Partners in care: shared decision-making between patients and healthcare professionals
This article has been co-authored by Tamara Werner-Kiechle, Therapeutic Area Lead, Neuroscience and Pulmonary Hypertension, Janssen EMEA and Professor Gavin Giovannoni, Professor of Neurology, Barts and London School of Medicine and Dentistry.
Although multiple sclerosis (MS) treatments and management of it have improved considerably over the past 20 years, a diagnosis often brings great uncertainty for people with the disease. Variability in daily symptoms, relapse frequency, residual disability, and how disability will accumulate in the long term all contribute to an ever-changing sense of upheaval. The complex nature of MS means that patients require personalised treatment approaches tailored to their preferences, needs and symptoms.
As a prerequisite to understanding a patient’s needs, it is vital that healthcare professionals accurately understand and interpret a patient’s disease experience. However, for many people living with MS, expressing their symptoms and experiences with their healthcare team can be challenging. Whether that is because of variable and changeable disease activity, the heterogeneity in how symptoms present, or from hidden symptoms like the inability to communicate effectively with ‘brain fog’ – the reasons are multifaceted and complex.
That said, difficulties with communicating about MS should not be a barrier to patients accessing the best treatment approach for them. With an evolving disease like MS, healthcare professionals need to partner with patients in each decision and support active patient engagement. To enable this, patients need to make informed choices based on shared and guided decision-making with their healthcare provider.
What is shared decision-making, and why should clinicians use it?
Shared and guided decision-making involves empowering patients with relevant and engaging information about their disease and sharing appropriate treatment options based on their disease profile and personal factors. Patients and healthcare professionals then make an informed treatment decision together; based on a mutual understanding of treatment options, including benefits and limitations, and how they may impact the patient’s life. This method replaces an outdated and hierarchical engagement, whereby healthcare professionals simply instruct patients on which treatment they will receive.
In MS, this partnership approach is crucial in helping to ensure adherence to a treatment programme and therefore helps to maximise clinical benefit. Studies show that proactive shared decision-making interventions and patient ownership of decisions have positively affected patients’ adherence to specific treatment classes in MS.
Further, patients with MS who are more actively involved in treatment decisions feel a greater responsibility over their care management.- Research demonstrates that shared responsibility also translates into greater satisfaction and improved clinical outcomes.- These study results shape the ultimate goal of any treatment approach.
With a compelling evidence base, it is unsurprising that effective patient engagement has been coined ‘the blockbuster drug of the century’.
Shared decision-making as a route to empowered patients – how can we do it?
For people living with MS, the disease itself can inhibit effective communication. Indeed, MS-related cognitive impairments, affecting up to 70% of patients, are associated with declining verbal fluency and memory, recall ability and information processing. This is why concerted communication efforts through collaborative processes, like shared decision-making, are integral to choosing the right treatment for each person living with MS.
For this reason, healthcare professionals must nurture an environment that allows for and encourages bilateral communication. Asking patients how they experience MS, their treatment goals and future aspirations, balanced with a clinical eye on comorbidities, can empower patients to express themselves and better accommodate their needs.
A key challenge, however, can be around understanding the full spectrum of a patient’s symptoms, including those which are less visible. This means healthcare professionals may not be fully aware of all the problems patients face unless explicitly asked. In many cases, healthcare professionals may need to initiate these conversations. This proactivity can empower patients to share the full range of their symptoms, including those that are not outwardly visible or potentially embarrassing. With this knowledge, clinicians can better understand how the disease affects their patients.
A communicative approach like this allows patients to be treated as a whole person and not just as a product of their disease, facilitating optimised and holistic treatment strategies.
Planning treatment (flexibility) around life’s needs
The clinical significance of shared decision-making should not be undervalued. It enables the flexibility to manage each patient’s needs at different times in their lives.
This flexibility is especially important given that most patients are diagnosed with MS between 20-40 years old: a period in our lives when many of us go through significant personal and professional change. MS treatment approaches also need to consider and aim to reflect these life changes accordingly. Treatment plans must take into consideration the individual’s life stage and keep an eye on the future, including aspirations and life choices.
For example, a patient’s desire to become pregnant may impact their treatment choice. This decision could mean remaining on one treatment plan for a lifelong condition is less probable.
Likewise, there may be some clinical situations, such as severe infections or the need for live vaccinations, where treatment must be stopped for a fully functioning immune system.
Frequent and unpredictable work-related travel or living far away from a treatment centre also makes being tied down to regular infusions difficult, which can be addressed by oral tablets or self-administered injections. Similarly, intensive monitoring requirements may be unsuitable for some patients.
In scenarios like these, knowing the different treatment options, including the possibility to switch or pause a treatment can be key to managing their MS.
Effective and ongoing communication with patients can help with shared decision-making at different points throughout their lives to ensure treatment approaches align with their life goals as they fluctuate.
A powerful precursor for living better with MS
Multiple factors contribute to successful treatment in MS. But the evidence is irrefutable: shared decision-making is a powerful precursor to improved treatment adherence and clinical outcomes.- Knowing a patient’s life goals and then empowering them with information to align with their treatment needs is one more way we can help people with MS live better.
Learn more about shared decision-making in MS and how to incorporate it into clinical practice:
Joint Healthcare Professional and Patient Development of Communication Tools to Improve the Standard of MS Care
Patient Power Revolution in Multiple Sclerosis: Navigating the New Frontier
 Dimitrov LG, Turner B. What’s new in multiple sclerosis? Br J Gen Pract. 2014;64:612-613.
 Dennison L, McCloy Smith E, Bradbury K, Galea I. How do people with multiple sclerosis experience prognostic uncertainty and prognosis communication? A qualitative study. PloS one. 2016;11(7):e0158982.
 Bevan S, Zheltoukova K, McGee R, Blazey R. Ready to work? Meeting the employment and career aspirations of people with multiple sclerosis. London: The Work Foundation. 2011.
 Oreja-Guevara C, Potra S, Bauer B, Centonze D et al. Joint Healthcare Professional and Patient Development of Communication Tools to Improve the Standard of MS Care. Adv Ther, 2019;36:3238–3252. doi: 10.1007/s12325-019-01071-9. PMID: 31487006; PMCID: PMC6822792.
 Ben-Zacharia A, Adamson M, Boyd A, et al. Impact of Shared Decision Making on Disease-Modifying Drug Adherence in Multiple Sclerosis. Int J MS Care. 2018;20(6):287-297. doi: 10.7224/1537-2073.2017-070. PMID: 30568566; PMCID: PMC6295876.
 Glusman M, Bruce A, Thelen J, et al. Discontinuing Treatment Against Medical Advice: The Role of Perceived Autonomy Support From Providers in Relapsing-Remitting Multiple Sclerosis. Ann Behav Med. 2018.
 Colligan E, Metzler A, Tiryaki E. Shared decision-making in multiple sclerosis. Mult Scler J. 2017;23(2):185–90.
 Rieckmann P, Boyko A, Centonze D, et al. Achieving patient engagement in multiple sclerosis: A perspective from the multiple sclerosis in the 21st Century Steering Group. Mult Scler Rel Disord. 2015;4(3):202–18.
 Varytė G, Arlauskienė A, Ramašauskaitė D. Pregnancy and multiple sclerosis: an update. Current opinion in obstetrics & gynecology. 2021;33(5):378.
 Prunty MC, Sharpe L, Butow P, et al. The motherhood choice: A decision aid for women with multiple sclerosis. Patient Educ Couns 2008; 71(1): 108–115.
 Kletenik I, Alvarez E, Honce JM, et al. Subjective cognitive concern in multiple sclerosis is associated with reduced thalamic and cortical gray matter volumes. Multiple Sclerosis Journal–Experimental, Translational and Clinical. 2019;5(1):2055217319827618.
 DeLuca GC, Yates RL, Beale H, et al. Cognitive impairment in multiple sclerosis: clinical, radiologic and pathologic insights. Brain Pathology. 2015;25(1):79-98.
 Oreja-Guevara C, Potra S, Bauer B, et al. Joint Healthcare Professional and Patient Development of Communication Tools to Improve the Standard of MS Care. Adv Ther. 2019;36(11):3238-3252. doi: 10.1007/s12325-019-01071-9.
 Yeandle D, Rieckmann P, Giovannoni G, et al. Patient Power Revolution in Multiple Sclerosis: Navigating the New Frontier. Neurol Ther. 2018;7(2):179-187. doi: 10.1007/s40120-018-0118-8.