Practical Approaches to Providing Patient Support

A solid physician-patient relationship is the foundation for helping people living with psoriasis and effectively managing their disease. Psoriasis is a chronic, inflammatory skin disease that affects approximately two percent of the United States population or roughly 7.5 million Americans. It is a complex immune-mediated disease that requires dermatologists to be up-to-date with all the available treatments in order to provide optimal care for our psoriasis patients. As a dermatologist specializing in the treatment of psoriasis, I work with patients at various stages of their disease progression, from those newly diagnosed with psoriasis, to patients who have lived with psoriasis for a number of years. I have witnessed how differently each of these subsets of patients copes with the disease and how the medical support required also varies. Because care depends on patients' disease severity and their environmental and social factors, we need to strive to provide individualized care for each patient to maximize therapeutic efficacy and align care goals with those of our patients. Following are strategies for understanding the needs and experiences of psoriasis patients with an eye toward better working with them to manage their disease. Though specifics will change, these strategies may prove useful for other chronic skin diseases, such as recalcitrant atopic dermatitis.

Most recently, Stefan C. Weiss, MD of the Weiss Skin Institute in Boca Raton and Fort Lauderdale, FL and I partnered with the National Psoriasis Foundation (NPF) and Janssen Biotech, Inc. on a national disease awareness campaign called Are You Serious?™ (SeriousAboutPsoriasis. com) that encourages patients to have open, frank, and regular communication with a dermatologist. The clinical approach of fostering meaningful dialogue with a patient is a medical practice that is validated by recent studies showing the value of individualized care and support (Journal of the American Academy of Dermatology, Feb. 2011). One study published in the Journal of Dermatological Treatment in 2010 found there is room to enhance physician and patient encounters, thus, an open line of communication with patients is important in helping them manage their disease. Psoriasis patients are continually seeking out perspective on disease symptoms and available treatment options (Journal of Dermatological Treatment, Jan. 2010). According to the NPF, patients report more satisfaction with their medical care when they are more informed about the disease.¹

Customizing Patient Care

A newly diagnosed patient seeking a unique in-office experience may require more time and attention, compared to an “experienced” patient living with psoriasis who may be more focused on continued disease management. One way I customize patient care in my practice is through teledermatology, which allows me to offer additional support to my patients who are unable to make in-office appointments. For example, I provide teledermatology services to patients across California in an effort to provide care to patients with moderate-to-severe psoriasis who live in remote regions of the state that do not have a dermatologist in their communities. Through live, interactive teledermatology, I am able to speak with the patient and their primary care providers directly through video-conferencing technology, recommend individualized treatment, and learn the socioeconomic context of the patient and his or her community.

To help better understand our patients' needs and encourage dialogue during appointments, I categorize encounters with psoriasis patients into three segments or stages:

• Newly Diagnosed – The best time to begin establishing a solid relationship with a patient is at their first appointment when he or she receives the diagnosis. When a patient hears “you have psoriasis,” it may be an overwhelming experience and can prompt a wide range of emotions. In most cases, newly diagnosed patients are unfamiliar with the disease, and therefore it's important that we provide them with disease-related information that will help them cope with the physical and emotional burdens. It is often helpful to direct them to educational resources, such as SeriousAboutPsoriasis.com and the NPF website, Psoriasis.org, that specialize in providing information to psoriasis patients so that new patients understand that they are not alone in their experience.

In addition, we need to provide our patient with detailed information regarding disease comorbidities and all available treatments. With the emerging literature on comorbidities associated with psoriasis, we need to inform our patients that they may be at increased risk for developing diabetes, hypertension, stroke, and myocardial infarction. Making sure that they have adequate primary care services to screen for cardiovascular risk factors is important. Providing our patients with the full range of currently available treatment options will help them work with you to select the treatment most appropriate for their disease severity and their lifestyle.

• The Fighter – Finding an effective treatment for psoriasis may take patients several months, even years, and we need to work with our patients over time to find what works best for them. This segment of patients has likely tried numerous therapies without experiencing optimal symptom relief. They may feel that we do not have effective options for them, and they may even be close to giving up on treating their psoriasis. Acknowledging their frustration is important before discussing the treatment options. This allows the patient to see that we understand their frustrations and that we are continually motivated to find an effective regimen. When offering the treatment options, be sure to discuss the benefits and the risks in the context of evidence-based data. For example, patients may be concerned about malignancy risks associated with certain biologic medications. Explaining to patients in precise terms what those risks are, the difference between absolute and relative risks, and the collective evidence-based medical experience will help put these concerns in context. Because risk tolerance is different among patients and even among dermatologists, open discussions with evidence-based data are important. This discussion will help both the clinician and patient determine the exact benefit-risk ratio for each patient.

• The Expert – Meeting with patients who have their disease under satisfactory control is a gratifying experience. For the most part, these routine check-ups consist of discussing if the patient has experienced changes in symptoms. For many patients, having their psoriasis under control motivates them to become advocates for the disease. Continue to provide support as needed to these patients and encourage them to stay active in the psoriasis community. As the “psoriasis expert,” this person may serve as a mentor or role model to other people living with psoriasis (like the “newly diagnosed” and “fighter” patients) and may empower others to take control of their disease.

Exploring a Case

More than 20 years ago, Todd Bello of Long Island, NY was diagnosed with plaque psoriasis. Mr. Bello was 28 years old when he started experiencing psoriasis symptoms. Within a few months, the plaques covered 90 percent of his body, and his overall physical discomfort severely worsened. When Mr. Bello was first diagnosed, he struggled to understand how the disease would impact many aspects of his life, including his family and job. Over the years, Mr. Bello has experienced what it feels like to be a newly diagnosed patient, then transitioning to a patient searching for an effective treatment, and most recently, a patient who has found an effective treatment. Before finding a treatment that worked for him, Mr. Bello remembers the negative impact his psoriasis had on several occasions, specifically when he was asked to leave his local barber shop because of the flakes on his scalp.

The road to relief has not been an easy one for Mr. Bello, but he credits much of his success to his dermatologist for helping him cope with the disease over the years. Having the support from his dermatologist inspired Mr. Bello to not give up on finding an effective treatment option, which he finally found several years ago. Since experiencing symptom relief, Mr. Bello is now an active volunteer with the NPF and participant in Are You Serious?™ (SeriousAboutPsoriasis.com). The campaign motivates people living with psoriasis to share the personal moment or experience that inspired them to get serious about psoriasis and work with their dermatologist towards taking control of their symptoms. As part of his involvement, Mr. Bello shared his story with the Psoriasis Storytellers Network available on the campaign's website and encourages all fellow patients to have open and honest conversations with a dermatologist about the disease.

Getting Your Patients Serious About Psoriasis

We often hear that psoriasis patients minimize their disease-related experiences—specifically some of the deep emotional aspects that we cannot uncover without asking. Consider this approach: for many patients, there is a moment that remains engrained in their memory as an experience that motivated them to get serious about the disease. Whether it happens at a local barber shop or at the gym or mall, these moments may be the reason they're sitting in your office and shape the way patients manage their disease.

In the past several months, Dr. Weiss and I have read through hundreds of serious about psoriasis stories just like Mr. Bello's on the Psoriasis Storytellers Network. It's been eye opening to hear how patients feel judged by the public and long for constant support and people to lean on in tough times. The stories further validate the need to nurture patients during their journey with psoriasis, which is an inherent part of our job as dermatologists.

Are You Serious?™ (SeriousAboutPsoriasis.com) enables patients to share and relate with others who may be in the same shoes or have had similar experiences. It is also meant to bring public awareness to the disease and educate others on the physical and emotional impact of the disease so there is greater acceptance and understanding. Dr. Weiss and I contribute monthly posts on a number of topics, including tips on building a support network and finding a dermatologist. Invite your patients to visit the campaign website to learn from others and share their serious about psoriasis story on the Psoriasis Storytellers Network. By sharing their story, they'll also receive a free kit, which includes a disease management journal, body lotion and awareness bracelet.

Continue to Be a Patient Advocate

One of the greatest rewards is when our patients have effectively managed and controlled their disease. Consider taking a unique approach to help your patients stay on course—continue to be their number one advocate, guide them towards living well with psoriasis, and inspire them to become the “experts.”

Dr. Armstrong has no relevant disclosures.

April W. Armstrong, MD MPH is Director of the Dermatology Clinical Research Unit and Director of Teledermatology at University of California Davis.

1. National Psoriasis Foundation. Information and resources for medical professionals. Available at: http://www.psoriasis. org/health-care-providers. Accessed on May 24, 2012.