Reflections on 50 Years of Neuroscience Nursing: Movement Disorders, Neuromuscular Disease, and Multiple Sclerosis.
The year 2017 marked the 200th anniversary of James Parkinson's essay "The Shaking Palsy." During the course of 50 years, Journal of Neuroscience Nursing (JNN) has documented and supported advances in the treatment of Parkinson disease (PD). Before the 1960s, the medical world did not have much to offer patients other than surgical procedures in an attempt to ameliorate tremor. During the 1960s, Barbeau discovered that individuals with PD had decreased dopamine in the basal ganglia, thus leading to the development of L-dopa. (1)
In the early issues of JNN, Paul Buey (2) published an essay describing various "types" of abnormal involuntary movements, the pathogenesis of such movements, the available medications such as atropine and belladonna, and the effectiveness of stereotactic surgical interventions for the treatment of tremor. At the same time, Buey predicted the advancement of surgical procedures for movement disorders. Whereas surgery was virtually the only treatment in the 1950s and 1960s, in the 1980s, surgery was considered only in those patients who exhausted medical management. (3) Pallidotomy was reintroduced in 1985, and Gilbert et al (4) provided an overview of the nursing care required of these patients to include an understanding of the disease process, the medications required, and the psychological support needed during the course of the illness. Surgical options for the treatment of PD evolved, and deep brain stimulation (DBS) was introduced in the 1990s. Whereas stereotactic lesions are permanent, DBS is reversible, and adjustments can be made as the disease progresses. (5) In 2004 and 2005, JNN published articles providing cutting-edge information regarding early successes of DBS implantation, as well as the challenges of the therapy to the healthcare provider and to the patient including programming the stimulator and any adverse effects of implantation. (6-9) As DBS became more popular as a treatment option, nursing began to investigate the care and support provided by nursing to patients and their families, that is, preoperative and postoperative education and overall expectations of the surgical procedure. (10,11) As of 2016, Lanier and Buffum identified continued gaps in the care of the DBS patient and challenged neuroscience nurses to further research tools and delivery methods for the education of patients and caregivers.
L-dopa (Sinemet) became the mainstay of treatment during the 1970s and into the 1980s. In keeping with the mission of the American Association of Nursing, JAW published articles providing detailed descriptions of the pathophysiology of PD, as well as pharmacological advances (ie, anticholinergics, amantadine, antihistamines, and dopamine agonists). (12,13) Interestingly, during this period, there were many questions about when to treat the patient and how to implement drug holidays.
Patients with PD are plagued with motor symptoms including tremor, rigidity, postural instability, and bradykinesia. As a result, these patients are at a high risk for fall as indicated in Gray and Hildebrand's (14) descriptive study. Sadowski et al (15) examined the awareness of fall risk of patients with PD finding that, although patients are aware of their risk, they lacked awareness of factors contributing to risk, such as medication use, thereby encouraging nursing to develop educational programs for patients and evaluating effectiveness of such programs. Hurwitz (16) and Sunvisson et al (17) published their research on the benefits of exercise in PD. Findings indicate that regular exercise may promote self-care in activities of daily living, as well as improvements in motor function.
While JNN continued to provide pharmacological updates, nursing shifted focus to the psychosocial aspects and nonmotor symptoms of PD. (18-20) Depression is a significant component of PD due to neurochemical changes within the brain. (21-22) Fatigue is a prevalent nonmotor symptom causing disability and reduced quality of life. Studies examining aspects of fatigue, as well as treatment of fatigue, in PD are lacking, providing opportunity for further study. (23) A review of the literature by Hermanns et al (24) reveal that numerous studies have examined the pharmacologic treatment of the psychosocial aspects of PD such as depression and anxiety; however, research is lacking in regard to holistic, spiritual, and biopsychosocial treatments, thus calling for more focused research. Marr's (25) phenomenological research provided insight into those living with PD, specifically, adjustment to the disease process, whereas Edwards and Scheetz's (26) study examined the caregiver burden finding that the disease affects not only the patient but also the caregiver. In fact, Martin (27) examined the psychosocial challenges experienced by partners of people with PD and found that partners not only experience the challenges of being the caregiver but also oftentimes shoulder the burdens of day-to-day life such as mnning of the household and financial responsibilities. Ultimately, the findings suggest that the approach to treatment of PD should be family centered, that is, care of the patient and the caregiver.
Other Movement Disorders
In addition to PD, JNN has published a handful of articles regarding other types of movement disorders including Wilson disease, Huntington disease, Tourette syndrome, and Parkinson-plus syndromes. Regan, (28) Basner. (29) Grossman, (30) and Stiever et al (31) presented case studies of Wilson disease to include the pathogenesis, clinical manifestation, treatment, and nursing care plan of the patient with the disease. Wick and Dohrmann, (32) Jackson, (33) and Hunt and Walker (34,35) provided overviews of Huntington disease including genetics, as well as complications associated with the disease. Carter (36) and Rea (37) provided insight into Tourette syndrome along with nursing implications including medications and psychosocial support. In 1988, Christensen (38) highlighted a case presentation of a patient with progressive supranuclear palsy (PSP) educating nurses on the clinical manifestations and nursing implications on care for the patient with PSP. Ward (39) also presented a case study indicating the need for a multidisciplinary approach to the treatment for the patient with PSP. In 2016, JNN published the first clinical research regarding PSP focusing on patient and caregiver support. The Cure PSP Care Guide used telephone interviews to educate and provide support. Given the advances with telemedicine, further research is warranted to determine the effectiveness of tele-health interventions by nursing professionals. (40)
In 1973, JNN published an essay entitled "Motor Neuron Disease--What Can We Do?" (41) In the essay, Hummel described the pathology and clinical manifestation of the disease along with nursing considerations in caring for the patient with the disease. Hartley's (42) essay reaffirmed the pathology and clinical manifestations of amyotrophic lateral sclerosis (ALS) and expanded on the nursing considerations previously cited by Hummel, and Olsen (43) introduced the fund-raising and research of the ALS Foundation begun in 1971. Stone (44) presented several case studies of patients with ALS and suggested possible causes of ALS, and Kim (45) addressed the psychosocial aspects of the fatal disease. Tidwell (46) summarized the treatment of respiratory failure, nursing care, the ethical issues associated with long-term mechanical ventilation, and advanced directives. Neatherlin (47) provided a pharmacologic update on riluzole, the only approved treatment of ALS. As we entered the second millennia, JNN revisited ALS with an essay by Charles and Swash (48); unfortunately, the only new discovery was a gene allowing classification of the disease into subcategories. The first quantitative study was published in 2014 exploring the experiences of the patient with ALS during the course of the illness, that is, a "journey of suffering" providing a further understanding of the needs of the ALS patient and family. (49)
Guillain-Barre syndrome (GBS) was described by Georges Guillain, J.S. Barre, and A. Strohl in 1916. The JNN has published comprehensive reviews of the illness replete with pathophysiology, treatment plans, and nursing considerations. (50-55) Blanco and Cuomo (56) described Cuomo's lived experience with GBS, whereas Edwards (57) presented a case study of a maternal GBS and considerations specific to the pregnant woman. To date, there has been no nursing research regarding GBS published in JAW; however, given the disabling nature of the illness, there is an opportunity to study both the physiologic and psychosocial impact on patients and caregivers.
Myasthenia gravis (MG) has been a known entity since the early 1900s. Initial treatment was supportive until the 1950s with the introduction of anticholinesterase drugs and then, later, thymectomy. (58) In the 1960s, MG was determined to be an autoimmune disease, and in the 1970s, plasmapheresis was used as a means to remove antiacetylcholine receptor antibodies. Anchie (59) presented a review of plasmapheresis and the responsibilities of the nurse, and Hrovath (60) described the nursing care of patients with MG along with medication management and invasive treatments such as plasmapheresis. Furthermore, Noroian (61) and George (62) elaborated on the nursing diagnoses and nursing interventions associated with the care of patients with MG. In 1990, JAW published Hood's (63) descriptive study examining the means by which patients with MG manage their illness, discovering that many follow strict regimens to avoid crises. In addition, Grohar-Murray et al (64) surveyed patients with MG using the Myasthenia Gravis Fatigue Scale to determine the impact of fatigue on activities of daily living and how these patients manage fatigue, as well as how nursing interventions can improve fatigue. Kittiwatanapaisan et al (65) validated the Myasthenia Gravis Fatigue Scale confirming that activity restriction was the best predictor for fatigue severity.
Other neuromuscular disorders have been touched upon briefly in JAW. In 1976, Coleman (66) presented the success of percutaneous radiofrequency thermal selective sensory rhizotomy in 23 cases of spasticity in the spinal cord-injured patient. Butterworth (67) reviewed the techniques of nerve repair and introduced interfascicular autologous grafting. Additional disease processes of interest to the journal included spasmodic torticollis, ulnar nerve compression in bedridden patients, and diabetic neuropathy. (68-70) Two articles published in 1998 focused on intrathecal baclofen. Rawlins (71) detailed spasticity, the procedure for implantation, and the management of an intrathecal baclofen pump, whereas Gianino et al (72) discussed findings from their prospective study exploring the effect of reduced spasticity on quality of life.
At the start of American Association of Nursing and JAW, treatment of multiple sclerosis (MS) was in its infancy. In the early years of the journal, JAW published multiple articles discussing the historical perspective of the illness, pathology, theories on etiology, available treatment, and nursing considerations in the treatment for the patient with MS. (73-77) Early treatments included adrenocorticotropic hormone, steroids, immunosuppression (methotrexate, azathioprine), a low-fat diet, and symptom support. (78) Hartshorn (79) and Schweitzer (80) discussed the experimental nature of treatment with combination immunosuppression therapy and nursing care required of patients receiving the treatment.
Along with experimental treatment, management of symptoms was crucial to patients. Holland et al (81) discussed the data from their exploratory survey regarding neurogenic bladder, finding that degree of disability did not correlate with bladder dysfunction. Holland et al (82) reaffirmed the disabling nature of urinary dysfunction in patients with MS, and Henderson (83) presented case studies describing intermittent self-catherization as an intervention for neurogenic bladder. Csesko, (84) Dewis and Thornton, (85) Weiss, (86) and Fraser et al (87) elaborated on the psychological and physical effects of sexual dysfunction along with interventions to assist patients and their partners. A review of the literature by Acom and Andersen (88) suggested that depression was the most common mood disorder in the patient with MS. Cognitive and attentional impairments have been identified as early symptoms of MS, sometimes appearing before physical impairment. (89-93) Other psychosocial aspects including chronic sorrow, (94-96) caregiver stress, (97-100) learned helplessness, (101) lived experience, (102-110) coping strategies, (111) caregiver support, (112-114) fatigue, (115-117) emotional well-being, (118) self-efficacy, (119,120) quality of life, (121-123) end-of-life care planning, (124) and comorbid conditions have been presented in JAW during the course of several decades. (125)
Physiological aspects of MS have also been discussed in JAW including pain, (126-128) aging, (129-131) pregnancy, (132) osteoporosis, (133) and bowel dysfunction. (134) Newland et al (135) studied symptom clusters in women with MS, finding that pain, fatigue, depression, sleep disturbance, and impaired cognition form a cluster adversely affecting activities of daily living. Boyd and MacMillan (136) provided insight into children and adolescents living with MS.
Disability is a significant component of MS, and scales have been developed to determine the extent of disability in patients with MS. (137) Studies have examined interventions aimed at promoting wellness in patients with MS. (138-140) Several studies have focused on nutrition, supplements, and vitamins. (141,142) Factors contributing to adherence of the treatment plan have been studied in detail along with managing injection difficulties and techniques. (143-149) Clingerman et al (150) presented data regarding functional limitations and availability of resources to women. Ross et al (151) used questionnaires in practice to aid in monitoring of disease progression.
A breakthrough in the treatment of MS came with the US Food and Drug Administration approval of Betaseron in 1993. The JAW published a pharmacological update in the first issue of the journal in 1994. (152) Future articles addressed adverse events and management of the events, (153) patient education regarding self-injections, (154,155) and the role of interferon in the treatment of MS. (156-158) The JNN continued to provide pharmacological updates as new treatments of MS became available starting with Copaxone in 1998 and cladribine in 20 08. (159-160) The first oral therapies began to emerge in 2010 bringing with them safety and efficacy concerns requiring more stringent monitoring for adverse events. (161) Pegylated interferon was introduced, providing yet another formulation of interferon for patients. (162)
As the journal has advanced, so too has technology. In the 1990s, strides were made in use of magnetic resonance imaging in the diagnosis and treatment of MS. (163) In the new millennium, researchers continued to search for an etiology of MS and a better understanding of the pathophysiology of MS. (164) Patient education has been a key component to management of MS and has continued to evolve with the advent of newer, more complex therapies. (165,166) Also important has been the education of nurses regarding advancement of treatment options. (167) Results of the BENEFIT study were presented by Webb indicating that early treatment with interferon lowers the risk of conversion. (168) Further review of the data by Ross and Thrower (169) confirmed the trend toward early treatment and called for further study on adherence to treatment. Kohlmann et al (170) studied the impact of patient support programs, finding that patients with MS have varying needs depending on the status of their illness. As a result, they concluded that patient support programs can be beneficial to meeting patient needs and have potential effects on the economic impact of the illness. Furthermore, patient support programs can improve adherence and satisfaction with treatment. (171) With multiple treatments available for MS, patients and caregivers have many decisions to make regarding their choice of treatment, as well as coping with an illness. (172)
During the course of 50 years, JNN has evolved from a journal of case presentations, care plans, and essays to cutting-edge, evidence-based, clinical studies. Neuroscience nursing has been leading the charge in evaluating the physical and psychosocial aspects of neurodegenerative, chronic disease processes and constructing novel nursing interventions to meet the needs of patients and their caregivers/families. In PD, we have seen treatments evolve from virtually "nothing to do" to a marvel medication, L-dopa, to a surgical procedure that immensely improves the quality of life. Progress in the treatment of neuromuscular disease has been stagnant; however, there are many opportunities for neuroscience nursing to investigate the psychological and physiological impact on patients and their families. During the course of 2 decades, the options available for the treatment of MS have gone from steroids to injectable drugs (ie, interferon) to novel oral medications (immune modulators), improving the long-term outlook for patients. Albeit, it remains to be seen as to what lies ahead as modern medicine marches forward; let it be known that neuroscience nurses will be the change as we view the future.
Questions or comments about this article may be directed to Jennifer M. Woods, MSN, CCNS, CNRN, SCRN, atjwoods@unity healthnetwork.com. Neurology & Neuroscience Associates, inc, Akron, OH.
The author declares no conflicts of interest.
DOI: 10.1097/J NN.0000000000000327
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|Title Annotation:||Literature Review|
|Author:||Woods, Jennifer M.|
|Publication:||Journal of Neuroscience Nursing|
|Date:||Feb 1, 2018|
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