The Evolving Role of the Multiple Sclerosis Nurse Across the Disease Trajectory: A Contemporary Discussion Paper

Objective

This discussion paper examines the multifaceted role of the multiple sclerosis (MS) nurse across the disease trajectory. It highlights the value MS nurses bring to patients, healthcare professionals, and the broader health system. Through holistic, person-centred care, MS nurses play a vital role in promoting optimal outcomes for people living with MS.

Background

Multiple sclerosis is a chronic, neurodegenerative disease with a wide range of complex symptoms. These affect physical, mental, and social functioning, often reducing quality of life (Harris and Halper, 2022). Diagnosis typically occurs between the ages of 20 and 40. Over 37,000 people are currently living with MS in Australia (Campbell et al., 2025). Women are diagnosed at approximately three times the rate of men (Thornton et al., 2024). People with MS often form long-standing relationships with their care team, particularly their neurologist and MS nurse (MS Australia, 2022). Allied health professionals also enhance holistic care when required. These include occupational therapists, physiotherapists, psychologists, social workers, speech pathologists, continence nurses, and dietitians (MS Australia, 2022).

The MS nurse is widely regarded as care coordinator (Meehan and Doody, 2020). Given their specialised disease knowledge, they are often patients' first point of contact for support (Meehan and Doody, 2020). Nurses maintain this contact through telephone calls, face-to-face consultations, and email, tailoring frequency to individual patient needs (MS Australia, 2022). A recent study by MS Australia (2022) of 1,417 patients examined this contact over 12 months. It found 40.1% had phone consultations with their MS nurse, 39.8% attended outpatient consultations, and 26.7% communicated via email. Overall, 78% rated this input as helpful, while only 2.6% found it unhelpful (MS Australia, 2022).

This accessibility has measurable benefits. Specialist MS nurses reduce reliance on more costly services (MS Australia, 2022; Campbell et al., 2025). These include general practitioner and neurologist consultations, emergency department presentations, and hospital admissions. They also offer more timely, accessible support than these services can typically provide (MS Australia, 2022; Campbell et al., 2025). Urinary tract infections illustrate this well: they are a leading cause of emergency department admissions in people with MS (Li et al., 2020). These infections often present with complex neurological, urological, and systemic symptoms. Targeted patient education and coordinated care management from MS specialist nurses can prevent many of these admissions (Li et al., 2020). Despite this, Campbell et al. (2025) estimate nearly 12,000 Australians with MS currently lack access to an MS nurse. This gap carries both a health and an economic cost, the 'MS Prevalence and Health Economic Impact' report argues. Universal access would likely improve outcomes and deliver savings. Reduced access to MS nursing is therefore linked to poorer health outcomes and to patients seeking more urgent, costly care (MS Australia, 2022; Campbell et al., 2025).

MS nurses and neurologists work collaboratively to deliver coordinated, comprehensive care (Meehan and Doody, 2020). Consultation time with neurologists is limited, so MS nurses are well placed to provide additional, high-quality information and support (Fragkoudi et al., 2023). Neurologists themselves recognise this value. A small Australian study of seven neurologists found most acknowledged the MS nurse's contribution to patient management (Price et al., 2021). Meehan and Doody (2020) similarly describe MS nurses as highly skilled, sought-after specialists, though the workforce remains limited and demands strong time-management skills. Changes to funding models have nonetheless reduced MS nurse numbers across Australia in recent years (MS Australia, 2022). The 'MS Nurse Care in Australia' report confirms a nationwide shortage, finding that patients without MS nurse access experience poorer outcomes. These include higher disability, greater symptom severity across thirteen common MS symptoms, and lower health-related quality of life. The report recommends increased funding to expand the workforce and improve access (MS Australia, 2022).

Discussion

The MS nurse's role is increasingly recognised in international literature. This section examines five key domains of practice: education, monitoring, symptom management, advice and referrals, and support and advocacy. This synthesis draws predominantly on Australian literature, reflecting the funding and workforce context motivating this paper. The five domains likely translate across the broader Australasian context. However, jurisdictional differences in funding models and scope of practice should be considered when applying these findings elsewhere.

Education

Patient education is central to the MS nurse role (Butzkueven et al., 2025; Van Hijfte et al., 2025). Neurologist appointments prioritise clinical assessment, medication review, and symptom management, so consultation time for broader education is limited (Grech et al., 2021a). MS nurses fill this gap, providing complementary education that reduces the need for additional neurologist contact (MS Australia, 2022). A small Australian study of 22 people with MS found patients highly valued these interactions and gained useful information from them (Fragkoudi et al., 2023).

Neurologists recognise this value too: one study of seven neurologists highlighted MS nurses' usefulness in overall patient management (Price et al., 2021). Another, involving nine neurologists, found they often rely on MS nurses to address specific topics, such as family planning (Fragkoudi et al., 2024). Neurologist and MS nurse together enable cohesive patient care (Van Hijfte et al., 2025).

Education about the disease itself underpins the nurse-patient relationship (Meehan and Doody, 2020; Thornton et al., 2024). The trust built in this relationship fosters engagement with the diagnosis and encourages open communication (Meehan and Doody, 2020). This supports improved self-management and independence (Van Hijfte et al., 2025), provided education is adapted to each patient's cognitive, emotional, and physical capacity (Harris and Halper, 2022).

Core educational areas include promoting wellness, optimising function, and enhancing quality of life (Price et al., 2021; Harris and Halper, 2022). Nurses also advise on brain health measures, including lifestyle modifications, comorbidity management, and smoking cessation (Butzkueven et al., 2025). The 'Brain Health – Time Matters' 2024 report found these measures reduce disability progression and improve long-term outcomes (Butzkueven et al., 2025).

Family planning and contraception are key considerations for people with MS. This is particularly true for those taking disease-modifying therapies (DMTs) that may be teratogenic, given MS is commonly diagnosed during reproductive years (Fragkoudi et al., 2023). Fragkoudi et al. (2023) accordingly advocate integrating family planning discussions into routine specialist reviews. A qualitative study of 10 MS nurses found they are more likely than neurologists to initiate these conversations, underscoring the importance of effective communication. Some patients, however, are instead referred to their general practitioner, reflecting variability in practice (Fragkoudi et al., 2024). MS nurses previously relied on the UK Consensus on Pregnancy in MS for guidance (Fragkoudi et al., 2024). The first Australian and New Zealand Consensus Statement was released in early 2025. It now offers locally relevant clinical guidelines to help standardise this care (Shipley et al., 2025b).

DMT education is a further core responsibility. Fifteen DMTs are currently approved for MS treatment in Australia (MS Australia, 2026). Treatment decisions are made collaboratively between patient, neurologist, and MS nurse. The nurse typically provides additional education on each option's benefits and risks (Shipley et al., 2025a). MS nurses draw on specialised treatment knowledge to address efficacy, tolerability, administration, and adverse effects, promoting adherence (Harris and Halper, 2022).

Burke and Patching (2021a) emphasise the MS nurse's pivotal role in translating complex pharmacological information into accessible language. This allows patients to make informed decisions. These conversations typically follow the neurologist's recommendations, tailored to individual needs and preferences (Burke and Patching, 2021a).

Diet and nutrition are a growing focus within this education, given their role in supporting brain health (Allogmanny et al., 2025; Ware-Maloney et al., 2025). Patients often seek dietary advice from their treating specialist, including their MS nurse. Allogmanny et al. (2025) argue this advice should be embedded in routine MS care. MS nurses are well placed to reinforce nutritional recommendations, though additional training would aid their confidence with these conversations (Ware-Maloney et al., 2025). Referral to a dietitian should still be considered where appropriate (Allogmanny et al., 2025).

Symptom management education similarly demands a holistic approach, given how complex and variable MS symptoms are (Thornton et al., 2024). Repeated contact and continuity of care position MS nurses well for this role (Meehan and Doody, 2020). This allows ongoing education, and recognition of when increasing symptoms may signal disease progression requiring escalation (Harris and Halper, 2022). The 'MS Nurse Care in Australia' report (n = 1,417) found patients with MS nurse input demonstrated enhanced self-care and self-management. Those without access reported worse severity across 13 common MS symptoms. This was a 1.23-fold higher rate of self-reported progression over 12 months (95% confidence interval: 1.08–1.41), after adjusting for confounders (MS Australia, 2022). Effective symptom management enables patients to lead more productive lives, the report notes (MS Australia, 2022).

Monitoring

The growing number and complexity of DMTs have made safety monitoring a core MS nurse responsibility (Del Río-Muñoz et al., 2022; MS Australia, 2022). This is particularly true for high-efficacy therapies, which require complex logistics and ongoing oversight (Meehan and Doody, 2020; MS Australia, 2022). MS nurses support this through active participation in DMT management programs, educating patients on the rationale behind monitoring protocols (MS Australia, 2022). Though time-consuming, this process also creates valuable opportunities for further patient engagement (Burke and Patching, 2021a).

This monitoring role adds to an already expanding and demanding scope of practice (Meehan and Doody, 2020). Burke and Patching (2021b) note that most MS nurses lack prescribing rights, yet they still organise and coordinate DMT monitoring alongside growing patient caseloads. This administrative burden may detract from direct patient care, Meehan and Doody (2020) warn. Growing scope and limited workforce combine to place MS nurses, who often work in professional isolation, at risk of burnout (Meehan and Doody, 2020).

Without increased funding, MS Australia (2022) warns, the MS nursing workforce cannot expand. Patients then face delayed care, safety risks, and greater risk of disability progression, with poorer outcomes adding further burden to the broader health system. Sustained investment in this workforce is therefore essential to safety, quality, and continuity of care (MS Australia, 2022).

Symptom Management

Fatigue is among the most common MS symptoms, affecting daily functioning, relationships, and quality of life (Schermann et al., 2023; Thornton et al., 2024). It often causes stress and frustration when it prevents activities from being completed (Schermann et al., 2023). Women experience greater levels of fatigue than men, becoming more pronounced as MS progresses (Schermann et al., 2023). MS nurses assess and manage fatigue by educating patients on self-care (Thornton et al., 2024). They recommend behavioural modifications such as exercise and diet and refer to occupational therapy for energy-conservation strategies (Harris and Halper, 2022). Medication management is another option for the treating doctor's consideration (Harris and Halper, 2022).

Cognitive impairment affects 40–70% of people with MS, can emerge early in the disease course, and predicts increased disability (Lechner-Scott et al., 2023). Concentration and memory issues are common, affecting job performance, productivity, and employment retention (Lechner-Scott et al., 2023; Schermann et al., 2023). Even mild cognitive decline can significantly affect every day functioning, so regular monitoring is recommended to objectively detect deterioration. This includes brief screening tools such as the 90-second Symbol Digit Modalities Test (Lechner-Scott et al., 2023). Assessing cognitive change over time is a necessary MS nursing skill, Harris and Halper (2022) note. Detecting deterioration should trigger referral to a neuropsychologist or occupational therapist for cognitive rehabilitation, Lechner-Scott et al. (2023) emphasise.

Bladder and bowel dysfunction are significant MS symptoms. This includes urinary frequency, urgency, hesitancy or incontinence, and faecal urgency, constipation, or incontinence (Harris and Halper, 2022). These negatively affect daily activities and quality of life (Harris and Halper, 2022). A moderate-sized Spanish study (n = 368) found bladder symptoms in 67% of people with MS (Artola et al., 2023). Because these symptoms can cause embarrassment, preserving patient dignity while providing support is essential (Schermann et al., 2023). MS nurses discuss these concerns directly with patients (Thornton et al., 2024) and refer to continence nurses for further input (MS Australia, 2022). They also consider lifestyle modifications, continence products, medications, or further investigation as needed (Harris and Halper, 2022).

Incontinence can coincide with sexual dysfunction, including slower arousal, erectile dysfunction, reduced lubrication, or difficulty achieving climax. It is more common in women and compounded by fatigue and muscle weakness. This has a significant impact on sexuality, relationships, and quality of life (Schermann et al., 2023). The trusted MS nurse plays a key role in creating a safe environment for patients to raise these concerns (Schermann et al., 2023).

Walking and balance difficulties are common, including pain, weakness, and footdrop (Harris and Halper, 2022). Maintaining lower limb function is therefore a priority for this cohort (Artola et al., 2023). Spasticity, causing stiffness, cramps, and muscular spasms, directly affects mobility and gait (Artola et al., 2023; Özkan et al., 2023). MS nurses monitor and discuss these changes, promote exercise, and refer to physiotherapy (MS Australia, 2022) and psychology, given the psychological impact of physical disability (Özkan et al., 2023). The 'MS Nurse Care in Australia' report found worse physical disability outcomes among patients without MS nurse access. This reinforces the role's impact on outcomes (MS Australia, 2022).

Depression affects roughly half of people with MS over their lifetime. This is two to three times the general population's rate (Grech et al., 2021b). Treatment includes antidepressant medication and psychotherapy (Hunter et al., 2021; Grech et al., 2021b). A moderate-sized Australian study (n = 217) found up to 68% of patients with depressive symptoms were not on antidepressant medication. Of those who were, 55% remained undertreated (Grech et al., 2021b). This gap highlights the MS nurse's essential role in depression assessment, education, and monitoring. This can include brief tools such as the 'Two Question Screen', or more in-depth screening where time and training allow (Grech et al., 2021b). The trust built through continuity of care makes patients more likely to share their feelings with their MS nurse (Witzig-Brändli et al., 2022). A small Australian study (n = 26) found most participants comfortable with MS nurse-led depression screening, welcoming open communication at routine consultations (Hunter et al., 2021). MS nurses can then recommend general practitioner or mental health professional involvement where appropriate (Marck et al., 2022). Patients without MS nurse access show higher depression and anxiety levels and lower health-related quality of life, reinforcing the value of this role (MS Australia, 2022).

Advice and Referrals

The breadth of MS symptoms leads many patients to seek timely advice from their specialist team. This covers symptom and relapse management (MS Australia, 2022; Thornton et al., 2024). Burke and Patching (2021a) highlight the MS nurse's essential role in assessing patient concerns, providing expert advice, and proactively coordinating care to prevent unnecessary emergency department visits. This includes triaging symptom and relapse-related concerns, arranging urgent reviews, and initiating interventions as needed (MS Australia, 2022).

Patients value this contact for its specialist knowledge and personalised care. This often extends to supporting family members and carers, and to the continuity it provides as a first point of contact (Meehan and Doody, 2020). MS nurse advice aligns with neurologist recommendations and DMT product information (Burke and Patching, 2021a). This extends beyond acute issues to guidance on healthy lifestyle practices, including stress management (Thornton et al., 2024). This also includes diet, exercise, and continence (van den Berg et al., 2024), smoking cessation (Grech et al., 2021a), and mental health concerns such as anxiety and depression (Marck et al., 2022). This guidance helps people with MS live productive, engaged lives (MS Australia, 2022).

Referral to other healthcare professionals is a further key function (Burke and Patching, 2021a; Harris and Halper, 2022; van den Berg et al., 2024). A study of 25 MS nurses (from an estimated 90 in the MS nurses Australasia Incorporated network in 2020) found nurses promptly refer patients when concerns fall outside their scope (Burke and Patching, 2021a). This ensures timely intervention by the most appropriate provider, reflecting the holistic, patient-centred model underpinning MS nursing (Burke and Patching, 2021a). MS nurses have an in-depth understanding of individual patient needs. This positions them to coordinate referrals effectively. It reinforces their leading role in achieving optimal outcomes for people living with MS (Harris and Halper, 2022; van den Berg et al., 2024).

Support and Advocacy

MS nurses support neurologists in caring for patients with MS, particularly regarding DMTs (Price et al., 2021; Del Río-Muñoz et al., 2022). They build trust and continuity of care. This underpins emotional, psychological, counselling, medical, and social support (van den Berg et al., 2024), as well as wellness and lifestyle support (Harris and Halper, 2022). Support extends to family planning (Fragkoudi et al., 2024) and smoking cessation (Grech et al., 2021a). Nurses also provide symptom and treatment guidance, and family and carer advice (Meehan and Doody, 2020). Further assistance includes self-management education and referral to support services (MS Australia, 2022). MS nurses are patients' first point of contact for triaging concerns. This allows them to both optimise patient care (Meehan and Doody, 2020; Smyth et al., 2021) and reduce the neurologist's workload (MS Australia, 2022).

MS nurses advocate for patients at every stage of the disease, prioritising their needs throughout (Burke and Patching, 2021a; Witzig-Brändli et al., 2022). This ranges from ensuring timely, appropriate treatment, including referrals and DMTs (Harris and Halper, 2022), to helping patients navigate the health system (Thornton et al., 2024). It also includes promoting self-care and completing the various forms and documents patients require (Burke and Patching, 2021a). A small Swiss study (n = 15) found patients valued knowing their MS nurse functioned as their advocate, expressing high levels of trust (Witzig-Brändli et al., 2022). Together, these actions demonstrate the MS nurse's central role in supporting and advocating for patients throughout their disease trajectory.

The 'MS Nurse Care in Australia' report quantifies this value (MS Australia, 2022). It compares disability outcomes, symptom severity, self-reported disease progression, and health-related quality of life for patients with and without MS nurse access. Its findings support an expanded MS nurse workforce in Australia. This would improve access, prevent burnout, and optimise outcomes by raising awareness of the role's importance (MS Australia, 2022).

Conclusion

Multiple sclerosis is a complex disease, requiring the MS nurse to play a pivotal, multifaceted role in each patient's care. Because symptoms and care needs vary widely between patients, MS nurses provide individualised, holistic care to promote optimal outcomes. This includes educating patients on MS, DMTs, family planning, and symptom management alongside the neurologist. It also includes monitoring DMT safety and MS symptoms through assessment, screening, and discussion. Nurses advise on symptom and relapse concerns while coordinating care and referrals. They also support both patients and neurologists while advocating for patients throughout.

Built on trust and continuity of care, this therapeutic partnership makes MS nurses a first point of contact by phone, email, or in person. Nurses respond to questions and relapse concerns in ways that reduce unnecessary emergency department presentations and hospital admissions. Yet Australia's MS nurse workforce is shrinking, directly harming patient outcomes. Reversing this trend requires a funded national MS nursing workforce strategy, rather than incremental funding alone. This includes staffing ratios tied to caseload complexity, and formally funded MS nurse positions embedded within neurology service models. Without this investment, the gains in access, safety, and quality of life documented throughout this paper are unlikely to be sustained.