The MS-CEBA study: determining Cognitive, Energetic, Behavioural and Affective (CEBA) profiles in Multiple Sclerosis

Multiple Sclerosis (MS) is an invalidating neurological disease known to cause
physical symptoms, which usually are the main focus of treatment. However,
non-physical, more neuropsychological, symptoms also frequently occur,
concerning the Cognitive, Energetic, Behavioural and Affective (CEBA) domains.
Symptoms in the CEBA domains are known to negatively affect societal
participation, and thereby quality of life. Unfortunately, despite their
negative consequences, CEBA symptoms are not always timely recognized in pwMS.
Moreover, despite the fact that there are various effective neuropsychological
treatments available for neurological patients with these symptoms, most pwMS
do not yet receive these treatments.

Although findings in group studies confirm that each of the CEBA domains can be
affected in pwMS and correlations between symptoms regarding different CEBA
domains can be present, there are large differences between individual pwMS
with regard to which CEBA symptoms co-occur and which CEBA symptoms prevail.
Therefore, in order to optimize care for pwMS (e.g. timely referring patients
to suiting neuropsychological treatment) there is need for a large scale
study investigating over the whole range of CEBA symptoms how frequent these
occur, whether and how symptoms co-occur, and thus if CEBA profiles can be
identified. If CEBA profiles are identified, it is considered likely that
multiple CEBA symptoms will be prominent within a single CEBA profile. Here,
subjective burden of pwMS can play an important role in determining which
symptoms the main focus should be on in possible neuropsychological
treatment.

Currently, a clear and standardized procedure with a feasible
neuropsychological screening tool quickly identifying and combining CEBA
profile and subjective burden, providing a suitable indication for possible
neuropsychological treatment, is lacking.

The aim of the present study is identifying CEBA profiles in pwMS and
subsequently developing a feasible screening tool allowing quick identification
of CEBA profile and subjective burden of pwMS in clinical practice, providing a
suitable indication for possible neuropsychological treatment. If needed,
combining of or adjustments to existing neuropsychological treatments will be
suggested in order meet the needs of pwMS with CEBA symptoms. All of this with
the ultimate aim to improve societal participation, and accordingly quality of
life, among pwMS.

This study is an observational, prospective, multicentre cohort study

The current project concerns an observational study for which no health risks
are known. The NPA is given by experienced neuropsychologists, who will
carefully monitor patients* energetic status and well-being. These
neuropsychologists have extensive clinical experience with neuropsychological
assessment of pwMS, based on which we know that the majority of these patients
is able to undergo around two hours of testing. The test battery used in the
study is particularly short; around 45-60 minutes. Questionnaires will be send
to patients before the NPA takes place, so these can be completed at home.
Also, if necessary patients can be tested at home. On request, patients can be
provided with a short report about their results which provides them with more
insight in their possible CEBA consequences of MS as well as their strong
points. This can serve to seek available support if patients are open to this.
In addition, we expect longer-term benefits for pwMS, because with the
knowledge gained from this research we hope to optimize neuropsychological care
for pwMS in general and thereby improve their societal participation and
overall quality of life.