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Advanced MS


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Advanced Care Needs
Some individuals with MS will experience complex symptoms that interfere with their health, safety, independence and quality of life. Physical symptoms that are not managed adequately can lead to additional health problems.

Factors that contribute to worsening MS

Tobacco use
Smoking, including exposure to secondary smoke, is a known risk factor in the development and progression of MS (Hedström et al., 2013Manouchehrinia et al., 2013Hernán et al., 2005). People with MS who smoke tend to experience more disease activity, accelerated brain atrophy and increased disability burden, though some negative outcomes may reverse in those who quit (Rosso et al., 2020; Rodgers et al., 2021). In addition, smokers may not get the full benefit of MS disease-modifying therapies (Hedström et al., 2014). Smoking also contributes to co-morbidities and a shortened lifespan in people with MS.
Obesity has been identified as a risk factor for developing MS. There are conflicting data on whether obesity is associated with brain volume loss in people diagnosed with MS (Mowry et al., 2018, Galioto et al., 2020). BMI was not associated with processing speed in a large cross-sectional sample (n=8713) (Galioto, 2020). Additional prospective studies are needed to further clarify the association of obesity with disease progression and clinical outcomes. Due to the established connection between obesity and comorbid conditions, individuals living with MS with an elevated BMI should be encouraged to maintain healthy lifestyle habits.

Several studies have looked at comorbid health conditions and their potential impact on people with MS. Comorbid health conditions can increase disability (Zhang et al., 2018, Salter et al., 2020) and potentially shorten the lifespan of someone with MS (Capkun et al., 2015Salter et al., 2016). One clinical trial (n=959) found certain comorbidities (anxiety and hyperlipidemia) were associated with disease activity and a dose-response relationship was observed between the number of comorbidities and relapse risk (Salter et al., 2020). Vascular, visual, and psychiatric comorbidities in particular increase mortality risk in patients with MS (Salter, et al., 2016). The incidence rates of diabetes, hypertension and hyperlipidemia are on the rise in the MS population (Marrie et al., 2016) and have been found to worsen psychiatric comorbidities in MS patients (Marrie, et al., 2016).  The presence of psychiatric comorbidities has been shown to worsen neurologic disability (McKay et al., 2018) and depression is associated with slower processing speed and worse MRI metrics (Abbatemarco et al., 2020). Management of comorbid conditions could reduce disability and mortality risk in patient with MS (Capkun et al., 2015Salter et al., 2016).

There is recent evidence of increased risk of some cancers in people with MS compared to the general population (Grytten et al., 2020, Marrie et al., 2020) and compared to their siblings without MS (Grytten et al., 2020); other evidence suggests a decreased risk in the MS population (Gaindh et al., 2016). Malignancy warnings accompany some immunomodulating and immunosuppressive therapies, though the connection between these medications and cancer is still unclear (Magyari et al., 2020). Further study is needed to inform cancer screening recommendations in people with MS.

Working with support partners

In addition to identifying ways to enhance care for people with MS, providers must be mindful of the needs of support partners. Buchanan et al. (2009) found that more than 80% of informal care is provided by spouses. These carepartners have provided care for an average of 13.2 years and almost half of them provide more than 20 hours of care per week. The burden of caring felt by the support partner increases as the overall health of the person with MS worsens (Buchanon et al., 2011). A comprehensive, interdisciplinary approach to care can help manage symptoms that interfere with functional independence and are associated with an increased risk of nursing home placementBuchanon et al. (2011) found that treating bladder dysfunction and providing respite care reduce the burden of caring on support partners. 
In a 2020 North American Research Committee on Multiple Sclerosis (NARCOMS) telephone survey of 206 adults with MS-related disability requiring caregiving, 54.9% reported at least one type of abuse since diagnosis by unpaid caregivers who were either a friend or family member (Morrison et al., 2020). Daily caregivers and caregivers with mental health diagnoses were more likely to be abusive. Those being abused were more likely to report increased fatigue and cognitive symptoms, higher rates of alcohol abuse and lower social support.

Palliative care

Palliative care is a multi-disciplinary approach to healthcare, encompassing the physical, emotional, social, and spiritual care of people with serious illnesses and their families. Palliative care is provided by a team of doctors, nurses and other specialists who work to provide an extra layer of support. The goals of palliative care are:
  • Improving the quality of life for the patient and family
  • Managing distressing symptoms
  • Facilitating communication, decision making and advanced care planning
  • Providing opportunities for personal growth throughout the entire disease course
Palliative care is beneficial for patients undergoing treatment for curable illnesses, living with chronic diseases, or who are nearing the end of life. It is appropriate at any age and at any stage of an illness. Palliative care can be provided along with curative treatments.

For people living with MS, the diagnosis to end-of-life journey may range from a normal life expectancy with death from other comorbid conditions to a more progressive disease course with increased disability and severe and debilitating symptomatology. Due to the unpredictability of MS, it is imperative to help patients plan in ways that enhance quality of life and foster independence. and self-actualization for as long as possible. Healthcare professionals are also encouraged to discuss palliative care options and strategies throughout the disease course in order to avoid the pitfalls of last-minute or nonexistent plans of care.

Additional resources

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