The concept of shared decision-making (SDM) has gained momentum in recent years as the preferred approach to MS care. The emergence of SDM two decades ago can be traced back to an acknowledgement of the greater role patients wanted to play in their care decisions, in part due to the recognition that patients’ treatment goals may differ from those of the clinician (Kumar et al. Patient Prefer Adherence 2021;15:1515-1527); and a proliferation of treatments that were similar so that medication choices were preference-sensitive. The advent of social media provided a further spur to patients’ notions of empowerment and participatory medicine (Kantor et al. Neurol Ther 2018;7:37-49).
SDM has been described as an attempt to narrow the gap between evidence-based medicine and patient-centred medicine (Hamann et al. Nervenarzt 2006;77:1071-1076). In clinical practice, the objectives are to enable patients to make more informed decisions, engage them more fully in their care, and improve treatment satisfaction and adherence.
While many clinicians now use elements of shared decision-making in practice, a more formal SDM model has been proposed (Ubbink et al. Front Neurol 2022;13:1063904).
- Inform the patient that care decisions will need to be made and the patient’s input will be essential to this process (i.e. the patient is a valued member of the team).
- Explain the treatment options, their pros and cons, and ask the patient to share his/her preferences and values (e.g. life circumstances, work/school situation, perceptions/concerns about treatment, personal goals, etc.)
- Incorporate the patient’s preferences into the discussion about medications and work toward a decision that is satisfactory to the patient.
A more practical approach may be to ask patients to discuss their values and goals about their care prior to detailing the available treatment options (Colligan et al. Mult Scler 2017;23:185-190). This would enable the clinician to pare down the list of treatment options before discussing the benefits and risks of each. It may also address the concern that the physician’s influence may prompt some patients to select a therapy that is not their preferred option (Mendel et al. Health Expect 2012;15:23-31).
Ubbink and colleagues noted that clinicians are generally well-skilled in discussing therapeutic options, including the benefits of treatment (effect on relapse frequency/severity, effects on progression), convenience (dose frequency and route of administration, self-dosing at home vs. clinic administration), side effect profile, and pregnancy considerations.
What may be more challenging is the process of having the patient weight their values and priorities and reconciling these preferences with a shared decision on the optimal treatment. One suggestion is to use ranking scales when asking questions about drug attributes (e.g. How important is the effect of the medication on reducing relapses/ease of use/risk of a complication for you?). Open-ended questions (e.g. What are important things for you in daily life that may affect your decision?) may also encourage patients to share their values with MS team members and arrive at a decision that is congruent with their preferences (Ubbink 2022).
Numerous decision aids have been proposed to assist patients in arriving at a decision that reflects their preferences. A core component is evidence-based information about each of the treatment options, including any uncertainty about the data or their interpretation (Ubbink 2022). It is also important to include a method to clarify the patient’s values so that the patient’s preferences are addressed and he/she does not come to regret the decision (Witteman et al. Med Decision Making 2021;41:801-820). ‘Values clarification’ may include the patient’s preferences (e.g. dose frequency or route of administration), concerns (about health status, side effects) and issues that might affect a decision (e.g. fitting the treatment plan into a work schedule). An example is the CRIMSON Project Decision Aid developed by the University of Leeds (https://relapsingmsdecisions.com/; see also the University of Ottawa webpage on decision aids at https://decisionaid.ohri.ca/AZinvent.php).
A Cochrane analysis (105 studies, N=31,043) reported that when decision aids were used in different clinical contexts (MS not cited), patients reported that they were more knowledgeable and better informed, were clearer about their values, and had a more accurate perception of treatment-related risk (Stacey et al. Cochrane Database Syst Rev 2017; 4:CD001431). There was also less decisional conflict related to feeling uninformed, as well as a positive effect on physician-patient communications.
Use of patient-reported outcome measures (PROMs)
PROMs can provide a more holistic view of patients’ general functioning and can be employed in the ongoing assessment of treatment effectiveness and tolerability (Rieckmann et al. Mult Scler Relat Disord 2015;4:202-218). While PROMs can enhance SDM by providing data that may be more relevant to the patient, the validity of individual tools has not been well established, and concerns have been raised about how physical and cognitive impairments may affect the reliability of patient self-reports (Reitzel et al. Heliyon 2022;8:e09637). Further work is needed to determine how PROMs can be most usefully employed in practice to evaluate the impact of treatment on a range of outcomes (D’Amico et al. Mult Scler Relat Disord 2019;33:61-66).
The SDM process may require some adjustments for patients who are changing treatment regimens. Patients may need additional information on the disease course and prognosis, and a more thorough discussion of the benefits and risks of treatment. For example, a recent study found that treatment switches raised concerns among patients about the effectiveness of treatment and fears about the onset of secondary-progressive disease (Manzano et al. Mult Scler Relat Disord 2020;46:102507). It may be useful to address these concerns earlier in the disease course and revisit them at the time of switching.
SDM: strengths and limitations
SDM has strengths and limitations and is not without some controversy (Yeandle et al. Neurol Ther 2018;7:179-187). It may not be possible for clinicians to communicate their expertise within the limited time available during a consult and patients’ views may be adversely influenced by online information sources. To this may be added the concern that third-party payors, by restricting the available treatment options, interfere with the SDM process and limit patient choice to less preferred options (Bourdette et al. Neurol Clin Pract 2016;6:177-182).
Moreover, as noted by the MS in the 21st Century Steering Group, SDM may not be the best option for every patient – how best to employ it will be as individualized as the patients themselves (Rieckmann 2015). SDM has the potential to encourage patients to be more actively engaged in their health choices, enhance the physician-patient relationship, and improve clinical outcomes. But an important part of the art of SDM will also be to determine the level of involvement the individual patient wants to have when it is time to make decisions about starting, switching or stopping therapy.