Goals of Care in People Living with Advanced Multiple Sclerosis

Background: For those living with multiple sclerosis (MS) goals of care can vary, especially for those with advanced disease. Clinicians can utilize a patient’s goals of care to develop a plan of care and improve quality of life (QOL). As MS progresses, goals and hopes may change. Few studies have described the patient stated goals of care for those with advanced MS.

We conducted a survey of 274 persons with advance MS who are living in New York City and receiving services from Independence Care System (ICS), a managed-long term care program. To be enrolled in ICS a person must be nursing home eligible and require assistance in completing their activities of daily living.  

Objectives: To describe goals of care and determine relationships between goals as a whole and several other factors such as, demographic characteristics, symptoms and measures of physical disability.

Methods: An in-home nursing assessment that was completed over the last six months.

Results: Although the data is still being analyzed*, initial results appear to indicate that many goals of care focus on the patient's desire to remain in their home.

Conclusions: Through an understanding of goals of care for people with advanced MS, and the relationship with other important factors, access to home care can prevent institutionalization and assist members in improving their quality of life*.

* Please note that the presentation will contain final data along with an analysis and implications for future research.