Home-based palliative approach for people with severe multiple sclerosis and their carers: study protocol for a randomized controlled trial

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.

ISSN: 1745-6215