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Advanced MS Needs

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Overview

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., 2013; Manouchehrinia et al., 2013; Hernán et al., 2005). 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
Higher body mass index has been found to be associated with greater gray matter volume loss (Mowry et al, 2018). This is significant as gray matter loss leads to progression and long term disability (Neema et al., 2009; Eshaghi et al., 2018).  

Commorbidities
Several studies have looked at comorbid health conditions, conditions occurring in an individual in addition to MS, and their potential impact on people with MS. Comorbid health conditions and their complications can increase disability (Zhang et al., 2018) and potentially shorten the life span of someone with MS (Capkun et al., 2015; Salter et al., 2016). 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). Management of comorbid conditions could reduce disability and mortality risk in patient with MS (Capkun et al., 2015; Salter et al., 2016).

Guidelines

Quality care is critical to the quality of life of people with MS and their support partners. Providing long-term support services for someone with MS is quite different from providing care for the aging population. People with MS are generally younger, have more physical disability, struggle with more depression and are more cognitively intact (Buchanan et al., 2003).

The National MS Society, in partnership with provider membership organizations, has developed four guideline documents to provide clinical information, practical tips and best practices to those who are serving people with MS across the continuum of care. The goal is to enhance and expand quality, age-appropriate and comprehensive long-term support services for 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 patients and carepartners manage the symptoms that interfere with functional independence and are associated with an increased risk of nursing home placement. Buchanon et al. (2011) found that treating bladder dysfunction and providing respite care reduce the burden of caring on support partners. 

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 treatments that are meant to cure.

For people living with MS, the journey from diagnosis to end-of-life may range from a nearly normal life expectancy with death from cancer or heart disease 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 encouraged to explore and discuss (.pdf) 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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Factors that contribue 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., 2013; Manouchehrinia et al., 2013; Hernán et al., 2005). 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
Higher body mass index has been found to be associated with greater gray matter volume loss (Mowry et al, 2018). This is significant as gray matter loss leads to progression and long term disability (Neema et al., 2009; Eshaghi et al., 2018).  

Commorbidities
Several studies have looked at comorbid health conditions, conditions occurring in an individual in addition to MS, and their potential impact on people with MS. Comorbid health conditions and their complications can increase disability (Zhang et al., 2018) and potentially shorten the life span of someone with MS (Capkun et al., 2015; Salter et al., 2016). 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). Management of comorbid conditions could reduce disability and mortality risk in patient with MS (Capkun et al., 2015; Salter et al., 2016).

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