The role of information in therapeutic decision-making for adults living with Multiple Sclerosis (MS)

Abstract

Background: People with MS (pwMS) are confronted with 16 therapies. These come with risks that have led to drug withdrawals and changes to prescribing regulations. Patient autonomy is seen as desirable and has challenged the role of the health care professional (HCP). Greater scrutiny of the decisional process is necessary to determine if complex decision-making can be influenced. Methods: i) Attendees to an MS conference (n=105) and a cohort of patients on treatment (n=76) were contacted about their current treatment status and if they had decisional conflict (DC). ii) Prospective study (n=73) of pwMS offered treatment, used instruments to map pwMS through their decision post-consultation. iii) Results informed a film aimed at pwMS (n=1001) and a comparator group without MS (n=148). Participants reviewed the film with the primary aim of measuring understanding of the concepts portrayed. Results: i) Data from the cohorts in methods i-ii (n=254) were compared. The treatment status ‘not satisfied’ was present in 113/254 (44%) and 135/254 (53%) had DC. ii) DC was significantly increased in a treatment naïve subgroup 75% (27/36), p=0.013. iii) In the ‘offered treatment’ study, making a treatment decision took a mean of 29 days (range 0-308). Multivariate regression analysis found those with less confidence in their healthcare decision-making were more likely to have DC (n=72, SURE scale; adjusted R2 0.11, p=0.02; SURE-subscale adjusted R2 0.04 p=0.04; DCG adjusted R2 0.04 p=0.04). iv) The neurologist perceived significantly more consensus during the consultation (39.24±6.54) than pwMS (31.22±10.64; p<0.001). A multivariate regression analysis found that shared decision making (SDM) was associated with lower DC alongside patient engagement (n=67, adjusted R2 0.382; p<0.001). v) There was a high level of film understanding in the total population (85%). vi) A multivariate regression analysis found that ‘education’ was associated with film ‘understanding’ (n=892, adjusted R2 0.023, p=0.000). This meant having less education was associated with increased understanding. A one point increase in education was associated with a .170 reduction in understanding. Conclusions: i) PwMS have high levels of DC when making treatment decisions. ii) Low engagement is associated with increased DC but an HCP consultation with good SDM is associated with lower DC. iii) A film produced a high level of understanding in both MS and non-MS populations. Those less educated had the highest understanding overall.Open Acces

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