Shared decision-making in patients with multiple sclerosis

Abstract

Multiple sclerosis (MS) is a chronic and progressive neurological disorder impacting physical, cognitive, and psychosocial health. The disease course, severity, and presence of symptoms differ within and between persons over time and are unpredictable. Given the preference-sensitive nature of many key decisions to be made, and the increasing numbers of disease-modifying therapies, shared decision-making (SDM) with patients seems to be key in offering optimum care and outcomes for people suffering from MS. In this paper, we describe our perspective on how to achieve SDM in patients with MS, following key SDM-elements from established SDM-frameworks. As for deliberation in the clinical encounter, SDM communication training of professionals and feedback on their current performance are key aspects, as well as encouraging patients to participate. Concerning information for patients, it is important to provide balanced, evidence-based information about the benefits and the harms of different treatment options, including the option of surveillance only. At the same time, attention is needed for the optimal dosage of that information, given the symptoms of cognitive dysfunction and fatigue among MS-patients, and the uncertainties they have to cope with. Finally, for broader communication, a system is required that assures patient preferences are actually implemented by multidisciplinary MS-teams. As SDM is also being implemented in many countries within the context of value-based health care, we consider the systematic use of outcome information, such as patient-reported outcome measures (PROMs) and Patient Decision Aids, as an opportunity to achieve SDM.

Treatment Patterns and Unmet Need for Patients with Progressive Multiple Sclerosis in the United States: Survey Results from 2016 to 2021

“…There is no cure [13,14], and the currently available treatments may slow disability progression but do not halt or reverse it [11,12]. Shared decision-making between the patient and physician should be used to weigh the benefit-risk profile of available treatment options in order to provide optimum care and outcomes for patients [15].…”

Decisional Conflict Regarding Disease-Modifying Treatment Choices Among Patients with Mid-Stage Relapsing-Remitting Multiple Sclerosis

“… 42 RRMS is a paradigmatic example for investigating the decisional conflict due to the unpredictable trajectory of the disease and the numerous treatment options available, each differing in efficacy, safety, and administration characteristics. 4 , 7 , 8 Decisional conflict arises when patients feel unsure about which treatment option to choose, have conflicting values or preferences, or lack adequate information to make a well-informed decision, fear of making the wrong choice, feelings of regret, and the tendency to blame physicians for unfavorable outcomes. 9 , 10 , 12 …”

“… 1 , 5 The expanding repertoire of available therapies, each characterized by its unique efficacy, safety considerations, and method of administration, complicates the decision-making process. 1 , 8 In addition, patient preferences play a crucial role in decision-making, as MS patients often have unique experiences and priorities that can significantly influence their treatment choices. 9 Factors such as lifestyle, personal goals, the impact of treatment side effects, and desired level of involvement in managing the disease vary from patient to patient over time and are influenced by emotional, social, and experiential factors.…”

Shared decision-making between paediatric haematologists, children with sickle cell disease and their parents: an exploratory study

“…Studies show that maintaining the quality and consistency of risk communication can be more challenging when a chronically ill child’s best interests and parent-physician intercultural challenges are not addressed [ 15 , 16 ]. The quality and consistency of this information exchange also affects the quality and outcome of a decision-making process on behalf of children [ 17 – 20 ]. Apart from communication and language barriers, actual or perceived health illiteracy among parents also impacts their level of understanding of the information provided about treatment options, risks, and benefits.…”