Table 2 Questionnaires used in the trial. For a full review of measures see [28]

Administered once only

• AMTS (Abbreviated Mental Test Score)

   - 10 simple questions used to assess cognitive function

• Structured interview of basic demographic and clinical information

Administered twice (first and last interview)

• UNDS (United Kingdom Neurological Disability Scale) [18]

   - 12 sections designed to assess disability in people with MS

• EDSS (Expanded Disability Status Scale) [27]

   - 10-point rating scale used to identify level of MS disability

Administered at every interview

• MSIS (Multiple Sclerosis Impact Scale) [31, 32]

   - 29 questions on a variety of MS-related symptoms on a 1–5 scale

• POS (Palliative Care Outcome Scale) [29, 30] + POS-MS symptoms

   - 10 items on anxiety, patient and carer concerns, practical needs

   - 18 questions specifically relating to MS symptoms on a 0–4 scale

• Structured health/social services/demographic interview

   - Record of frequency and types of heath/social services received

   - Assessment of hospital care if received

Carer/family questionnaires (administered at every interview)

• CBurden (Zarit Carer Burden Inventory)

   - 12 questions on carer burden

• Mastery (Lawton caregiver mastery scale)

   - 4 items on positive experiences of caring