Collaborative research.

Our experience of collaborative research "the process of working with others in pursuit of scientific discovery" has been a most rewarding experience. The nurses and physicians have developed mutual respect and appreciation of the value of each other's practice, and true collaboration has emerged. The relationships between the nurses and physicians have developed over time and have been supported by our visionary Associate Director for Nursing, Kathryn McKeon. Throughout this process of collaboration, we've grown to appreciate each others strengths and recognize what each discipline has to offer. We have also learned that when we work together, it is the patient who ultimately benefits most. The neurologists' holistic approach to patient care and their respect for nursing practice have greatly contributed to the establishment of truly collaborative research.

Gaucher's disease: a pilot study of the symptomatic responses to enzyme replacement therapy.

Symptomatic responses to enzyme replacement therapy were studied in 12 patients with an inherited lipid storage disorder (Type 1 Gaucher's disease) in order to determine the impact of treatment on perceptions of well being. Before each intravenous infusion of enzyme, patients were asked to comment on the presence or absence of disease-specific symptoms presented in questionnaire format. Symptoms were grouped into five major categories: bleeding abnormalities, chronic fatigue, gastrointestinal complaints, bone pain and psychosocial function. Each reported symptom was discussed in detail with the clinic nurse coordinator and documented in the medical record. After six months of enzyme replacement therapy, each patient's chart was reviewed and changes in the frequency of disease-specific symptoms over time were evaluated. The major subjective changes included a decrease in the frequency and severity of nosebleeds, reduced bruising, increased vigor and energy level, visible reduction in abdominal girth, increased self-esteem and enhanced self-image. Patients frequently described relief of their symptoms well before changes were confirmed by objective laboratory measurements. These observations may prove useful in the comprehensive management of patients with Gaucher's disease as they recover from a chronic, debilitating illness while receiving enzyme replacement therapy. The extent and ease with which these patients can achieve a state of normal, healthy function is unknown at the present time and will require further study.

Professional nursing practice in neurology ambulatory care.

The ambulatory care setting is an important expanding area for professional nursing practice. The demand for ambulatory care nurses is stimulating the definition and development of professional nursing practices in outpatient clinics. Neurology ambulatory care at the National Institutes of Health, Bethesda, Md, is provided in the context of contributing to biomedical research. This article discusses the components of patient selection criteria, experimental therapy, and research data collection that have implications for nursing care. Visit categories are used to discuss administrative and practice issues of the research patient population at all institutes. Management plans are discussed, and a case study is presented along with a care plan.

The primary nurse as a care giver in a neurology research setting.

Multiple sclerosis is a debilitating disease that is the focus of study in many clinical settings. In one center conducting research on multiple sclerosis, an investigational drug being studied is called polyinosinic-polycytidylic acid poly-l-lysine (Poly-ICLC). The role of the primary nurse in this research project is described and discussed. A case presentation is included to illustrate how a patient receives continuity of professional nursing care while participating in a research protocol.