Lighting the Path: How Clinicians Can Encourage People with Multiple Sclerosis to Walk Their Own Road - European Medical Journal

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Lighting the Path: How Clinicians Can Encourage People with Multiple Sclerosis to Walk Their Own Road

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Neurology
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Author:
* Agne Straukiene 1
  • 1. Department of Neurology, Torbay Hospital, UK
*Correspondence to [email protected]
Disclosure:

The author has declared no conflicts of interest.

Acknowledgements:

AI was used to enhance language clarity and flow, for formatting and editing assistance, and to identify literature that supported the article’s clinical points.

Received:
27.06.25
Accepted:
07.07.25
Citation:
EMJ Neurol. ;13[1]:76-78. https://doi.org/10.33590/emjneurol/CSNL6289.
Keywords:
Chronic care, digital tools, mobile health, multiple sclerosis (MS), patient empowerment, self-management, shared decision-making.

Each article is made available under the terms of the Creative Commons Attribution-Non Commercial 4.0 License.

INTRODUCTION

Multiple sclerosis (MS) is a complex, lifelong neurological condition that presents with unpredictable symptoms, progressive disability, and fluctuating psychosocial challenges. Managing MS effectively requires more than medical treatment; it demands that people living with the disease develop skills to manage its impact on daily life. Increasingly, research highlights that, when individuals with MS are equipped to self-manage, they experience improved clinical outcomes, enhanced psychological wellbeing, and greater autonomy in healthcare decision-making.1 However, empowering patients is not a passive process. It is an active, structured task for healthcare professionals.

RECOGNISING SELF-MANAGEMENT AS A CORE COMPONENT OF MULTIPLE SCLEROSIS CARE

The concept of self-management in chronic illness is not new, but its application in neurological conditions like MS is still evolving. Studies have consistently demonstrated that patients who engage in self-management strategies, such as symptom tracking, fatigue pacing, and health literacy, show better quality of life and disease coping mechanisms.1-3 Clinicians must therefore treat self-management as a cornerstone of good care, not an optional add-on.

Yet, encouraging a person with MS to self-manage involves more than issuing instructions. It requires a partnership model that blends clinical expertise with a patient’s lived experience. This means shifting from the traditional ‘expert-patient’ hierarchy to a collaborative framework where shared decision-making is central.

INTEGRATING DIGITAL HEALTH TO ENHANCE PATIENT ENGAGEMENT

Digital tools, particularly mobile health platforms, present exciting new opportunities to scale self-management support. A growing number of applications allow patients to log symptoms, monitor relapses, manage medication schedules, and access tailored educational content on MS.4 These platforms are not merely convenient; they can fundamentally change how care is delivered.

For example, some apps facilitate real-time symptom monitoring, enabling earlier clinical intervention. Others offer cognitive behavioural therapy-informed modules or fatigue management courses. Importantly, mobile health solutions can reduce the information gap between appointments, helping patients feel more in control of their condition even outside of the clinical setting.5,6

However, digital literacy, data security, and app quality remain key concerns. Clinicians must guide patients towards evidence-based tools, co-develop usage plans, and actively incorporate patient-reported data into care discussions.

THE ROLE OF THE CLINICIAN: FROM GATEKEEPER TO FACILITATOR

While technology can extend care, it cannot replace the human connection between clinicians and patients. Healthcare professionals, including neurologists, MS nurses, and allied health teams, must become facilitators of self-management. This includes providing clear explanations of disease mechanisms, helping patients navigate uncertainty, and offering tools for fatigue, mobility, and pain management.

Evidence suggests that patients involved in treatment decisions report higher satisfaction, better adherence, and improved health outcomes.7 Shared decision-making is not simply about offering choices; it’s about structuring the consultation to ensure that patients understand their options, values, and preferences.

Clinicians must also take into account the psychological toll of MS. Anxiety, depression, and cognitive changes can affect a patient’s capacity to engage in self-management. As such, self-management support must be holistic, addressing both the physical and emotional dimensions of care.

TRAINING AND SYSTEM-LEVEL CHANGE: ENABLERS OF PATIENT PARTNERSHIP AND AUTONOMY

Effective patient empowerment depends on how well healthcare professionals are trained in communication and behavioural change strategies. Studies show that clinicians may feel underprepared to deliver structured self-management support and require adequate training to improve confidence and effectiveness.8 Integrating this training into medical education and continuing professional development is therefore essential.

Healthcare systems must also evolve to support this model of care. Allocating time during appointments, using structured patient-reported outcome measures, and enabling multi-professional collaboration are all critical. Policies and reimbursement models that recognise the value of self-management could catalyse broader adoption.

LOOKING AHEAD: BUILDING A CULTURE OF PARTNERSHIP

The future of MS care lies not only in advanced therapies, but also in building a culture where people with MS are equal partners in their care and help to create joint communication tools.9 Empowering patients to self-manage is not about shifting responsibility; it’s about offering the tools, trust, and time to enable independence.

Clinicians must commit to embedding self-management support into everyday practice, harnessing digital innovations while maintaining human connection. By doing so, they can transform MS care from a reactive model to a proactive, person-centred partnership.

References
Kidd T et al. A systematic review of the effectiveness of self-management interventions in people with multiple sclerosis at improving depression, anxiety and quality of life. PLoS One. 2017;12(10):e0185931. Taylor SJC et al. A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions (PRISMS – practical systematic review of self-management support for long-term conditions. Health Soc Care Deliv Res. 2014;DOI:10.3310/hsdr02530. Shawli ASJ et al. Fatigue and self-management among multiple sclerosis patients. Am J Nurs Res. 2019;7(4):550-60. Salimzadeh Z et al. Mobile applications for multiple sclerosis: a focus on self-management. Acta Inform Med. 2019;27(1):12-8. Ytterberg C et al. A qualitative study of cognitive behavioural therapy in multiple sclerosis: experiences of psychotherapists. Int J Qual Stud Health Well-being. 2017;12(1):1325673. Whitehead L, Seaton P. The effectiveness of self-management mobile phone and tablet apps in long-term condition management: a systematic review. J Med Internet Res. 2016:18(5):e97. Keenan A et al. Shared decision-making in the treatment of multiple sclerosis: results of a cross-sectional, real-world survey in Europe and the United States. Patient Prefer Adherence. 2024;18:137-49. Mata ÁNS et al. Training in communication skills for self-efficacy of health professionals: a systematic review. Hum Resour Health. 2021;19(1):30. Oreja‐Guevara C et al. Joint healthcare professional and patient development of communication tools to improve the standard of MS care. Adv Ther. 2019;36(11):3238-52.

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