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Table 2 Schedule of assessments concerning patients and caregivers in the intervention arm

From: MSmonitor-plus program and video calling care (MPVC) for multidisciplinary care and self-management in multiple sclerosis: study protocol of a single-center randomized, parallel-group, open label, non-inferiority trial

PROMs

Standard time points

Variable time points

B

3 m

6 m

9 m

12 m

15 m

18 m

21 m

24 m

ID

PROMs by MSmonitor Plus, for MS patients, with or without a caregiver/partner

          

1a

1b

Actionable

SF-Qualiveen

Screening questionnaire for bladder disorders.

X

X

X

X

X

X

X

X

X

 

In order to assess health-related quality of life of patients with urinary disorders in neurologic conditions

X

X

X

X

X

X

X

X

X

 

2

Checklist

For individual tension strength

X

X

X

X

X

X

X

X

X

 

3

MSIP

Multiple sclerosis impact profile

X

X

X

X

X

X

X

X

X

 

4

MSIS-29

Multiple sclerosis impact scale 29

X

X

X

X

X

X

X

X

X

 

5

NBD

Neurogenic bowel dysfunction score

X

X

X

X

X

X

X

X

X

 

6

Quick Scan

Five questions about the impact of fatigue on daily life, the Modified Fatigue Impact Scale-5 item Version (MFIS-5) and eight questions about health-related quality of life, the Leeds MS Quality of Life (LMSQol) and the registration of medication use

X

X

X

X

X

X

X

X

X

Every day if needed

7

HADS

Hospital anxiety and depression scale.

Consists of a depression scale and anxiety scale, both are determined by means of seven questions

X

 

X

 

X

 

X

 

X

 

8

MSISQ-15

Questionnaire on intimacy and sexuality in multiple sclerosis (MS) or spinal cord injury

X

 

X

 

X

 

X

 

X

 

9

MSQOL-54

MS-specific quality of life

X

 

X

 

X

 

X

 

X

 

10

Natalizumab checklist

16 questions every 28 days, submitted 2 days prior to the infusion of natalizumab

X

        

Every 28 days, if needed

11

Do I have a schub

Consists of 4 questions that the patient must answer. This shows whether he/she should contact the doctor to check if they have a schub

X

        

Daily available

12

Diary

The patient can keep track of activities and moments of rest in order to gain insight into fatigue

X

        

Daily available

ID

PROMs by eCRF, for patients, with or without a caregiver/partner

          

13

iMCQ

iMTA Medical Consumption Questionnaire

X

X

X

X

X

X

X

X

X

 

14

iPCQ

iMTA Productivity Cost Questionnaire

X

X

X

X

X

X

X

X

X

 

15

CFQ

Cognitive failure questionnaire

X

 

X

 

X

 

X

 

X

 

16

EQ-5D-5L

Health questionnaire (Dutch version)

X

 

X

 

X

 

X

 

X

 

17

IPA

Impact on participation and autonomy

X

 

X

 

X

 

X

 

X

 

18

MSSES

MS Self Efficacy Scale

X

 

X

 

X

 

X

 

X

 

19

PIH

Partners in Heath Scale

X

 

X

 

X

 

X

 

X

 
 

PREMs by eCRF for patients, with or without a caregiver/partner

          

20

PTO

Patient satisfaction questionnaire Isala

X

   

X

   

X

 
 

PROMs by eCRF for caregivers/partners of MS patients

          

21

CarerQol-7D/VAS

Quality of life of informal caregivers for use in economic evaluations

X

 

X

 

X

 

X

 

X

 

15

CFQ

Cognitive failure questionnaire

X

 

X

 

X

 

X

 

X

 

22

iVICQ

iMTA Valuation of Informal Care Questionnaire

X

   

X

   

X

 
  1. Data collection was performed using MS monitor and eCRF. PROMs and PREMs are ordered by 1) frequency of administration and 2) alphabet
  2. B baseline, m month
  3. PROM Patient-reported outcome measure, PREM Patient-Reported Experience Measure