Nursing Management of Multiple Sclerosis

Multiple Sclerosis (MS) is a disease that affects a person’s entire life. Since MS has major neurological effects that are progressive, it can force a person to alter many routine activities within their daily life.
MS, a chronic illness, causes those affected to balance their disease and feelings about their illness within their already busy and bustling life. Keeping this in mind, nurses and MS nurse specialists can have a profound impact on helping a patient manage their Multiple Sclerosis. Because it is the MS nurse that helps manage patient expectations, it is imperative for the MS nurse to develop a therapeutic relationship with the patient, help patients and their families incorporate the disease into their lives and to encourage the patient to seek medical interventions early.
According to the Multiple Sclerosis Society website (2007), “MS is the result of damage to myelin- a protective sheath surrounding nerve fibres of the central nervous system. When myelin is damaged, this interferes with messages between the brain and other parts of the body” (Paragraph 1). Multiple Sclerosis is a disease that has caused a host of problems from a patient care and disease management perspective. For instance, “for the majority of people diagnosed many years ago and told to ‘get on with life,’” today new treatments and support are offered to those who are diagnosed with this life changing disease (D’Arcy, 2005, p. 2). Though there is no cure for MS, great strides “have focused on pharmacological management and therapeutic strategies, education, provision of emotional support and advocating change in governmental policies” (D’Arcy, 2005, p. 2). Hence, the disease management process for MS has come a long way since it was first discovered as being a life threatening and altering disease. The health care community is working hard to educate people living with this disease while at the same time alleviating the unnecessary complications that come with Multiple Sclerosis.
Multiple sclerosis brings with it a multitude of issues. One of the most important topics to address is patient expectations. A significant way this can be done is for the nurse to develop a healthy, therapeutic relationship with the patient and the patient’s family during the patient’s first visit to the clinic. The nurse should concentrate on establishing a connection with the patient and their family, having an open dialogue with them about how things are going and how they are feeling. People who are affected by MS are looking for that one person who will truly listen to their needs and feelings. Furthermore, “the desired outcomes for this relationship are for patients to have an increased awareness and knowledge about MS, DMDs, and the rationale for treatment” (Ross, Costello, & Kennedy, 2005, p. 1). This piece is so important to the nurse/patient relationship. Honesty and trust are key in developing the therapeutic relationship needed and these characteristics of successful communication pave the way to success for the relationship and health goal at hand.
Incorporating any disease into ones life is so important, which stands true for Multiple Sclerosis. According to D’Arcy (2005), one way a nurse specialist may help a patient and their family incorporate a disease into their lives is by “[helping] deliver personlised, patient focused care and [giving] appropriate information so that patients can make informed choices” (p. 3). Often, a newly diagnosed MS patient does not know what his/her needs are going to be. The nurse specialist may help this patient with focused goals, such as continuing with daily activities and exploring new treatments, to better manage the disease and prevent relapse. These goals may be set over a few visits with the nurse specialist and will change as the person’s disease progresses. “Part of the MS nurse’s role involves the correct identification of relapse, assessment and the application of appropriate intervention” (Embrey, 2003, p. 2). A relapse, also called an exacerbation, could be the patient developing optic neuritis, which would than be treated.
Inquiring about interventions and following through with them is essential with a disease like Multiple Sclerosis. According to a study done by Fleming-Courts (2004), MS focus groups “support nursing interventions that empower and teach self-management techniques” (p.1). It is very important for the patient to understand the options he/she has to fight this disease. The patient should be prepared to "Fight your own fight…be your own advocate and [take] charge (Fleming-Courts, 2004, p. 12).” During routine visits with the MS nurse specialist, the patient is encouraged to use various interventions and follow through with therapies. The nurse may follow-up with the patient after their appointments to ensure that the patient left with all of the information needed and questions answered. The MS nurse specialist is a great resource and in a unique position to help the person on a medical regimen and be forthcoming with therapies.
Within any disease process, it is important for the nursing staff to assess the patient’s expectations, which help guide the MS nurse specialist to the appropriate treatments for patients and their individual needs. Further assessment of these expectations provides focus to the nurse and their responsibility to develop a therapeutic relationship with the patient; help patients and their families incorporate the disease into their lives; and to encourage the patient to seek medical interventions early. Essentially, these steps provide a very good start to the management and treatment of a disease that is progressive and unrelenting, yet treatable to whatever extent the patient is willing to go.

Intervention #1
Nurses need to guide patients through the process of setting realistic expectations and getting the right treatments early for the patient.

Disadvantage #1
There are several things that happen when a person is diagnosed with Multiple Sclerosis (MS). Patients are often new to the disease and have to deal with the knowledge deficit that they face because of this newly diagnosed disease. Because of this knowledge deficit, the nurse is expected to help guide the patient through the entire process. The nurse is responsible for filling in where there is a deficit in knowledge as well as being abreast of the latest resources and treatments that are offered. With being knowledgeable about these treatments, at times practitioners and patients can get over excited with the “hype” of new products that show promise in treating MS. With this “hype,” unrealistic expectations may be set by the patient and nurse. Therefore, the nurse must stress that the Disease Modifying Drugs (DMD’s) “reduce exacerbation and slow disease progression but are not cures” (Ross p. 2). The patient must understand that relapse is expected with a disease like MS. If the nurse prepares the patient for this kind of reality, the patient will be less likely to be emotionally distraught during a relapse. Nurse must ensure that patients are setting realistic expectations for their disease process.

Disadvantage #2
With setting realistic expectations also comes choosing the right treatment and getting the patient treated early. The nurse must help the patient decide on the correct treatment by taking into consideration several factors. Lifestyle, stage or severity of disease and the patient’s ability to adhere to treatment are all things that should be considered when choosing a treatment. Another very important aspect of treating MS is to start early. Early interventions should include “pharmacological management and therapeutic strategies, education, provisions of emotional support, and advocating change in government policy” (D’Arcy p. 2). Though early intervention is key, “some [patients] refused the medications because the physician would not assure them of its effectiveness, they were doing well at the moment, and the cost was a deterrent” (Ross et al p.7). MS is a disease that needs time and attention right away; however, high costs, ineffective explanations and poor communication practices with practitioners perturb patients from seeking the health care needed.

Intervention #2
The MS Nurse Specialist should begin to develop a therapeutic relationship with the patient, and help patients and their families incorporate the disease into their lives.

Disadvantage #1
Developing relationships with patients can prove to be challenging. Some times nurses will see patients for the first time after the disease has already progressed. Furthermore, “there is often limited time to discuss individual concerns and provide counseling” (Ross p. 3). This means that the nurse must establish a healthy, therapeutic relationship within a limited amount of time and possibly take over care of a patient that has or has not been established with MS treatments. These issues listed above make it difficult for the nurse to help the patient and family come to terms with MS and its effects.

Disadvantage #2
Though it would seem that following the interventions listed above is easy to do, it can prove to be difficult. Establishing the relationships are important to ensure patient adherence and family support. However, in some case adherence is an issue. In Counseling Points, Ross states, “There are signs that indicate patients may not be adhering to therapy. In some cases, patients try to act as if everything is going well or they avoid giving direct answers. It is up to the nurse to be aware of these signs and to be able to assess what is really going on” (p. 6). Therefore, nurses must try to counteract these types of situations with consistent and frequents follow-ups with the patient and their family. This may help with patient adherence and family participation.

References
D’Arcy, C. (2005, Oct). Managing multiple sclerosis: working in partnership: Caroline D'Arcy describes how healthcare professionals can respond to the needs of people with long term conditions such as multiple sclerosis. Nursing Management. 12(6) 32-35. Retrieved on April 3, 2007 from Expanded Academic ASAP database.
Embrey, N. (Feb. 12, 2003). Benchmarking best practice in relapse management of multiple sclerosis. Nursing Standard, 17(22), 38-42. Retrieved May 28, 2007, from the Expanded Academic ASAP database
Fleming Courts, N., Buchanan, E., & Werstlein, P. (2004). Focus groups: The lived experience of participants with multiple sclerosis. Journal of Neuroscience Nursing, 36(1), 42-47. Retrieved April 3, 2007, from the Expanded Academic ASAP database.
Multiple Sclerosis Society. May 23rd, 2007. Retrieved on May 29, 2007 from http://www.mssociety.org.uk/index.html
Ross, A., Costello, K., Kennedy, P., & Pfohl, D., (2005). Managing patient expectations. Multiple Sclerosis: Counseling Points. 1(1). Retrieved April 28th, 2007, from http://www.iomsn.org/pdf/counseling_pts_Vol1_Num1.pdf