The Role of the Nurse The Role of the Nurse Practitioner in the USAPractitioner in the USA

Colleen Miller, RN, NP, DNS, MSCNThe Jacobs Neurological Institute

The State University of New York at Buffalo

Kaleida Health Care System

Buffalo, New York, USA

Historical PerspectiveHistorical PerspectiveGrew out of the role of the public health nurse

Broad Scope of Practice

Autonomy

Physician shortage in the 1960s and 1970s

Vietnam War

Women's Movement (raised awareness)

Nurse Practitioners had a new focus

Primary Care

Meet the needs of urban and rural communities

Historical Perspective (continued)Historical Perspective (continued)

Pediatric NP program at University of Colorado in 1965

Shifted focus to Health Promotion

20,000 NP graduates employed in 1984

63,191 NP graduates employed in 1986

Increasing demand

Acute Care NP

Intra-Professional DynamicsIntra-Professional Dynamics

Prescriptive authority

Varies among states

NP Autonomy

Collaboration vs. supervision

Reimbursement

Third party payors

“Incident to”

APN (NP) CompetenciesAPN (NP) CompetenciesDirect clinical practice

Expert coaching/guidance (education)

Consultation/collaboration

Research

Leadership (empowerment, change agency, activism)

Ethical decision making skills

NPs Research RoleNPs Research Role

Evolved away from Independent Research

Focus on interpretation and use of research Research utilizationEvidence based practice

Collaborative research

NP in Collaborative ResearchNP in Collaborative Research

Collaborative nursing or interdisciplinary

Setting dependent

NP is the liaison to the patient populationUnderstands clinical issues of the populationFamiliar with nursing practice problems in the

setting

NP has insight into feasibility issues

NP ResearchNP Research1. Conceptual phase

1. Design and planning phase

1. Empirical phase

1. Analytic phase

1. Dissemination phase

Examples of NP ResearchExamples of NP ResearchMeeting the needs of the homeless

Impact of genetic teaching on colon cancer patients

Outcome improvement utilizing the perioperative NP

Prostate cancer outcomes

Impact of APN on home follow-up of elders

NP outcomes of chronic care patients

Clinical outcomes of the Critical Care NP role implementation

Personal Role DevelopmentPersonal Role Development

•1974 Nurse’s aide

•1979 Licensed Practical Nurse

•1980 Registered Nurse (BS)

•1991 Clinical Nurse Specialist (MS)

•1996 Nurse Practitioner (MS-P)

•1997 Doctorate of Nursing Science (NP + faculty)

My NP RoleMy NP Role

Patient care management

Direct patient care

Education (patients/professionals)

Administration (leadership)

Consultation/collaboration

ResearchMS team

Independent

Collaboration in ResearchCollaboration in ResearchScherer YK, Haughey BP, Wu YB, Miller CM. A longitudinal study of nurses’ attitudes toward caring for patients with AIDS in Erie County. The Journal 1992; 23:10-15.

Jezewski MA, Scherer YK, Miller CM, Battista E. Consenting to DNR: Critical care nurses interactions with patients and family members: study. The American Journal of Critical Care 1993; 2(4):302-309. Jacobs LD, Cookfair DL, Rudick RA, Herndon RM, Richert JR, Salazar AM, Fischer JS, Goodkin DE, Granger CV, Simon JH, Alam JJ, Bartoszak DM, Bourdette DN, Briaman J, Brownscheidle CM, Coats ME, Cohan SL, Dougherty DS, Kinkel RP, Mass MK, Munschauer FE, Priore RL, Pullicino PM,

Scherokman BJ, Weinstock-Guttman B, Whitham RH, and The Multiple Sclerosis Collaborative Research Group. Intramuscular interferon beta-1a for disease progression in relapsing multiple sclerosis. Annals of Neurology 1996; 39 (3): 285-294.

Jacobs LD, Kaba SE, Miller CM, Priore RL, Brownscheidle CM. Correlation of clinical, MRI, and CSF findings in optic neuritis. Annals of Neurology, 1997; 41:392-398.

Greenberg SJ, Fujihara K, Selkirk SM, Yu F, Du TL, Glenister N, Hohmann P, Rickert MH, Spence PO, Miller CE, Jacobs LD. Novel compound tetra-, dinucleotide microsatellite polymorphism in the tumor necrosis factor/lymphotoxin locus. Clinical and Diagnostic Laboratory Immunology, 1997; 4(1): 79-84.

Benedict R, Jacobs L, Miller C, Munschauer F and Shapiro A. Patholological affect and organic personality disorder in multiple sclerosis. (abstract) Archives of Clinical Neuropsychology, 1998

Simon J, Jacobs L, Campion M, Wende K, Simonian N, Cookfair D, Rudick R, Herndon R, Richert J, Salazar A, Alam J, Fischer J, Goodkin D, Granger C et

al and The Multiple Sclerosis Collaborative Research Group. Magnetic resonance studies of intramuscular interferon ß-1a for relapsing multiple sclerosis. Annals of Neurology 1998; 43:79-87.

Nguyen LT, Ramanathan M, Munschauer FE, Brownscheidle CM, Krantz S, Umhauer M, Miller C, DeNardin E, Jacobs LD. Flow cytometric analysis of in vitro proinflammatory cytokine secretion in peripheral blood from multiple sclerosis patients. Journal of Clinical Immunology 1999; 19:179-185.

Mojon DS, Fujihara K, Hirano M, Miller C, Lincoff NS, Jacobs LD, and Greenberg SJ. Leber’s hereditary optic neuropathy mitochondrial DNA mutations in familial multiple sclerosis. Archives of Clinical Experimental Ophthalmology 1999; 237:348-350.

Miller C, Jacobs L. Patients’ experience with interferon beta 1-a (AVONEX). Multiple Sclerosis 1999; 5: S100.

Benedict RHB, Shapiro A, Priore RL, Miller CM, Munschauer FE, Jacobs LD. Neuropsychological counseling improves social behavior in cognitively-impaired multiple sclerosis patients. Multiple Sclerosis 2000; 6, 391-396.

Benedict RHB, Priore RL, Miller CM, Munschauer FE, Jacobs LD. Personality disorder in multiple sclerosis correlates with cognitive impairment. Journal of Neuropsychiatry and Clinical Neurosciences, 2001; (13) 1: 70-76.

Miller C, Jezewski MA. A phenomenologic assessment of relapsing MS patients’ experiences during treatment with interferon beta-1a. Journal of Neuroscience Nursing 2001; (33) 5: 240-244.

Ramanathan M, Weinstock-Guttman B, Nguyen LT, Badgett D, Miller C, Patrick K, Brownscheidle C, Jacobs L. Journal of Neuroimmunology, 2001; 116, 213-219.

Benedict RHB, Bakshi R, Simon JH, Priore R, Miller C, Munschauer F. Frontal cortex atrophy predicts cognitive impairment in multiple sclerosis. Journal of Neuropsychiatr and Clinical Neurosciences, 2002; 14, 44-51.

Bakshi R, Suri S, Benedict RHB, Weinstock-Guttman B, Tjoa W, Fabiono AJ, Santa Maria M, Miller CE, Gallagher E, Feichter J, Munschauer FE. Bright lesions in the brain on non-contrast T!-weighted MRI Scans (T1 shortening) in multiple sclerosis (abstract). (2002 annual meeting of the American Academy of Neurology- Denver, CO). Neurology 2002;58(Suppl 3):A208-9.

Fabiano AJ, Bermel R, Tjoa CW, Weinstock-Guttman B, Munschauer FE, Feichter J, Miller CE, Gallagher E, Bakshi R. Diffusion-weighted MRI evidence of gray matter damage in multiple sclerosis. (abstract) (2002 annual meeting of the American Academy of Neurology- Denver, CO). Neurology 2002;58(Suppl 3):A156-7.

SampleSample• 7 women

• 3 men

• Ages 40 – 59

• Disease duration 2 – 39 years

• Diagnosed at ages 24 – 51

• All Caucasian

• 8 married with children

ThemesThemes

1. Social network

2. Adjustment

3. Coping

4. Hope/hopelessness

5. Control

6. Conflict

Themes (continued)Themes (continued)

7. Relief with diagnosis

8. Uncertainty

9. Loss

10.Fear

11.Getting to know MS

12.Revealing/concealing

Essence of the ExperienceEssence of the Experience

The lived experience of relapsing MS is primarily one of uncertainty and learning to cope with an illness that cannot be predicted. The experience often starts with odd symptoms which defy diagnosis and stress the social support network. There is a sense of relief when a diagnosis is made and the long process of learning about and adjusting to the disease begins. With the diagnosis of a chronic illness comes the loss of the former healthy self and unbridled abilities. Those who have adjusted well to their experience of relapsing MS have learned to control their disease and maintain a sense of hope. Many feel it is necessary to conceal their illness from the general public that does not understand and even fears the illness as a contagion.

SampleSample• 8 women

• 7 men

• Ages 28 – 55

• Disease duration 10 months - 25 years

• Duration of treatment 4 – 41months (mean 18 month)

• 13 employed, 2 homemakers, 1 disabled back injury

Theme ClustersTheme Clusters

1. Learning

• Diagnosis

• Getting to know

• Symptoms

• Other treatments

Theme Clusters (continued)Theme Clusters (continued)

2. Feelings

• Uncertainty

• Hope

• Relief

• Fear

Theme Clusters (continued)Theme Clusters (continued)

3. Adaptation

• Control

• Coping

• Adjusting

• Concealing

• Social support

Theme Clusters (continued)Theme Clusters (continued)

4. Interferon beta 1-a Issues

• Side effects

• Insurance

• AVONEX Resources

• Injections

• Life on IFN beta 1-a

Essence of the ExperienceEssence of the Experience

Patients on AVONEX made progress in adjusting to the medication when once they learned to cope with the injections. For most, the side effects diminished over time. Social support was important, especially for those who had difficulty self-injecting. Some were unable, or chose not to self-inject but found that such problems did not stop them from receiving the medication. Most expressed a sense of improvement in their condition after starting AVONEX. They felt that exacerbations were less frequent and milder. Some felt less fatigued. They considered AVONEX part of their hope for the future.

The Lived Experience of Relapsing MS Patients Treated with Glatiramer Acetate: A Phenomenological Investigation

Colleen Miller, DNS, RN, MSCN and Mary Ann Jezewski, PhD, RN, FAAN

INTRODUCTIONINTRODUCTION

RESEARCH OBJECTIVESRESEARCH OBJECTIVES

CHOOSING COPAXONEThe decision to start Copaxone is a complex one that was sometimes made by the patient and at others by the physician. Regardless of who chose the medication, the patient ultimately had to agree to start the process. Several of the participants were given information on a number of disease modifying medications then instructed to review the material and make up their own mind as to which medication they would prefer to take. When given the options in this manner their choice of Copaxone was based on side effects such as the over-all side effect profile, no liver toxicity, no flu symptoms, no lost days from side effects.In this sample several of the participants had switched to Copaxone after being on one of the other disease modifying agents. The decision to switch was sometimes initiated by the health care provider and other times by the patient. Reasons for switching included intolerable side effects from the other agent, development of neutralizing antibodies to the other agent, financial constraints, and breakthrough relapses.

Given a choice#2 [The doctor] gave me a Copaxone video and the AVONEX video and I watched them and decided on Copaxone.#1 I had options….Avonex and the one that starts with a “B” and Copaxone. So I said which one doesn’t affect the liver and [the doctor] said Copaxone, so I said OK we are going to go with that.

Health Provider Recommended#12 He mentioned at one of my visits that he had a few patients on it and they were doinpretty good.#13 He recommended Copaxone. He felt it had a better success rate.

Switching#6 The other injectables were also beta interferon, which those are the drugs to which I had developed antibodies…..It was like I had to go on that because it was the only injectable that was available to me at that point….#7 [Provider] told me the Copaxone may work better for me because the side effect are not as harsh.

ADVICE TO OTHERSParticipants in the study had long term experiences with MS as well as the Copaxone. They offered suggestions for other people with MS to maximize quality of life. All participants emphasized the importance of living a healthy lifestyle. Avoiding stress, getting regular exercise, and consuming a good diet were most often emphasized.

#1 That is the one thing I tell someone is that exercise is huge! Exercise as much as you can and eat a good diet.

#15 The most important thing you can do is keep exercising.

#2 Definitely do it [Use Copaxone]! There is no side effects and I have researched the ingredients and it is so natural. I mean, I would do it, it is the least you could do for yourself. I can't imagine just not doing anything.

RESULTSRESULTS

DESIGN / METHODSDESIGN / METHODSCONCLUSIONCONCLUSION

Hermeneutic Phenomenology (Qualitative)

Data Collection- Formal, semi-structured interviews lasting approximately 1 hour- Audio-taped and transcribed verbatim- All identifying information removed to protect participant privacy- Data loaded to Atlas Qualitative Data Analysis computer program

Data Analysis- Colaizzi’s method to extract significant statements- Significant statements analyzed to higher level of abstraction- Formulated meanings developed- Themes and Theme Clusters formed that represent experiences- Exhaustive description of the experience developed

Sample- 14 women (70%), 6 men (30%)- Ages 39 to 64 (mean 46)- Diagnosed 0 to 21 years (mean 9 years)- Years on Glatiramer Acetate 1 to 7 (mean 4 years)- 8 switched from other disease modifier (40%)- All participants presently on Glatiramer Acetate (Copaxone)

To develop an understanding of the experience of MS patients with Glatiramer Acetate (Copaxone) in order to provide an accurate foundation for patient education and counseling.

Relapsing multiple sclerosis (MS) is an autoimmune disease of the central nervous system that results in demyelination and axonal degeneration. Symptoms related to the neuronal tissue damage may include visual loss, weakness, imbalance, changes in sensation, movement disorders, bladder or bowel dysfunction, depression, or cognitive impairment. The majority of patients diagnosed with MS are young women between the ages of 20 and 40 years. Prior to the introduction of disease-modifying medicines in the late 1990s, there were no effective therapeutic interventions to alter the course of this progressive illness.

Today, MS patients are offered the opportunity to limit destruction of the central nervous system with these medicines, which require frequent injections and lifestyle adjustments. This study describes the experiences of patients prescribed Glatiramer Acetate (Copaxone). With this information, patients, families, and practitioners will develop a better understanding of the experience. They will then be aware of the life changes to anticipate and better able to develop strategies for coping with them.

Qualitative phenomenological research methods were used in this study to investigate and describe the experiences of relapsing MS patients who are being treated with Glatiramer Acetate (Copaxone). All participants had taken this medication consistently for no less than 12 months.

This research was supported by a grant from Teva Neurosciences

SELECTED THEMES

Patients with relapsing multiple sclerosis experience a complex process of adjustment when they are diagnosed with the disease and come to the decision to start aggressively treating the illness to insure a healthy future. They view Copaxone as an integral part of the formula to maintain control over their bodies and successfully manage the disease. Taking the Copaxone injection every day becomes easier as time goes on. The side-effects are minimal and manageable. Though uncertainty about the future is pervasive, taking Copaxone is an active step in the right direction.

SELF-MANAGING CAREThe participants in the study were, for the most part very proactive in managing and controlling their care. The two principal components of self-managing revolved around their interactions with their providers. They questioned the treatment they received. They researched current treatments and questioned their providers about these treatments. A few participants stated that they changed doctors when the previous doctor did not offer the guidance with treatment they were seeking.The second major component of self-management was related to the administration of Copaxone. The participants in the study discussed at length how they started on Copaxone. One participant suggested Copaxone to her provider. Others switched from a beta interferon to Copaxone when Copaxone became available. Each of the participants discussed how they weighed the pros and cons of Copaxone versus other medications. Once the decision was made to begin Copaxone, participants remained in control of the administration by determining when, how and where they would administer. A small number even made decisions whether they would administer Copaxone on any given day. Self-management of care was very important to those who participated in this study. They wanted control over the management of their multiple sclerosis.

#3 The biggest thing about multiple sclerosis is that you feel so helpless. You know, every day you take a body count; what's working, what's not, what's numb, what's not. This way [injecting Copaxone] I feel like I am doing something progressive to help it. I was weary about the whole shot thing too. I mean I am not a needle phobic or anything, like some people are, which make it even more difficult for them but it helps, it really, really helps.I am very pleased with it.

INJECTING COPAXONEParticipants discussed at length the topic of injecting Copaxone. Many termed it a daily ritual; others labeled it their routine. The ritual/routine of daily injections varied among those who participated in the study. But an overarching theme was that they determined what the routine would look like based on their lifestyles and how the injection routine best fit their and their family’s daily routine. They were acutely aware how the injections affected them both locally to the skin and systemically. Most participants had specific routines related to rotation of sites and some stated they did not use particular areas of their body to inject. The area that was least used were the arms. Daily injecting became easier over time. Some participants talked about their initial fears about injecting and all participants’ experiences varied related to the initial teaching they received while learning to inject. Some participants were on beta interferon before starting on Copaxone. They found the Copaxone injections easier with much less pain than the beta interferon. The drawback to Copaxone was that it needed to be injected each day versus once a week. Side effects of injecting were minimal and most frequently related to localized reactions.

#15 If you have never given yourself an injection before, you think about when you got shots in your arm and it hurt……and you can’t imagine that it would be something where you can just do it automatically. But it really is, I do it the first thing in the morning. I take oral medication and then I take my injection….. I can do it when I am half asleep. Especially now that it is all mixed up, where before you use to have to mix it together, now it is all mixed up.

POST INJECTION SIDE EFFECTSThe participants discussed many different side effects as a result of injecting Copaxone. Most of the side effects were seen as minor inconveniences. Systemic side effects included chills, spasms, heart palpitations, panic attacks, trouble breathing. These systemic side effects occurred much less frequently than local side effects. Local side effects experienced by the participants in the study included bruising, rash, redness, swelling or thickening of tissue at the site of the injection. Other localized post injection effects included itching and pain or tenderness at the injection site.Interestingly, several participants offered remedies to minimize local reactions. The most frequently mentioned was massaging the site of the injection. Other remedies included careful rotation of injections, using ice and immobilizing the area after injecting.Several participants thought that their localized reactions were fewer and less severe with the pre-mixed Copaxone and/or the use of the autoinjector.Most participants viewed Copaxone as having fewer side effects than other medications they had taken for their multiple sclerosis. This often weighed on their decision to start and remain on Copaxone despite the fact that they had to inject every day.

#13 Side effects were part of the consideration, you know. I mean it wasn’t a big part of it but it seemed Copaxone had a lot less and at that time my kids were younger and I was concerned about that because I wanted to be able to function. I work full time, it is necessary for me to work and I needed something to make it more normal-like.

RESEARCH OBJECTIVESRESEARCH OBJECTIVES

To develop an understanding of the experience of MS patients with Glatiramer Acetate (Copaxone) in order to provide an accurate foundation for patient education and counseling.

DESIGN/METHODSDESIGN/METHODS

Hermeneutic Phenomenology (Qualitative)

Data Collection- Formal, semi-structured interviews lasting approximately 1 hour- Audio-taped and transcribed verbatim- All identifying information removed to protect participant privacy- Data loaded to Atlas Qualitative Data Analysis computer program

Data Analysis- Colaizzi’s method to extract significant statements- Significant statements analyzed to higher level of abstraction- Formulated meanings developed- Themes and Theme Clusters formed that represent experiences- Exhaustive description of the experience developed

Sample- 14 women (70%), 6 men (30%)- Ages 39 to 64 (mean 46)- Diagnosed 0 to 21 years (mean 9 years)- Years on Glatiramer Acetate 1 to 7 (mean 4 years)- 8 switched from other disease modifier (40%)- All participants presently on Glatiramer Acetate (Copaxone)

CONCLUSIONSCONCLUSIONS

Patients with relapsing multiple sclerosis experience a complex process of adjustment when they are diagnosed with the disease and come to the decision to start aggressively treating the illness to insure a healthy future. They view Copaxone as an integral part of the formula to maintain control over their bodies and successfully manage the disease. Taking the Copaxone injection every day becomes easier as time goes on. The side-effects are minimal and manageable. Though uncertainty about the future is pervasive, taking

Copaxone is an active step in the right direction.

Thank youThank you