Feeling “Dismissed” & Imposed Consumerism: accounts of patient-professional interactions from people with Multiple Sclerosis

Problem

Recent decades have seen the promotion of patient involvement during patient-clinician interactions in both primary and secondary healthcare settings. The concept of 'shared decision making' (SDM) has been advocated as best practice. During SDM, patients and clinicians both bring expertise to the consultation, working in equal partnership to decide the best course of action. However in reality, SDM appears to be a complex and challenging approach, which is not routinely adopted. Multiple Sclerosis (MS) is a heterogeneous neurodegenerative condition, with no cure and limited treatments available. Such uncertainty and complexity means MS is an interesting long term condition to explore relevance of, and barriers to, SDM.

Approach

22 in-depth semi-structured qualitative interviews were carried out with people with MS across the UK to explore experiences of decision making and interactions with clinicians. Purposive sampling was carried out and data saturation determined sample size. A modified grounded theory approach was used with aim to draw findings from content participants thought relevant. Interview data were thematically analysed to identify problematic areas. Using an iterative approach, areas were discussed further with 6 consultant neurologists during qualitative structured interviews. Framework analysis was carried out on neurologists’ interviews to examine their interpretations and potential solutions.

Findings

Two problematic patterns were identified in MS participants’ accounts. Firstly, ‘Imposed Consumerism’ refers to how when deciding which disease modifying therapy (DMT) to start, MS participants found they were given lots of information, no advice and made such decisions independently. Participants felt unprepared and unsupported. Secondly, when participants described their clinicians as dismissive, this appeared to lead to some patients opting out of subsequent consultations. In response to ‘imposed consumerism’, many of the neurologists said they preferred patients to make this decision with aims for best practice. Patient centred care rhetoric was used to justify why patients ought to decide (alongside clinical equipoise). They varied in willingness to accommodate patients’ involvement preferences and suggested measures to make the decision easier. In response to ‘feeling dismissed’ the neurologists thought alternative theories and treatments for MS which conflict with mainstream medicine were common. Such topics within consultations were challenging; there was concern that discussion may be interpreted as endorsement (to some extent) and some judged it as outside their professional remit. Many said that ideally they could explore patients’ motivations and critically appraise information, but all agreed that lack of time and resources made this impossible.

Consequences

Although patient involvement is considered best practice, in reality the way in which it is enacted is complex and requires careful consideration. Potential barriers and pitfalls identified within this study suggest a lack of clarity in how to respond to challenges and further investigation into how patient involvement is enacted in reality is needed.