Multiple Sclerosis Pathways: An Innovative Nursing Role in Disease Management.
Subject: Multiple sclerosis (Care and treatment)
Authors: Madonna, Michele G.
Keating, Michelle M.
Pub Date: 12/01/1999
Publication: Name: Journal of Neuroscience Nursing Publisher: American Association of Neuroscience Nurses Audience: Professional Format: Magazine/Journal Subject: Health care industry Copyright: COPYRIGHT 1999 American Association of Neuroscience Nurses ISSN: 0888-0395
Issue: Date: Dec, 1999 Source Volume: 31 Source Issue: 6
Accession Number: 59984477
Full Text: Abstract: Multiple sclerosis (MS), a chronic disease of the central nervous system, is characterized by a variable and unpredictable course. The most common pattern of the disease is the relapsing-remitting form in which clearly defined relapses (also called exacerbations) are followed by complete or incomplete recovery. Interferon beta-1b (Betaseron[R]), a drug that affects the natural course of the disease, was developed for the treatment of relapsing-remitting MS. Multiple Sclerosis Pathways[SM] (MSP), a disease management program, was developed to provide comprehensive and personal support to MS patients taking interferon beta-1b and to serve as an information resource for all people with MS, their families, and healthcare professionals. The MSP program includes personal patient assistance, reimbursement services, a 24-hour nurse hotline, training program, educational resources, and injection supplies. The nurse hotline counselor (NHC) utilizes the nursing process in a unique telephone nursing practice in this program. The positive impact of education and support on adherence to therapy has been validated by training and nurse hotline data.


Multiple sclerosis (MS) is a chronic demyelinating disorder affecting the white matter of the central nervous system.[4] The disease is characterized by a variety of unpredictable symptoms and often takes a progressive course that results in partial or complete disability. Only 10 years ago there were no therapeutic options available that affected the natural course of MS; symptom management was the predominant treatment.

In 1993, interferon beta-1b (Betaseron[R], Berlex Laboratories, Richmond, CA) was introduced for the treatment of relapsing-remitting MS. Clinical trial results demonstrated that this drug reduced the frequency and severity of MS exacerbations.[12] In addition, magnetic resonance imaging (MRI) demonstrated decreased overall lesion burden and fewer new active lesions.[14] A recent clinical trial in Europe has reported comparable results using interferon beta-1b versus placebo in secondary-progressive MS.[6]

In the 6 years since interferon beta-1b has been available for treatment, the importance of patient education and support during therapy has been recognized.[13] Patients utilizing interferon beta-1b therapy express the importance of knowledge about therapy, including realistic expectations for benefits and adverse effects, confidence in self-administration of injections, and professional support.[13] This article addresses the Multiple Sclerosis Pathways (MSP) approach to the management of patients with MS on interferon beta-1b therapy.

Overview of the MSP Program

MSP is a disease management program developed by Berlex Laboratories, Inc., that provides a wide variety of services and educational materials for people with MS and people taking interferon beta-1b.[1] A toll-free number (800-788-1467) provides access to the programs and services available. All the services, which are free, are designed to support the patient, the patient's family, and the healthcare professional.

The following key services together make up the support system that comprises MSP and assists the individual throughout the course of treatment:

* Personal patient assistant support

* Reimbursement services

* 24-hour nurse hotline

* Training program

* Educational resources

* Beta Advantage[TM] program.

The initial contact at MSP is the personal patient assistant (PPA). Each time the patient calls, he or she has contact with the same PPA or a member of the same team. The PPA is responsible for enrolling the patient into the program and contacting the patient at regular intervals after enrollment. The PPA assists the patient in determining reimbursement coverage for interferon beta-1b therapy and makes referrals for additional support if needed. The PPA also makes certain that the patient obtains his or her medication and confirms arrangements for training when requested. Topic-specific educational materials are sent to patients who request them. Patients may also be transferred to the 24-hour nurse hotline to address questions on adverse events and other nursing-, drug-, or disease-related issues.

To assist patients in determining insurance coverage or payment options for interferon beta-1b, trained reimbursement counselors are available. For instance, help with selection of different payment methods as well as various kinds of claims assistance is provided. Certain individuals who "are uninsured, are not eligible for special assistance programs sponsored by Medicaid or Medicare, and have less than $50,000 in annual income ... may be eligible for special assistance programs ..."[2] Through the Betaseron Foundation, a nonprofit foundation, qualified individuals who cannot afford interferon beta-1b can receive financial assistance.

For patients who request the training program, one-on-one instruction by a registered nurse arranged by Olsten Health Services can be provided at no charge (upon physician approval). A training kit is available to assist with the training process and includes a videotape of procedures, a patient training manual, and an injection journal. Patients also receive free injection supplies (alcohol wipes, syringes, and syringe disposal unit) through the Beta Advantage program. Federal regulations do not allow MSP to offer this service to Medicaid patients.

Other educational resources that are available upon request through MSP include a quarterly newsletter, videotapes ("MS Pathways" and "A Patient's Perspective on Betaseron"), and brochures. An Internet site,, is a resource for questions and answers about MS topics, product information, and stories and artwork about living with MS.

Role of the Nurse Hotline Counselor

Since the 1960s, the telephone has been "a convenient vehicle for patient care management" (p. 179).[16] Telephone nursing practice is a new and growing area that utilizes the registered nurse and the nursing process to provide care.[3] Today it is an integral part of disease management programs and an important component of MSP. "Disease management attempts to integrate known information about a particular disease state to improve healthcare quality and maximize cost-effective use of resources" (p.46)[11] Anyone who calls MSP, even if not using interferon beta-1b therapy, can be connected to a nurse hotline counselor (NHC). In their telephone nursing role, nurses assist callers to make healthcare decisions.[15] Telephone interactions with the nurse support the patient's empowerment in self-care.[8] In the management of patients on interferon beta1b, the NHC functions as teacher, coach, and counselor for patients and their care partners.[5]

The nursing process is used in telephone nursing by the NHC. Assessment is done through the interview and information-gathering process regarding the chief complaint or problem. Listening and verbal communication skills are vital to the assessment. Planning and intervention require patient participation. Nursing interventions include patient education, referrals for immediate or delayed evaluation by healthcare professionals, community resource referrals, and reassurance. Potential outcomes are evaluated by assessing patient understanding and agreement with the approach to care.

Objectives of the nurse hotline include maximizing adherence to interferon beta-1b therapy, increasing the quality, consistency, and effectiveness of the patient programs, and providing a professional resource. The registered nurses who staff the hotline can address specific questions about MS and related issues. The nurse hotline is staffed 24 hours a day, 7 days a week. This 24-hour coverage also offers the patient's physician the benefits of more efficient patient management, patient satisfaction, and feedback on critical issues.[9]

The role of the patient is to call the hotline, provide information to the nurse, listen to the nurse's advice, decide on a course of action, and contact the nurse again if further questions arise.[8] To patients, the nurse provides knowledge of the disease and its symptoms, treatments, and adverse effects;[17] reassurance and support; appropriate healthcare referrals; and counseling on psychosocial issues. The nurse does not offer a medical diagnosis or provide treatment.[15]

Advice to the patient is based on practice protocols or guidelines developed through resource books and a medical professional committee, thus ensuring consistent, accurate information.[16]

Another key element of telephone nursing on the hotline is a trained staff. The nurse hotline staff consists of five experienced registered nurses who are knowledgeable about MS and interferon beta-1b therapy and have had continuing education in legal issues, depression, suicide intervention, general MS issues, and adverse event recording.

Another role of the NHC in providing support to the patient is accomplished through follow-up calls. Following completion of the patient's interferon beta-1b training program, the NHC makes three phone calls at intervals to follow the patient's progress as therapy begins. These calls provide the patient with support and information and facilitate adherence to therapy. A copy of this follow-up call report is sent to the physician.

Documentation is an important component of the job of an NHC. Records are kept of all calls, including demographics of the caller, patient-reported problems, and outcomes of the call. Documentation tools include a patient contact note, a phone log for all calls, and a follow-up checklist form. Beginning in 1999 with telephone customer service as a model, NHC documentation and patient records have been automated using the Internet to provide immediate real-time call records (encoded to protect confidentiality). This improvement has provided additional continuity for patients.

Impact on Patient Adherence to Therapy

Providing education, encouraging realistic expectations, and providing necessary support are critical to patients continuing an interferon beta-1b therapy. As the largest segment of healthcare providers and a conduit for the dissemination of information to patients from other members of the healthcare team, nurses have a great opportunity to enhance patient adherence to therapy.[7] People with MS who have been trained through the Betaseron training program consistently stay on therapy longer than those who do not receive this training. Patients who receive this initial training, arranged by Olsten Health Services, have a 10% higher adherence rate for the one year data were collected (Fig 1).[10] In addition, patients who have utilized the nurse hotline demonstrate an 11% higher adherence rate than those who have not made this contact (Fig 2).[10]


Of the patients newly starting on therapy (prescription date-of-fill is recorded), 35%-40% access the training program. Of these patients, 40% access the nurse hotline, compared to 21% who do not receive the training program. Approximately 8% of patients who have been on therapy prior to 1997 have had at least one contact with the nurse hotline.

MSP has served as the model for other patient programs supporting MS drags that have subsequently received marketing clearance. Professional and patient feedback has been overwhelmingly positive, and that input has led to program enhancements such as the Beta Advantage program and sponsorship of regional educational programs and teleconferences for people with MS. Also, an array of new patient brochures and two new MSP videotapes were introduced last year.


The MSP program, a comprehensive disease management program providing personal assistance, reimbursement and training assistance, education, and nursing support has had a positive impact on patient adherence to treatment. As the develops, it is hoped that more people will participate in the training program and utilize the nurse hotline. More data can then be obtained to provide insight and further enhance services offered to MS patients and their families.


We would like to express our deepest gratitude to Paul Schmid and Maria Froelich, Berlex Laboratories, Inc., Sally Jewell, Olsten Health Services, and the wonderful staff of FCB HealthCare for their support in the preparation of this manuscript.


[1.] Berlex Laboratories: Catalog of Programs and Services. Author, 1997.

[2.] Berlex Laboratories: Your Guide to Starting Treatment. Author, 1997.

[3.] Blanchfield K, Schwarzentraub L, Reisinger P: Development of telephone nursing standards. Nurs Econ 1997; 15(5): 265-268.

[4.] Chipps E, Clanin N, Campbell V: Multiple sclerosis. Pages 272-290 in: Neurological Disorders. Mosby Year Book, 1992.

[5.] Costello K, Conway K: Nursing management of MS patients receiving interferon beta-1b therapy. Rehabil Nurs 1997; 22(2): 62-66.

[6.] European Study Group on Interferon Beta-1b in Secondary Progressive MS: Placebo-controlled multicentre randomised trial of interferon beta-1b in treatment of secondary progressive multiple sclerosis. Lancet 1998; 352: 1491-1497.

[7.] Fischer J, Miller D, Larocca N (editors): Multiple Sclerosis: Key Issues in Nursing Management, Adherence, Cognitive Function, Quality of Life. Medicalliance, Inc., 1998.

[8.] Glasper A, McGrath K: Telephone triage: Extending practice. Nurs Stand 1993; 7(15): 34-36.

[9.] Grandinetti D: Patient phone calls driving you crazy? Here's relief. Med Econ 1996; 73(12): 72-79.

[10.] Healthcare Delivery Systems: Data on file, 1998.

[11.] Hesselgrave B: Drug lores (disease management). Hosp Health Netw 1996; 70(21): 46-50.

[12.] The IFNB Multiple Sclerosis Study Group: Interferon beta-1b is effective in relapsing-remitting multiple sclerosis. I. Clinical results of a multicenter, randomized, doubleblind, placebo-controlled trial. Neurology 1993; 43: 655-661.

[13.] Keating M, Ostby P: Education and self-management of interferon beta-1b therapy for multiple sclerosis. J Neurosci Nurs 1996; 28(6): 350-358.

[14.] Paty DW, Li DKB, the UBC MS/MRI Study Group, and the IFNB Multiple Sclerosis Study Group: Interferon beta-1b is effective in relapsing-remitting multiple sclerosis. II. MRI analysis results of a multicenter, randomized, double-blind, placebo-controlled trial. Neurology 1993; 43: 662-667.

[15.] Robinson D, Anderson M, Acheson P: Telephone advice: Lessons learned and considerations for starting programs. J Emerg Nurs 1996; 22(5): 409-415.

[16.] Robinson D, Anderson M, Erpenbeck P: Telephone advice: New solutions for old problems. Nurse Pract 1997; 22(3): 179-192.

[17.] Terry K: Disease management depends heavily on nurses. Med Econ 1997; 74(14): 76.

Questions or comments about this article may be directed to:

Michelle M. Keating, RN OCN, Multiple Sclerosis Pathways, P.O. Box 52171, Phoenix, AZ 85072-2171. She is a Nurse Educator at St. John's Mercy Resource Center for Health Information and Betaseron Nurse Hotline Counselor.

Michele G. Madonna, MA RN, is a Betaseron Nurse Hotline Counselor.

Copyright [C]1999 American Association of Neuroscience Nurses 0047-2603/99/3106/00332$1.25
Gale Copyright: Copyright 1999 Gale, Cengage Learning. All rights reserved.