The PNS Nurse Program

Abstract

Background

Immune-mediated peripheral nervous system (PNS) disorders pose diagnostic and therapeutic challenges, necessitating collaborative, patient-centered care. Limited access to specialized centers leads to delayed diagnosis and care, as seen during the COVID-19 pandemic. To address these challenges, accessible specialized care is crucial. On-site support plays a vital role in advising and assisting patients and caregivers, enabling multidisciplinary care for PNS diseases.

Recent Findings

The PNS Nurse Education Program tackles these complexities, using specialized nurses experienced in multiple sclerosis and Parkinson disease. Focusing on peripheral neuroimmunologic disorders, PNS nurses monitor disease severity, optimize communication, and provide therapeutic support in the recently started era of available immunotherapies. Collaboration with other healthcare sectors and support groups further enhances patient care.

Implications for Practice

Ultimately, the PNS Nurse Education Program aims to bridge the gap between complex treatments and limited specialized care, improving patient outcomes and relieving burdens on patients, caregivers, and healthcare systems.

Introduction

Diagnosing and managing peripheral nervous system (PNS) disorders such as myasthenia gravis (MG), immune-mediated neuropathies (IMN), and idiopathic inflammatory myopathies (IIM) require a multidisciplinary approach involving neurologists, physical and occupational therapists, and specialized nurses. Owing to the disease-related symptoms, patients with such neuromuscular disorders often face significant burdens that affect their daily lives physically, emotionally, and socially.^1,2 Particularly, PNS disorders can cause muscle weakness, fatigue, pain, and mobility impairments. Patients may experience difficulties with activities of daily living, which can result in a loss of independence and require assistance from caregivers or adaptive devices.³

Fortunately, various novel therapeutic approaches to stop ongoing disease progression are currently undergoing testing or have recently gained approval. The extensive development of immunomodulatory therapies now offers increased possibilities for treating rare neurologic disorders with PNS involvement.^4,5 However, the complexity of these treatments and the severity of the conditions necessitate an interdisciplinary and patient-centered care network. In the case of diagnosing or treating rare diseases, specialized centers are typically the only facilities equipped to perform comprehensive procedures, which unfortunately leads to unnecessarily prolonged diagnosis times.⁶ Despite most European countries being densely populated and highly developed, the limited number of experts in rare neurologic disorders presents a challenge in accessing excellent care. In addition, the COVID-19 pandemic has highlighted the unique care-related restrictions and burdens experienced by patients with the aforementioned diseases because they were unable to receive services from appropriate specialized centers.^3,7 Moreover, analyses conducted at our center indicate that accessing specialized centers often entails significant time expenditure for many patients, primarily due to geographical distances, resulting in delayed availability of immediate assistance during acute or subacute problems.⁸

Given the increasing diagnostic possibilities and the availability of new treatment options, consistent and easily accessible specialised care is necessary for patients who are often severely affected. However, existing specialized healthcare structures are unable to provide this monitoring nationwide.^8,9

To address the challenge of complex diagnostic and treatment options coupled with the limited availability of specialized physician care, we have developed the concept of a PNS Nurse Education Program. This program focuses on neuroimmunologic PNS disorders and encompasses therapy requirements, patient care, and interdisciplinary networking.

Development and Goal of the PNS Nurse Education Program

Our 12-month educational program focuses on MG, IMN, IIM, and related disorders (Table). In this context, we can benefit from the extensive expertise gained through nurse-led care for patients with multiple sclerosis (MS) and Parkinson disease (PD). Over the past 2 decades, MS and PD nurses have been providing nationwide care and serving as the initial point of contact for addressing complications related to both the diseases and their treatments.^10,11 We, therefore, have embraced the established training formats of MS and PD nurses and incorporated therapeutic and practical elements into our program.

Table.

PNS Nurse Course Contents

Theoretical course
Understanding PNS diseases	This course provides essential concepts and information about PNS disorders to address patients' inquiries about the causes and effect of their disease on their future life
Clinical presentation of PNS diseases	This course explores different types of PNS diseases and their clinical features, including atypical presentations. Common symptoms are explained, along with the prognosis for individuals with PNS disorders
Diagnosis and assessment	This course explains the diagnostic criteria for PNS disorders, along with the associated diagnostic tools and scores, their results, and implications. The information is presented in a manner that nurses can easily understand and interpret, enabling effective communication with individuals who have neuromuscular diseases
Treating PNS diseases	This course delves into the pharmacologic management of PNS, including an exploration of current disease-modifying therapies and nursing considerations. Symptom management, with a focus on pharmacologic approaches, is discussed. Emergency management is also covered
Practical course
	Shadowing a specialized MS/PD nurse in the MS/PD outpatient clinics to gain firsthand experience in face-to-face patient contact
	Observing doctor-patient interactions and consultations in MS/PD outpatient clinics
	Understanding cognitive and psychiatric deficits in patients with PNS disorders through observation in the neuropsychology outpatient clinic
	Gaining practical insights into emergency care in PNS disorders through placement in the intensive care unit

The table shows the basic theoretical and practical course offerings.

The primary goal is to customize disease-specific care according to individual needs. Specialized physicians serve as instructors throughout the program. The program begins by developing a comprehensive understanding of the underlying conditions. Subsequently, participants learn to apply clinically recognized scores for early detection of disease activity. In a recent study focusing on MG, we emphasized the benefits of regular clinical monitoring and were able to show that reduced vital capacity and infections are significant risk factors for myasthenic crises.¹² Because of the potential benefit expected from monitoring patients using established scores with a higher frequency, specialized PNS nurses might be capable of detecting these early on. With the advancement of modern therapies, the significance of patient-reported outcomes in validating treatment responses has grown. Efgartigimod, a neonatal Fc receptor blocker, has demonstrated rapid improvements in both clinical and patient-reported outcomes for patients with MG. However, the administration of efgartigimod involves repeated cycles, wherein weekly doses are given 4 times followed by treatment interruption until the onset of clinical deterioration.¹³ In daily routine, very frequent monitoring is required to detect increasing disease activity. In this case, the PNS nurse could relatively easily collect and assess the clinically meaningful scores to identify the need for a new cycle of treatment at an early stage to prevent the deterioration of the disease. For patients with IIM and IMN, the question also arises as to what extent intervals for intravenous immunoglobulin therapies should be chosen. In these cases, a more frequent clinical scoring combined with digital solutions,¹⁴ for example, could assist in determining individualized therapy intervals and could be realized by PNS nurses. Furthermore, the implementation of home treatment care with options like subcutaneously administered immunoglobulins for patients with IMN requires appropriate support and could increase treatment adherence.¹⁵

Moreover, the program aims to optimize communication with patients and improve their therapeutic support. Given the high prevalence of comorbidities, including psychiatric conditions, among patients with PNS disorders,^16,17 PNS nurses play a vital role in bridging different disciplines. As part of our program, we offer an internship program at a neuropsychological outpatient clinic, aiming to enhance the support provided to patients during critical phases. Thus, this internship provides an opportunity to improve the skills necessary for assisting patients and to gain practical experience in managing their needs effectively. Through close collaboration with other healthcare sectors such as general practitioners, physical therapists, and support groups, the PNS nurse can provide enhanced support in the patients' daily lives. As emphasized by medical associations, PNS nurses also serve as essential medical support, offering care to patients immediately following diagnosis and providing crucial information about treatment options. Considering the significant increase in the workload affecting the medical profession, such support services are indispensable for maintaining high-quality care (Figure).

Figure. Central Role of the PNS Nurse.

The Figure shows the urgent optimized networking that can be realized by a PNS nurse. IIM = idiopathic inflammatory myopathies; IMN = immune-mediated neuropathies; MG = myasthenia gravis.

Conclusion

In summary, the growing complexity of PNS disorders highlights the necessity for specialized and patient-centered nurse training in this field. To alleviate the burden on patients and caregivers, there are ongoing plans to introduce other options such as digital solutions into outpatient care that will disseminate knowledge to the point of care. However, there are also insufficient personnel resources available in the medical field to meet this demand. Moreover, a crucial need for on-site support to advise and assist patients and caregivers remains, as well as facilitate multidisciplinary care for immune-mediated PNS diseases. The question remains to what extent PNS nurses can serve as a successful interface between the various stakeholders, similar to their role in MS or PD. Thus, on successful completion of the PNS Education Program, it is planned to implement this concept nationwide.

TAKE-HOME POINTS

• → Immune-mediated PNS disorders pose diagnostic and therapeutic challenges.

• → Accessible specialized care is crucial for addressing these challenges and providing multidisciplinary PNS disease care.

• → The PNS Nurse Education Program, led by experienced nurses, monitors disease severity and provides therapeutic support for neuroimmunologic disorders.

• → Collaboration with healthcare sectors and support groups enhances patient care with available immunotherapies.

• → The program aims to improve outcomes, relieve burdens on patients and caregivers, and bridge the gap between complex treatments and limited specialized care.

Appendix. Authors

Name	Location	Contribution
Marc Pawlitzki, MD	Department of Neurology, Medical Faculty University Hospital Düsseldorf, Germany	Drafting/revision of the manuscript for content, including medical writing for content; major role in the acquisition of data; study concept or design; analysis or interpretation of data
Marcia Gasis, MSc	Department of Neurology, Medical Faculty University Hospital Düsseldorf, Germany	Drafting/revision of the manuscript for content, including medical writing for content
Lars Masanneck, MD	Department of Neurology, Medical Faculty University Hospital Düsseldorf; Hasso Plattner Institute, University of Potsdam, Germany	Drafting/revision of the manuscript for content, including medical writing for content
Sven G. Meuth, MD, PhD	Department of Neurology, Medical Faculty University Hospital Düsseldorf, Germany	Drafting/revision of the manuscript for content, including medical writing for content
Tobias Ruck, MD	Department of Neurology, Medical Faculty University Hospital Düsseldorf, Germany	Drafting/revision of the manuscript for content, including medical writing for content

Study Funding

This project was financially supported by Argenx.

Disclosure

M. Pawlitzki received honoraria for lecturing from Alexion, Argenx, Biogen, Bayer, Novartis, Hexal, Sanofi, and Merck. He received research funding from Biogen. M. Gasis reports no conflicts of interests. L. Masanneck receives honoraria for lecturing and travel expenses for attending meetings from Biogen, Merck, and Novartis. His research is funded by the German Multiple Sclerosis Society North Rhine-Westphalia (DMSG). S.G. Meuth receives honoraria for lecturing and travel expenses for attending meetings from Almirall, Amicus Therapeutics Germany, Bayer Health Care, Biogen, Celgene, Diamed, Genzyme, MedDay Pharmaceuticals, Merck Healthcare, Novartis, Novo Nordisk, ONO Pharma, Roche, Sanofi-Aventis, Chugai Pharma, QuintilesIMS, and Teva. His research is funded by the German Ministry for Education and Research (BMBF), Deutschen Forschungsgesellschaft (DFG), Else Kröner Fresenius Foundation, German Academic Exchange Service, Hertie Foundation, Interdisciplinary Center for Clinical Studies (IZKF) Muenster, German Foundation Neurology, and by Almirall, Amicus Therapeutics Germany, Biogen Idec, Diamed, Fresenius Medical Care, Genzyme, Merck Healthcare, Novartis, ONO Pharma, Roche, and Teva. T. Ruck reports grants from German Ministry of Education, Science, Research, and Technology; grants and personal fees from Sanofi-Genzyme, Argenx, and Alexion Pharmaceuticals Inc.; personal fees from Argenx, Biogen, Roche, and Teva; and personal fees and nonfinancial support from Merck Serono. Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp.