Table 1 Measurements included in the study

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].