Table 2.
Outcome measures and timing of follow-up
| Baseline | Three-month follow-up | Six-month follow-up | |
|---|---|---|---|
| General characteristics | X | X | X |
| MS history | X | X | X |
| Medical history | X | X | X |
| EDSS | X | X | X |
| FIM | X | X | X |
| SEIQoL-DW* | X | X | X |
| Core-POS** | X | X | X |
| POS-S-MS** | X | X | X |
| HADS* | X | X | X |
| EQ-5D* | X | X | X |
| MSCQ | X | † | † |
| Carer characteristics /medical history | X | X | X |
| Carer HADS | X | X | X |
| Carer SF-36 | X | X | X |
| Carer EQ-5D | X | X | X |
| Carer ZBI | X | X | X |
To preserve blinding, all outcome measures (except MSCQ) are assessed during examiner visits at three and six months follow-up. *Not assessed in MS patients with severe cognitive compromise or unable to communicate; **carer versions used in MS patients with severe cognitive compromise or unable to communicate; †assessed by phone interview. Core-POS, Core-Palliative care Outcome Scale; EDSS, Expanded Disability Status Scale; EQ-5D, European Quality of Life Five Dimensions; FIM, Functional Independence Measure; HADS, Hospital Anxiety and Depression Scale; MSCQ, Multiple Sclerosis foundation Costs Questionnaire; MS, multiple sclerosis; POS-S-MS, Palliative care Outcome Scale-Symptoms-Multiple Sclerosis; SF-36, Short Form 36; SEIQoL-DW, Schedule for the Evaluation of Individual Quality of Life-Direct Weighting; ZBI, Zarit Burden Interview.