multiple sclerosis counseling points

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This publication has been supported by an educational grant from Teva Neuroscience MANAGING P ATIENT EXPECTATIONS A Roundtable Discussion Counseling Points TM Multiple Sclerosis Enhancing Patient Communication for the MS Nurse ENDORSED BY THE INTERNATIONAL ORGANIZATION OF MS NURSES May 2005 Volume 1, Number 1 T he last decade has seen the introduction of a number of agents that offer hope for patients with MS. These disease- modifying drugs (DMDs) have been demonstrated to reduce the frequen- cy and severity of relapses and slow disease progression. However, because these agents do not cure MS, it falls to health professionals involved in the care of patients with MS to help manage expectations. Nurses are at the frontline of MS care. They participate in all facets of patient management and thus, play a major role in educating the patients about the benefits of DMDs, while managing patient expectations. Developing the therapeutic relationship The first step towards setting realis- tic expectations is establishing a positive therapeutic relationship. The desired outcomes for this rela- tionship are for patients to have an increased awareness and knowl- edge about MS, DMDs, and the rationale for treatment. In addition, the need to be educated on injection techniques and strategies to handle the impact of side effects are impor- tant facets of patient education. Not only is it important to establish a relationship with the patient, but it is also important to establish a relationship with the family. It is crucial to develop a sense of connection and lay the ground- work for sustaining a long-term relationship in which the lines of communication are always open. www.iomsn.org Dorothea (Dottie) Cassidy Pfohl, RN, BS, MSCN Clinical Coordinator for the Comprehensive MS Center Kathleen Costello, RN, MS, CRNP Nurse Practitioner and Clinical Director of the Maryland Center for Multiple Sclerosis Patricia Kennedy, RN, CNP, MSCN Nurse Practitioner at the Rocky Mountain MS Center Continued on page 3 ROUNDTABLE P ARTICIPANTS Document5 5/27/05 11:07 AM Page 1

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This publication has been supported by an educational grant from Teva Neuroscience

MANAGING PATIENT EXPECTATIONSA Roundtable Discussion

Counseling PointsTM

Multiple Sclerosis

Enhancing Patient Communication for the MS Nurse

ENDORSED BY THE INTERNATIONAL ORGANIZATION OF MS NURSES

May 2005 Volume 1, Number 1

The last decade has seen theintroduction of a number ofagents that offer hope for

patients with MS. These disease-modifying drugs (DMDs) have beendemonstrated to reduce the frequen-cy and severity of relapses and slowdisease progression. However,because these agents do not cureMS, it falls to health professionalsinvolved in the care of patients withMS to help manage expectations.

Nurses are at the frontline of MScare. They participate in all facets

of patient management and thus,play a major role in educating thepatients about the benefits ofDMDs, while managing patientexpectations.

Developing the therapeuticrelationshipThe first step towards setting realis-tic expectations is establishing apositive therapeutic relationship.The desired outcomes for this rela-tionship are for patients to have anincreased awareness and knowl-edge about MS, DMDs, and the

rationale for treatment. In addition,the need to be educated on injectiontechniques and strategies to handlethe impact of side effects are impor-tant facets of patient education.Not only is it important to establisha relationship with the patient, butit is also important to establish arelationship with the family.

It is crucial to develop a sense ofconnection and lay the ground-work for sustaining a long-termrelationship in which the lines ofcommunication are always open.

www.iomsn.org

Dorothea (Dottie) Cassidy Pfohl, RN,BS, MSCNClinical Coordinator for theComprehensive MS Center

Kathleen Costello, RN, MS, CRNPNurse Practitioner and ClinicalDirector of the Maryland Center for Multiple Sclerosis

Patricia Kennedy, RN, CNP, MSCNNurse Practitioner at the RockyMountain MS Center

Continued on page 3

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May 2005

WELCOME TO MSCOUNSELING POINTSTM

Roundtable Participants:Series EditorAmy Perrin Ross, APRN, MSN,CNRN, MSCN Neuroscience Program CoordinatorLoyola University Medical CenterMaywood, IL

Kathleen Costello, RN, MS, CRNPNurse Practitioner and Clinical Directorof the Maryland Center for Multiple Sclerosis University of MarylandBaltimore, MD

Patricia Kennedy, RN, CNP, MSCNNurse Practitioner at the RockyMountain MS CenterEnglewood, CO

Dorothea (Dottie) Cassidy Pfohl, RN, BS, MSCNClinical Coordinator for theComprehensive MS CenterUniversity of Pennsylvania Health SystemDepartment of NeurologyPhiladelphia, PA

Faculty Disclosure Statements:Kathy Costello is on the speakers bureaufor Biogen Idec, Teva Neuroscience, andSerono. She has received honoraria fromBiogen Idec, Teva Neuroscience, Pfizer,Serono, and Genentech.

Patricia Kennedy has received honorariafor consulting and lecturing for BiogenIdec, Serono and Teva Neuroscience. Shehas also lectured for and received honoraria from Berlex .

Amy Perrin Ross has received honorariafor consulting and participating on thespeaker’s bureau programs for Pfizer,Serono, Teva Neuroscience, Berlex, andBiogen Idec.

Dottie Pfohl has received honoraria forconsultancy from Berlex, Biogen Idec,Serono, Teva Neuroscience, and Pfizer

Publishing Information:PublisherJoseph J. D’OnofrioDelaware Media Group, LLC66 South Maple AvenueRidgewood, NJ 07450201-612-7676fax 201-612-8282

WriterJo Stratmoen

© 2005, Delaware Media Group, LLC. All rightsreserved. None of the contents may be reproducedin any form without prior written permission fromthe publisher. The opinions expressed in this pub-lication are those of the participants and do notnecessarily reflect the opinions or recommenda-tions of their affiliated institutions, the publisher,The International Organization of MS Nurses, theDelaware Media Group or Teva Neuroscience.

Dear Colleague,

Multiple sclerosis (MS) is a chronic immune-mediated disease of the central nervous systemwith an unknown etiology that may affect a vari-ety of physical and cognitive functions. Over thelast two decades, extensive research has resulted inwide-ranging treatment options to address thedeficits associated with MS. In many cases, treat-ment regimens are complex and involve parenteralmedications.

Nurses involved in the management of patients with MS play a majorrole in maximizing outcomes. Whether they are addressing the physicalor psychosocial needs of patients, nurses must establish a solid, potential-ly long-term relationship with patients and their families.

In MS Counseling PointsTM, nurses with many years experience in treat-ing patients with MS share their expertise on a variety of topics rangingfrom managing patient expectations to bowel and bladder care regimens.

In each issue, as well as focusing on a specific topic, we will includeabstracts from the literature highlighting nursing initiatives aimed atimproving the care of patients with MS.

It is hoped that the information contained in this series will help nurseswith and without in-depth experience with MS to enhance their skills andoptimize outcomes for patients.

Your comments are important to help us plan future issues of MSCounseling PointsTM. Please take a moment to complete the survey onpage 11 and fax back to us at 201-612-8282. We thank you in advancefor your support.

I would also like to thank Teva Neuroscience for providing the grantnecessary to support this program and for their continued commitment tomultiple sclerosis nursing.

Amy Perrin RossAmy Perrin Ross, APRN, MSN, CNRN, MSCN (series editor)

Neuroscience Program CoordinatorLoyola University Medical Center

Maywood, IL

Document5 5/27/05 11:08 AM Page 2

When initiating a conversation about DMDs,timing is everything. Frequently, early after diag-nosis patients are so overwhelmed that they are notable to comprehend or remember what they aretold about therapeutic options.

It is important to clarify a newly diagnosedpatient’s knowledge about the disease beforeintroducing the subject of disease-modifying thera-py. Patients will seek information about the diag-nosis and also about treatments from varioussources; however, the nurse must help sort throughthis information to assist patients with their under-standing of the disease process. Having accurateinformation about the disease is helpful when dis-cussing treatments and expectations of the treat-ments.

It can be useful to ask patients what websites orother resources they have used to find informationabout MS. Doing this allows you to identify whatparticular slant they have on MS and treatmentoptions. It is also an invitation for patients toexpress their fears and concerns.

Nurses must realize that if a patient initiallydeclines self-injected treatment for MS, it may be asound judgment based on their knowledge level,expectations, support system and emotional state.The basis of the therapeutic relationship is under-standing the emotional state and physical conditionof the patient. Knowing this, the nurse can workwith the patient and hopefully move towards the ini-tiation of a disease-modifying therapy. Sometimes, itis up to the nurse to help patients realize that theyare not ready to make the decision to start treat-ment. MS is a life-long disease, but a week or montheither way is not likely to have a huge impact on thelong-term outcome. Readiness to begin therapy willassist patients with long-term adherence.

Patients frequently indicate that before theymake any decisions, they would find it useful totalk to other patients with MS. Often the nurse candirect patients to a source where patients have beenidentified who are willing to share their story.

Setting realistic expectationsNurses see patients in a variety of settings. In somecases, they have been involved with particularpatients from the time of diagnosis and in othersthey are seeing patients with established MS for thefirst time. There is often limited time to discussindividual concerns and provide counseling. Inaddition, some nurses may not be as familiar withthe MS treatments. Thus it becomes paramount for

nurses in practice to know the resources that canhelp patients understand the realistic expectationsof MS treatments.

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Patient Expectations

It is important to clarify a newlydiagnosed patient’s knowledgeabout the disease before introducingthe subject of disease-modifyingtherapy

Available DMDs

Avonex® (interferon beta-1a, Biogen Idec)Administered once weekly via intramuscular injection

Betaseron® (interferon beta-1b, Berlex Laboratories)Administered every other day via subcutaneousinjection

Copaxone® (glatiramer acetate injection, TevaNeuroscience)Administered daily via subcutaneous injection

Novantrone® (mitoxantrone, Serono Inc.)Administered monthly intravenously

Rebif® (interferon beta-1a, Serono Inc. and Pfizer Inc.)Administered three times weekly via subcutaneousinjection

It becomes paramount for nurses in practice to know the resourcesthat can help patients understandthe realistic expectations of MStreatments

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The media as well as direct to patient advertisingare powerful information tools. However, they canalso promote unrealistic expectations. It is possiblefor persons with MS, as well as health careproviders, to get swept along with the general wave

of hype when a new product shows promise inclinical trials or is newly approved. Hope for thetreatment is appropriate, but it must be realistichope.

Nurses must stress that although DMDs canreduce exacerbations and slow disease progression,they are not cures. If patients believe that they willnever have another relapse once they start a DMD,they are more likely to be disheartened and non-adherent when a relapse occurs. It is best to bestraightforward when a patient has unrealisticexpectations, and attempt to clarify what is realis-tic and what is not.

Identifying a patient’s understanding of relapsesand the appearance of new lesions on magnetic res-onance imaging scans (MRI) is very important.These indicators can also play a part in patientexpectations as well as adherence to treatments.

Factors that influence treatment choiceWhen counseling a patient on which agent is bestfor them, it is important to take into considerationlifestyle, stage or severity of disease, and ability toadhere to therapy.

Patients may be prescribed a drug before seeingan MS nurse and have questions as to why a par-ticular drug was chosen for them. They often wantto know if they have been prescribed the “best”therapy. It is likely that a particular medicationwas chosen based on both MS-related and lifestylefactors. Patients should realize that all of the ther-apies are effective, but that individual response

may vary. Thus, if patients have suboptimalresponse to the first agent they are prescribed itshould not be perceived as a “failure.” In this sce-nario, different treatments might be prescribed.

Frequently treatment decisions are driven bysomething that a patient tells his or her doctor. If apatient is concerned about flu-like side effects, thedoctor may prescribe Copaxone® (glatirameracetate injection, Teva Neuroscience). On the otherhand, if a patient expresses concern about frequentinjections, Avonex® (interferon beta-1a via intra-muscular injection, Biogen Idec) may be pre-scribed.

Because the most commonly used DMDs (theinterferons and glatiramer acetate injection)require self-injection, it is essential that patients arefamiliar with proper injection techniques. Nursescan help ensure that patients are armed with the

skills and knowledge they need. Developing aninjection education program, as described in anaccompanying abstract, can lay the foundation forlong-term adherence to an injectable agent.

Managing side effectsEach of the available agents may cause side effectsthat may make adherence difficult.

It is important to discuss with patients the poten-tial side effects of the drug they are prescribed. It ispreferable to have a patient call and report that theside effects were not as bad as expected, than havethem say the side effects were a surprise. Patientsmust feel that they can report side effects and theirconcerns.

There are multiple ways to manage specific sideeffects. For example, the injected medications,interferon beta-1b (Betaseron®), interferon beta-1a (Rebif® and Avonex®) and Copaxone® have

4

May 2005

The basis of the therapeutic relationship is understanding theemotional state and physical condition of the patient

Readiness to begin therapy will assist patients with long-term adherence

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specific injection site reactionsassociated with their use. All cancause discomfort and erythema.Interferons rarely cause skinbreakdown and local necrosis atthe injection site. Local necrosisis not usually associated withCopaxone® use. However, lipoa-trophy has been seen with the useof Copaxone®. Prevention ofthese site reactions is possiblewith meticulous site rotation.

Pain at injection sites can bemanaged with the brief (2 min-utes or less) use of ice pre-injec-tion or the use of a topical anes-thetic.

Flu-like symptoms related to the use of any inter-feron are best managed by initial dose titration,

evening injections, and the pre/post injection use ofanalgesic/antipyretics such as acetaminophen,naproxen sodium or ibuprofen. It is important tocounsel patients that flu-like symptoms generallydissipate over the first few months of interferontreatment.

Fortunately, the manufacturers of each of theMS therapies have support networks that providepatients with advice on how to manage side effects.Websites for these networks are provided on page6 of this publication. Since some neurology prac-tices do not have a nurse on staff, industry-spon-sored websites provide a valuable service forpatients, allowing them to connect with nurseswho can answer their questions.

Long-term safetyPatients frequently have questions about the long-term safety of DMDs. The currently marketed MS

treatments appear to be relatively safe in the longterm. Those initiating treatment often like to knowhow many patients have been treated with a par-ticular drug and for how long. Hearing these num-bers provides them with a feeling of confidence intheir medication.

Nurses should discuss the potential risks of DMDswith patients, but remind them when the risks areacceptable in relation to the benefits. In addition,patients should be aware that risks can be monitored.

For patients self injecting interferons, hematol-ogy and liver function must be monitored on aregular basis. When possible, patients should beasked to assume the responsibility of ensuring thatthey have the tests performed regularly. Sometimes

patients may be seen only once a year by the neu-rologist, so the patient should make sure theyhave their hematology and liver function moni-tored as prescribed.

Adherence issuesOver the long-term adherence becomes a majorissue. It is difficult for patients to be 100% adher-

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Patient Expectations

About the International Organization of MS Nurses

The mission of the International Organization of MSNurses (IOMSN) is the establishment and perpetuationof a specialized branch of nursing in multiple sclerosis;to establish standards of nursing care in multiple sclero-sis; to support multiple sclerosis nursing research; and toeducate the health care community about multiple sclerosis; and todisseminate this knowledge throughout the world.

The ultimate goal of the IOMSN is to improve the lives of all thosepersons affected by multiple sclerosis through the provision of appro-priate healthcare services.

Nurses who are interested in finding out more about the IOMSN orjoining the organization should go to http://www.iomsn.org.

Identifying a patient’s understandingof relapses and the appearance of newlesions on magnetic resonance imagingscans (MRI) is very important

Frequently treatment decisions aredriven by something that a patienttells his or her doctor

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ent the longer they are on a particular medication.For example, there are patients who have been ontherapy for 10 or more years who find it harderand harder to find a suitable injection site becausetheir skin has become so tough and thickened.

Older patients, in particular, seem to think thatonce they are in their 50’s or 60’s the disease has

run its course and they no longer need to take aDMD. Some neurologists or primary care physi-cians actually tell their patients that they need onlytake the medication until they are 50 because afterthat the disease burns itself out. This is not true,the disease can be active at any age.

Patients sometimes stop taking the medicationfor reasons not specific to the drug itself. Peoplemay change jobs and lose their insurance coverageor lose a spouse who had been administering theinjections.

There are signs that indicate patients may not beadhering to therapy. In some cases, patients try toact as if everything is going well or they avoid giv-ing direct answers. It is up to the nurse to be awareof these signs and to be able to assess what is real-ly going on.

Frequent and consistent follow-up may be help-ful in improving adherence to treatments. In addi-tion, research has shown that those individuals

who have high self-efficacy and have a good rela-tionship with their health provider will be more

likely to adhere to therapy. Thus, a therapeuticnurse-patient relationship can create the best envi-ronment to foster improved self-efficacy.

ConclusionsThe bottom line is to remind patients that living withMS is, as the saying goes, a marathon, not a sprint.Before patients are prescribed a therapy, it is essentialthat he or she have a basic understanding of the MSdisease process. By establishing an open relationshipwith patients and families early after diagnosis, nurs-es can ensure that patients feel comfortable with thetherapy they are prescribed and are able to commu-nicate their concerns and problems freely. 6

May 2005

Nurses should discuss the potentialrisks of DMDs with patients, butremind them when the risks areacceptable in relation to the benefits

Frequent and consistent follow-upmay be helpful in improving adherence to treatments

Resources

Patient orientedhttp://www.avonex.comhttp://www.mspathways.comhttp://www.mswatch.comhttp://www.novantrone.comhttp://www.mslifelines.comhttp://www.nationalmssociety.org

Health professional orientedhttp://www.mscare.orghttp://www.iomsn.org

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Patient Expectations

MS COUNSELING POINTSTM

Managing Patient Expectations

• Establish and maintain a therapeutic relationship

• Nurses should become familiar with MS and DMDs prior to counseling patients

• Educate patients about MS before prescribing an agent

• Allow patients and families time to incorporate the disease into their lives

• Encourage early initiation of therapy, but be aware that when initiating a conversation about DMDs, timing is everything

• Set realistic expectations for patients

• Stress that while DMDs can reduce the frequency and severity of relapses and slow disease progression, they are not a cure

• Identify a patient’s emotional tolerance level for relapses and theappearance of new lesions on magnetic resonance imaging scans

• Take into consideration lifestyle, subtype or severity of disease, andability to adhere to therapy when choosing a medication

• Discuss potential side effects openly with patients

• Educate patients on how to manage side effects

• Discuss the potential for long-term risks in relation to long-term benefits

• Be aware of signs of non-adherence and be prepared to addresspatients’ concerns and problems as they occur by reinforcing theimportance of continuing therapy

• Refer to pharmaceutical company telephone support lines

• Encourage consistent follow-up

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THE INFLUENCE OF RESOURCES ONPERCEIVED FUNCTIONAL LIMITATIONSAMONG WOMEN WITH MULTIPLE SCLEROSIS.

Clingerman E, Stuifbergen A, Becker H.The purpose of this longitudinal investigation was toidentify the effects of external resources (i.e., education,marriage, employment, social support, economic sta-tus) on the trajectory of perceived functional limitationamong women with multiple sclerosis (MS). Wehypothesized that these resources would have a long-term influence upon MS-related functional limitation.As part of a longitudinal study of health promotion andquality of life among persons with MS, we testedhypothesized relationships using data obtained at five

time points, using repeated-measures MANOVA. Wefound that functional limitation scores increased overtime for all participants. In general, women who wereunemployed as a result of MS consistently had higherfunctional limitation scores, and employed women con-sistently had lower functional limitation scores. Womenwith lower social support scores consistently perceivedgreater functional limitation than those with highersocial support scores. Women with lower perceived-economic-adequacy scores consistently had higherfunctional limitation scores than women with higherperceived-economic-adequacy scores. Nurses and otherhealthcare professionals are in an optimum position toobserve and assess the resources of women with MS.They can use presence, listening, and observationalskills to identify verbal and nonverbal cues of resourcedepletion. In addition, they can act as advocates forwomen with MS and speak out on policy issues andlegislation at the local and national levels. Healthcareprofessionals can thus influence the presence of

resources for those who are particularly vulnerable toresource loss, so they can participate successfully inwork, recreational, and home environments.

J Neurosci Nurs. 2004;36(6):312-21.

AGING WITH MULTIPLE SCLEROSIS.

Finlayson M, Van Denend T, Hudson E.Although multiple sclerosis (MS) does not typicallyreduce life expectancy, there has been relatively lit-tle systematic investigation of the experiences andhealth-related concerns of people aging with thisdisease. A current search of the database CINAHLproduced no articles when the search terms “multi-ple sclerosis,” “nursing” and “aging” were used. Toinitiate more dialogue about the role of nurses inaddressing the issues and concerns of people agingwith MS, a cross-sectional descriptive study wasconducted using both qualitative interviews and theadministration of standardized instruments to elicitinformation about the health concerns and serviceneeds of 27 people with MS 55 years of age andolder. Qualitatively, participants perceived that theyhad less freedom and required more assistance thansame age peers who do not have MS. Scores fromstandardized instruments support these perceptions.Participants expressed unmet needs in the areas of

housework, physical therapy, MS support groups,religious service attendance, information and refer-ral, check-in services, assistive technology use,social activities, personal care, and care coordina-tion. To address these perceptions and needs, neu-roscience nurses need to be aware of and sensitive tothe challenges of aging with MS. In addition, nurs-es must be prepared to discuss and provide infor-

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In the Literature

Nurses and other healthcare professionals are in an optimum position to observe and assess theresources of women with MS

Neuroscience nurses need to be aware of and sensitive to the challenges of aging with MS

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mation, resources, and referrals on a wide range ofhealth, social, and wellness-related services.

J Neurosci Nurs. 2004;36(5):245-51, 259.

RETHINKING COGNITIVE FUNCTION INMULTIPLE SCLEROSIS: A NURSING PERSPECTIVE.

Halper J, Kennedy P, Miller CM, Morgante L,Namey M, Ross AP.Cognitive impairment is a common problem in mul-tiple sclerosis (MS); up to 65% of patients exhibitsome neuropsychological dysfunction during thecourse of their disease. It is a major contributingfactor to unemployment, accidents, impairment ofdaily functioning, and loss of social activity in thoseaffected by MS. The areas of cognition typically

impaired are memory, attention, information pro-cessing, executive functions, and visuospatial skills.Cognitive dysfunction is independent of diseaseduration and level of disability; cognitive declinemay begin in the earliest stages of MS beforepatients become even mildly disabled. Structuralbrain imaging studies show a positive correlationbetween the extent of brain atrophy and cognitivedysfunction. Despite its prevalence in MS, cognitivedysfunction often goes undiagnosed or is misdiag-nosed as depression, stress, stubbornness, lack ofintelligence, or psychosis. Because nurses play suchan important role in the care of patients with MS,they are in a position to identify patients with cog-nitive dysfunction, educate patients and their fami-lies on ways to cope with cognitive deficits, andcounsel patients on available treatment options.Practical guidelines help nurses identify and care forcognitively impaired MS patients.

J Neurosci Nurs. 2003;35(2):70-81

THE MEANING OF FATIGUE FOR WOMEN WITHMULTIPLE SCLEROSIS.

Olsson M, Lexell J, Soderberg S.AIM: This paper reports the findings of a study thataimed to elucidate the meaning of fatigue for womenwith multiple sclerosis (MS). BACKGROUND:Living with chronic illness can involve giving up

usual activities. MS is a chronic autoimmune diseaseof the central nervous system. Fatigue is a commonexperience among people with MS; however, little isknown about the meaning of fatigue experienced bywomen with this condition. METHOD: Ten womenwith MS were interviewed about their experience offatigue. A phenomenological hermeneutic methodinfluenced by Ricoeur was used to interpret the tran-scribed interviews. FINDINGS: The findings werepresented in two major themes with five subthemes;experiencing the body as a barrier and experiencing adifferent absence. Fatigue seemed to give rise to anexperience of being absent and divided into twoparts. This also led to a feeling of not being able toparticipate in the surrounding world. The feeling ofbeing an outsider and lacking the ability as a healthyperson is interpreted as a form of suffering. Althoughthe fatigue had a great impact on the women's dailylife, the women still hoped for some relief. Fatigueseemed to imply that instead of working as an imple-ment to manage in the world the body has become an

enemy of survival. CONCLUSION: This study high-lights the importance for nurses of understandinghow women with MS experience fatigue, which is a

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Patient Expectations

Despite its prevalence in MS, cognitive dysfunction often goes undiagnosed or is misdiagnosed as depression, stress, stubbornness,lack of intelligence, or psychosis

This study highlights the importancefor nurses of understanding howwomen with MS experience fatigue,which is a prerequisite for communication based on a sharedunderstanding

The feeling of being an outsider andlacking the ability as a healthy personis interpreted as a form of suffering

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prerequisite for communication based on a sharedunderstanding. This awareness would enhance nurs-es' opportunities to alleviate suffering. More researchis needed to investigate what kinds of interventionscan help these women to manage their everyday livesand to maintain a sense of normality despite theirfatigue and illness. Such interventions should be sub-ject to empirical evaluation research.

J Adv Nurs. 2005 Jan;49(1):7-15. Related Articles, Links

HUSBANDS AND WIVES LIVINGWITH MULTIPLE SCLEROSIS.

Courts NF, Newton AN, McNeal LJ.Multiple sclerosis (MS) frequently is diagnosed inyoung adults. Coping with symptoms of MS is chal-lenging not only for the person with the disease, butalso for his or her spouse. The well spouse oftenassumes the caregiving role. The purpose of thisqualitative research was to investigate the experi-

ences of persons whose spouses have MS. Twelvepeople participated in a 2-hour focus group: 8 menand 4 women. The husbands were, on average, 50years old, and the wives averaged 55 years old. Thelength of time since diagnosis ranged from 2 to 11years for the husbands and from 3 to 13 years forthe wives. The focus group discussions were audio-taped and transcribed verbatim. Participants talkedfreely. Four major themes emerged: caregiver roles,need for information, relationship changes, and bar-riers. Men attempted to protect their wives' energy,intervening for them. Wives encouraged independ-ence in their husbands. Spouses need informationabout MS, complementary interventions, and sup-port. They want increased public awareness of invis-ible symptoms and awareness in the workplace ofcontinuing capabilities of persons with MS. Rolereversals were challenging for the women who feltthat "MS is the third person in a marriage." Spouses

need help to maintain appropriate boundaries.Limitations of the study include the small, econom-ically homogeneous sample and the single encounterwith the subjects. A longitudinal intervention studyis needed.

J Neurosci Nurs. 2005 Feb;37(1):20-7. Related Articles, Links

LONGITUDINAL ANALYSIS OF ILLNESSUNCERTAINTY, COPING, HOPEFULNESS, AND MOOD DURING PARTICIPATION INA CLINICAL DRUG TRIAL.

Wineman NM, Schwetz KM, Zeller R, Cyphert J.The purpose of this longitudinal study was to exam-ine the relationships among illness uncertainty, cop-ing effectiveness, hopefulness, and mood in personswith chronic, progressive multiple sclerosis (MS)during participation in a double-blind clinical drugtrial. The similarities and differences in the patternof relationships among variables were investigatedwithin each of four data collection time frames andacross time. The convenience sample comprised 52participants with clinically definite MS who partici-pated in a 2-year trial using methotrexate to treatprogressive MS. Participants with more severe dis-ability were found to be less hopeful and more emo-tionally distressed. Participants with higher levels ofhopefulness used more effective coping strategiesand had more positive moods, and those withgreater uncertainty about their MS were likely toexperience less hopefulness and more negativemoods. The pattern of relationships among uncer-

tainty, coping, hopefulness, and mood did notchange throughout participation in the drug trial.The findings may be used as a foundation for plan-ning nursing interventions with patients involved indrug studies.

J Neurosci Nurs. 2003;35(2):100-6.

Men attempted to protect theirwives' energy, intervening for them.Wives encouraged independence intheir husbands

The findings may be used as a foundation for planning nursinginterventions with patients involvedin drug studies

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MS COUNSELING POINTSTM

Managing Patient Expectations

TELL US WHAT YOU THINKWe are anxious to hear your comments about this premier issue of Counseling PointsTM. We would also likeyou to share any suggestions you may have for future issues.

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66 South Maple AvenueRidgewood, NJ 07452

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