Background

In recent years, instruments have been developed that provide wellbeing equivalents to the health-related quality-adjusted life-year (QALY) for use in cost-effectiveness analyses (CEA). Little is known about the relevance of these instruments to people with multiple sclerosis (MS) or the implications of their use for decision-making regarding treatments for MS. This research is part of a study that aims to assess two wellbeing measures which can be used in CEA - the Adult Social Care Outcomes Toolkit (ASCOT) and ICEpop CAPability measure for Adults (ICECAP-A) – in the context of MS.

Objectives

To compare the psychometric properties of the ASCOT and ICECAP-A when used with people with MS, with those of two health-related QALY measures designed for use in CEAs: the EuroQol EQ-5D-3L and the Multiple Sclerosis Impact Scale – Eight Dimensions (MSIS-8D).

Methods

Via a literature review and the involvement of with people with MS, we identified significant illness-related events (IREs) that affect the wellbeing of people with MS. We developed a questionnaire for respondents to report whether they had experienced each of 27 IREs over the previous six months. This questionnaire was administered online alongside the ASCOT and ICECAP-A via the UK MS Register. This is a website via which people with MS living in the UK directly complete questionnaires about their MS. Responses were linked to MS Register data: age, gender, type of MS, and responses to the EQ-5D, Multiple Sclerosis Impact Scale (MSIS-29) (from which the MSIS-8D can be calculated), Fatigue Severity Scale (FSS), Hospital Anxiety and Depression Scale (HADS) and Multiple Sclerosis Walking Scale-12 (MSWS-12). The relevance and validity of the wellbeing measures for people with MS were analysed and compared with the EQ-5D and MSIS-8D.

Results

Responses were provided by 2825 people with MS. Completion rates were high for all instruments (³95%). Each of the wellbeing and QALY measures discriminated between groups based on: MS type; published cut-off points for the FSS, HADS and MSWS-12; and incidence of 15 of the IREs including relapses, and changes in treatment, support or employment (p<0.0001). Typically, absolute effect sizes were higher for the EQ-5D, while standardised effect sizes were higher for the MSIS-8D and wellbeing measures.

Conclusions

These psychometric properties of the ASCOT and ICECAP-A wellbeing measures support their use with people with MS. However, their lower absolute effect sizes could result in less favourable outcomes when assessing treatments for MS, compared to the EQ-5D-3L.

Background

Fatigue is one of the most frequent reported symptoms in Multiple Sclerosis (MS) and is usually considered to be one of the three worst symptoms with gait and genito-sphincteral disorders. Fatigue, an invisible symptom, affects social and professional relationships and decreases quality of life.

Pharmacological and non-pharmacological therapies are available, but evidences for effectiveness are limited. To date, three RCTs using cognitive-behavioral approaches (CBT) in the context of MS have been conducted (Van Kessel, 2007; Grossman, 2010, Thomas et al., 2013). Nevertheless, the positive effect of treatment wears off over time. Thus, booster session might enhance the benefits on the long term by reinforcing the internalizations processes. FACETS, developed by Thomas and al in 2013, is promising. It is a six once-weekly sessions program focused on CBT and energy conservation, delivered in small groups, easy to implement in medical services or associations.

Objectives

1. Demonstrate the effectiveness of the FACETS program in a French context

2. To assess the effect of 4 booster sessions to the FACETS program to obtain a long-term effect (1 year).

Methods

Multicentric RCT comparing FACETS versus local practice in pwMS. Six once-weekly sessions followed by 4 booster sessions at regular intervals. The main criteria is the impact of CBT on fatigue evaluated by the Modified Fatigue Impact Scale (MFIS) at 1 year.

Results

N=105 patients recruited (F=89 VS M=16). Mean âge (years) = 46 (9,99), Mean EDSS = 2.61 (1,45). The MFIS Score mean is 54,59 (14,16), a score above 45 means that fatigue. Results at 6 weeks, 6 and 12 months will be presented during congress.

Conclusions

The programme is designed to facilitate use within health services. Thus, if the results from this trial are positive on the long term, there is potential for directly adding to the treatment options available to people with MS who have troublesome fatigue and improving the services available to them.