clinically relevant change in symptom intensity.97, 98 The ESAS was translated into more than twenty languages, including Dutch.89 The validated Dutch version, the Utrecht Symptom Diary (USD), includes numeric rating scales for common problems. Also, patients can fill out which complaint(s) or problem(s) should be addressed first. The USD addresses physical and psychological symptoms or problems. To also acquire an assessment of the social and spiritual dimensions, researchers of the Dutch academic hospice Demeter and the University of Humanistics developed the 1
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