Advances in Specialty Therapy Nursing

Specialty therapy nurses can present educational modules that encompass the disease state, symptoms, diagnosis, and treatment of orphan and ultra orphan disorders.

Orphan disorders are defined as a host of conditions that are serious and lifelong, affecting populations of fewer than 200,000 persons. Ultra orphan disorders affect an even smaller population of 20,000 or fewer persons. The majority of these disorders are genetic or have a genetic component. They are extremely rare, creating a lack of awareness by many primary care physicians, specialists, pharmacists, and nurses.

Heredity angioedema (HAE) is an example of a rare ultra orphan disorder with approximately 6000 patients diagnosed in the United States. Individuals diagnosed with HAE experience attacks of swelling of the face, larynx, abdomen, and extremities. These life-threatening attacks are very painful and unpredictable, varying in severity, frequency, duration, and location. Due to the rare nature of this disorder, primary care physicians and specialists may have never encountered it and the symptoms may be unknown to them, sometimes delaying diagnosis by multiple years.

Simply getting a diagnosis often becomes a quest. These patients are misdiagnosed with allergic reactions, appendicitis, or abdominal obstruction. If undiagnosed, a patient experiencing a laryngeal attack would end up intubated or trached until the swelling subsided. Patients with abdominal swelling often have unnecessary abdominal surgeries. The disorder incapacitates an individual for 20 to 100 days a year. Once diagnosed, HAE can be treated both prophylactically and acutely, thus preventing and/or decreasing the frequency of attacks.

Educational Awareness

Educational awareness plays a key role in expediting an accurate diagnosis, leading to the appropriate treatment for these orphan disorders. Educational awareness also plays a critical role in extending the awareness to the rural setting. Many patients are diagnosed at major medical health care centers and then return home to be followed by their primary care provider who may be unaware of the disease and treatments.

Biopharmaceutical manufacturers face multiple challenges in creating educational awareness for every primary care physician involved with even 1 or 2 patients. Providing the manufacturer with committed educational support is essential to the well-being and quality of life of people with these rare diseases.

How Specialty Nurses Can Help

Specialty therapy nurses possess an expertise in the orphan and ultra orphan disorders and they are extremely well positioned to provide this ongoing transition of support to the biopharmaceutical manufacturers. They work in several areas of practice, which include clinical research, specialty practices, specialty pharmacies, and home health care agencies. These nurses are mobile, with the ability to carry through educational awareness to the primary care physicians in both rural areas and local emergency departments.

Specialty therapy nurses can target specific physicians and present educational modules that encompass the disease state, symptoms, diagnosis, and treatments specific to the orphan and ultra orphan disorders. With the continuation of the orphan drug development, it’s imperative that the specialty therapy nurses maintain ongoing awareness of the biopharmaceutical market, products in clinical trials, and new products launched.

SPNN Conference

Specialty Pharmacy Nursing Network (SPNN) held the first specialty therapy nursing conference in Orlando, Florida, in September, which focused on specialty therapies. It was attended by specialty therapy nurses and specialty pharmacists from across the country. Those who attended received an overall CE program on several orphan and ultra orphan disorders with topics presented by experts in the disease-specific field.

The program was followed by hands-on clinical workshops, which provided drug reconstitution and administration training, along with skills validation. This is one of multiple avenues being created to provide the disease-specific education to the specialty therapy nurses. Biopharmaceutical manufacturers are also collaborating with specialty therapy nurses to provide a branded nursing service model.

About the Author

Cherylann Gregory, RN, BSN, is founder and president of the Specialty Pharmacy Nursing Network (SPNN) and has more than 30 years of experience as an oncology/ infusion nurse. SPNN provides a nationwide network of 500 qualified nurses for specialty pharmacies and biotech manufacturers. Services include coordination of care, drug administration, first dosing, education, clinical outcome data collection and reporting, and on-call coverage for specialty therapies. Visit www.spnninc.com.