Table 1 Data collection and questionnaires for outcome collection
| Â | Measure | Description |
|---|---|---|
Symptom status and palliative care concerns | Myeloma Patient Outcome Scale (MyPOS) [31] | 33-item questionnaire with 15 disease- and treatment-specific symptoms, 13 myeloma-specific quality of life items, 5 generic items about palliative care concerns |
Module of the Palliative Care Outcome Scale [32] | ||
Three subscales: Functioning and symptoms, Emotional response, Healthcare support (information and satisfaction with care)Â [31] | ||
5-point Likert scale (0 – not at all to 4 – overwhelming) | ||
Possible range of 0–132 for total score (higher score means more symptoms/problems) | ||
Health-related quality of life | European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 [26] | 30-item generic health-related quality of life questionnaire |
Five functional scales (physical, role, emotional, social, cognitive functioning), six symptom scales (fatigue, nausea/vomiting, pain, dyspnoea, constipation, appetite loss, sleeping problems, financial difficulties), one global health status/quality of life scale | ||
4-point Likert scale (1 – not at all to 4 – very much), except for two 7-point global health status/quality of life items | ||
Transformation of all scales to 0–100 scale [30] | ||
High scores on functional scales and global quality of life scales represent high level of functioning/quality of life | ||
High scores on symptom scales represent a high symptom burden | ||
20-item add-on module of disease-specific symptoms and functional impact for multiple myeloma, added onto the EORTC-QLQ-C30 | ||
Two symptom subscales (disease symptoms and side-effects of treatment), two functional subscales (body image and future perspectives) | ||
4-point Likert scale (1 – not at all to 4 – very much) | ||
Transformation of all scales to 0–100 scale | ||
High scores on functional scales represent high levels of functioning. High scores on symptom scales represent a high symptom burden. | ||
EuroQOL-5D-3L [27] | Time trade-off utility measure from a 5-item health status assessment and a visual analogue scale (generic health state outcome) | |
5 items: mobility, self-care, usual activities, pain/discomfort, anxiety/depression; global health status measured by one visual-analogue scale (0–100) | ||
3-point Likert scale for 5 items (no problems, some/moderate problems, extreme problems) | ||
Five items form EQ5D Index score, transformed into health status | ||
Range of −0.59 to 1.0 points (higher scores indicate better health state with 1.0 representing full health), standardised according to country-specific norms (UK and US norms) |