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Journal of Neuroscience Nursing:
Then & Now

Effective Multiple Sclerosis Management Through Improved Patient Assessment

Ross, Amy Perrin; Hackbarth, Natalie; Rohl, Christine; Whitmyre, Kristi

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Questions or comments about this article may be directed to Amy Perrin Ross, MSN MSCN APRN CNRN, at She is a neuroscience program coordinator at Loyola University, Chicago, IL.

Natalie Hackbarth, MSCN RN, is an independent nurse consultant, LaCrescent, MN.

Christine Rohl, MSN CNS CNRN FNP, is a key account manager for EMD Serono, Inc., Rockland, MA.

Kristi Whitmyre, BA, is director of strategic accounts for EMD Serono, Inc., Rockland, MA.

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Multiple sclerosis (MS) is a complex disease with a wide range of clinical manifestations. Current disease‐modifying drugs (DMDs) are effective, but they are associated with effects that may negatively influence treatment compliance. A recent nursing advisory board of MS nurse experts from the Midwest discussed management approaches that can enhance DMD compliance and improve patient satisfaction and quality of life. One such approach is the use of patient questionnaires as tools to assess signs and symptoms of MS and treatment‐related adverse effects. Information gained in this manner is beneficial to MS healthcare professionals as well as patients and has the potential to improve treatment compliance and outcomes and disease management.

Multiple sclerosis (MS) is a chronic, progressive inflammatory disease of the central nervous system (CNS) that affects approximately 2.5 million people worldwide (National Multiple Sclerosis Society [NMSS], 2006a). According to recent estimates, approximately 400,000 people in the United States have MS (NMSS, 2006a). MS is a heterogeneous disease entity with a highly variable course. Most patients initially present with a relapsingremitting form (RRMS) characterized by discrete attacks or relapses followed by periods of complete or relative improvement (Keegan & Noseworthy, 2002; Lublin & Reingold, 1996; Weinshenker et al., 1989). After many years, about 50% of patients with RRMS will develop secondary progressive MS, during which neurologic deterioration is slow, insidious, and progressive, and during which discrete clinical attacks may or may not occur (Keegan & Noseworthy; Lublin & Reingold;Runmarker & Andersen, 1993; Weinshenker et al.). Two other forms of MS are less common: progressive relapsing MS, in which patients have progressive disease from disease onset with relapses; and primary progressive MS, in which patients have continuously progressive disease from the outset, with temporary, minor improvements or occasional symptom plateaus (Lublin & Reingold).

In addition to the complexity associated with the highly variable disease course and multiple disease forms, patients with MS experience a wide range of symptoms classified as primary, secondary, or tertiary. Primary symptoms are direct manifestations of the disease, such as fatigue, bowel and bladder dysfunction, sexual dysfunction, spasticity, cognitive dysfunction, weakness, and visual problems (Schapiro, 1994, 2002). Secondary symptoms are indirect manifestations of MS and include fatigue related to sleep disorders or deconditioning, urinary tract infections, muscle atrophy, and osteoporosis. Tertiary symptoms stem from the chronicity of MS and may be psychological, vocational, or social in nature (Schapiro, 1994). The signs and symptoms of MS vary depending on the site of the lesion(s) within the CNS (Table 1; Compston & Coles, 2002).

Table 1
Table 1
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MS symptoms should be addressed as part of a comprehensive treatment strategy. Symptom management typically includes a combination of non‐pharmacologic and pharmacologic approaches (Table 2). In addition, several disease‐modifying drugs (DMDs) currently are approved for MS treatment (Table 3) to help lessen the severity of symptoms (Berlex, Inc., 2006; Biogen Idec, Inc., 2004, 2006; EMD Serono, Inc., 2006; Pfizer, Inc, 2006; Teva Neuroscience, Inc., 2006). However, effective management of this complicated array of symptoms and treatment‐related adverse effects requires tools that can identify and address the varied aspects of patient health and life that are affected by MS and its treatment. A multidisciplinary approach that combines pharmacologic and nonpharmacologic treatment modalities with patient education strategies to minimize adverse effects, patient support groups, and efforts to maintain open communication between patients and healthcare professionals is recommended.

Table 2
Table 2
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Table 3
Table 3
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This article describes and discusses the use of two patient questionnaires as tools in MS disease management. Patient questionnaires can increase communication between patients and healthcare providers and may help to increase patient satisfaction, improve disease management, and enhance compliance.

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Using Patient Questionnaires for Self‐Assessment

Important components of any MS management plan include accurate and up‐to‐date patient histories and patient education about the disease and available treatment. Healthcare professionals, support groups, literature, and Web sites all can serve as education resources. Management plans also should address the benefits patients expect to receive from therapy and strategies to manage symptoms and adverse effects. Management plans and detailed patient histories take a great deal of time to develop, however, and are dependent on a patient's ability to provide accurate information. Many patients with MS might focus on one symptom they experience and not mention other symptoms they experienced in the past. As a result, practitioners are not able to effectively manage all of a patient's symptoms. A nursing advisory board comprising MS nurse experts from the Midwest, sponsored by EMD Serono, Inc., and Pfizer, Inc., recently convened to discuss management approaches that have the potential to enhance DMD compliance. In our combined experience, MS patient intake and follow‐up questionnaires, administered before or during patient visits to a healthcare professional's office, were found to be useful tools. These closed‐ended questionnaires feature multiple‐choice and short‐answer questions related to the purpose of the visit, current medication, adherence, treatment expectations, disease symptoms, side effects, psychological parameters, and socioeconomic aspects. The information may be entered into a database and can be used to follow factors such as disease status, response to therapy, perception of therapy, and compliance for each patient. Patient questionnaires can increase communication between patients and healthcare providers and may help increase patient satisfaction, improve disease management, and facilitate office and clinic visits by helping to prioritize issues that need to be addressed in a single visit.

A recent analysis that used a self‐report questionnaire to classify a patient's clinical course found that patient self‐reporting may help to define the different courses of MS (Bamer, Cetin, Amtmann, Bowen, & Johnson, 2007), suggesting that questionnaires are an effective way to assess disease course and symptoms. The intake and follow‐up questionnaires we have developed (Figs 1 and 2) have emerged as valuable tools for improving communication among physicians, nurses, and patients. They also helped increase communication among patients' family members, employers, coworkers, and friends. The questionnaire was developed by MS nurses with involvement from their patients. Literature was reviewed to identify any missing items.

Fig 1
Fig 1
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Fig 2
Fig 2
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Patients complete an intake questionnaire (Fig 1) during their initial visit to their healthcare provider. This initial assessment gathers detailed information about the patient's physical and psychological condition by using specific, closed‐ended questions to determine symptoms, medications, and clinical status. At follow‐up visits, either the intake questionnaire or a follow‐up questionnaire (Fig 2) may be used, depending on the healthcare provider. The follow‐up questionnaire is an in‐depth self‐assessment of disease progression, DMDs, DMD compliance, adverse effects associated with DMDs, adverse‐effect management, and other issues related to MS disease management. The intake questionnaire may be used at follow‐up to provide consistent information between visits, or the follow‐up questionnaire may be used to target the specific nature of the follow‐up visit.

Information obtained with questionnaire use can serve as the backbone for establishing patient databases for offices or clinics. Such databases may be used to help monitor disease progression and DMD response and compliance and manage adverse effects. The data also can be used to identify and recruit patients for new clinical trials. Because databases make it possible to track information between visits, they also may be used to track when adverse effects are increasing or compliance is decreasing, which gives nurses the ability to modify treatment approaches as needed.

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Questionnaire Benefits

In our experience, questionnaires provide numerous benefits. Nurses use them to flag issues that otherwise might not have been brought to their attention. Questionnaires also help nurses determine how well MS patients' symptoms are being managed. For example, one patient presented with an issue related to foot pain. Upon review of the questionnaire, the nurse noted this patient also indicated a bladder issue. The nurse was then able to address both the primary complaint and the potentially important issue of a bladder problem, which the patient had not intended to discuss.

Questionnaires also enable nurses to better recognize situations in which patients require referrals to other physicians, nurses, or social services. They place the focus of physician‐patient consultations on medical issues because nurses can address nonmedical issues as they respond to questionnaire answers. Questionnaires also can help to differentiate MS diagnoses. A nurse who suspects a patient may have MS based upon his or her presenting symptoms can use the questionnaire to determine if he or she is experiencing specific MS symptoms. For patients already diagnosed with MS, the questionnaire allows nurses and physicians to better manage existing symptoms and identify new symptoms more efficiently (with assistance from caregivers who also track symptoms). Finally, the questionnaires provide patients with more comprehensive, “whole person” care, and have empowered them to take a more active role in their treatment. The questionnaire raises patients' awareness of their symptoms and allows them to track their treatment's progress. As a result, patients tend to interact with their caregivers more frequently, and they often request a questionnaire when they come into the office.

A series of educational programs based on issues identified in questionnaires has been established in the office of one of this article's authors. These programs focus on issues patients may not discuss with their physicians during standard office visits. The questionnaires identified a group of patients who curtailed their fluid intake, for example, because they had trouble locomoting to the toilet (potentially leading to dehydration). An educational session was established for these patients to lend emotional and psychological support and provide alternatives to limiting liquid consumption. Other customized group visits have also been organized around the themes of sexuality, workplace rights and disclosure, and mood issues.

The patient database that was established with questionnaire data also has been useful. The database tracks patient perceptions and progress and can be used to recruit patients for clinical trials and research studies. Further, data from existing questionnaires regularly are evaluated and used to generate new questionnaires that address patient quality‐of‐life issues in a more specific manner.

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MS is a disease with a wide range of adverse clinical manifestations. Current DMDs, although not curative, slow disease progression. MS patients with significant disease can improve their out‐look and quality of life with proper symptom and adverse‐effect management. Both pharmacologic and nonpharmacologic strategies have been used to successfully reduce symptoms and adverse effects, leading to increased therapy compliance.

Good communication between patients and healthcare providers is essential if treatment is to succeed. Using detailed patient questionnaires that are administered at physicians' offices or clinics can improve communication. In our experience, these questionnaires have been useful in treating the “whole patient.” Healthcare providers use the office visit to address medical issues with the knowledge that patients have the opportunity to discuss other issues in more detail in a separate forum. This format may lead to improved patient‐caregiver interaction and an overall better quality of care, resulting in better therapeutic outcomes and improved quality of life for MS patients.

The intake and follow‐up questionnaires for MS disease assessment can help to monitor disease progression and determine treatment compliance, efficacy, and adverse effects. This information can be used by both physicians and MS nurses to effectively manage symptoms and adverse effects and to monitor the efficacy of DMDs in MS.

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Amy Perrin Ross is a member of the speakers bureau and is a consultant for Bayer Healthcare; Biogen Idec; EMD Serono, Inc.; Genentech; Novartis; Pfizer, Inc.; and Teva Neuroscience. Christine Rohl currently is an employee of EMD Serono, Inc., which sponsored a nursing advisory board meeting at which this article was discussed. (She was not employed by EMD Serono, Inc. at the time this article was written.) Kristi Whitmyre was employed by EMD Serono, Inc., at the time this article was written.

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