This month, the AAN debuts the first book in its new series, Neurology Now Books™, for patients and their caregivers. An extension of the AAN patient magazine, Neurology Now, the new series provides patients with essential information to develop the skills they need to effectively manage their disease.
The first book is Navigating Smell and Taste Disorders by Ronald DeVere, MD, and Marjorie Calvert. Three new books are slated for publication next year, covering Parkinson disease, multiple sclerosis, and brain tumors.
Neurology Now Books™ will enhance the relationship between the AAN and patients with neurologic disorders and increase patient confidence in the AAN as their advocate, said Lisa M. Shulman, MD, editor-in-chief of Neurology Now Books™ and co-director of the University of Maryland Parkinson's Disease and Movement Disorders Center. She describes Neurology Now Books™ as a resource that will facilitate a “team approach” between neurologists and patients in managing neurologic disorders.
“I've always believed that patients need to play a major role in the decision-making process involved in their care,” said Dr. Shulman, who has been actively involved in patient education efforts throughout her career. An advisory board member of Neurology Now magazine, where she helps develop editorial content, she also volunteers her time locally in Baltimore, creating patient symposia. In 2009 Dr. Shulman received a four-year NIH grant — as part of the agency's Patient-Reported Outcomes Measurement Information System (PROMIS) — to develop a new instrument to measure the self-efficacy of patients (their level of confidence) in their management of chronic conditions.
In an interview with Neurology Today, Dr. Shulman explains the importance of a patient-centered book series and how neurologists, patients, and family members will collectively benefit from Neurology Now Books™.
WHAT INSPIRED YOUR INVOLVEMENT IN PATIENT EDUCATION?
My interest goes back to when I first began to treat patients with chronic neurologic disorders. Patients vary quite a bit in terms of their level of interest in learning about their disease and participating in decision-making regarding their management.
Early in my career, although I encouraged people to be more involved, I was surprised to find that there are a good proportion of people who are reluctant to do so. For example, some patients show no interest in helping to choose between available treatment options, although each option has its own pros and cons. Initially, I supported patients when they said they didn't want to be involved.
But as the years went on, I had more opportunities to observe and compare how proactive patients versus non-engaged patients fared with their chronic diseases. My observations were in line with what research has shown over the years: People who have better self-management skills have better disease outcomes. Over the years, I've changed my own approach and now explain to patients that it really isn't a choice, but rather a necessity for them to learn about their disease and be an active participant. I believe that patient education isn't simply a good thing to do, but that it's fundamental for quality neurologic care.
IN WHAT WAYS DO INFORMED PATIENTS HAVE BETTER OUTCOMES?
Informed patients are more likely to take constructive steps when they experience new symptoms, which usually develop when they are on their own and not about to see their neurologist. For example, the informed patient who develops a new symptom is more competent to judge the significance and level of urgency associated with the event and take appropriate action.
Conversely, patients who aren't as knowledgeable about their disorder tend to feel more helpless and out of control with increased anxiety and depression, comorbidities that result in poor quality of life. In the uninformed patient's case, when new symptoms develop, unnecessary emergency room visits and hospitalizations may occur resulting in unnecessary interventions, such as unwarranted diagnostic testing and treatments that may lead to their own complications. By using educational materials such as Neurology Now Books™, patients will develop the self-management skills they need to navigate their neurologic disorder more effectively.
WHAT MAKES THIS SERIES DIFFERENT THAN OTHER PATIENT BOOKS?
Patients request authoritative sources of information all the time and it's difficult for them to judge the credibility of sources. They are commonly exposed to marketing and advertising products that often don't provide the full range of available treatment options.
In Neurology Now Books™, we work hard to keep the information free of bias, and we also describe the AAN guidelines that have been developed for the particular disorder under discussion. Neurology Now Books are high quality resources that our patients can rely on.
HOW WERE PATIENTS' NEEDS TAKEN INTO CONSIDERATION?
We pay a lot of attention to describing the neurologic disorders in language that patients and families can fully understand. We present the experiences of people who have gone through similar situations, and we provide access to information from a broad range of health professionals who are working with people who have this condition. In addition, we strive to balance a combination of realistic information and hopefulness. Topics are covered in-depth so patients can be successful and effective advocates of their own care.
We also strive to make the books as patient-centered as possible by incorporating practical tips to navigate and live with symptoms on a daily basis. We include vignettes of patients' personal experiences with neurological disease. In the upcoming book about brain tumors, for example, patients describe their experience of receiving this difficult diagnosis and discuss how they made treatment decisions.
A conscious effort was made to not fill the books with complex medical jargon, although some medical terminology is certainly necessary. In order to avoid confusion, every time a new word is presented that isn't common terminology the definition is provided on the same page and it is again repeated at the end of the book in the glossary. Professional medical writers work with the neurologic experts and other key authors to ensure the text is clearly written and at a level that is fully comprehensible to patients and families.
ARE SMELL AND TASTE DISORDERS PREVALENT IN PATIENTS?
Neurologists frequently treat many neurological disorders that are associated with smell and taste problems; it's particularly common in patients who have suffered head trauma or have a neurodegenerative disorder, such as Alzheimer disease or Parkinson disease. In addition, smell and taste problems affect the majority of the elderly population because they're associated with aging. People often experience loss of appetite, weight loss, and increased frailty as the result of these disorders.
Navigating Smell and Taste Disorders reviews the causes and mechanisms of smell and taste disorders. The second half of the book is focused on interesting food preparation tips and recipes that are targeted to people with smell and taste impairment.
TELL US SOMETHING ABOUT THE AUTHOR OF THE FIRST BOOK
Ronald DeVere, MD, is the director of the Smell and Taste Disorders Clinic in Austin, TX, one of the few such clinics in the country.
Dr. DeVere recruited his co-author, Marjorie Calvert, a chef to help develop innovative food preparation approaches for people with smell and taste disorders. Calvert has identified ways to make eating more pleasurable even if smell and taste are diminished. For example, using interesting textures, spices, or foods that are hot (such as ginger or hot peppers) can create more pleasurable sensations in the mouth to enhance the eating experience.
HOW CAN NEUROLOGISTS USE THE BOOKS TO ENGAGE THEIR PATIENTS AND CAREGIVERS IN CARE DECISIONS?
Patients and their family members often search for authoritative educational resources about their neurological disorder. Neurology Now Books™ is that authoritative source. The book series facilitates effective communication with the neurologist and promotes the type of shared decision-making process that results in excellent quality of care.
As an AAN product, neurologists can have full confidence in the content and can recommend them to their patients knowing they will foster the education and management skills their patients need, creating an effective team that is dedicated to achieving the very best neurologic outcomes.