Table 1.
Measurements included in the study
Measure | Questionnaire | Description | Analysis and special aspects |
---|---|---|---|
Quality of life | Short Form-8 Health Survey (SF-8) | Validated short form of the Health survey Form-36 [31, 32]. Eight aspects of quality of life rated on six-point Likert scale ranging from 0 (excellent) to 5 (very bad). Higher values represent higher quality of life. | For the German version of the SF-8, age- and gender-specific data for the adult norm population are available [32]. |
Distress | Distress Thermometer (DT) of the National Comprehensive Cancer Network | Measures the subjective distress within the last week on an analogue scale ranging from 0 (no distress) to 10 (extreme distress) [33, 34]. An additional list of problems potentially causing this distress has to be answered with “yes” and “no”. The list was adapted and consisted of 23 problems. | For the German version, a cut-off value of ≥ 5 is recommended to detect clinically relevant distress with need of professional psychological support [34]. |
Anxiety | Generalized Anxiety Disorder 7-item scale (GAD-7) | Based on the DSM-IV diagnostic criteria for generalized anxiety disorder with excellent reliability and validity [35]. Frequency of core symptoms of generalized anxiety disorder within the past 2 weeks. Items are scored on a four-point Likert scale ranging from 0 (not at all) to 3 (nearly every day) with a total score ranging from 0 to 21. | A score up to 4 indicates the absence, scores of 5–9 mild, scores of 10–14 moderate and scores of ≥ 15 severe anxiety symptom levels [35]. Values for German standard population are available [43]. |
Depression | Patient Health Questionnaire depression module 9 (PHQ-9) | Based on the DSM-IV diagnostic criteria for depression with excellent reliability and validity [36]. The 9 items assess the frequency of depressive symptoms within the past 2 weeks. Items are scored on a four-point Likert scale ranging from 0 (not at all) to 3 (nearly every day) with a total score ranging from 0 to 27. | A score up to 4 indicates the absence, scores of 5–9 mild, scores of 10–14 moderate and scores of ≥ 15 severe depressive symptom levels. Values for German standard population are available [36]. |
Unmet needs | Family Inventory of Needs (FIN) | Measures the supportive needs of family caregivers and the extent to which these are met [37, 38]. 20 items are rated on two subscales: Subscales FIN–Importance and FIN–Fulfillment. Ratings between 1 (not important) and 5 (extremely important) for FIN–Importance and 0 (not met), 0.5 (partly met), and 1 (met) for the FIN–Fulfillment subscale. | For FIN-Importance, answer categories were dichotomized into “not/somewhat/moderate” vs. “very/extremely important”. For FIN-Fulfillment, indicated needs (at least “somewhat important”) were rated “unmet” if partly or not met. The German version was used with courtesy of Schur et al. [38]. |
Palliative care outcome | Palliative Care Outcome Scale (POS) | 11 items for physical, practical, emotional, and psychosocial concerns of the patient and family caregiver; overall score ranges from 0 to 40 [39]. A lower sum score indicates better palliative care outcome. | Reference values from German validation in patients and professionals are available [39]. |
Satisfaction with palliative care | FAMCARE-2 | Revised version of the FAMCARE tool used to measure family satisfaction with advanced cancer care. Consists of 17 items scored on a five-point Likert scale ranging from “very satisfied” to “very dissatisfied” [40, 41]. A total score ranging from 17 to 85 and four subscale scores can be calculated. Higher sum scores indicate higher satisfaction. | The German version was used with courtesy of Sewtz et al. [41]. |