Outcomes and assessments

The primary study outcome was the change in control self-efficacy, assessed by the Multiple Sclerosis Self-Efficacy Scale (MSSES), at six months [12]. The MSSES is a specific and sensitive self-report questionnaire consisting of two 9-items subscales for control and functional self-efficacy, with a high internal consistency and test-retest reliability [12]. Each item is scored from 10 (very uncertain) to 100 (very certain), and addition of the item scores yields the MSSES Control (MSSES-C) and Function (MSSES-F) scores (minimum 90, maximum 900). The MSSES-C measures confidence with managing symptoms and coping with the demands of illness, and the MSSES-F measures confidence with regard to functional abilities [12].

Secondary endpoints were changes in functional self-efficacy (MSSES-F), participation and autonomy, HRQoL, anxiety, depression and coping styles at six months.

Participation and autonomy were assessed by the Impact on Participation and Autonomy (IPA) questionnaire [13]. The IPA-Limitations subscale assesses perceived limitations in participation and autonomy, and a higher score indicates higher limitations to participation and autonomy. The IPA-Problems subscale examines the extent to which these limitations are experienced as problematic, and a higher IPA-Problems score indicates a greater experience of problems [13].

HRQoL was assessed via the Multiple Sclerosis Quality of Life 54-Items (MSQoL-54) [14].

The MSQoL-54 is an MS-specific, multi-dimensional inventory of patient-centered health status, and consists of the Short Form 36-Items health survey as a generic core measure, supplemented with 18 questions on items relevant to patients with MS. A physical and a mental dimension underlie the MSQoL-54: the physical and mental domains [14]. Scores for each domain range from 0–100, where higher values indicate better HRQoL.

Anxiety and depression were measured by the Hospital Anxiety and Depression Scale (HADS), which is a 14-item, self-report questionnaire consisting of two subscales for anxiety and depression [15]. A total subscale score of eight to 10 points indicates possible mild to moderate symptoms of anxiety/depression, and 11 to 21 points indicate a probable clinically significant condition of anxiety/depression [15].

Coping styles were assessed with the Utrecht Coping List (UCL) [16]. The scores on the subscales ‘palliative reaction’ and ‘avoidance’ range from eight to 32, the scores on the subscales ‘active tackling’ and ‘passive reaction’ range from seven to 28, and the scores on the subscales ‘emotion expression’, ‘comforting cognitions’ and ‘social support’ range from three to 12, five to 20 and from six to 24, respectively.

The tertiary endpoint was change in care-related strain on support partners at six months, which was assessed by the Caregiver Strain Index (CSI) [17]. The CSI includes thirteen items yielding a total score between zero and 13. A higher score indicates higher care-related strain, and scores of seven or higher are associated with caregivers' self-reports of experiencing situations that conflict with giving help [17].

Assessments were at baseline and at one, three and six months follow-up via online questionnaires (www.ms4ri.nl). Data were acquired with use of the open source online application LimeSurvey® in compliance with European Union regulations concerning online medical data. For patients the completion of the questionnaires took about 45 minutes and for partners about five minutes per time point.

During CDT, safety aspects and adverse events were assessed and documented by the multidisciplinary team at the end of each day. After having completed CDT, participants were informed to contact the help desk of the NMSF or the psychiatrist of the team (RPR) in case of questions or complaints.