BackgroundMultiple Sclerosis (MS) is the most common cause of neurological disability in young and middle-aged adults. At this stage in life most people are in the midst of their working career. The majority of MS patients are unable to retain employment within 10 years from disease onset. Leading up to unemployment, many may experience a reduction in hours or work responsibilities and increased time missed from work. The MS@Work study examines various factors that may influence work participation in relapsing-remitting MS patients, including disease-related factors, the working environment and personal factors.Methods/designThe MS@Work study is a multicenter, 3-year prospective observational study on work participation in patients with relapsing-remitting MS. We aim to include 350 patients through 15–18 MS outpatient clinics in the Netherlands. Eligible participants are 18 years and older, and either currently employed or within three years since their last employment. At baseline and after 1, 2 and 3 years, the participants are asked to complete online questionnaires (including questions on work participation, work problems and accommodations, cognitive and physical ability, anxiety, depression, psychosocial stress, quality of life, fatigue, empathy, personality traits and coping strategies) and undergo cognitive and neurological examinations. After six months, patients are requested to only complete online questionnaires. Patient perspectives on maintaining and improving work participation and reasons to stop working are gathered through semi-structured interviews in a sub-group of patients.DiscussionProspective studies with long-term follow-up on work participation in MS are rare, or take into account a limited number of factors. The MS@Work study provides a 3-year follow-up on various factors that may influence work participation in patients with relapsing-remitting MS. We aim to identify factors that relate to job loss and to provide information about preventative measures for physicians, psychologists and other professionals working in the field of occupational health.

The broadened perspective on ethical sensitivity can be used as a heuristic device to discern what both explicit and implicit moral knowledge in care are about. This empirical way of looking at care practices can enhance the awareness of the moral knowing of the professional caregiver.

BackgroundPhysicians commonly advise patients to begin disease modifying therapies (DMT’s) shortly after the establishment of a diagnosis of Multiple Sclerosis (MS) to prevent further relapses and disease progression. However, little is known about the meaning for patients going through the process of the diagnosis of MS and of making decisions on DMT’s in early MS.ObjectiveTo explore the patient perspective on using DMT’s for MS. Methods: Ten participants with a recent (< 2 years) relapsing-remitting MS diagnosis were interviewed. Seven of them were using DMT’s at the time of the interview. All interviews were transcribed and analyzed using a hermeneutical-phenomenological approach.ResultsThe analysis revealed the following themes: (1) Constant confrontation with the disease, (2) Managing inevitable decline, (3) Hope of delaying the progression of the disease, and, (4) The importance of social support. The themes show that patients associate the recommendation to begin DMT’s (especially injectable DMT’s) with views about their bodies as well as their hopes about the future. Both considering and adhering to treatment are experienced by patients as not only matters of individual and rational deliberation, but also as activities that are lived within a web of relationships with relatives and friends.ConclusionFrom the patient perspective, the use of DMT’s is not a purely rational and individual experience. More attention to the use of DMT’s as relational and lived phenomena will improve the understanding of the process of decision-making for DMT’s in MS.

Care ethics as initiated by Gilligan, Held, Tronto and others (in the nineteen eighties and nineties) has from its onset been critical towards ethical concepts established in modernity, like 'autonomy', alternatively proposing to think from within relationships and to pay attention to power. In this article the question is raised whether renewal in this same critical vein is necessary and possible as late modern circumstances require rethinking the care ethical inquiry. Two late modern realities that invite to rethink care ethics are complexity and precariousness. Late modern organizations, like the general hospital, codetermined by various (control-, information-, safety-, accountability-) systems are characterized by complexity and the need for complexity reduction, both permeating care practices. By means of a heuristic use of the concept of precariousness, taken as the installment of uncertainty, it is shown that relations and power in late modern care organizations have changed, precluding the use of a straightforward domination idea of power. In the final section a proposition is made how to rethink the care ethical inquiry in order to take late modern circumstances into account: inquiry should always be related to the concerns of people and practitioners from within care practices.