Complexity & uncertainty;an exploration of shared decision making in Multiple Sclerosis
The concept of shared decision making (SDM) during medical consultations has gained increasing interest in medical and academic circles in recent decades. Along with it being an ethical imperative to involve people in medical decision making, there is also compelling evidence that this approach results in better clinical outcomes. However, achieving SDM in reality is complex and challenging and it is yet to become ‘everyday’ practice during medical consultations.
Multiple Sclerosis (MS) is a neurodegenerative disease which typically manifests as gradual long term impairment, alongside episodes of symptoms (relapse) and recovery (remission) (although there are more progressive forms with no periods of relapse/remission). It is widely understood as an autoimmune response causing inflammation and damage to myelin sheaths that coat nerve cells. However the exact pathogenic mechanisms remain unknown and there are many areas of contention in theories about MS aetiology. MS is highly heterogeneous; symptoms and triggers vary between individuals and within individuals. Treatment effectiveness is partial and also varies between individuals. MS symptoms are broad and often severe; resulting in profound effects on people’s lives and lifestyles. Medical knowledge and treatment in MS is somewhat limited and symptoms and prognosis are highly personalised, complex and uncertain for people with MS.
Clinical expertise is limited and patient expertise is vital during medical decision making thus MS is an appropriate exemplar condition in which to explore SDM.