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Issues related to caring for infants to adults on an integrated epilepsy unit.

Introduction

Designing a comprehensive epilepsy program with an inpatient unit that combines pediatric and adult patients provides challenges for the professional staff. Staff members must be experienced in the care of patients of all ages and able to deal with the diverse medical and psychosocial needs of patients who are in very different developmental stages. If this is accomplished, then the high level disease-specific training and expertise the staff members of such a unit have can be used to provide specialized care in an efficient manner. This article discusses our experiences in implementing an all age inpatient epilepsy unit. The relative advantages and disadvantages of such a unit are reviewed and some outcomes of the program to date.

Admissions to the Unit

A 6 bed all-age inpatient epilepsy monitoring unit was opened in July 1991. It included 2 private rooms and 2 double rooms, and has since been expanded to eight beds. From January 1992 to December 1996, a total of 1222 patients were admitted to the unit including 479 (40%) adults older than 18 years and 743 (60%) children. The ages of the patients have ranged from several weeks old to 73 years. Admission criteria specify 4 weeks as the low age limit, as younger babies are considered neonates and diagnosis, prognosis and treatment is different in this group. There is no upper age limit. The age distribution of the patients is shown in Table 1. When considering diagnosis and prognosis the age groupings seen in Table 1 are characteristic of those seen in various syndromes and/or treatment groups. These groupings also represent differing developmental levels.
Table 1. Age Distribution of Admissions to Comprehensive Epilepsy
Unit

 Age (in years) N %
Pediatric 743 (60%)
 < 2 151 (12%)
 2 - 12 468 (38%)
 12 - 18 124 (10%)

Adults 479 (40%)
 18 - 45 404 (33%)
 45 - 65 70 ( 6%)
 > 65 5 ( 1%)


Admission criteria to the epilepsy unit were developed and were similar to those used in other comprehensive epilepsy programs.[4] They included evaluation for epilepsy surgery, diagnostic evaluations of seizure type or events that were potentially epileptic in origin, treatment of refractory epilepsy with specialized therapeutic regimens such as adrenocorticotrophic hormone (ACTH)[9] or the ketogenic diet[16] and evaluation of language regression or the Landau Kleffner syndrome.[13] A summary of the reasons for admission is shown in Table 2.

Table 2. Reasons for Admission to Comprehensive Epilepsy Unit

Epilepsy Surgery Evaluation

Phase I (surface EEG monitoring)

Phase II (invasive EEG monitoring)

Phase III (resective surgery)

WADA procedure (intracarotid amytal)

Other Admissions Using video/EEG Monitoring

Seizures vs psychogenic seizures

Generalized vs focal seizures

Events of potentially epileptic origin

Evaluation of language regression

Specialized Therapeutic Interventions

Status epilepticus/frequent seizures

Ketogenic diet

Adrenocorticotrophic Hormone (ACTH)

Neuropharmacologic monitoring

Changing antiepileptic drug regimen

These types of patients require specialized skills and training as the disorders are complex and the diagnostic and therapeutic regimens are highly specific. Almost all the diagnostic categories cut across age groups and are not limited to the traditional age categories of children and adults (Table 2). Prolonged video-electroencephalographic closed-circuit television (EEG-CCTV) monitoring is done in all the age groups to better characterize and define the nature and origin of the seizures or potentially epileptogenic events. The nursing skills required to recognize and document seizures and intervene if the seizure is prolonged are similar in both children and adults. Young children, particularly developmentally disabled ones often require extra care to successfully perform video-EEG monitoring but this is also true of the developmentally-impaired adult with intractable seizures.

Surgical evaluations are primarily done in young adults and adolescents but even children under 12 may undergo evaluation for epilepsy surgery including invasive monitoring with depth electrodes or grids as well as the intracarotid amytal (WADA) test for lateralization of language and memory.[11,14] Psychogenic seizures most commonly occur in adults but also can be seen in adolescents and even in children as young as 6 years of age.[8] Patients with this diagnosis account for approximately 12% of the unit's admissions. The ketogenic diet which requires specialized nursing care is most commonly used in children with intractable seizures, but on occasion may also be used in adults with intractable seizures who are not candidates for epilepsy surgery.

Epilepsy Center Team Members

Members of the interdisciplinary team include adult and pediatric epileptologists, a clinical nurse specialist, a social worker, as well as a child life specialist for the children and a clinical pharmacologist knowledgeable in the use of all antiepileptic drugs for both pediatric and adult cases. A neuropsychologist and a neuropsychiatrist proficient in the care of these patients are also involved in the assessment of the patient. This team works closely with the neuroradiologist and the neurosurgeon in providing multifaceted care. The nurses, all of whom were neurology nurses prior to joining the epilepsy staff, have educational preparation for the care of persons with epilepsy regardless of patient age. Training in the epilepsy classification and syndromes and age-related content was provided to each nurse prior to the unit opening and ongoing education is provided within and outside of hospital programs. A ratio of 1 nurse to 2 patients is the norm. The staff members in the electroencephalography laboratory are experienced in dealing with patients of all ages some of whom may have behavior problems or developmental disabilities. This area is supported by two secretaries and 4-5 EEG technicians. One technician covers during the night shift. The social worker and clinical nurse specialist provide holistic care to the patient and family based upon family systems instead of patient age.[3]

Issues

Potential advantages and disadvantages in the design of an epilepsy unit that cares for infants, children, adolescents and adults in a single area were contemplated prior to its inception. Providing safe, high quality care to children was the primary concern of staff members less experienced with pediatric patients, whereas meeting the emotional and physical needs of the adult population was a concern of pediatric staff members. As is often the case, some novel problems arose after the unit was opened. These will be discussed below, as well as the advantages and disadvantages identified by staff members.

Advantages

The integration of all age patients on one unit allows the interdisciplinary team to become coordinated around the care of the patient, work cohesively and provide a comprehensive approach. Family-centered care[7] has always been the philosophy of our team, and the family-centered care concept was integrated into the development of the Epilepsy Unit. The nurses have expertise in epilepsy and are able to care for both children and adults, regardless of age, based upon the disease and its effect on the family system, with family adaptation[12] as a goal. Because holistic care is given, the family, not only the patient, is involved in planning interventions. A family member is encouraged to stay in hospital with the patient.

The nurses working in the Epilepsy Management Unit are experts in epilepsy, and therefore are able to anticipate the needs of the patient and family as they move through their life cycle. The nursing staff members know that children's needs are different than adult's and are able to promote family coping and adaptation after a thorough assessment of each family's needs.[6] We have found that there is a sense of patient to patient support when the young and old are exposed to each other during treatment. Patients and family members are able to participate in support groups on the unit.

As many of our patients with intractable seizures are developmentally disabled and do not always function in an age appropriate fashion, we are able to individualize their activities and provide services appropriate for their developmental stage rather than their chronological age.[2] The child life specialist is an integral member of the team who is able to assess the child's behavior in the playroom and also provides emotional support to the children during procedures. There is a playroom on the unit with monitoring equipment so that the children can leave their rooms for activities with their peers and can continue to be monitored for seizures.

From an administrative standpoint it is easier to keep the census stable in the unit because children and adults can be put in the same unit, and admission planning is therefore more flexible. Our nurses and social worker plan bed assignments carefully to try to arrange roommates who therapeutically complement one another.

Economically, it is advantageous to have one unit for all patients because the staff's expertise is in one area. The social worker, physicians, clinical nurse specialist and nursing staff are all located on one unit and do not have to be duplicated.

From a research perspective this type of arrangement provides easy access to studying families or both children and adults. The model of care for the unit is based upon family centered care, therefore there are no restrictions on visiting hours and visitor age. We encourage at least one parent to stay with the child, and also many of our adult patients have family members stay with them, The rooms therefore must be large enough to accommodate 2 hospital beds and 2 cots. Although most patients would prefer a private room these are assigned based upon the medical needs of the patient as well as the space needs of the unit. Prior to admission this is discussed with the family which promotes an easier acceptance of the type of accommodations they are assigned. Research relating to family adaptation and age-related dimensions of illness can be easily implemented. For instance, we have looked at patients diagnosed with psychogenic seizures in our unit comparing children with adults in terms of course of illness, precipitating factors and outcome.[10] All of the patients were cared for in the same unit making for a consistent treatment regimen and reliable comparisons.

The overall advantage from a nursing viewpoint is an autonomous practice based upon an in-depth knowledge of epilepsy. Assessment of the family and education about the illness and the effects of illness is carried out by a dedicated team of nurses. Acute care of the patient having seizures and intravenous medication administration is managed by nurses via protocol. Pre-and postprocedure teaching can be done by nursing staff with experience in intracarotid sodium amytal testing (WADA test),[14] depth electrodes and extraoperative cortical stimulation and language mapping. Family and patient education is emphasized. Nursing staff members have developed a teaching protocol for caregiver education in ACTH therapy.[9]

An autonomous nursing practice has been developed for this unit through the use of patient care protocols and standards of patient care. For example, each nurse is authorized to administer intravenous push medications, phenytoin, lorazepam, phenobarbital and diazepam, to patients who have prolonged or frequent seizures. A physician's order is written for the medication and the nurse decides if the seizure is prolonged or if they are too frequent, and administers the medication deemed necessary. Each Epilepsy Unit nurse receives special training and authorization to give intravenous medications.

A critical pathway is used to plan care for our patients admitted for initiation of the ketogenic diet.[1] Both adults and children follow the same pathway which includes a starvation phase and gradual diet advancement. Concentrated patient and family teaching is emphasized during this hospitalization. The pathway begins prior to admission with teaching about the diet done by the ketogenic nurse via telephone. Hospitalization is planned for five days Monday through Friday. Laboratory workup and initiation of diet is scheduled for Day 2 or 3; teaching is ongoing but a formal meal preparation class is held on Day 4, Thursday. Discharge is planned once the patient has tolerated two full ketogenic meals.

Disadvantages

Staff development for nursing personnel required education in epilepsy and the care of patients of all ages. While all of the nurses had experience working with adult patients, none had previous pediatric experience and a level of confidence had to be built.

Special attention must be given to the different drug dosages and acute care needs including resuscitation and intravenous administration of medications to stop seizures. The nurses have begun to think in terms of weight when considering dosages. Availability of pediatric physician backup at night and evenings for fever workups and other acute care needs of children that an adult neurology housestaff may be unfamiliar with is also necessary. However, in a unit with mostly elective admissions these situations are very infrequent.

While other hospital inpatient units were concerned with only adult or pediatric cases, the Epilepsy Unit was required to design and follow patient care protocols/policies, for both pediatric and adult patients. Most other hospital areas maintain policies on either pediatric or adult, but the epilepsy unit maintains joint policies. Policies and procedures for all age patients were developed by the administrative team. Both pediatric and adult neurologists/epileptologists are necessary to successfully implement this model. Coordination of multiple staff members allows this approach to function well.

Discussion

In deciding whether to segregate patients by age or by disease category one must weigh the relative advantages and disadvantages. In general, children have different needs than adults and will receive a standard of care suitable for the pediatric patient if grouped with other children. On a general pediatric ward, the type of nursing, social work and physician skills needed are different than on a general medical ward. There are, however, some cases where the disease-specific skills required are such that having a disease-specific unit may make good clinical as well as administrative sense. A tertiary comprehensive epilepsy unit is one of these settings. The specific nursing skills needed for this unit cut across age categories. Having all the patients in one unit allows for a sufficiently large unit to have it's own dedicated and highly trained nursing staff rather than having the general floor nurse also care for these patients. The latter is often the case if the unit is too small to justify it's own separate staff which would often be the case in a 3 or 4 bed unit. Another unit with similar concerns may be a bone marrow transplant unit.[17]

Many of the admissions, while distributed among several age groups are not evenly distributed. Thus, if there were separate adult and pediatric units, the adult nurses while experienced in general epilepsy care would have little experience with the ketogenic diet whereas the pediatric nurses would have less experience with WADA tests and psychogenic seizures. A single unit allows a concentration of expertise both in the disease entity and in the variety of procedures used in it's treatment.

For a unit such as this to be successful, the nurses must be comfortable working with patients with a variety of epileptic syndromes - from children with developmental disabilities and multiple seizures, to patients undergoing Phase II workup for epilepsy surgery.[19] Medications and dosages vary depending on the age of the patient and treatment plan.[18] By following guidelines set for adult and pediatric patients the nurses are able to provide holistic care that addresses the many psychosocial issues of the patient with epilepsy and the family.[5,15] Care planning considers developmental life stages and the family's interactions.

In addition one must have physicians available who can care for these patients. Pediatric input is essential A unit like this depends on the availability of physicians with pediatric training as well as those with adult neurology skills. While the nursing staff members, social workers and EEG lab personnel care for the entire population regardless of age, the attending physicians have appropriate training in either adult or pediatric care and the specialists who consult on the unit (cardiology, endocrine etc) are called upon based on the age of the patient. Both pediatric and adult cardiology for example will consult in the unit depending on the age of the patient. In addressing all aspects aside from the epilepsy, the age appropriate consult service is involved. Thus, an integrated epilepsy unit works best in a setting where both adult and pediatric subspecialty services are available. Integration of the core services of nursing and the EEG lab are essential for direct care delivery that results in improved efficiency and optimum patient care in an all age comprehensive epilepsy program.

Summary

In our setting, similarities of patients with epilepsy in terms of seizure recognition and management, electrode care and psychological support outweighed by far the differences in care related to the age of the patient. In a comprehensive epilepsy center the patient and family are more likely to be treated with a holistic approach that will aid in coping and adaptation with epilepsy as a chronic illness and promote emotional adjustment. Quality improvement issues are better dealt with by an interdisciplinary staff with expertise in one disease entity.

The patient and family are provided coordinated, comprehensive treatment for the duration of their care while inpatients, even during subsequent admissions if they are surgery candidates, or if readmission becomes necessary for other reasons. The advantages of a single all age epilepsy unit with nursing staff members practicing a comprehensive approach to the patients with epilepsy and their families outweigh any potential disadvantages.

References

[1.] Brunt B: Clinical practice guidelines. J Nurs Admn 1996; 23(9):35-37.

[2.] Cardoso P: A parent's perspective of family centered care. Child Health Care 1991; 20(4):258-260.

[3.] Davies B, Reimerd C, Martens N: Family functioning and its implications for palliative care. J Palliative Care 1994; 10(1): 2936.

[4.] Guidelines for diagnosis and treatment in specialized epilepsy centers. Epilepsia 1990; 31: S1-12.

[5.] Hartshorn JC, Byers VL: Importance of health and family variables related to quality of life in individuals with uncontrolled seizures. J Neurosci Nurs 1994; 26(5):288-297.

[6.] Hartshorn JC, Byers VL: Impact of epilepsy on quality of life. J Neurosci Nurs 1992; 24(1): 24-29.

[7.] Hostler SL: Families of children with special health care needs. Ped Clin N Amer 1991; 38: 1546-1559.

[8.] O'Dell C, Lightstone L, Ballaban-Gil K et al: Psychogenic seizures in children and adolescents. Ann Neurol 1994; 36:513.

[9.] O'Dell C, Maloney-Lutz K, Shinnar S et al: Protocol for ACTH administration in refractory childhood seizures: Educational strategies. J Neurosci Nurs 1995; 27(6):363-369.

[10.] O'Dell C, Shinnar S, Eisenberg C et al: Comparison of outcome between children and adults with psychogenic seizures. Epilepsia 1995; 36(supp4):149.

[11.] Petersen RC, Sharbrough FW, Jack CR: Intracarotid amobarbital testing in presurgical evaluation of patients with intractable epilepsy. Pages 1051-1061 in: Treatment of Epilepsy Principles and Practice. Wyllie E editor. Lea and Febiger, 1992.

[12.] Roy C: Introduction to Nursing: An Adaptation Model. Prentice Hall, 1984.

[13.] Shinnar S, Amir N, Branski D (editors): Childhood Seizures. S Karger, 1995.

[14.] Tackenberg JN, Ahern GL, Herring AM, Hutzler R: Nursing implications of the intracarotid amobarbital procedure. J Neurosci Nurs 1994-1 26(5):309-318.

[15.] Trimble MR, Dodson WE (editors): Epilepsy and Quality of Life. Raven Press, 1994.

[16.] The Johns Hopkins Medical Institutions. Boston Children's Hospital, Child Neurology Inc. of Mishawska, IN et al: Multicenter study of the efficacy of the ketogenic diet. Ann Neurol 1996; 40:300.

[17.] Tomlinson PS, Kirschbaum M, Tomczyk B, Peterson J: The relationship of child acuity, maternal responses, nurses attitudes and contextual factors in the bone marrow transplant unit. Am J Crit Care 1993; 2(3):246-252.

[18.] Troupin AS: Antiepileptic drug therapy: A clinical overview. Pages 785-790 in: Treatment of Epilepsy Principles and Practice, Wyllie E (editor), Lea and Febiger, 1992.

[19.] Wyllie E, Awad IA: Intracranial EEG and localization studies. Pages 1023-1038 in: Treatment of Epilepsy: Principles and Practice, Wyllie E (editor). Lea Febiger, 1992.

Questions or comments about this article may be directed to: Christine O'Dell RN, MSN, Clinical Nurse Specialist, Comprehensive Epilepsy Management Center, Montefiore Medical Center, 111 E 210th Street, Bronx, New York 10467.

Linda Lightstone, CSW, MSW, is a Case Manager, Epilepsy Management Center, Montefiore Medical Center.

Kathleen Maloney-Lutz, RN, BSN, is Patient Care Coordinator, Epilepsy Unit, Montefiore Medical Center.

Patricia Clements, Electroencephalography Laboratory Supervisor, Montefiore Medical Center.

Ann Mancini, Administrator, Epilepsy Management Center, Montefiore Medical Center.

Solomon L Moshe, MD, Professor of Neurology, Neuroscience and Pediatrics, Director, Child Neurology and Clinical Neurophysiology, Montefiore Medical Center/Albert Einstein College of Medicine.

Shlomo Shinnar, MD, PhD, Professor of Neurology and Pediatrics, Director, Epilepsy Management Center, Montefiore Medical Center/Albert Einstein College of Medicine.

This Paper was presented in part at the American Epilepsy Society Meeting, Miami, Florida, December 1993.
COPYRIGHT 1998 American Association of Neuroscience Nurses
No portion of this article can be reproduced without the express written permission from the copyright holder.
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Author:O'Dell, Christine; Lightstone, Linda; Maloney-Lutz, Kathleen; Clements, Patricia; Mancini, Ann; Mosh
Publication:Journal of Neuroscience Nursing
Date:Apr 1, 1998
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