Brandon Kee has practically lost count of the number of diseases and conditions that trouble him.
The first sign that something was amiss appeared when he was 15. What looked like a nail fungus was identified as nail psoriasis, and within a week, scaly patches appeared on his knees and elbows.
In the following decades after his initial diagnosis with psoriatic disease, Kee, now 44, has lived, worked and coped with multiple, overlapping disorders requiring the care of an army of specialists. In addition to severe psoriasis and psoriatic arthritis (PsA), he needs ongoing treatment for spondylitis (arthritis affecting the spine), depression, uveitis (an inflammatory condition affecting the tissues in the middle of the eye), Crohn’s disease and other digestive disorders. And the list, distressingly, goes on.
Kee spends a lot of time in bed, trying to find windows of pain-free time and getting as much high-quality sleep as he can. And he still works full time as the digital marketing manager for his family’s real estate business in Arlington, Texas.
Pain is Kee’s top concern, with fatigue following close behind. “Fatigue is almost as debilitating as pain. Mornings are the worst,” he said. “I make a pot of coffee first thing, and it takes me all day to drink it. Sometimes I feel as if I wake up just to go back to sleep, but I fight that impulse, and by afternoon I’m usually pretty functional.”
Kee has identified a wealth of coping strategies to mitigate pain and stress, such as mild yoga and workouts he can perform in bed. His two canine best friends, Shelby and Gypsy, provide comfort and companionship to keep anxiety at bay. He is surrounded by a big, loving family and is an optimist whose positive outlook and emotional generosity are always on tap. He also finds enormous joy in his work, including his volunteer efforts for the NPF, and in his sense of support and connection with others in the “PsO” community. “I’m happy!” he said.
Kee’s psoriasis has long since cleared, thanks to Cosentyx (secukinumab), the biologic drug he’s on. But in every other respect, he’s the poster child for psoriatic disease at its most destructive. Like many people in his predicament, he has a long wish list of treatment outcomes.
Many of his treatment priorities were echoed by the 41 people with PsA who enrolled in a recent study at five hospitals in the U.K. William Tillett, M.D., consultant rheumatologist at the Royal National Hospital for Rheumatic Diseases in Bath, who doubles as senior lecturer in pharmacy and pharmacology at the University of Bath, presented the study’s main finding in the February 2017 issue of The Patient: a significant mismatch between patients’ concerns and the criteria physicians use to assess their patients. While there was plenty of overlap between doctors’ and patients’ perspectives, many patients voiced concerns that aren’t typically assessed by doctors.
Among more than 60 outcomes identified by patients enrolled in eight focus groups, pain emerged as the most important goal of medical treatment, with fatigue ranked second among study participants’ top concerns. Yet rheumatologists don’t generally identify fatigue as an outcome measure, and they don’t typically single it out for treatment.
Traditionally, Tillett explained, in assessing PsA, physicians have focused on two main factors: the number of joints affected by the disease and elevated inflammatory markers in the blood. “Neither of these is a true measure of disease activity in PsA,” he said. “Neither of them lines up neatly with the severity of symptoms experienced and reported by patients.”
“We’ve been guessing a lot,” said Tillett. “Even our best assessment tools for PsA have been created largely without the input of patients. If we want to deliver on the promise of patient-centered medicine, the way we identify and measure outcomes has to change.”
Tillett and his colleagues settled on the idea of using focus groups to understand what patients care about. What they found was a potential mismatch between patients’ and physicians’ definitions of successful treatment — a mismatch that could negatively affect the patient-clinician relationship and patients’ willingness to stick with their treatments.
Tillett’s team, whose research was funded by the U.K.’s National Institute for Health Research, intends to expand its investigation of patients’ concerns through larger studies. Even so, said Tillett, the current data support the conclusion that PsA assessments should incorporate the perspectives of both patients and physicians, with an emphasis on measures of inflammation in the skin and joints, quality of life and physical function.
Many people with PsA have comorbidities that may dramatically affect their quality of life. Kee, for instance, requires treatment for multiple disorders, from anxiety to Crohn’s disease. Just staying on top of his many medical appointments is a challenge, “but it’s hard to get my doctors to talk to each other. Sometimes, I feel as if no one’s minding the store,” he said. In other words, who is looking out for the whole Brandon Kee?
The gap between needs and care
Kee has a family history of diseases related to the immune system, as does Jennifer Pellegrin, a native of Riverside County in Southern California who has severe psoriasis, turning her skin into a minefield of pain, burn and itch. “I feel as if someone has taken a razor and sliced my skin,” she said.
Both Kee and Pellegrin were diagnosed with psoriasis at age 15. Both also have PsA. But that’s where their stories diverge.
Pellegrin, now 33, lost her health insurance after her divorce in 2008. Since then, she hasn’t had access to treatment with biologic drugs, nor has she been able to qualify for a clinical trial. She relies on ibuprofen, heat patches when it’s cold outside and “tons of lotion.”
The reality is that many people like Pellegrin often receive suboptimal treatment, or no treatment at all.
The phenomenon of undertreatment was highlighted in a large-scale survey of psoriasis and PsA in the U.S., part of the Multinational Assessment of Psoriasis and Psoriatic Arthritis survey that is still under way. The U.S. findings were published in the January 2016 issue of The American Journal of Clinical Dermatology, co-authored by Mark Lebwohl, M.D., the Waldman Chair of Dermatology at the Icahn School of Medicine at Mount Sinai and chair emeritus of the NPF Medical Board. The study, a population-based survey of patients, dermatologists and rheumatologists, aims to gain a clear understanding of the unmet needs of individuals with one or both diseases.
In addition to undertreatment, the survey found a high rate of dissatisfaction with treatment among people living with psoriasis (52.3 percent) and PsA (45.5 percent), citing inadequate insurance coverage, cost and concerns about side effects as the main reasons they discontinue biologic therapy.
“We discovered that we’re treating 75 percent of our patients with little more than creams and ointments at a time when we have the ability to clear the disease with advanced medications,” said Lebwohl. “Cost is certainly part of the problem, but we can usually figure out how to get drugs to patients one way or the other, through discounted programs or clinical trials.”
Some people, like Pellegrin, are ineligible for clinical trials and fall between the cracks. For many, however, the treatment gap comes primarily from the way patients and physicians alike perceive the potential dangers of biologic drugs, said Lebwohl.
“All medications have side effects, and [some] biologic drugs are still too new for us to know what their lifetime effects may be,” said Lebwohl. “What we’ve recently learned is that patients on TNF [tumor necrosis factor] blockers live longer on average than those who aren’t on them.”
Interestingly, he added, these drugs can also reverse joint damage and counter fatigue — both chief concerns for people with PsA. Individuals with major concerns about fatigue and future joint damage may decide that the benefits of taking a TNF blocker outweigh the risks.
Undertreatment is somewhat less marked among people with PsA compared with those with psoriasis alone, but the survey found that their needs, too, are inadequately met.
“PsA is difficult to diagnose,” Lebwohl said. “It can be hard to distinguish it from other arthritic diseases, especially in its early stages. Too often, dermatologists fail to connect their patients’ skin and joint symptoms. In our survey, fewer than 60 percent of dermatologists discussed the risk of developing PsA with their patients who already have psoriasis, and rheumatologists reported delayed referrals of PsA patients by their dermatologists.”
The importance of communication
The situation can be improved, said Lebwohl, through clearer and more abundant communication, in the doctor’s office, at conferences and through patient-focused organizations and networks such as NPF. Patients and their physicians should communicate regularly and often, and the conversation should flow both ways, he said. He’s a strong advocate of the “co-management of patient care among dermatologists and rheumatologists to ensure that those with psoriasis are adequately screened and further assessed for the presence of psoriatic arthritis.” One recommendation is for dermatologists and rheumatologists to find ways to educate one another and function as members of the same medical team, perhaps starting with a simple phone call.
“Receiving treatment from several specialists can create confusion around roles and decision-making,” Lebwohl added, a state of affairs that cries out for better communication among health care professionals across all specialties. Patients, too, can do their part by taking the idea of patient-centered care seriously and keeping every member of their medical team apprised of changes in their medications, symptoms and concerns.
Driving Discovery, Creating Community
This year, we’re celebrating 50 years of driving efforts to cure psoriatic disease and improve the lives of those affected. See how far we’ve come with this timeline of NPF’s history. But there’s still plenty to do, and we can’t do it without you! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funding to promote research into better treatments and a cure by joining Team NPF, where you can walk, run, cycle, play bingo or even create your own DIY event. Contact our Patient Navigation Center for free, personalized support for living a healthier life with psoriatic disease. And keep the National Psoriasis Foundation going strong by making a donation today! Together, we will find a cure.