PERIPHERAL NEUROPATHY is a chronic disease that affects 20 million Americans.1 Like most people with chronic illnesses, these patients have a host of educational and clinical care needs that warrant attention from more than a single healthcare provider.2,3 This article chronicles the launch of a free clinic for patients with peripheral neuropathy that aims to provide support and vital information they need to help manage this disorder at home.
Wide range of causes
Peripheral neuropathy has hundreds of possible causes, ranging from those that are potentially reversible, such as vitamin B12 deficiency, to irreversible neurodegenerative diseases such as multiple sclerosis or amyotrophic lateral sclerosis (ALS).2,3 In the vast majority of cases, peripheral neuropathy is chronic and irreversible.4 Numbness in the extremities, reduced proprioception, reduced ability to discern hot from cold, and muscle weakness can cause falls, burns, and other injuries.5 Uncertainty about the underlying cause, symptom progression, or ongoing physical limitations cause psychological distress and decrease quality of life, and can lead to chronic anxiety and depression.6 Developing peripheral neuropathy is unexpected for most patients, and they may get little information from healthcare professionals who may not be adequately prepared to manage the disease.3,7
As an oncology nurse, I (lead author Cindy Tofthagen) was familiar with peripheral neuropathy because it's an adverse reaction to many chemotherapy drugs.4 During my doctoral program, chemotherapy-induced peripheral neuropathy became my primary area of research. I took over as facilitator of the Greater Tampa Peripheral Neuropathy Support Group in 2009. Members of the group repeatedly articulated the fact that very few resources were available in the community to address these needs or guide patients needing help. It became clear that this was an existing gap in available care in our community. Although my background and research had primarily focused on peripheral neuropathy caused by chemotherapy, it was evident that people with all types of peripheral neuropathy suffer the same symptoms and have the same needs for education and information. It also became clear that this was a gap in services that we needed to address. The core members of the support group were in full agreement.
I recruited a core group of volunteers and we went to work, meeting for the first time in January 2013. With eight original volunteers, we agreed upon our mission and vision, as well as values that represented what we wanted to accomplish (see The clinic's core principles). We secured clinic space, donated by a physician practice that was closed on weekends. Clinics were and continue to be held on Saturdays. Frequency of clinic offerings varies from monthly to quarterly, depending on how many people make appointments to attend.
We set up the clinic using an approach like that of the University of South Florida's neurology clinic for patients with ALS. Patients meet individually with each of our multidisciplinary team members to receive individualized peripheral neuropathy specific education (see Volunteer roles and responsibilities). Core education topics that are covered at each clinic visit include neuropathy symptom management, balance improvement, home safety, and coping with a chronic illness. Additional topics include diagnostic evaluation and appropriate use of medications and nutritional supplements. Patients rotate through the exam rooms of the clinic, meeting with each provider for 20 to 30 minutes.
The clinic serves patients with peripheral neuropathy from any cause throughout the Tampa Bay region. Although it's a free clinic, it serves both insured and uninsured patients from all walks of life. In some cases, patients have received some form of pharmacotherapy prescribed by a primary care provider or neurologist, often without success. Few patients have received any type of formal education regarding how to manage peripheral neuropathy on a long-term basis, even though many of them have suffered with it for years before visiting our clinic.
Disseminating information about the clinic's services to the community has been an ongoing challenge; operating without funding has prevented the clinic from reaching many in need of its services. Primarily, referrals have come through the Greater Tampa Neuropathy Support Group, providers in the community, and free community service advertisements placed in community newspapers. Regular expenses for postage, supplies, e-mail services, flyers, and refreshments cost about $25 to $50 a month and are covered by donations from clinic volunteers.
Benefits and challenges
Many patients suffer due to lack of evidence-based interventions available to successfully treat the long-term symptoms and subsequent disability. Patients visiting the clinic describe themselves as distressed from living with pain and functional disability. They've been eager to discuss their day-to-day challenges with peripheral neuropathy and methods they use to cope with it. They're amenable to trying strengthening exercises to improve muscle function, balance, and lower extremity mobility.8 Some patients are surprised to hear this may help them and were receptive to the teaching. Many patients also need education about basic home safety.
Many patients feel frustrated and don't believe their healthcare providers have given them the information they need to manage their symptoms. Some are looking for a cure, not fully understanding the chronic nature of their disease. When they leave the clinic, they often express their gratitude for each volunteer provider for the information they've received and for the opportunity to attend.
As healthcare professionals, we want to provide more education and support to patients, but there are many constraints to doing so in busy medical practices. We've eliminated many of these barriers by limiting the number of patients we see at each clinic, providing extended visits with a range of providers with unique expertise related to neuropathy, and not billing either insurance providers or patients. By taking this approach, we can provide true patient-centered care, taking as much time as needed with each patient and focusing on topics they want to discuss. We gain a detailed understanding of the challenges patients face at home and provide them with practical information that we believe will help them better manage their symptoms and enjoy a higher quality of life.
We've successfully implemented a free, multidisciplinary supportive clinic for patients with peripheral neuropathy. We'll continue to seek new and innovative ways to meet the needs in the Tampa Bay community and expand the concept of multidisciplinary care for patients with other chronic diseases. For example, the topics of coping with a chronic illness, symptom management, and managing medications are applicable in all chronic disease processes and could be tailored to meet the needs of those with different illnesses such as diabetes or heart disease.
Forming alliances and partnerships within the community is essential. Our volunteers represent several healthcare organizations within the community and referrals come from providers in the community who realize the value in the services we provide to our patients.
Chronic disease management requires a multidisciplinary, holistic approach to care.9 In the United States, the healthcare system primarily aims to diagnose and treat illness with medication, rather than equipping patients with information and access to a variety of resources that may help them better control symptoms.10 While the end goals of diagnosis and treatment work well in acute illness, the model is much less effective in chronic illness. Patients and families continue to report a need for more education and support, and the ability to choose from an array of treatment options that may benefit them.5
Nurses who recognize unmet needs within their community shouldn't hesitate to move forward with efforts to fulfill them. The clinic's approach to meeting its goals involved identifying the gaps in care that existed in our local area, gathering data from affected individuals, identifying available resources within the community, forming a team of expert healthcare providers committed to the project, securing a meeting location, developing the educational plan, and informing the community about our services.
Nurses are ideally suited to teach patients how to self-manage their symptoms, facilitate communication between providers, and act as patient advocates within their communities. Involvement of healthcare professionals from various disciplines in such efforts greatly enhances the care patients receive and allows for a more holistic approach to their care. Advocating for changes in the healthcare system to improve provision and payment for patient education is essential.
The clinic's core principles
To provide education and supportive care to people with peripheral neuropathy from all causes.
Everyone with peripheral neuropathy will have access to quality supportive care in addition to the care provided by their own healthcare providers.
- Interdisciplinary collaboration
- Evidence-based practice
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