Skip to content
Inciteful Med

Navigating the Future: Prognosis, Monitoring, and Palliative Care

Last updated:

Multiple System Atrophy (MSA) is a rapidly progressive neurological condition with a median survival of 6 to 9 years. Early integration of palliative care and advance care planning is crucial to manage severe symptoms, prevent complications like aspiration pneumonia, and improve quality of life.

Key Takeaways

  • • The median survival for Multiple System Atrophy is 6 to 9 years from the onset of symptoms, though individual progression varies.
  • • Neurologists use the UMSARS scale to track rapid changes in mobility, swallowing, and autonomic body functions.
  • • Late-stage MSA often involves critical complications like severe swallowing difficulties, aspiration pneumonia, and breathing obstructions.
  • • Starting palliative care early helps manage the heavy symptom burden and improves daily quality of life, which is distinct from end-of-life hospice care.
  • • Advance care planning ensures your specific treatment preferences for feeding tubes and breathing support are honored during a medical emergency.

Thinking about the future with Multiple System Atrophy (MSA) can be difficult, but understanding the typical path of the disease allows you and your family to make informed, empowered choices. MSA is a rapidly progressive condition, and while every person’s journey is unique, being proactive about your care can significantly improve your quality of life [1][2].

What to Expect: The Disease Course

MSA moves faster than many other neurological conditions. On average, the median survival from the time symptoms first appear is between 6 and 9 years [3][4]. It is important to know that this is a median, and many individuals live longer while prioritizing symptom management and support.

Doctors often use the Unified Multiple System Atrophy Rating Scale (UMSARS) to track how the disease is changing [5]. This scale monitors everything from your ability to walk and swallow to your blood pressure and bladder control [6][7]. Because progression can be quick—sometimes showing measurable changes in as little as six months—regular check-ins with your neurology team are essential [5][8].

Late-Stage Complications

As the disease advances, the focus of care often shifts to managing “critical events” and preventing complications [9]. Common challenges include:

  • Severe Dysphagia (Swallowing Difficulty): This is one of the most significant late-stage issues [10]. It can lead to aspiration pneumonia (when food or liquid enters the lungs), which is a leading cause of death in MSA [4][11].
  • Respiratory Issues: Problems like stridor (high-pitched breathing sounds) or vocal cord paralysis can cause sudden breathing obstructions [12][13].
  • Recurrent Infections: Weakened muscles and bladder issues can make patients more prone to repeated urinary tract infections (UTIs) and lung infections [4][14].

Mental Health and Support

The psychological and emotional toll of the disease cannot be overstated. Being diagnosed with a rapidly progressing, incurable disorder is traumatizing, and feelings of depression or anxiety are incredibly common [15]. Connecting with patient advocacy groups—such as the MSA Coalition—can provide essential community support, resources, and connections to others who understand exactly what you are going through [16].

Palliative Care: Not Just for the End of Life

One of the most important steps you can take is to integrate palliative care into your team early. It is a common misconception that palliative care is the same as hospice [17].

  • Palliative Care: This is “extra layer of support” that can be started at any time, even right at diagnosis [17]. It focuses on relieving the high symptom burden of MSA—such as pain, anxiety, and sleep issues—and improving your daily life [18][19].
  • Hospice: This is a specific type of palliative care reserved for the final months of life, when the focus shifts entirely to comfort [16].

The Power of Advance Care Planning (ACP)

Advance Care Planning involves having honest conversations about your future medical preferences before an emergency happens [20]. Research shows that while 76% of MSA patients have thought about their end-of-life wishes, only 38% have actually discussed them with a doctor [16].

Starting these conversations early ensures that:

  1. Your Voice is Heard: You decide which treatments you want (like feeding tubes or major surgeries) and which you don’t [16].
  2. Caregiver Stress is Reduced: By documenting your wishes now, you spare your loved ones from having to make agonizing “best guess” decisions during a crisis [16][2].
  3. Emergencies are Managed: You can have a plan in place for sudden events, such as a severe breathing obstruction, so that your care aligns with your personal values [21].

Frequently Asked Questions

What is the average life expectancy for someone with Multiple System Atrophy?
The median survival for MSA is typically between 6 and 9 years from when symptoms first appear. However, this is an average, and proactive symptom management and strong support systems can significantly improve your quality of life during this time.
How do doctors track the progression of MSA?
Doctors commonly use the Unified Multiple System Atrophy Rating Scale (UMSARS) to monitor the disease. This assessment tracks changes in daily functions, such as your ability to walk, swallow, and maintain blood pressure and bladder control.
What is the difference between palliative care and hospice for MSA?
Palliative care provides an extra layer of support to relieve heavy symptom burden and can begin immediately upon diagnosis. Hospice is a specific type of palliative care focused entirely on comfort during the final months of life.
Why is advance care planning important for MSA patients?
Advance care planning allows you to clearly outline your medical wishes before an emergency occurs. This ensures your choices regarding treatments, like feeding tubes or breathing machines, are respected and reduces the decision-making burden on your loved ones.
What are common late-stage complications of MSA?
In later stages, individuals with MSA often experience severe swallowing difficulties, which can lead to aspiration pneumonia. Other common complications include breathing obstructions, such as a high-pitched sound called stridor, and recurrent urinary tract or lung infections.

Questions for Your Doctor

  • • When should we consider a referral to a neuropalliative care specialist to help manage my specific symptoms?
  • • How do you typically monitor my UMSARS score to track how quickly my condition is progressing?
  • • What signs should we look for that might indicate a high risk for pneumonia or other infections?
  • • What are your recommendations for when to discuss a feeding tube (PEG) or breathing support (tracheostomy) before they become emergencies?
  • • Can you help us document my care preferences in my medical record so they are clear to all my providers?

Questions for You

  • • What does 'quality of life' mean to me right now, and what activities are most important for me to maintain?
  • • Who do I want to make medical decisions for me if I am ever unable to speak for myself?
  • • Have I shared my thoughts about future medical treatments, like breathing machines or feeding tubes, with my family?
  • • How can I better support my caregiver as my needs for assistance increase?

Want personalized information?

Type your question below to get evidence-based answers tailored to your situation.

References

  1. 1

    Symptomatic Care in Multiple System Atrophy: State of the Art.

    Grossauer A, Sidoroff V, Heim B, Seppi K

    Cerebellum (London, England) 2023; (22(3)):433-446 doi:10.1007/s12311-022-01411-6.

    PMID: 35581488
  2. 2

    Multiple System Atrophy Caregivers' Experience: A Mixed Methods Study.

    Langford B, Zhou Y, Miyasaki JM

    The Canadian journal of neurological sciences. Le journal canadien des sciences neurologiques 2023; (50(1)):49-59 doi:10.1017/cjn.2021.252.

    PMID: 34742360
  3. 3

    Natural history of multiple system atrophy in the USA: a prospective cohort study.

    Low PA, Reich SG, Jankovic J, et al.

    The Lancet. Neurology 2015; (14(7)):710-9.

    PMID: 26025783
  4. 4

    Causes of Death in Chinese Patients with Multiple System Atrophy.

    Zhang L, Cao B, Zou Y, et al.

    Aging and disease 2018; (9(1)):102-108 doi:10.14336/AD.2017.0711.

    PMID: 29392085
  5. 5

    Disease Progression in Multiple System Atrophy: The ASPIRE Multi-Modal Biomarker Study.

    Fabbri M, Del Campo N, Meissner WG, et al.

    Annals of neurology 2026; (99(1)):96-113 doi:10.1002/ana.70028.

    PMID: 40856050
  6. 6

    Clinical characteristics and quality of life in Chinese patients with multiple system atrophy.

    Du JJ, Wang T, Huang P, et al.

    Brain and behavior 2018; (8(12)):e01135 doi:10.1002/brb3.1135.

    PMID: 30378279
  7. 7

    Factors impacting quality of life in multiple system atrophy.

    Ali N, Nesspor V, Bang J, et al.

    Frontiers in neurology 2023; (14()):1111605 doi:10.3389/fneur.2023.1111605.

    PMID: 36970533
  8. 8

    Longitudinal evolution of motor and non-motor symptoms in early-stage multiple system atrophy: a 2-year prospective cohort study.

    Zhang L, Hou Y, Cao B, et al.

    BMC medicine 2022; (20(1)):446 doi:10.1186/s12916-022-02645-1.

    PMID: 36397048
  9. 9

    Trends in Invasive Interventions and Risk Factors for Early Critical Events in Multiple System Atrophy.

    Tarisawa M, Matsushima M, Kudo A, et al.

    Cerebellum (London, England) 2025; (24(5)):152 doi:10.1007/s12311-025-01905-z.

    PMID: 40913654
  10. 10

    Dysphagia in multiple system atrophy consensus statement on diagnosis, prognosis and treatment.

    Calandra-Buonaura G, Alfonsi E, Vignatelli L, et al.

    Parkinsonism & related disorders 2021; (86()):124-132 doi:10.1016/j.parkreldis.2021.03.027.

    PMID: 33839029
  11. 11

    Early-onset dysphagia predicts short survival in multiple system atrophy.

    Wada T, Shimizu T, Asano Y, et al.

    Journal of neurology 2024; (271(10)):6715-6723 doi:10.1007/s00415-024-12623-7.

    PMID: 39158732
  12. 12

    Nocturnal stridor in multiple system atrophy: Video-polysomnography and clinical features.

    Ryu HS, Kim HJ, You S, et al.

    Parkinsonism & related disorders 2021; (89()):48-53 doi:10.1016/j.parkreldis.2021.03.015.

    PMID: 34225134
  13. 13

    Non-aneurysmal Subarachnoid Hemorrhaging: A Rare Cause of Death in a Patient with Multiple System Atrophy.

    Kinoshita H, Ayaki T, Maki T, et al.

    Internal medicine (Tokyo, Japan) 2019; (58(11)):1643-1644 doi:10.2169/internalmedicine.1567-18.

    PMID: 30713290
  14. 14

    Deterioration of Vocal Cord Paralysis after COVID-19 Infection in Multiple System Atrophy.

    Takeuchi Y, Masuda T, Kimura N, et al.

    Internal medicine (Tokyo, Japan) 2024; (63(21)):2983-2986 doi:10.2169/internalmedicine.4110-24.

    PMID: 39198167
  15. 15

    Support needs of people with Multiple System Atrophy.

    Cheong JL, Goh ZH, Schrag A

    Parkinsonism & related disorders 2024; (120()):106019 doi:10.1016/j.parkreldis.2024.106019.

    PMID: 38350294
  16. 16

    End-of-life care in multiple system atrophy: UK survey of patients and families.

    Oliver D, Barrick A, Kobylecki C, et al.

    BMJ supportive & palliative care 2024; (14(e3)):e3019-e3023 doi:10.1136/spcare-2024-005045.

    PMID: 39137965
  17. 17

    Multiple System Atrophy.

    Xie T

    Continuum (Minneapolis, Minn.) 2025; (31(4)):1000-1022 doi:10.1212/cont.0000000000001598.

    PMID: 40748131
  18. 18

    Palliative care and its emerging role in Multiple System Atrophy and Progressive Supranuclear Palsy.

    Wiblin L, Lee M, Burn D

    Parkinsonism & related disorders 2017; (34()):7-14 doi:10.1016/j.parkreldis.2016.10.013.

    PMID: 28341224
  19. 19

    Pain in Multiple System Atrophy a Systematic Review and Meta-Analysis.

    Campese N, Caliò B, Leys F, et al.

    Movement disorders clinical practice 2023; (10(12)):1738-1749 doi:10.1002/mdc3.13897.

    PMID: 38094640
  20. 20

    Palliative care in Parkinson disease and related disorders.

    Corcoran J, Huang AH, Miyasaki JM, Tarolli CG

    Handbook of clinical neurology 2023; (191()):107-128 doi:10.1016/B978-0-12-824535-4.00017-3.

    PMID: 36599503
  21. 21

    Palliative Care Discussions in Multiple System Atrophy: A Retrospective Review.

    Dayal AM, Jenkins ME, Jog MS, et al.

    The Canadian journal of neurological sciences. Le journal canadien des sciences neurologiques 2017; (44(3)):276-282 doi:10.1017/cjn.2016.439.

    PMID: 28166857

This page provides educational information about MSA prognosis and care planning. Always discuss your specific trajectory, symptom management, and care preferences with your neurology and palliative care teams.

Stay up to date

Get notified when new research about Multiple system atrophy is published.

No spam. Unsubscribe anytime.